Tuesday 9th January 2018
Kingston ACU
Kingston Hospital, London
It's been nearly three weeks since our BFN. I've been feeling a bit more positive about things over the last few days, I guess that's because the acute agony we suffered post IVF is becoming a lousy memory that we can now slowly move on from. I won't say it's been easy - I've had some really low days over Christmas and New Year - but it's definitely becoming less painful. Until today.
The day didn't start too well when we arrived at Kingston Hospital and the car park was rammed as usual. After driving round for 15 minutes and getting increasingly more stressed with the other frustrated drivers, I decided to head in to our appointment on my own. I hadn't been in the waiting room more than five minutes before I was called in, typically the one day I was hoping they were running late. Sitting there feeling extremely vulnerable, the consultant went through all my blood tests and scans over the past few months and told me the results were extremely disappointing for someone of my age (no shit!). She told me I was still young in terms of IVF years but my AMH levels were as low she'd expect to find in someone in their late 40's, someone 10 years older. She asked if there was a history of early menopause in my family, to which I replied there was; Mum was 45 when she went through 'le change'. Although it's been discussed between my mother and I, especially recently, I hadn't really considered that I might have already entered perimenopause. I had hoped unrealistically that it wasn't heritable.
My AMH and FSH levels have been fluctuating over the last few months so she advised that it might not be worth us spending thousands of pounds on another round of IVF, I could get another month like the last where there was pretty much zero response from my ovaries. By this point, I was close to tears so I was relieved when Jon interrupted the delicate conversation about my failing female bits and asked to join us on speaker phone (still no luck with the car park).
Because they had already given me the maximum allowed dose of stims (Menopur 450IU), the consultant said there's not a whole lot they could change if we were to try again with another round. They don't advise to inject that amount of hormones for longer than a few days; it's not good for anyone, let alone someone of my diminutive stature and especially someone with a history of endometriosis. She suggested leaving my body to recover for a few weeks and get my bloods tested again when we felt ready to take the next step, if indeed there is to be one. She mentioned that if we were to try again, using donor eggs might give us more of a chance. We have already talked about this as a possibility but my head isn't quite there yet, I'm not done with grieving my own fertility and I'm not sure I'm ready to give up on my crappy eggs. We have a lot to talk about but unfortunately, unless we have a miracle (and I realise they do happen!) it's looking highly unlikely I'll ever be a biological mother.
After stopping for the obligatory post-appointment sob in Petersham Car Park, I dropped Jon off in Richmond and made my way into work. I felt numb and mentally exhausted and wanted to be anywhere in the world than sitting at my desk putting on a brave face. I pushed through the day and when I got home I had a big cuddle from Jon followed by a very large Gin and Tonic.
Showing posts with label Hospital. Show all posts
Showing posts with label Hospital. Show all posts
Tuesday, 9 January 2018
Wednesday, 6 December 2017
Embryo Transfer
Wednesday 6th December 2017
King's FertilityKing's College Hospital, London
I am officially PUPO! This is the closest I've ever come to being pregnant (as far as I know) and I'm not going to lie, it makes me feel a little warm inside. Initially, I was concerned about the two-day transfer as I'd not heard of this before, everyone talks about 3dt or a 5dt but never a 2dt. Why did they want to put it back so early? The reason, we found out during the transfer, was because we only had one egg and the best place for it to continue to fertilise and grow is back in the uterus. If you have more eggs to play with, they will try and nurture them in the lab until day five as they say you have more chance of pregnancy success with a blastocyst. The embryologists can also learn more about the quality of the embryo if it makes it to this stage. I guess they didn't want to risk losing my egg in a petri dish so decided to put it back where nature intended.
For me, the transfer itself was the least stressful stage of this process. I think I was so happy to have made it this far, I was glowing and couldn't wait for our embryo to be back where it belonged - I was even belting out Queen songs on the way in the car! Mr B on the other hand, did not find this part enjoyable at all. After a stressful wait to get into the tiniest hospital car park, I could feel the tension in our cubicle as we were delayed another hour on the ward at King's College Hospital. The nurses seemed a little disorganised and in a muddle about who was supposed to be going into theatre next which only added to his angst. Jon was also quite emotional which I think surprised him (and me!), he was really suffering in the run up to our transfer. I was just keen to get on with things as I had a full bladder that was getting extremely uncomfortable.
Eventually, after much confusion, we were called into the theatre room. I was surprisingly nonchalant as I clumsily climbed onto the bed and put my legs into the stirrups. It felt like I was in this graceless position with my nethers on show to the whole room for an awfully long time while the consultant went through the procedure, but she did make everything as relaxed as possible for both of us and I felt an incredible calmness. There was a screen on the wall where we could see live images of our embryo in the petri dish in the lab next door, she told us that it looked good (four equally divided cells) for a two-day embryo with little fragmentation. Both of us were completely overwhelmed at this point as reality sunk in that we had made this microscopic seed (with the help of a little bit of science) and it could potentially grow into our very own human. We watched the little dot being sucked up into what looked like a long pipette type receptacle and and a few seconds later, the embryologist emerged from the lab carefully holding the catheter containing our embryo.
I was expecting to find the procedure as uncomfortable as the trial embryo transfer I had experienced a few weeks ago, but I hardly felt a thing as they passed the tube through my cervix and placed the seed into its new home. I knew it was silly but I still asked the consultant if there was any danger of it falling out, to which she said, think of it as a sesame seed stuck in a peanut butter sandwich! After we watched the embryologist check the catheter under the microscope to check it hadn't gotten stuck, we were given the all clear to go.
As soon as we were back in our cubicle, Jon was overcome with emotion and it was a really poignant and touching moment. I was just grinning like a Cheshire cat who desperately needed to pee!
On the way home we stopped at Maccy D's, it's an old wives tale that the salt on McDonald's fries help implantation and some women swear by it. I have no idea how this superstition is supposed to work but do I care? No, it was guilt-free excuse to visit the golden arches if nothing else!
Tuesday, 5 December 2017
Egg News
I've been sick with nerves all morning while waiting for the call from Jon. He's just spoken to the embryologist and...
Our precious little egg has fertilised!
Another hurdle crossed. Another box ticked. Another stage completed. How we've ever got this far is beyond belief, but we're here and I've been called in to King's for transfer tomorrow. Hang on a minute...
Tomorrow?
Our precious little egg has fertilised!
Another hurdle crossed. Another box ticked. Another stage completed. How we've ever got this far is beyond belief, but we're here and I've been called in to King's for transfer tomorrow. Hang on a minute...
Tomorrow?
Monday, 4 December 2017
Egg Collection
Monday 4th December 2017
Kingston ACU
Kingston Hospital, London
I was trying not to stress while we were sitting for 50 minutes in rush hour traffic on the way to Kingston Hospital this morning. Luckily we'd left plenty of time to tackle the short 4.3 mile drive and we still arrived at the ACU on time. I decided to listen to my Mindful IVF app whilst we were in the waiting room, to try and divert my thoughts from the upcoming procedure to... well anything else really. We'd had a really tough couple of days, it was difficult to take our minds off the upcoming hurdles that we were facing this week, no matter how hard we'd tried to keep busy. My mum came down for the weekend and went to see Paddington 2 at the cinema, it was good to absorb ourselves in a charming CG world and away from reality for a couple of hours.
Five minutes into focusing on my breathing, we were called into the recovery ward where we met a nurse called Hayley. I was first up (again) so I was the only patient on the ward for twenty minutes or so. Jon helped me change into the flattering hospital gown, fumbling with the ties as usual, and we were greeted by the consultant Mr Tom Brooker. He was overly zealous but reassuring as he made sure we were happy with what would happen during the impending procedure. It's a minor op which involves a needle being passed through the vaginal wall and into the ovary to retrieve the egg. The anaesthetist then did his rounds and of course he was charming, anaesthetists really are the loveliest people on the planet!
Half an hour after I'd walked into the theatre room, I was back on the ward and as I started to regain consciousness, I started to feel groggy and restless. I wanted to know where my husband was and the nurse gently informed me that he was already gone. He was on his very own Challenge Anneka type mission with our silver box, which could only mean one thing... they managed to retrieve an egg! Unbeknown to me, I had already had a totally gibberish conversion with him before he left and I had specifically asked him to take a photo of the box on the train! I have no recollection of seeing him, nevermind any chat, but he is a good husband and he duly obliged!
My euphoric state lasted a few short minutes before I was back into panic mode again. What if he couldn't produce the goods on the day? I thought about texting him but decided against it as it probably wouldn't help his pre-performance nerves.
The IVF process is hard for partners, they largely get overlooked as it's mostly all about the lady. Until now. It's a huge chunk of pressure to place on a man, if he gets stage fright, the whole cycle fails. I started to think that we should have thought about freezing some sperm as back up in case he fluffs his lines. Having proved I was recovering nicely from the sedation by drinking adequate amounts of water and eating a dry biscuit, I was now back in the waiting room watching my phone in anticipation of a call from the boy. It was an agonising wait and one by the one the other ladies started trickling back in from the ward, looking spaced out and as equally anxious.
Two hours after my egg collection I finally received a message saying all was well and he was waiting for the analysis before he was allowed to leave. I was laughing out loud at this text exchange, much to the bafflement of the other women in the room, it felt really good to smile again.
Around forty-five minutes after that text conversation, he called to say he was on his way back to the hospital to collect me. The semen analysis showed that he had super duper swimmers, at least one one of us is working perfectly! The relief I felt at that moment was immense, after all the diagnoses and disappointments, everything had gone as well as we'd possibly hoped today and I couldn't wait to give my boy a massive cuddle. I know people talk about proverbial roller coasters but our experience of IVF so far has certainly been just that - a bloody high one. We've done all we can and we now have an agonising wait for a phone call from the embryologist in the morning to hear if our egg has made it through the night. Come on little one!
Kingston ACU
Kingston Hospital, London
I was trying not to stress while we were sitting for 50 minutes in rush hour traffic on the way to Kingston Hospital this morning. Luckily we'd left plenty of time to tackle the short 4.3 mile drive and we still arrived at the ACU on time. I decided to listen to my Mindful IVF app whilst we were in the waiting room, to try and divert my thoughts from the upcoming procedure to... well anything else really. We'd had a really tough couple of days, it was difficult to take our minds off the upcoming hurdles that we were facing this week, no matter how hard we'd tried to keep busy. My mum came down for the weekend and went to see Paddington 2 at the cinema, it was good to absorb ourselves in a charming CG world and away from reality for a couple of hours.
Half an hour after I'd walked into the theatre room, I was back on the ward and as I started to regain consciousness, I started to feel groggy and restless. I wanted to know where my husband was and the nurse gently informed me that he was already gone. He was on his very own Challenge Anneka type mission with our silver box, which could only mean one thing... they managed to retrieve an egg! Unbeknown to me, I had already had a totally gibberish conversion with him before he left and I had specifically asked him to take a photo of the box on the train! I have no recollection of seeing him, nevermind any chat, but he is a good husband and he duly obliged!
My euphoric state lasted a few short minutes before I was back into panic mode again. What if he couldn't produce the goods on the day? I thought about texting him but decided against it as it probably wouldn't help his pre-performance nerves.
The IVF process is hard for partners, they largely get overlooked as it's mostly all about the lady. Until now. It's a huge chunk of pressure to place on a man, if he gets stage fright, the whole cycle fails. I started to think that we should have thought about freezing some sperm as back up in case he fluffs his lines. Having proved I was recovering nicely from the sedation by drinking adequate amounts of water and eating a dry biscuit, I was now back in the waiting room watching my phone in anticipation of a call from the boy. It was an agonising wait and one by the one the other ladies started trickling back in from the ward, looking spaced out and as equally anxious.
Two hours after my egg collection I finally received a message saying all was well and he was waiting for the analysis before he was allowed to leave. I was laughing out loud at this text exchange, much to the bafflement of the other women in the room, it felt really good to smile again.
Around forty-five minutes after that text conversation, he called to say he was on his way back to the hospital to collect me. The semen analysis showed that he had super duper swimmers, at least one one of us is working perfectly! The relief I felt at that moment was immense, after all the diagnoses and disappointments, everything had gone as well as we'd possibly hoped today and I couldn't wait to give my boy a massive cuddle. I know people talk about proverbial roller coasters but our experience of IVF so far has certainly been just that - a bloody high one. We've done all we can and we now have an agonising wait for a phone call from the embryologist in the morning to hear if our egg has made it through the night. Come on little one!
Friday, 1 December 2017
Scan Two
Friday 1st December 2017
Kingston ACU
Kingston Hospital, London
Today has been one of the toughest days I've had to get through since we said goodbye to my darling Dad exactly two years ago.
Alongside the sadness that comes with every anniversary, I was feeling calm but not too expectant as we once again got in the car to go to the hospital for another follicle monitoring scan. The initial bloating I had experienced 5-6 days ago had now pretty much subsided and I had expressed my concerns to Jon about the lack of discomfort a couple of days previously. Surely I should feel like my ovaries were ready to explode after seven days of stimulation injections? Luckily for Jon, I've had no manic outbursts, although part of me wished I had felt in the mood to throw a few pans around - at least I'd have some indication that the hormones were working.
I've always had a realistic outlook on life and today was no different, we can't change the situation and it's completely out of our hands. The inner control freak in me tried to remember this as I was laying on the bed with an ultrasound probe up my noo noo. I could feel my hopes slowly depleting the longer I laid there, the nurse was certainly having a good look around, I was starting to wonder if she could find anything at all. Eventually she said she was going to get the doctor to get a second opinion, as was always the case with a low follicle count. There, she had said it.
It seemed like an eternity before they both returned, but hardly any time for the doctor to confirm there was only one possible plan going forward. There was one lonely follicle which was considered 'ready' in my right ovary, the rest (maybe two or three) were non-runners, too small and extremely unlikely to grow to maturity, even if I kept up with the stim injections. I was devastated.
In the time it took me to re-robe reality had sunk in and I was fighting back tears. I was trying to keep it together so I could remember everything the nurse was telling me, Jon held my hand as he could see I was getting increasingly distressed and by the time we had sat down, I was inconsolable. The nurse was asking me questions but eventually offered to just talk so I could compose myself. We were told the plan was to bring egg collection forward to Monday, if we leave it any longer the one ripe follicle could become over-mature and we could lose it.
Back the waiting room I became more aware of all the couples who were a similar age to us, I was wondering if they'd had more promising news than we'd just been dealt. Regardless of their situations, everyone was there for the same reason, clutching their bags of medication and looking decidedly anxious. Thankfully, after a short wait we were called back in to see the doctor to go through the protocol for the weekend. The plan is to carry on today as we have been; three Suprecur nasal sprays and two Menopur injections. Tomorrow night, the stim injections will be replaced by a trigger injection (hCG) which has to be administered exactly 36 hours before egg collection. This induces the final maturation of the egg inside the follicle, if indeed there is one. I'm even starting to have doubts about that.
As we were leaving the hospital, we passed a lady pushing twins in a buggy, it was almost too much to bear. By the time we got to the car I was sobbing and I don't think anyone could've said anything to make me feel any better at that point. We drove to a car park in Richmond Park so we could have a chat (and another good cry). I wanted to go home and curl up in a ball on the sofa but I came to the conclusion that going into work and keeping busy would be the best option. I'm glad I made the call to be around people and not restrict myself to my own thoughts today, I'm definitely feeling a smidge more positive tonight.
So this is the hand we've been dealt. I'm completely heartbroken there will be no frozen embryos to have another shot if this one fails. This is it.
Aside from myself and Jon, the other person I'm really feeling for today is my Mum. Not only is she mourning her husband, I've just had to tell her our dreadful news. It has crossed my mind that we might not ever be able to make her a Nanna. For that, I feel awful.
Kingston ACU
Kingston Hospital, London
Today has been one of the toughest days I've had to get through since we said goodbye to my darling Dad exactly two years ago.
Alongside the sadness that comes with every anniversary, I was feeling calm but not too expectant as we once again got in the car to go to the hospital for another follicle monitoring scan. The initial bloating I had experienced 5-6 days ago had now pretty much subsided and I had expressed my concerns to Jon about the lack of discomfort a couple of days previously. Surely I should feel like my ovaries were ready to explode after seven days of stimulation injections? Luckily for Jon, I've had no manic outbursts, although part of me wished I had felt in the mood to throw a few pans around - at least I'd have some indication that the hormones were working.
I've always had a realistic outlook on life and today was no different, we can't change the situation and it's completely out of our hands. The inner control freak in me tried to remember this as I was laying on the bed with an ultrasound probe up my noo noo. I could feel my hopes slowly depleting the longer I laid there, the nurse was certainly having a good look around, I was starting to wonder if she could find anything at all. Eventually she said she was going to get the doctor to get a second opinion, as was always the case with a low follicle count. There, she had said it.
It seemed like an eternity before they both returned, but hardly any time for the doctor to confirm there was only one possible plan going forward. There was one lonely follicle which was considered 'ready' in my right ovary, the rest (maybe two or three) were non-runners, too small and extremely unlikely to grow to maturity, even if I kept up with the stim injections. I was devastated.
In the time it took me to re-robe reality had sunk in and I was fighting back tears. I was trying to keep it together so I could remember everything the nurse was telling me, Jon held my hand as he could see I was getting increasingly distressed and by the time we had sat down, I was inconsolable. The nurse was asking me questions but eventually offered to just talk so I could compose myself. We were told the plan was to bring egg collection forward to Monday, if we leave it any longer the one ripe follicle could become over-mature and we could lose it.
Back the waiting room I became more aware of all the couples who were a similar age to us, I was wondering if they'd had more promising news than we'd just been dealt. Regardless of their situations, everyone was there for the same reason, clutching their bags of medication and looking decidedly anxious. Thankfully, after a short wait we were called back in to see the doctor to go through the protocol for the weekend. The plan is to carry on today as we have been; three Suprecur nasal sprays and two Menopur injections. Tomorrow night, the stim injections will be replaced by a trigger injection (hCG) which has to be administered exactly 36 hours before egg collection. This induces the final maturation of the egg inside the follicle, if indeed there is one. I'm even starting to have doubts about that.
As we were leaving the hospital, we passed a lady pushing twins in a buggy, it was almost too much to bear. By the time we got to the car I was sobbing and I don't think anyone could've said anything to make me feel any better at that point. We drove to a car park in Richmond Park so we could have a chat (and another good cry). I wanted to go home and curl up in a ball on the sofa but I came to the conclusion that going into work and keeping busy would be the best option. I'm glad I made the call to be around people and not restrict myself to my own thoughts today, I'm definitely feeling a smidge more positive tonight.
So this is the hand we've been dealt. I'm completely heartbroken there will be no frozen embryos to have another shot if this one fails. This is it.
Aside from myself and Jon, the other person I'm really feeling for today is my Mum. Not only is she mourning her husband, I've just had to tell her our dreadful news. It has crossed my mind that we might not ever be able to make her a Nanna. For that, I feel awful.
Friday, 24 November 2017
Down-Regulation Scan
The witch arrived a few days ago. On one hand this is fantastic news because it means I can go ahead with the next stage of my treatment, the flip side, I've been suffering with the usual stomach cramps and trauma that comes with this time in my cycle. Pair this with a tortuous liquid diet and a throbbing hole in my mouth where my gum used to be and you have a perfect recipe for self-pity and utter misery.
Once I'd manage to pull myself out of my pit of gloom, I booked my down-regulation scan for this morning. This was another internal ultrasound scan (hello Wanda!) which is carried out to ensure that my lining is thin and my ovaries are quiescent after the down-regulation phase (in my case, sniffing). My scan today confirmed both so we're finally ready to start the stimulation stage.
I don't have a phobia of needles, I can quite happily look down at my arm during a blood test, but something about self-administering fills me with complete fear. I had asked Jon during a conversation a few weeks ago if he could do the injections for me. Unsurprisingly, he wasn't particularly keen but unfortunately it is a necessity so one of us has to be brave. As I'm the one getting punctured, it seems only fair that he plays the nurses role. "It'll be nice for you to be involved at this stage" I keep telling him!
As I mentioned in a previous post, my stimulation protocol is 450IU of Menopur, the highest approved dose in the UK. Menopur comes in vials of 75IU so I need six of these mixed with two bottles of solvent, this means two injections with 225IU in each. After the scan a very steely nurse (that's being kind, she had no compassion whatsoever) showed us how to mix the injections and she administered the first two, one in each thigh. It actually stung more than I was expecting so I think we're going to try in my tummy tomorrow night, there's definitely more flab to grab there!
I read the patient information leaflet a few days ago and aside from the usual instructions on what to do if you take too much/miss a dose/get DVT, I came across this section:
WTF?!
Today was another one of those days crammed full of appointments. After my first injection lesson, I scooted across SW London for another dental check-up in another hospital with yet another dentist. She admitted the lady who had performed the surgery nine days ago had made a bit of a cock-up (not her exact words) and my gums were a mess. Fantastic.
I also went to my first acupuncture session which I thoroughly enjoyed and found very relaxing. Victoria spent a long time going through my health and fertility history before deciding on which areas to concentrate on. I don't know if it's going to improve my chances of IVF success, it did however, make me feel less stressed and more calm, which has got to be a good thing.
Once I'd manage to pull myself out of my pit of gloom, I booked my down-regulation scan for this morning. This was another internal ultrasound scan (hello Wanda!) which is carried out to ensure that my lining is thin and my ovaries are quiescent after the down-regulation phase (in my case, sniffing). My scan today confirmed both so we're finally ready to start the stimulation stage.
I don't have a phobia of needles, I can quite happily look down at my arm during a blood test, but something about self-administering fills me with complete fear. I had asked Jon during a conversation a few weeks ago if he could do the injections for me. Unsurprisingly, he wasn't particularly keen but unfortunately it is a necessity so one of us has to be brave. As I'm the one getting punctured, it seems only fair that he plays the nurses role. "It'll be nice for you to be involved at this stage" I keep telling him!
As I mentioned in a previous post, my stimulation protocol is 450IU of Menopur, the highest approved dose in the UK. Menopur comes in vials of 75IU so I need six of these mixed with two bottles of solvent, this means two injections with 225IU in each. After the scan a very steely nurse (that's being kind, she had no compassion whatsoever) showed us how to mix the injections and she administered the first two, one in each thigh. It actually stung more than I was expecting so I think we're going to try in my tummy tomorrow night, there's definitely more flab to grab there!
I read the patient information leaflet a few days ago and aside from the usual instructions on what to do if you take too much/miss a dose/get DVT, I came across this section:
1. What Menopur is and what it is used for
What Menopur is
Menopur contains a medicine called menotrophin. This is a mixture of hormones obtained from the urine of women who have passed the menopause.
WTF?!
Today was another one of those days crammed full of appointments. After my first injection lesson, I scooted across SW London for another dental check-up in another hospital with yet another dentist. She admitted the lady who had performed the surgery nine days ago had made a bit of a cock-up (not her exact words) and my gums were a mess. Fantastic.
I also went to my first acupuncture session which I thoroughly enjoyed and found very relaxing. Victoria spent a long time going through my health and fertility history before deciding on which areas to concentrate on. I don't know if it's going to improve my chances of IVF success, it did however, make me feel less stressed and more calm, which has got to be a good thing.
Sunday, 19 November 2017
Natural Products, Nasal Spray & Needles
The last few weeks have flown and I'm already roughly halfway through my five week protocol (originally six weeks but my stupid period had other ideas). I've been through quite a time of it in the three weeks since my last post, some of it completely unrelated to endometriosis or IVF.
I started taking the contraceptive pill in preparation for treatment, which allows the fertility consultant to have complete control over timings of my cycle. It is also said to help the ovaries respond better to the stimulation medication and to decrease the chances of cysts forming which could delay proceedings. It's common for ladies with endometriosis to have ovarian cysts, so while taking the pill seems counter-intuitive, I can kind of see the logic.
During the two weeks I was on the pill, I took the decision to inform my bosses about my IVF cycle. Initially, I thought I might try and go through the treatment without having to tell anyone at work, but after getting some positive experiences from ladies on a facebook group, I decided to bite the bullet. I have two bosses, one of each sex, so naturally I resolved to approach my manager, who is female. I'm not even sure why I was worried, I've been at the company for 11 years and I'm fortunate that Louise and I have a good relationship. I couldn't have asked for her to be more understanding and supportive and as soon as I'd blurted everything out to her, I felt the weight lift off my shoulders. I can't express what a relief it is to have her backing and she promised she would do everything to help make the next few weeks as painless as she could with regards to time off for appointments. She also said she would talk to our Head of Dept and I knew he would be as equally empathetic.
A couple of weeks ago I had an appointment at the ACU for my trial embryo transfer. Part of me was glad to be having this dummy run, obviously if there were complications I'd rather they were flagged now, but what if it was excruciatingly painful? I'd just be worrying and dreading the real thing the whole way through my treatment. As we all know and get told on a regular basis, stress is not good for the process of baby making. Relax and it'll happen! *rolls eyes*
Again, I had to wait an hour for my appointment at Kingston ACU. I appreciate it's an NHS clinic and they're busy but when you have to go into work afterwards and give an approximate time when you might be there, this is extremely frustrating. Especially as my bosses have been so understanding, I didn't want it to feel like I was already exploiting their kindness. While I was in the waiting room I observed a guy looking very uneasy as he walked out holding a metal box containing his partner's eggs, on his way to King's to (hopefully) add his part to the science. I have to admit, this did make me smile.
The procedure itself was like a more painful smear test, as opposed to the nightmare hysteroscopy I had gotten myself worked up about. Thankfully it was over relatively quickly and without complication so we're good to go.
One way I like to unwind and destress is by having a glass of wine (or three). Following on from my abstention of caffeine, I decided to set a date to forgo my beloved Sauv Blanc before I started my down-regulation drugs. I ringed the 8th November in my diary to start my dry couple of months (hopefully longer). We had tickets to see both Kevin Morby at the Electric Ballroom and Father John Misty at Hammersmith Apollo the week before so we earmarked the latter as our last hurrah! Jon has decided to join me in this period of detox, after all, the health of his swimmers is also vital and we're certainly in this as a partnership. We might as well throw everything at this cycle as we only have one shot at this.
I have also been reading the book 'It Starts with the Egg', which I'm sure every IVF couple must have on their bookshelves. Whilst I think it is unrealistic to cut out everything Rebecca Fett mentions, I've been trying to use more natural products in my already pretty basic beauty regime. I found the Faith In Nature range to be reasonably priced compared to a lot of other organic products. I also wanted a fragrance free shampoo, conditioner and body wash ready for egg collection which they also produce.
Last week, I started sniffing Suprecur (buserelin) nasal spray three times a day. I realise this sounds like I have a solvent abuse problem, but it is in fact the next rung on our IVF ladder, the down-regulation stage. It works by acting on the pituitary gland to stop the production of hormones that control the release of eggs from your ovaries. Buserelin is a GnRH agonist drug (alongside Zoladex, Lupron and Prostap to name a few) and because it suppresses oestrogen production, it is sometimes used to treat endometriosis. I was actually looking forward to this stage, to hopefully give my body a break from the pain and bloating if nothing else.
I have read that lot of women suffer with menopausal side-effects while taking buserelin. Apart from the vile aftertaste it leaves in the back of your throat, I haven't noticed too many grievances so far. I'm only a week in so I guess the night sweats won't be kicking in quite yet. I have, however, been experiencing extremely vivid dreams, every goddamn night. And that my friends is an understatement!
I've had issues with my wisdom teeth for the last twenty years. Four days ago I had my second operculectomy to try and solve the problem of constant infections and pericoronitis. I wasn't particularly worried as I've had the procedure before but this time was a whole new ball game! I was stuck in the chair for a whole hour while the dentist completely butchered my mouth. By the time I'd driven into work, the anaesthetic had worn off and the concoction of ibuprofen and paracetamol weren't touching the pain, I sat there drooling and wincing in agony, desperate to get home for a sympathetic hug.
On a positive note, I've booked my first acupuncture session next week with a lady called Victoria Busk in Kingston. Hopefully this will counterbalance the trauma of this week and normality will soon be restored.
I started taking the contraceptive pill in preparation for treatment, which allows the fertility consultant to have complete control over timings of my cycle. It is also said to help the ovaries respond better to the stimulation medication and to decrease the chances of cysts forming which could delay proceedings. It's common for ladies with endometriosis to have ovarian cysts, so while taking the pill seems counter-intuitive, I can kind of see the logic.
During the two weeks I was on the pill, I took the decision to inform my bosses about my IVF cycle. Initially, I thought I might try and go through the treatment without having to tell anyone at work, but after getting some positive experiences from ladies on a facebook group, I decided to bite the bullet. I have two bosses, one of each sex, so naturally I resolved to approach my manager, who is female. I'm not even sure why I was worried, I've been at the company for 11 years and I'm fortunate that Louise and I have a good relationship. I couldn't have asked for her to be more understanding and supportive and as soon as I'd blurted everything out to her, I felt the weight lift off my shoulders. I can't express what a relief it is to have her backing and she promised she would do everything to help make the next few weeks as painless as she could with regards to time off for appointments. She also said she would talk to our Head of Dept and I knew he would be as equally empathetic.
A couple of weeks ago I had an appointment at the ACU for my trial embryo transfer. Part of me was glad to be having this dummy run, obviously if there were complications I'd rather they were flagged now, but what if it was excruciatingly painful? I'd just be worrying and dreading the real thing the whole way through my treatment. As we all know and get told on a regular basis, stress is not good for the process of baby making. Relax and it'll happen! *rolls eyes*
Again, I had to wait an hour for my appointment at Kingston ACU. I appreciate it's an NHS clinic and they're busy but when you have to go into work afterwards and give an approximate time when you might be there, this is extremely frustrating. Especially as my bosses have been so understanding, I didn't want it to feel like I was already exploiting their kindness. While I was in the waiting room I observed a guy looking very uneasy as he walked out holding a metal box containing his partner's eggs, on his way to King's to (hopefully) add his part to the science. I have to admit, this did make me smile.
The procedure itself was like a more painful smear test, as opposed to the nightmare hysteroscopy I had gotten myself worked up about. Thankfully it was over relatively quickly and without complication so we're good to go.
One way I like to unwind and destress is by having a glass of wine (or three). Following on from my abstention of caffeine, I decided to set a date to forgo my beloved Sauv Blanc before I started my down-regulation drugs. I ringed the 8th November in my diary to start my dry couple of months (hopefully longer). We had tickets to see both Kevin Morby at the Electric Ballroom and Father John Misty at Hammersmith Apollo the week before so we earmarked the latter as our last hurrah! Jon has decided to join me in this period of detox, after all, the health of his swimmers is also vital and we're certainly in this as a partnership. We might as well throw everything at this cycle as we only have one shot at this.
I have also been reading the book 'It Starts with the Egg', which I'm sure every IVF couple must have on their bookshelves. Whilst I think it is unrealistic to cut out everything Rebecca Fett mentions, I've been trying to use more natural products in my already pretty basic beauty regime. I found the Faith In Nature range to be reasonably priced compared to a lot of other organic products. I also wanted a fragrance free shampoo, conditioner and body wash ready for egg collection which they also produce.
Last week, I started sniffing Suprecur (buserelin) nasal spray three times a day. I realise this sounds like I have a solvent abuse problem, but it is in fact the next rung on our IVF ladder, the down-regulation stage. It works by acting on the pituitary gland to stop the production of hormones that control the release of eggs from your ovaries. Buserelin is a GnRH agonist drug (alongside Zoladex, Lupron and Prostap to name a few) and because it suppresses oestrogen production, it is sometimes used to treat endometriosis. I was actually looking forward to this stage, to hopefully give my body a break from the pain and bloating if nothing else.
I have read that lot of women suffer with menopausal side-effects while taking buserelin. Apart from the vile aftertaste it leaves in the back of your throat, I haven't noticed too many grievances so far. I'm only a week in so I guess the night sweats won't be kicking in quite yet. I have, however, been experiencing extremely vivid dreams, every goddamn night. And that my friends is an understatement!
I've had issues with my wisdom teeth for the last twenty years. Four days ago I had my second operculectomy to try and solve the problem of constant infections and pericoronitis. I wasn't particularly worried as I've had the procedure before but this time was a whole new ball game! I was stuck in the chair for a whole hour while the dentist completely butchered my mouth. By the time I'd driven into work, the anaesthetic had worn off and the concoction of ibuprofen and paracetamol weren't touching the pain, I sat there drooling and wincing in agony, desperate to get home for a sympathetic hug.
The dentist has made such a mess of things, I inevitably got an infection and had to go back to the hospital the very next day. I've been on antibiotics and a liquid diet for the last few days, which has meant I've lost quite a lot of weight. The whole ordeal has stressed me out so much, I really wish I had waited until after my IVF cycle to go through with it. Hindsight is a wonderful thing!
On a positive note, I've booked my first acupuncture session next week with a lady called Victoria Busk in Kingston. Hopefully this will counterbalance the trauma of this week and normality will soon be restored.
Monday, 30 October 2017
Better Late Than Never
Cycle Day 1
The one time I actually wanted my period to show up so I can start my first IVF cycle, it goes AWOL. I'm usually a regular 28 days kinda gal so the fact that she was a week late was really out of character and quite frankly, bloody stressful! She finally decided to show her ugly face late yesterday, on a Sunday of all days, so I had to wait until this morning to phone the ACU for further instructions. The nurse said if it had been one day later, we would've had to postpone the round for another month, meaning EC would be pushed back until January. The reason being, I have to fit in two weeks of taking the contraceptive pill to regulate my cycle before starting down regulation drugs on the 13th November, if it's less than two weeks, the protocol won't work. I'm just relieved that we are still able to go ahead and have all the treatment before Christmas.
So what have we been doing since our initial consultation last month? Mission IVF is now in full flow and we have ticked off quite a few items of the agenda already.
We've ordered and picked up the drugs from Boots at Kingston Hospital - Maexeni contraceptive pill, Suprecur (buserelin) nasal sprays, Menopur injection vials (stims) and Cyclogest progesterone pessaries. Seeing all the boxes sitting on my kitchen table has definitely made it all seem very real. We've both had all our blood tests - HIV, Hepatitis B & C and Jon has dropped off yet another sperm sample, making sure to keep it warm during the journey! I actually joked about him falling off his bike on the way to the hospital and spilling his precious cargo all over the road, but it probably wouldn't have been that funny come to think of it. I've also booked in my trial embryo transfer for next week. I just assumed this was commonplace but after speaking to a few women online, it seems that this isn't the case. I'm now worrying whether it'll be painful, given my history with painful smear tests and hysteroscopies.
I've bought myself a beautiful IVF diary from Bearface Prints, as you can gather by now, I like to document things. I wrote a cringeworthy journal every day as a teenager and was mortified when one day my Mum found it under my bed when she was having a good tidy. I later found out that she also keeps a diary so I guess it must run in the family! There's space to record all the medication dates which is extremely useful for me, if I don't write everything down, I'll most certainly forget. There are also pages for you to log how you're feeling at certain times during the process. It came with a lovely personalised note from Natalie the store owner, who has obviously been through IVF herself. The diary has certainly been made with a lot of thought and love.
The one time I actually wanted my period to show up so I can start my first IVF cycle, it goes AWOL. I'm usually a regular 28 days kinda gal so the fact that she was a week late was really out of character and quite frankly, bloody stressful! She finally decided to show her ugly face late yesterday, on a Sunday of all days, so I had to wait until this morning to phone the ACU for further instructions. The nurse said if it had been one day later, we would've had to postpone the round for another month, meaning EC would be pushed back until January. The reason being, I have to fit in two weeks of taking the contraceptive pill to regulate my cycle before starting down regulation drugs on the 13th November, if it's less than two weeks, the protocol won't work. I'm just relieved that we are still able to go ahead and have all the treatment before Christmas.
So what have we been doing since our initial consultation last month? Mission IVF is now in full flow and we have ticked off quite a few items of the agenda already.
I've bought myself a beautiful IVF diary from Bearface Prints, as you can gather by now, I like to document things. I wrote a cringeworthy journal every day as a teenager and was mortified when one day my Mum found it under my bed when she was having a good tidy. I later found out that she also keeps a diary so I guess it must run in the family! There's space to record all the medication dates which is extremely useful for me, if I don't write everything down, I'll most certainly forget. There are also pages for you to log how you're feeling at certain times during the process. It came with a lovely personalised note from Natalie the store owner, who has obviously been through IVF herself. The diary has certainly been made with a lot of thought and love.
I have also given up caffeine, which has actually been a lot easier than I anticipated. I swapped the humble English Breakfast bag or BST (Bog Standard Tea as my mother-in-law calls it) for peppermint tea a few years ago due to my stomach issues, but I do love a good coffee, especially first thing in the morning. I would even go as far to say, like many of us these days, I'm a coffee snob. There is one brand of instant that I'm more than happy to drink and luckily it also comes in a decent decaffeinated form...
So there's my tip for anyone struggling to find a nice decaff. Nescafé Azera 'Barista Style' Instant Coffee is going to be my saviour over the next couple of months!
As much as I'd love to sit here and write an entire entry dedicated to coffee, there are more pressing matters presently at the forefront of my mind. As I mentioned at the start of the post, today is (finally) cycle day 1, which means the start my IVF protocol. Wish us luck!
Thursday, 28 September 2017
First IVF Consultation
Tuesday 26th September 2017
Kingston ACU
Kingston Hospital, London
I was excited but a little nervous while we were waiting for our first IVF consultation at the same hospital I'd been treated at a number of times this year already. The clinic was running late and we had a long wait before we were called into the appointment, which didn't help the with the feeling of imbalance. I couldn't help but look at the other couples in the waiting room, I suddenly wanted to know all their stories. As you can imagine, the demographic was fairly predictable - couples in their late 30's to early 40's.
During the consultation with the Senior Fertility Specialist, Miss Despina Mavridou, we had a baseline scan, which is an internal ultrasound to determine my antral follicle count (AFC). The scan showed a very small number of follicles, two on each ovary to be precise, and my left ovary was tucked high up behind my uterus with little mobility. She discussed that it could potentially be difficult to access at egg collection. I started to feel like we were already fighting a losing battle and we hadn't even started the treatment yet - endometriosis has a lot to answer for! Due to the low AFC and previous blood test results detecting low AMH and elevated FSH levels (a good indication of a woman's ovarian reserve), they decided to put me on the very maximum dose of stimulation drugs. We then went through a number of things in detail, including the reasons treatment might fail, operative risks, side effects and the predicted percentage of success (20%), which I thought was quite high, all things considered.
I'd already started to feel very overwhelmed with information to process but this was nothing compared to how I felt after the second part of our appointment. After a further short wait we were ushered into another room to see lovely nurse Laura MacGreggor to go through a phone book worth of HFEA consent forms that we had to sign and date. This was in fact a contract between the two of us and the clinic outlining all kinds of morbid but necessary scenarios such as:
Do you consent to embryos created before your death being transferred to your partner after your death, and to being registered as the legal parent of any child born from your partner’s treatment after your death (ie, posthumous birth registration)?
We then went through our IVF protocol, highlighting key dates over the next three months. I was frantically trying to scribble everything down as I was so concerned I might mess things up if I had forgotten a vital piece of information (my short-term memory is non-existent). Key things I managed to scrawl on the back of the appointment letter were:
Laura then explained that the real embryo transfer would be at a different site at King's College Hospital in Denmark Hill. This means that within minutes of my egg collection, Jon will be handed a medical transportation box (fridge) containing my lovely eggs and he'll have to hotfoot it over to King's on the train where he'll then do his his part of the bargain. The following day, we'll hopefully get a call telling us the magic has happened and we have some beautiful little embryos in a petri dish.
Holy moly.
Guy's Hospital, London
As if my mind wasn't frazzled enough after our consultation, I decided to go to my first ever Endometriosis UK support meeting that evening at Guy's Hospital. I'd joined the London facebook group a few months previous and I'd already gained a lot of information but I wanted to meet ladies in the same position I now found myself in. Jon came with me for moral support as I was feeling very anxious about the session. I'm naturally very shy, especially in situations where I'd be meeting someone for the first time, so this was completely out of my comfort zone. Not one new person, but a whole room of new ladies all with one shared condition.
It turns out I had more than one thing in common with a couple of the ladies there that evening and towards the end of the discussion, a question about infertility and IVF was presented. At the end of the evening I got talking to Tijen and Kelda, both of whom were about to start the IVF process, we swapped email addresses to keep in contact over the next few months. I was aware I was talking really intensely as I blurted out my story to them, I'd had so much information to process that day, I was feeling extremely vulnerable and overwhelmed. On the way home, I had a chance to contemplate everything and I felt happy I had two people I could now talk to.
Kingston ACU
Kingston Hospital, London
I was excited but a little nervous while we were waiting for our first IVF consultation at the same hospital I'd been treated at a number of times this year already. The clinic was running late and we had a long wait before we were called into the appointment, which didn't help the with the feeling of imbalance. I couldn't help but look at the other couples in the waiting room, I suddenly wanted to know all their stories. As you can imagine, the demographic was fairly predictable - couples in their late 30's to early 40's.
During the consultation with the Senior Fertility Specialist, Miss Despina Mavridou, we had a baseline scan, which is an internal ultrasound to determine my antral follicle count (AFC). The scan showed a very small number of follicles, two on each ovary to be precise, and my left ovary was tucked high up behind my uterus with little mobility. She discussed that it could potentially be difficult to access at egg collection. I started to feel like we were already fighting a losing battle and we hadn't even started the treatment yet - endometriosis has a lot to answer for! Due to the low AFC and previous blood test results detecting low AMH and elevated FSH levels (a good indication of a woman's ovarian reserve), they decided to put me on the very maximum dose of stimulation drugs. We then went through a number of things in detail, including the reasons treatment might fail, operative risks, side effects and the predicted percentage of success (20%), which I thought was quite high, all things considered.
I'd already started to feel very overwhelmed with information to process but this was nothing compared to how I felt after the second part of our appointment. After a further short wait we were ushered into another room to see lovely nurse Laura MacGreggor to go through a phone book worth of HFEA consent forms that we had to sign and date. This was in fact a contract between the two of us and the clinic outlining all kinds of morbid but necessary scenarios such as:
Do you consent to embryos created before your death being transferred to your partner after your death, and to being registered as the legal parent of any child born from your partner’s treatment after your death (ie, posthumous birth registration)?
We then went through our IVF protocol, highlighting key dates over the next three months. I was frantically trying to scribble everything down as I was so concerned I might mess things up if I had forgotten a vital piece of information (my short-term memory is non-existent). Key things I managed to scrawl on the back of the appointment letter were:
- Order the IVF medication from Boots
- Have blood tests (HIV, Hepatitis B & C)
- Jon to provide (yet another) sperm sample
- Ring clinic to book a trial embryo transfer (due to previous womb history)
- Start taking a birth control pill (they know I'm trying to get preggers right?)
- Start sniffing another drug to turn off my ovaries (see above)
- Phone in to book 1st scan (down regulation)
- Start injecting stimulation drugs
- Egg collection under sedation (preferably knocked out)
Laura then explained that the real embryo transfer would be at a different site at King's College Hospital in Denmark Hill. This means that within minutes of my egg collection, Jon will be handed a medical transportation box (fridge) containing my lovely eggs and he'll have to hotfoot it over to King's on the train where he'll then do his his part of the bargain. The following day, we'll hopefully get a call telling us the magic has happened and we have some beautiful little embryos in a petri dish.
Holy moly.
Guy's Hospital, London
As if my mind wasn't frazzled enough after our consultation, I decided to go to my first ever Endometriosis UK support meeting that evening at Guy's Hospital. I'd joined the London facebook group a few months previous and I'd already gained a lot of information but I wanted to meet ladies in the same position I now found myself in. Jon came with me for moral support as I was feeling very anxious about the session. I'm naturally very shy, especially in situations where I'd be meeting someone for the first time, so this was completely out of my comfort zone. Not one new person, but a whole room of new ladies all with one shared condition.
It turns out I had more than one thing in common with a couple of the ladies there that evening and towards the end of the discussion, a question about infertility and IVF was presented. At the end of the evening I got talking to Tijen and Kelda, both of whom were about to start the IVF process, we swapped email addresses to keep in contact over the next few months. I was aware I was talking really intensely as I blurted out my story to them, I'd had so much information to process that day, I was feeling extremely vulnerable and overwhelmed. On the way home, I had a chance to contemplate everything and I felt happy I had two people I could now talk to.
Thursday, 29 June 2017
Outpatient Hysteroscopy
Wednesday 28th June 2017
Kingston Hospital
Roehampton Wing
Today was attempt two of my 'clear out' hysteroscopy. I won't go into the reasons why the first one that was booked at the beginning of the month was cancelled, let's just say it was an misjudgement on my part. This was my first outpatient hysteroscopy so I had no idea what to expect or how uncomfortable it would be. I assumed as there were no offers of any sort of anaesthetic, it would be similar to experiencing sharp period pain or an HSG. Oh how wrong I was.
On arrival, a trainee doctor named Lisa greeted me and showed me to the consultation room where Miss Al-Shabibi was waiting. I later learned she is the lead in Outpatient Hysteroscopy at Kingston, I really wish I'd been privy to that information pre-op as it might've helped relax me a little! She explained everything that would happen and I signed the papers. I stripped and changed into the gown and followed the two lady doctors into theatre. Here, two more nurses were waiting for me and I felt very comfortable surrounded by a gaggle of women. Girl Power, or so I thought. Soon I had my legs resting in the stirrups, and liquid was injected into my cervix to widen it ready for the hysteroscope. I was comfortably chatting away to Lisa about work, my crappy commute, blah, blah, blah and then... a sharp stabbing pain so bad it took my breath away. I'm not exaggerating when I say it felt like she was jabbing me with a red hot poker. My chatter was soon replaced with yelps, cries and short, sharp breathing in between whimpers. I suddenly knew how it felt to be a Looney Tunes character, eyes on stalks and steam coming out of my ears, I certainly must have looked crazy! I was already holding (squeezing) Lisa's hand, now one of the other nurses quickly came round and offered her hand on my other side as she could see and hear my distress. As the hysteroscope was being inserted the pain was getting progressively worse. I was struggling to picture anything else apart from that torture tool.
Mrs A-S: "Look at the camera images, you can see one of your tubes"
Me: (Not looking and the screen) "Aaaaaaaargh"
Mrs A-S: "And there's your other one"
Me: (Turning to the screen for 2 seconds) "Aaaaaaaaaargh, how much longer?"
Mrs A-S: "Not long now, I'm just tidying up"
After what seemed like an eternity but in reality was only a few minutes, it was thankfully over. As soon as she pulled the Devil Device© out, there was almost instant relief, although some of the pain was still there, the pressure was greatly reduced. She seemed surprised at this which baffled me at the time.
After changing back into my skivvies, now with standard-issue hospital nappy pad, I was back in the consultation room. I found myself suddenly feeling embarrassed and started apologising profusely for being a baby. Maybe I was having a low-pain threshold day, or maybe it's due to my suspected adenomyosis or because I'm due on my period any day now? Whatever the reason, I did not feel good. I pride myself on how well I cope with most situations and now I felt like a failure. After trying to reassure me, Miss Al-Shabibi explained that she was extremely happy with how everything was looking, but she had removed a little more of the septum tissue that was left. There were no adhesions and it looked very clear which was a huge relief - no clearing of the cobwebs required. She told me she would report back to Mr Kalu and he would be in touch about the next step. And that was that, I was on my merry way, albeit walking like a rustling John Wayne. Stupidly and naively I hadn't taken any pain relief pre-op and I certainly needed it now, so I popped into the pharmacy on the way out. By the time I'd driven home, the Nurofen was kicking in and I felt a little more comfortable. Inevitably, as soon as I removed the ridiculously over-sized nappy, the floodgates opened. Bloody marvellous.
After settling on the sofa in my PJs for the evening, I started reading forums about women's experiences of having a hysteroscopy without anaesthesia. There's even a Facebook page called Campaign Against Painful Hysteroscopy! I found a vast spectrum of stories ranging from people who said it was merely uncomfortable to women whose procedure had to be abandoned because it was so painful and carried out at a later date under a general. Some women even said it was worse than childbirth! I felt a bit better knowing I was somewhere in the middle with my experience, I was just relieved it was over, I do not want to go through that again.
11.04.18 - Update from Campaign Against Painful Hysteroscopy Facebook page
It's good to see Patient website being truthful about the risk of severe pain during outpatient hysteroscopy. We need ALL NHS gynae clinics to provide honest patient information leaflets warning of % risk of severe pain and giving the option of sedation or GA...
https://patient.info/health/hysteroscopy
Me: If you're about to have an outpatient hysteroscopy, I would advise you head to the Will it hurt? section and make sure you go through these points with your gynaecologist before the procedure. I can't stress enough, knowing what I know now, that if I was given the option of a GA I would accept it every time. At the very least they should be offering you sedation, please bear this in mind. That said, I have since spoken to ladies who have had no problems so don't take my experience as gospel, just be prepared.
Kingston Hospital
Roehampton Wing
Today was attempt two of my 'clear out' hysteroscopy. I won't go into the reasons why the first one that was booked at the beginning of the month was cancelled, let's just say it was an misjudgement on my part. This was my first outpatient hysteroscopy so I had no idea what to expect or how uncomfortable it would be. I assumed as there were no offers of any sort of anaesthetic, it would be similar to experiencing sharp period pain or an HSG. Oh how wrong I was.
On arrival, a trainee doctor named Lisa greeted me and showed me to the consultation room where Miss Al-Shabibi was waiting. I later learned she is the lead in Outpatient Hysteroscopy at Kingston, I really wish I'd been privy to that information pre-op as it might've helped relax me a little! She explained everything that would happen and I signed the papers. I stripped and changed into the gown and followed the two lady doctors into theatre. Here, two more nurses were waiting for me and I felt very comfortable surrounded by a gaggle of women. Girl Power, or so I thought. Soon I had my legs resting in the stirrups, and liquid was injected into my cervix to widen it ready for the hysteroscope. I was comfortably chatting away to Lisa about work, my crappy commute, blah, blah, blah and then... a sharp stabbing pain so bad it took my breath away. I'm not exaggerating when I say it felt like she was jabbing me with a red hot poker. My chatter was soon replaced with yelps, cries and short, sharp breathing in between whimpers. I suddenly knew how it felt to be a Looney Tunes character, eyes on stalks and steam coming out of my ears, I certainly must have looked crazy! I was already holding (squeezing) Lisa's hand, now one of the other nurses quickly came round and offered her hand on my other side as she could see and hear my distress. As the hysteroscope was being inserted the pain was getting progressively worse. I was struggling to picture anything else apart from that torture tool.
Mrs A-S: "Look at the camera images, you can see one of your tubes"
Me: (Not looking and the screen) "Aaaaaaaargh"
Mrs A-S: "And there's your other one"
Me: (Turning to the screen for 2 seconds) "Aaaaaaaaaargh, how much longer?"
Mrs A-S: "Not long now, I'm just tidying up"
After what seemed like an eternity but in reality was only a few minutes, it was thankfully over. As soon as she pulled the Devil Device© out, there was almost instant relief, although some of the pain was still there, the pressure was greatly reduced. She seemed surprised at this which baffled me at the time.
After changing back into my skivvies, now with standard-issue hospital nappy pad, I was back in the consultation room. I found myself suddenly feeling embarrassed and started apologising profusely for being a baby. Maybe I was having a low-pain threshold day, or maybe it's due to my suspected adenomyosis or because I'm due on my period any day now? Whatever the reason, I did not feel good. I pride myself on how well I cope with most situations and now I felt like a failure. After trying to reassure me, Miss Al-Shabibi explained that she was extremely happy with how everything was looking, but she had removed a little more of the septum tissue that was left. There were no adhesions and it looked very clear which was a huge relief - no clearing of the cobwebs required. She told me she would report back to Mr Kalu and he would be in touch about the next step. And that was that, I was on my merry way, albeit walking like a rustling John Wayne. Stupidly and naively I hadn't taken any pain relief pre-op and I certainly needed it now, so I popped into the pharmacy on the way out. By the time I'd driven home, the Nurofen was kicking in and I felt a little more comfortable. Inevitably, as soon as I removed the ridiculously over-sized nappy, the floodgates opened. Bloody marvellous.
After settling on the sofa in my PJs for the evening, I started reading forums about women's experiences of having a hysteroscopy without anaesthesia. There's even a Facebook page called Campaign Against Painful Hysteroscopy! I found a vast spectrum of stories ranging from people who said it was merely uncomfortable to women whose procedure had to be abandoned because it was so painful and carried out at a later date under a general. Some women even said it was worse than childbirth! I felt a bit better knowing I was somewhere in the middle with my experience, I was just relieved it was over, I do not want to go through that again.
EVER!
11.04.18 - Update from Campaign Against Painful Hysteroscopy Facebook page
It's good to see Patient website being truthful about the risk of severe pain during outpatient hysteroscopy. We need ALL NHS gynae clinics to provide honest patient information leaflets warning of % risk of severe pain and giving the option of sedation or GA...
https://patient.info/health/hysteroscopy
Me: If you're about to have an outpatient hysteroscopy, I would advise you head to the Will it hurt? section and make sure you go through these points with your gynaecologist before the procedure. I can't stress enough, knowing what I know now, that if I was given the option of a GA I would accept it every time. At the very least they should be offering you sedation, please bear this in mind. That said, I have since spoken to ladies who have had no problems so don't take my experience as gospel, just be prepared.
Sunday, 21 May 2017
Copper Coil
Yesterday, was another day of firsts. I ran my first ever Park Run and experienced my first ever coil removal sans anaesthetic - go me! The Park Run was a success, as in I completed the 3 mile course in less than half an hour, but unfortunately I was in pain the whole way round and suffered cramping for some time afterwards. Nevertheless, I felt a sense of achievement and the endorphins put me in a good mood for the day ahead, despite being overtaken by a man pushing a buggy (maybe more than one).
Later that day I had my final appointment with Mr Kalu before he was going to refer us for fertility treatment. We talked about our options and how he thinks referring us straight for IVF is our best chance given my age and the severity of the endometriosis. He said he would refer us as soon as I've had another hysteroscopy to have one final look inside my uterus to check for adhesions and a final clearing of any cobwebs. There is currently a three month waiting list at Kingston Hospital for IVF so all being well, I'll be able to start treatment at the end of the summer. Whilst, I'm not relishing the prospect of having yet another procedure, I'm looking forward to getting our fertility journey underway. After a few months of setbacks, things seem to be finally heading in the right direction.
Mr Kalu then informed me he was going to remove the dreaded coil. Gulp. Although this was my second IUD, I'd never been awake for insertion or extraction before so as I lay on the bed with my legs akimbo, I was a little tense to say the least. I could feel it scraping every millimetre of my cervix as he was pulling the wretched thing out, I can now see why women only have them every 5 years!
After a few minutes of chat while I was fumbling around for my underwear, which were of course tucked neatly under my leggings on the chair (I have no problem with a doctor studying my floodlit private parts but there's no way he's going to see my knickers), I asked to see the coil that he'd just removed. This is what he removed from the waste bin...
I'll just leave that there with you.
Later that day I had my final appointment with Mr Kalu before he was going to refer us for fertility treatment. We talked about our options and how he thinks referring us straight for IVF is our best chance given my age and the severity of the endometriosis. He said he would refer us as soon as I've had another hysteroscopy to have one final look inside my uterus to check for adhesions and a final clearing of any cobwebs. There is currently a three month waiting list at Kingston Hospital for IVF so all being well, I'll be able to start treatment at the end of the summer. Whilst, I'm not relishing the prospect of having yet another procedure, I'm looking forward to getting our fertility journey underway. After a few months of setbacks, things seem to be finally heading in the right direction.
Mr Kalu then informed me he was going to remove the dreaded coil. Gulp. Although this was my second IUD, I'd never been awake for insertion or extraction before so as I lay on the bed with my legs akimbo, I was a little tense to say the least. I could feel it scraping every millimetre of my cervix as he was pulling the wretched thing out, I can now see why women only have them every 5 years!
After a few minutes of chat while I was fumbling around for my underwear, which were of course tucked neatly under my leggings on the chair (I have no problem with a doctor studying my floodlit private parts but there's no way he's going to see my knickers), I asked to see the coil that he'd just removed. This is what he removed from the waste bin...
I'll just leave that there with you.
Friday, 7 April 2017
Hysteroscopy Recovery
This time round I was signed off for a week, initially this was two but managed to I negotiate Mr Kalu down - he looked at me as if I was crazy! I felt terrible for already taking so much time off from work this year and I didn't feel I would need more than a few days. The procedure was invasive, but the healing was all internal - no complications with stitches and dressings.
The day after the operation, my mood had improved and I started feeling more positive about the things. As with everything in life, crappy situations always seem heightened when you're lacking sleep and that night I managed to drift off very easily. I guess I was still trying to get my head around the diagnosis, what it meant for me and what other hurdles the future would throw in my path. As the week went on and I was feeling slightly more human, I had time to take stock and reassess what had happened over the last few months.
While I was recovering and trying to process and make sense of my newfound situation, I slowly started to feel frustrated and irritable. The internal pain was fairly short-lived but the emotional strain from bleeding heavily for two-thirds of the month before and after the operation started to get me down. I'll spare you from too many details this time but the post-op tampon embargo meant yet another trip to the M&S lingerie department, I was now getting quite a collection. My digestive system really struggled too, sometimes completely grinding to a halt for a few days then whirring back into action with accompanying cramps in every place imaginable, crippling stomach ache and bouts of nausea. The bloating was constant and I found wearing anything other than leggings unbearable. Ironically, I looked pregnant which was a twisted kick in the teeth, seeing as that's what I've been aiming to achieve for the past 3½ years. The resentment towards this disease and every GP who has misdiagnosed me over the past two decades is slowly augmenting as I understand more and more about bloody endometriosis.
Yesterday, I had my post-procedure follow-up with Mr Kalu. I explained my womb worriment and he vehemently reassured me the septum tissue hadn't grown back and will not ever grow back in the future (duh, it's fibrous tissue!). Although I felt a little stupid, I was hugely relieved. He was actually really happy with how the operation went and wants me to carry on with the oestrogen (HRT) and progestogen medication until I see him next month. ROLL. ON. MAY.
The day after the operation, my mood had improved and I started feeling more positive about the things. As with everything in life, crappy situations always seem heightened when you're lacking sleep and that night I managed to drift off very easily. I guess I was still trying to get my head around the diagnosis, what it meant for me and what other hurdles the future would throw in my path. As the week went on and I was feeling slightly more human, I had time to take stock and reassess what had happened over the last few months.
While I was recovering and trying to process and make sense of my newfound situation, I slowly started to feel frustrated and irritable. The internal pain was fairly short-lived but the emotional strain from bleeding heavily for two-thirds of the month before and after the operation started to get me down. I'll spare you from too many details this time but the post-op tampon embargo meant yet another trip to the M&S lingerie department, I was now getting quite a collection. My digestive system really struggled too, sometimes completely grinding to a halt for a few days then whirring back into action with accompanying cramps in every place imaginable, crippling stomach ache and bouts of nausea. The bloating was constant and I found wearing anything other than leggings unbearable. Ironically, I looked pregnant which was a twisted kick in the teeth, seeing as that's what I've been aiming to achieve for the past 3½ years. The resentment towards this disease and every GP who has misdiagnosed me over the past two decades is slowly augmenting as I understand more and more about bloody endometriosis.
Yesterday, I had my post-procedure follow-up with Mr Kalu. I explained my womb worriment and he vehemently reassured me the septum tissue hadn't grown back and will not ever grow back in the future (duh, it's fibrous tissue!). Although I felt a little stupid, I was hugely relieved. He was actually really happy with how the operation went and wants me to carry on with the oestrogen (HRT) and progestogen medication until I see him next month. ROLL. ON. MAY.
Saturday, 1 April 2017
Hysteroscopy
Saturday 25th March 2017
BMI Coombe Wing
Kingston Hospital, London
Seven weeks on from my first procedure I was back on the same private ward ready for my second general anaesthetic and my second hysteroscopy. I felt so much more relaxed this time round, knowing there was no incision surgery and what to expect with the anaesthetic - I was almost looking forward to it! The only thing in the back of my mind was the trauma of the catheter after my last surgery - I was really hoping I wouldn't have to go through that experience EVER again.
Diverting from the subject momentarily as March is an important month for ladies worldwide. International Women's Day occurs annually on the 8th and what you probably don't know is that March is also Endometriosis Awareness Month. On the day of my second surgery there were marches happening in 47 countries globally to raise attention to this crippling condition. From Argentina to Kuwait to Zimbabwe - women (and men) were out in force! In London, along with the march, a few ladies met with MPs at Downing Street to discuss the issues surrounding misdiagnosis and unacceptable diagnosis times - hopefully this will lead to more awareness and guidelines for GPs. This would definitely be a few steps in the right direction.
Mr Kalu did his circulation of the ward early and informed me I was first on the theatre list once more. He explained that he was going to remove the coil and 'tidy up' any remaining tissue with the aid of a hysteroscope.
Now, I've looked online at what this involves and quite frankly the instrument scares the bejesus out of me. It's a thin(ish) metal rod with a camera on the end which relays images of ones uterus back to a monitor so the doctor or nurse can have a good ganders. I know it's not the first time I've had the pleasure of meeting this device, but for some reason the hysteroscope horrifies me, I was glad I was going to be knocked out for this procedure.
I find the experience of having a general anaesthetic an enjoyable but also a strange one. I don't remember the feeling of 'going under' for a few seconds beforehand - no countdown from 10 - just awake and then gone. I can only compare it to having a light in my brain that only flicks off, rather than a gradual dimmer switch.
I am relieved to say the the whole procedure, from going down for the general, to the operation felt a lot less traumatic and more straightforward. I'm assuming the anaesthetist gave me a much lower dose this time round as I was more keen to return to the land of living post-op. As soon as I was back in my room I was alert, sitting up chatting and I felt pretty good. My mouth was less dry and I had an appetite. An hour later I crashed.
Just before Mr Kalu did his afternoon rounds, I managed to pee. A lot. I was so happy I could've cried. Unfortunately my elation was short-lived.
Mr Kalu explained that he'd managed to remove more of the fibrous tissue but it was difficult to remove everything. He went on to explain that this would be the last time he'd carry out the procedure as he was concerned about creating scarring and adhesions which could add to my endo/adeno problems. He'd put in another copper coil to once again help with endometrial lining growth over the site. Wait, what? That wasn't part of the plan. I assumed this was all because the tissue had grown back and that this was always going to be a recurring problem. It definitely felt like one step forward, two steps back, this left me feeling extremely dejected and I struggled to fight back the tears in the car on the way home.
BMI Coombe Wing
Kingston Hospital, London
Diverting from the subject momentarily as March is an important month for ladies worldwide. International Women's Day occurs annually on the 8th and what you probably don't know is that March is also Endometriosis Awareness Month. On the day of my second surgery there were marches happening in 47 countries globally to raise attention to this crippling condition. From Argentina to Kuwait to Zimbabwe - women (and men) were out in force! In London, along with the march, a few ladies met with MPs at Downing Street to discuss the issues surrounding misdiagnosis and unacceptable diagnosis times - hopefully this will lead to more awareness and guidelines for GPs. This would definitely be a few steps in the right direction.
Mr Kalu did his circulation of the ward early and informed me I was first on the theatre list once more. He explained that he was going to remove the coil and 'tidy up' any remaining tissue with the aid of a hysteroscope.
Now, I've looked online at what this involves and quite frankly the instrument scares the bejesus out of me. It's a thin(ish) metal rod with a camera on the end which relays images of ones uterus back to a monitor so the doctor or nurse can have a good ganders. I know it's not the first time I've had the pleasure of meeting this device, but for some reason the hysteroscope horrifies me, I was glad I was going to be knocked out for this procedure.
I find the experience of having a general anaesthetic an enjoyable but also a strange one. I don't remember the feeling of 'going under' for a few seconds beforehand - no countdown from 10 - just awake and then gone. I can only compare it to having a light in my brain that only flicks off, rather than a gradual dimmer switch.
I am relieved to say the the whole procedure, from going down for the general, to the operation felt a lot less traumatic and more straightforward. I'm assuming the anaesthetist gave me a much lower dose this time round as I was more keen to return to the land of living post-op. As soon as I was back in my room I was alert, sitting up chatting and I felt pretty good. My mouth was less dry and I had an appetite. An hour later I crashed.
Just before Mr Kalu did his afternoon rounds, I managed to pee. A lot. I was so happy I could've cried. Unfortunately my elation was short-lived.
Mr Kalu explained that he'd managed to remove more of the fibrous tissue but it was difficult to remove everything. He went on to explain that this would be the last time he'd carry out the procedure as he was concerned about creating scarring and adhesions which could add to my endo/adeno problems. He'd put in another copper coil to once again help with endometrial lining growth over the site. Wait, what? That wasn't part of the plan. I assumed this was all because the tissue had grown back and that this was always going to be a recurring problem. It definitely felt like one step forward, two steps back, this left me feeling extremely dejected and I struggled to fight back the tears in the car on the way home.
Saturday, 4 March 2017
Diagnosis Letter
I realise this isn't very interesting or would even make much sense to many of you (I had to google every other word), but I thought I would post as it may be useful for fellow endometriosis sufferers.
Laparoscopic ablation of endometriosis, dye test, Hysteroscopy division of uterine septum and insertion of copper coil.
Findings:
1) Uterine Septum
2) Severe Endometriosis/Adenomyosis
Hysteroscopy: Her cervix and cervical canal were normal. The uterus is anteverted and bulky. There was a midline septum bisecting the cavity and extending to the midcavity. The utero-cervical length measured 8cm after division of the septum. Both tubal ostia were seen and are normal. Endometrial biopsy was sent for histology. The midline septum was divided using hysteroscopic scissors until both tubal ostia were visible and the cavity was more regular at the end of the procedure. The uterocervical length of 8cm. Procedure was uncomplicated.
Laparoscopy: There was severe endometriosis involving the rectum which was hitched up to the back of the cervix. There were significant wet endometriosis lesions on the serosal surface of the uterus and on the right pelvic side wall peritoneum. The uterus was soft and adenomyotic in appearance. The right ovary was bulky and contains a haemorrhagic corpus luteum. The left was normal. Both fallopian tubes were freely mobile. There was prompt fill and spill of methylene blue dye from both tubes, confirming bilateral tubal patency. Her peritoneal endometriosis was ablated. The procedure was uncomplicated.
She was discharged home on analgesics and a stat dose of 1g Azithromycin. I have prescribed a course of oestrogen (Progynova 2mg bd) for 28 days to help endometrial regeneration over the area where the septum was divided and Provera 5mg tds from day 18 and for 10 days to induce a withdrawal bleed. The coil will be retrieved in 6 weeks during a second-look hysteroscopy to ensure there are no residual endometrial adhesions. A follow-up appointment has been arranged for post-op review.
Yours sincerely
Mr E Kalu
Consultant Gynaecologist
Thursday, 23 February 2017
My Hospital Debut
Saturday 4th February 2017
BMI Coombe Wing
Kingston Hospital, London
Today was a day of firsts. At the age of 36 and a half (+14 days) it was my first hospital admission, my first general anaesthetic and my first operation. Despite all the biopsies, scans and other tests I've had previously, I've been pretty fortunate so far.
I'm usually calm in most circumstances, but in the week leading up to the procedure I found myself thinking not so much about the operation itself, but the anaesthesia - loss of sensation. I had spoken to a few people about my worries and I had mixed reviews. Some hate the thought of being in an induced sleep, while others seem to enjoy the heady sensation of coming round. Thinking about being knocked out then waking up in an entirely different place with no recollection of the bit in between did scare me, but intrigued me at the same time.
We woke early to be at the hospital for 7am. Kingston Hospital is only a 15 minute drive so I was grateful I didn't have long to dwell on the impending procedure. We arrived early and were shown to my room, it seemed comfortable enough but I hoped I wouldn't have to spend too long there. The nurse explained that I would be first into theatre that day and I would need to change into the cotton gown, dark green compression socks and extremely fetching paper knickers. Both Mr Kalu and the anaesthetist came round to discuss what would happen before and during the operation and to answer any questions I might have. We talked about the gas that would be pumped into my abdomen so he could see my organs more clearly and how this might be uncomfortable for a few days after the operation. Soon afterwards, nurse Izabela (who was an absolute angel) came to collect me and we walked down to the anaesthesia room which was adjoined to the operating theatre. Even though we were talking about anything but the procedure, I started to feel quite anxious and I suddenly wished Jon was still with me. She made sure I was comfortable on the trolley, gave my arm a quick reassuring squeeze and left me in the capable hands of the anaesthetists. I was hooked up to the monitor and they started asking me about my home, my job and anything else to take my mind off the cannula that was being inserted into my left hand. A mask was placed over my nose and mouth and...
I woke up in a recovery room with a few other patients, all of whom were looking decidedly perkier than myself. Nurse Izabela was again squeezing and rubbing my arm, but this time it was to encourage me to wake up, something I was very reluctant to do at the time. I enjoyed the hazy feeling of slowly regaining consciousness but I just wanted to sleep, I couldn't understand why they wouldn't allow me to doze. I think I was in the recovery room for around half an hour before they wheeled me back up to my room, still feeling inebriated and grinning like a loon at my husband.
As much as I wanted to sleep, I was urged to stay awake as the nurses needed to check my readings every 15 minutes - heart rate, blood pressure and oxygen levels. My blood pressure was really low so they gave me intravenous fluids and oxygen. I remember feeling extremely dehydrated and was chugging water like it was going out of fashion. The nurses stressed how important it was for me to try to wee as it's quite common to have a sleepy bladder after having a general anaesthetic. Patience is something I haven't been blessed with.
I wasn't hungry but I'd been in theatre for two hours so I was brought lunch not long after being deposited back on my bed. As lovely as it was, I struggled to eat the cod and mash as my dry mouth made it extremely difficult to swallow anything without having a sip of water after each mouthful. Jon was again the lucky recipient of the rest of my meal.
Being a Saturday, I was glad I'd decided to bring our iPad so we could watch Chelsea convincingly beat the Gooners. I just wished that I'd had full control of my bobbing head to fully appreciate the win at the time. I can only compare it to fighting tiredness on a long haul flight, although I'm glad I didn't have the embarrassment of falling asleep on someone's shoulder this time.
I still had no idea of my diagnosis or what surgery had been carried out whilst I was anaesthetised. I was aware that as well as the naval incision, there were two other dressings, one over each ovary. I assumed that some kind of surgery had taken place as I was sure a diagnostic laparoscopy wouldn't have taken two hours. While I was waiting for Mr Kalu to do his rounds, I was still being monitored regularly. The nurses were worried about my low blood pressure and my lack of pee - I didn't understand how I could possibly be dehydrated with the insane amount of water and herbal tea I was getting through. I was attempting to walk (shuffle) up and down the corridor by this point to try and spark my lazy bladder back to life and to release some of the gas pressure in my abdomen which was becoming more uncomfortable. I was trying everything, sitting on the toilet for a few minutes, running a tap, thinking of waterfalls... nada. I think it was around 8 hours before my bladder gave in under the strain and I managed to leak what I thought was, a fair amount into the pan. My joy was unfortunately short-lived. The nurse measured the pee from the cardboard pot then carried out a scan to see how much was left in my bladder. There was still 500ml of liquid remaining, this is a dangerous level which could lead to all kinds of urinary complications if not drained. The same process happened a couple of hours later - elation at being able to pee followed by despondency that it wasn't enough. The nurses were now suggesting that I would have to stay in overnight and have a catheter inserted if my situation didn't improve by early evening. Fan-bloody-tastic.
Mr Kalu arrived later that afternoon and went through everything that he did during the procedure. He firstly confirmed that he had found a uterine septum (option C from the previous post) and that he'd removed as much as the fibrous tissue as he could. He had fitted a copper coil and prescribed me a course of oestrogen (HRT) to aid endometrial regeneration over the area of surgery. He went on to explain that he had found significant deep infiltrating endometriosis (DIE) and adenomyosis and would grade it as severe (stage 4) as it was so widespread. He had found deep lesions on the outer surface of my uterus, peritoneum, Pouch of Douglas and bowel. This is where it got a little bit hazy - too much to take in when you're struggling with concentration - but he said it was all recorded in a letter which he then handed to me. My GP would also receive a copy. I tried to understand what was written in the letter, but it was full of medical terms which would need going over with a fine-tooth comb (Dr Google) when I was more alert, right now I needed to focus on getting out of hospital.
It got to 8pm and there was no improvement in my vesical function, the decision was made that I would have to stay overnight and have a catheter inserted to drain my bladder. I started to worry that it might never function properly ever again. Now, I've never had a problem with exposing my nethers to doctors and nurses, I've had enough tests over the years not to be overly self-conscious, but this next bit took undignified to a completely new level. I was quite distressed as I lay on the bed trying to mentally prepare myself for what was going to happen. I knew I had to relax to help the nurse with the insertion but it was difficult when you see the size of the tube and have no idea how that is going to fit in there. I wouldn't say it hurt, but it did sting and it was certainly very uncomfortable. The nurse seemed to be stretching and poking around down there for a long time which was only adding to my anguish, but eventually, she seemed happy enough and left me and my bag to it. A couple of minutes later she popped her head round the door to have a look at my pee progress but looked baffled because the pouch was completely empty. With the amount of liquid in my bladder, it should have been flowing straight away. After a few more bewildered glances she came back, this time with another nurse to attempt another insertion. After much head scratching, peering, prodding and leaking, between them they were successful with attempt number three and in just a few minutes I had filled the bag with a litre of fluid. What a traumatising ordeal.
Jon left around 10pm to let me try and sleep, it had been a long day and we were both exhausted. Although I had drained well over a litre and a half by this point, I was still feeling extremely bloated. I put this down to the gas in my abdomen rather than my bladder being stretched. I was lucky I didn't experience any shoulder pain that is a common occurrence after a laparoscopy. I managed to get a little sleep propped up in my hospital bed in between the nurse calls and the corridor chatter. I was grateful to have my own room, despite the private bathroom being wasted on me.
The next day Jon arrived around 8am, I'd been awake for a couple of hours and felt much better than the previous day. I wasn't in too much pain but the catheter was starting to agitate me. I'd been grateful for it through the night as it meant I hadn't had to get up on my own to go to the loo, now it was just getting in the way. After breakfast, Mr Kalu came in to see how I was doing. He informed me that it might take a while for me to urinate after they take the catheter out, but I had to be patient - patience is definitely not something I've been blessed with! My readings were back to normal and the nurses decided it would be a good time to say goodbye and good riddance to the tube. Remarkably, I managed to go for a completely normal pee within an hour so I could finally start to look forward to going home.
We ended up staying until after lunch as they thought my medication from the pharmacy downstairs would soon be ready for me to collect. After not eating much the previous day, my appetite had returned and I wasn't going to miss out on the roast beef I had ordered earlier! Another hour passed and I was getting restless, I just wanted to get home to the comfort of my own sofa. I signed the discharge forms and we carefully drove home, holding the seat belt and the elastic in my leggings away from my abdomen the whole way. Of course we had a call from the hospital within minutes of us being back saying my medication was ready.
BMI Coombe Wing
Kingston Hospital, London
Today was a day of firsts. At the age of 36 and a half (+14 days) it was my first hospital admission, my first general anaesthetic and my first operation. Despite all the biopsies, scans and other tests I've had previously, I've been pretty fortunate so far.
I'm usually calm in most circumstances, but in the week leading up to the procedure I found myself thinking not so much about the operation itself, but the anaesthesia - loss of sensation. I had spoken to a few people about my worries and I had mixed reviews. Some hate the thought of being in an induced sleep, while others seem to enjoy the heady sensation of coming round. Thinking about being knocked out then waking up in an entirely different place with no recollection of the bit in between did scare me, but intrigued me at the same time.
We woke early to be at the hospital for 7am. Kingston Hospital is only a 15 minute drive so I was grateful I didn't have long to dwell on the impending procedure. We arrived early and were shown to my room, it seemed comfortable enough but I hoped I wouldn't have to spend too long there. The nurse explained that I would be first into theatre that day and I would need to change into the cotton gown, dark green compression socks and extremely fetching paper knickers. Both Mr Kalu and the anaesthetist came round to discuss what would happen before and during the operation and to answer any questions I might have. We talked about the gas that would be pumped into my abdomen so he could see my organs more clearly and how this might be uncomfortable for a few days after the operation. Soon afterwards, nurse Izabela (who was an absolute angel) came to collect me and we walked down to the anaesthesia room which was adjoined to the operating theatre. Even though we were talking about anything but the procedure, I started to feel quite anxious and I suddenly wished Jon was still with me. She made sure I was comfortable on the trolley, gave my arm a quick reassuring squeeze and left me in the capable hands of the anaesthetists. I was hooked up to the monitor and they started asking me about my home, my job and anything else to take my mind off the cannula that was being inserted into my left hand. A mask was placed over my nose and mouth and...
I woke up in a recovery room with a few other patients, all of whom were looking decidedly perkier than myself. Nurse Izabela was again squeezing and rubbing my arm, but this time it was to encourage me to wake up, something I was very reluctant to do at the time. I enjoyed the hazy feeling of slowly regaining consciousness but I just wanted to sleep, I couldn't understand why they wouldn't allow me to doze. I think I was in the recovery room for around half an hour before they wheeled me back up to my room, still feeling inebriated and grinning like a loon at my husband.
As much as I wanted to sleep, I was urged to stay awake as the nurses needed to check my readings every 15 minutes - heart rate, blood pressure and oxygen levels. My blood pressure was really low so they gave me intravenous fluids and oxygen. I remember feeling extremely dehydrated and was chugging water like it was going out of fashion. The nurses stressed how important it was for me to try to wee as it's quite common to have a sleepy bladder after having a general anaesthetic. Patience is something I haven't been blessed with.
I wasn't hungry but I'd been in theatre for two hours so I was brought lunch not long after being deposited back on my bed. As lovely as it was, I struggled to eat the cod and mash as my dry mouth made it extremely difficult to swallow anything without having a sip of water after each mouthful. Jon was again the lucky recipient of the rest of my meal.
Being a Saturday, I was glad I'd decided to bring our iPad so we could watch Chelsea convincingly beat the Gooners. I just wished that I'd had full control of my bobbing head to fully appreciate the win at the time. I can only compare it to fighting tiredness on a long haul flight, although I'm glad I didn't have the embarrassment of falling asleep on someone's shoulder this time.
I still had no idea of my diagnosis or what surgery had been carried out whilst I was anaesthetised. I was aware that as well as the naval incision, there were two other dressings, one over each ovary. I assumed that some kind of surgery had taken place as I was sure a diagnostic laparoscopy wouldn't have taken two hours. While I was waiting for Mr Kalu to do his rounds, I was still being monitored regularly. The nurses were worried about my low blood pressure and my lack of pee - I didn't understand how I could possibly be dehydrated with the insane amount of water and herbal tea I was getting through. I was attempting to walk (shuffle) up and down the corridor by this point to try and spark my lazy bladder back to life and to release some of the gas pressure in my abdomen which was becoming more uncomfortable. I was trying everything, sitting on the toilet for a few minutes, running a tap, thinking of waterfalls... nada. I think it was around 8 hours before my bladder gave in under the strain and I managed to leak what I thought was, a fair amount into the pan. My joy was unfortunately short-lived. The nurse measured the pee from the cardboard pot then carried out a scan to see how much was left in my bladder. There was still 500ml of liquid remaining, this is a dangerous level which could lead to all kinds of urinary complications if not drained. The same process happened a couple of hours later - elation at being able to pee followed by despondency that it wasn't enough. The nurses were now suggesting that I would have to stay in overnight and have a catheter inserted if my situation didn't improve by early evening. Fan-bloody-tastic.
Mr Kalu arrived later that afternoon and went through everything that he did during the procedure. He firstly confirmed that he had found a uterine septum (option C from the previous post) and that he'd removed as much as the fibrous tissue as he could. He had fitted a copper coil and prescribed me a course of oestrogen (HRT) to aid endometrial regeneration over the area of surgery. He went on to explain that he had found significant deep infiltrating endometriosis (DIE) and adenomyosis and would grade it as severe (stage 4) as it was so widespread. He had found deep lesions on the outer surface of my uterus, peritoneum, Pouch of Douglas and bowel. This is where it got a little bit hazy - too much to take in when you're struggling with concentration - but he said it was all recorded in a letter which he then handed to me. My GP would also receive a copy. I tried to understand what was written in the letter, but it was full of medical terms which would need going over with a fine-tooth comb (Dr Google) when I was more alert, right now I needed to focus on getting out of hospital.
It got to 8pm and there was no improvement in my vesical function, the decision was made that I would have to stay overnight and have a catheter inserted to drain my bladder. I started to worry that it might never function properly ever again. Now, I've never had a problem with exposing my nethers to doctors and nurses, I've had enough tests over the years not to be overly self-conscious, but this next bit took undignified to a completely new level. I was quite distressed as I lay on the bed trying to mentally prepare myself for what was going to happen. I knew I had to relax to help the nurse with the insertion but it was difficult when you see the size of the tube and have no idea how that is going to fit in there. I wouldn't say it hurt, but it did sting and it was certainly very uncomfortable. The nurse seemed to be stretching and poking around down there for a long time which was only adding to my anguish, but eventually, she seemed happy enough and left me and my bag to it. A couple of minutes later she popped her head round the door to have a look at my pee progress but looked baffled because the pouch was completely empty. With the amount of liquid in my bladder, it should have been flowing straight away. After a few more bewildered glances she came back, this time with another nurse to attempt another insertion. After much head scratching, peering, prodding and leaking, between them they were successful with attempt number three and in just a few minutes I had filled the bag with a litre of fluid. What a traumatising ordeal.
Jon left around 10pm to let me try and sleep, it had been a long day and we were both exhausted. Although I had drained well over a litre and a half by this point, I was still feeling extremely bloated. I put this down to the gas in my abdomen rather than my bladder being stretched. I was lucky I didn't experience any shoulder pain that is a common occurrence after a laparoscopy. I managed to get a little sleep propped up in my hospital bed in between the nurse calls and the corridor chatter. I was grateful to have my own room, despite the private bathroom being wasted on me.
We ended up staying until after lunch as they thought my medication from the pharmacy downstairs would soon be ready for me to collect. After not eating much the previous day, my appetite had returned and I wasn't going to miss out on the roast beef I had ordered earlier! Another hour passed and I was getting restless, I just wanted to get home to the comfort of my own sofa. I signed the discharge forms and we carefully drove home, holding the seat belt and the elastic in my leggings away from my abdomen the whole way. Of course we had a call from the hospital within minutes of us being back saying my medication was ready.
Monday, 20 February 2017
Progress
After visiting my GP two years ago, I was referred for a pelvic ultrasound at St. Helier Hospital. I'd stopped taking the contraceptive pill 18 months previous with no success so we were keen to find out if there were any complications. The results of the ultrasound were fairly inconclusive, but I appeared to be ovulating which was encouraging.
Because nothing significant showed up on the ultrasound, I didn't return to my doctor for another 12 months. We'd moved house shortly after the last hospital appointment and it took time to settle into the new neighbourhood and change doctors, I guess we again just assumed we would conceive naturally during this time. What happened next changed all our lives forever - my father suddenly and unexpectedly passed away on 1st December 2015 from a massive heart attack. My world was completely turned upside down, I adored my daddy. For a few months, whilst I was going through the various horrific stages of grief, I couldn't even bear to think about children. It was too painful to comprehend that my Papa would now never meet his grandchild or that our son or daughter would grow up never knowing my lovely dad. On the other side of the coin, mum's deep sadness turned into longing for a little person to fill a small part of the colossal hole dad had left in our lives.
After a few very sad and challenging months, I booked an appointment at the new practice and went through my history with my new GP. She was really supportive and referred me to the gynaecology unit at Queen Mary's Hospital in Roehampton. I had my first appointment at the clinic in June of last year.
Two months later I had been booked in for a transvaginal pelvic scan and hysterosalpingogram - thankfully abbreviated to HSG. The first is an ultrasound which involves the insertion of a probe, enabling detailed images of the uterus and the ovaries to be obtained. The second is an x-ray using dye to determine if the fallopian tubes are open and to see if the uterus is a normal size and shape. I can only compare this to a lengthy smear test, it didn't hurt but it was assuredly uncomfortable. After these procedures I was given a mixed bag of good and bad news. The dye had travelled freely through my tubes which meant there were no blockages but my uterus appeared to be an abnormal shape. I had no idea what this meant and I wasn't given anymore information at the time.
During the follow-up appointment in October 2016 - my first meeting with Consultant Obstetrician & Gynaecologist, Mr Emmanuel Kalu - we talked about the results of the scan, the irregular shape of my uterus and the possibility that I could be suffering with endometriosis. And that was my first introduction to the condition. En-doh-mee-tree-oh-sis.
After studying the ultrasound and HSG results he tried to illustrate the possible semblance of my womb with a series of drawings. Doctor's scribbles are as bad as their handwriting so I've redrawn them for the purpose of my blog - I do like a good doodle. He suggested that he would be very surprised if the outcome wasn't option B or C.
Mr Kalu advised I would need a further procedure called a laparoscopy to determine if I was suffering from endometriosis. It would also reveal which of the three illustrations resembled the shape of my uterus, which would be critical if we wanted to have children. He explained about the small incisions he would make in my belly button (wince) and abdomen and the possible surgery he would carry out if endometriosis was found. I felt confident and happy being under his wing. We discussed private health care as this is something I could claim through my insurance at work, he agreed this would be the most favourable option.
Of course I went home and googled endometriosis straight away. I read pages and pages about the condition. I was astounded to discover that 1 in 10 women suffer with it in varying degrees. If it's so common, why has it not been mentioned before by my GPs, considering my previous history?
My first laparoscopy was booked in for 10th December, six weeks after my appointment with Mr Kalu. Unfortunately I had to postpone the operation due to suffering with a chest infection the previous week, I was devastated. I had to wait eight weeks for another date - Saturday 4th February 2017.
Because nothing significant showed up on the ultrasound, I didn't return to my doctor for another 12 months. We'd moved house shortly after the last hospital appointment and it took time to settle into the new neighbourhood and change doctors, I guess we again just assumed we would conceive naturally during this time. What happened next changed all our lives forever - my father suddenly and unexpectedly passed away on 1st December 2015 from a massive heart attack. My world was completely turned upside down, I adored my daddy. For a few months, whilst I was going through the various horrific stages of grief, I couldn't even bear to think about children. It was too painful to comprehend that my Papa would now never meet his grandchild or that our son or daughter would grow up never knowing my lovely dad. On the other side of the coin, mum's deep sadness turned into longing for a little person to fill a small part of the colossal hole dad had left in our lives.
Two months later I had been booked in for a transvaginal pelvic scan and hysterosalpingogram - thankfully abbreviated to HSG. The first is an ultrasound which involves the insertion of a probe, enabling detailed images of the uterus and the ovaries to be obtained. The second is an x-ray using dye to determine if the fallopian tubes are open and to see if the uterus is a normal size and shape. I can only compare this to a lengthy smear test, it didn't hurt but it was assuredly uncomfortable. After these procedures I was given a mixed bag of good and bad news. The dye had travelled freely through my tubes which meant there were no blockages but my uterus appeared to be an abnormal shape. I had no idea what this meant and I wasn't given anymore information at the time.
During the follow-up appointment in October 2016 - my first meeting with Consultant Obstetrician & Gynaecologist, Mr Emmanuel Kalu - we talked about the results of the scan, the irregular shape of my uterus and the possibility that I could be suffering with endometriosis. And that was my first introduction to the condition. En-doh-mee-tree-oh-sis.
After studying the ultrasound and HSG results he tried to illustrate the possible semblance of my womb with a series of drawings. Doctor's scribbles are as bad as their handwriting so I've redrawn them for the purpose of my blog - I do like a good doodle. He suggested that he would be very surprised if the outcome wasn't option B or C.
Bog standard uterus
Arcurate uterus - looks like a normal uterus, except it has a dip or a slight indentation at the top.
Septate uterus - the inside of the uterus is divided by a muscular or fibrous wall called the septum.
Of course I went home and googled endometriosis straight away. I read pages and pages about the condition. I was astounded to discover that 1 in 10 women suffer with it in varying degrees. If it's so common, why has it not been mentioned before by my GPs, considering my previous history?
My first laparoscopy was booked in for 10th December, six weeks after my appointment with Mr Kalu. Unfortunately I had to postpone the operation due to suffering with a chest infection the previous week, I was devastated. I had to wait eight weeks for another date - Saturday 4th February 2017.
Friday, 17 February 2017
IBS
Jon and I relocated to London in 2003 and bought a small two bedroom flat in Colliers Wood two years later. I enjoyed the lifestyle, I already had friends in London and soon formed new friendships through work and going out locally. It was around this time I started to experience abdominal problems which were becoming more frequent and more acute.
I became familiar with excruciating stomach and rectal cramps, constipation and horrible bouts of diarrhoea, especially around the time of my period. Bouts of cystitis became more persistent and painful. I found myself feeling bloated for 80-90% of the time and I became convinced that certain foods were not helping my cause. I was spending more and more time cramped up in the bathroom, usually at the most inconvenient times, i.e. five minutes before I was due to leave for work. Sudden peristalsis brought on waves of nausea and at times I didn't know whether I should be sitting on or hanging over the loo. Trying to focus on anything but the agony, the intense pain induced cold sweats and the need to grab onto anything in the vicinity for support (usually the bath or the towel rail). Anyone listening in would be forgiven for thinking I might be going through some kind of poop labour. As you can imagine, I'm extremely fed-up with the whole shitty situation (excuse the pun).
Another negative to the gut blockade is that I'm rarely hungry. Negative? I hear you say. Sometimes I go out for dinner and I can only manage a couple of mouthfuls before I feel full. Before you say that sounds like a perfect diet solution, it's not. I want to be able to enjoy the plate of food someone has lovingly prepared for me, not pick at it and offer it round the table. The only plus is that I never get hangry!
I haven't been on many holidays which haven't involved me going through an abdominal trauma of sorts. I've put this down to eating out most days, trying different foods and a change in routine. When relaying the experiences to friends on my return, they can't believe I still managed to have a good time, I guess I've become very good at dealing with it.
The first bad travel experience since I was put on the pill was Milan, Italy in 2006. We were there for a weekend to see our friend's band support The Magic Numbers and we wanted to see as much of the city as possible around the gig. As soon as we arrived, we headed to the nearest pizzeria and I attempted to eat a pizza the size of a large platter (albeit a very feeble attempt). Two days of Italian indulgence later I felt terrible, like I was carrying a lead weight in my abdomen which wouldn't shift. Sightseeing cancelled - I just wanted to crawl into bed.
Two other trips stand out for me for the wrong reasons. I was ill for the majority of our honeymoon in Sri Lanka, which certainly wasn't ideal when travelling. On the day long drive from Adam's Peak to Galle to I had to ask our driver to stop several times. It soon became apparent that there were a lack of public facilities on our route south, the only option was to knock on someone's door to ask to use the toilet in their home. I say toilet in the loosest sense of the word, hole in the ground with a curtain for a door was closer to the truth - any dignity I had was long gone. On a positive side note, I've adapted to being able to use the most repulsive toilets, even the cesspits at Glastonbury Festival are a breeze to me. Just to top the trip off, the taxi journey from Bentota to the airport in Colombo was possibly one of the worst experiences of my life, it felt like everything from the diaphragm down was set in concrete. I was in such excruciating pain, I could barely talk as I was trying to concentrate on not passing out. I came incredibly close to asking the driver to take me to the nearest hospital.
The second (and definitely the worst) holiday nightmare also involved a long journey. I'd been feeling constipated and bloated for a while before we left for Morocco in 2010, the full feeling didn't subside and I just felt worse over the first couple of days. Eating became problematic, managing just a few mouthfuls at each mealtime. We'd booked into a beautiful restaurant for our last night in Marrakech weeks previously and even though it was the last thing I felt like doing, we decided to keep the booking. Jon had become used to eating two meals so it was nothing new! The next day I was in agony, I felt like my stomach had been replaced with a 10lb bowling ball - the pain was crippling. It's a good job we didn't have to endure a 12 hour journey to the middle of the desert then. Oh crap.
I would abolish that horrendous day completely from my memory if I could. I was embarrassed and felt bad for the others in our vehicle who we'd just met and I hardly uttered a word to the whole way (thanks Mayra and Martin for being so lovely). Nothing helped with the pain and nausea, I was just concentrating on getting through it, willing both the journey and the hell I was going through to be over. Thankfully, by the time we'd got to the desert camp the following day I was relieved to be feeling a little better and I could start to enjoy the trip - mud hut toilets and all. A few days later, on a three hour bus journey from Marrakech to Essaouira my bowels decided to flip the situation on it's head and I had another problem to worry about, the dreaded D. I had no choice but to take Imodium which took me straight back to square one.
I don't mean to harp on about what happened to me on holidays, these experiences only stand out because I can place where I am when I'm feeling my worst. Of course there have been countless times when I've suffered at home or at work or when I've been out shopping, but I'll spare you of the encounters from various loos across the UK - that would make a very unrewarding read.
I decided to pay for a food intolerance test to determine if certain foods were the reason for my flare ups. This proved very interesting. After speaking to the nutritionist about the results, she advised me to cut out cows milk, eggs, wheat, onion, soy and yeast. The plan was to reintroduce each of these back into my diet gradually after a few months; it was basically the caveman diet. Unfortunately, along with the majority of food with any flavour, this meant no wine and no crisps - anyone who knows me will appreciate how much of a big deal that was! I was strict with myself and kept to the diet for a year as I was determined to see progress. Unfortunately, it didn't make too much of a difference to my symptoms, but I did lose half a stone in weight which is never a bad thing.
In the following few months I was referred to a dietitian at St George's hospital and I was advised to try various diets (fructose malabsorption, FODMAP) with little success.
Fed up, I returned to my doctor in October 2011 who once more referred me to the Gastroenterology department. After a couple of appointments discussing diet options (again) and drug treatments I was eventually booked in for a colonoscopy. This took place four months later in front of three student nurses who peered intriguingly at the tube hanging out of my butt - I was enjoying the sedation far too much to care.
The biopsy results came back and apart from a focal area of mild cryptitis there wasn't much to shout about. I was dumbfounded, how could they find nothing when I felt so terrible all the time? I was discharged with a diagnosis of chronic constipation and IBS and that was that. Sent off on my merry way. I felt dejected but I had to accept it.
Today, five years after being discharged, I'm still suffering almost every day.
I became familiar with excruciating stomach and rectal cramps, constipation and horrible bouts of diarrhoea, especially around the time of my period. Bouts of cystitis became more persistent and painful. I found myself feeling bloated for 80-90% of the time and I became convinced that certain foods were not helping my cause. I was spending more and more time cramped up in the bathroom, usually at the most inconvenient times, i.e. five minutes before I was due to leave for work. Sudden peristalsis brought on waves of nausea and at times I didn't know whether I should be sitting on or hanging over the loo. Trying to focus on anything but the agony, the intense pain induced cold sweats and the need to grab onto anything in the vicinity for support (usually the bath or the towel rail). Anyone listening in would be forgiven for thinking I might be going through some kind of poop labour. As you can imagine, I'm extremely fed-up with the whole shitty situation (excuse the pun).
I haven't been on many holidays which haven't involved me going through an abdominal trauma of sorts. I've put this down to eating out most days, trying different foods and a change in routine. When relaying the experiences to friends on my return, they can't believe I still managed to have a good time, I guess I've become very good at dealing with it.
The first bad travel experience since I was put on the pill was Milan, Italy in 2006. We were there for a weekend to see our friend's band support The Magic Numbers and we wanted to see as much of the city as possible around the gig. As soon as we arrived, we headed to the nearest pizzeria and I attempted to eat a pizza the size of a large platter (albeit a very feeble attempt). Two days of Italian indulgence later I felt terrible, like I was carrying a lead weight in my abdomen which wouldn't shift. Sightseeing cancelled - I just wanted to crawl into bed.
The second (and definitely the worst) holiday nightmare also involved a long journey. I'd been feeling constipated and bloated for a while before we left for Morocco in 2010, the full feeling didn't subside and I just felt worse over the first couple of days. Eating became problematic, managing just a few mouthfuls at each mealtime. We'd booked into a beautiful restaurant for our last night in Marrakech weeks previously and even though it was the last thing I felt like doing, we decided to keep the booking. Jon had become used to eating two meals so it was nothing new! The next day I was in agony, I felt like my stomach had been replaced with a 10lb bowling ball - the pain was crippling. It's a good job we didn't have to endure a 12 hour journey to the middle of the desert then. Oh crap.
I would abolish that horrendous day completely from my memory if I could. I was embarrassed and felt bad for the others in our vehicle who we'd just met and I hardly uttered a word to the whole way (thanks Mayra and Martin for being so lovely). Nothing helped with the pain and nausea, I was just concentrating on getting through it, willing both the journey and the hell I was going through to be over. Thankfully, by the time we'd got to the desert camp the following day I was relieved to be feeling a little better and I could start to enjoy the trip - mud hut toilets and all. A few days later, on a three hour bus journey from Marrakech to Essaouira my bowels decided to flip the situation on it's head and I had another problem to worry about, the dreaded D. I had no choice but to take Imodium which took me straight back to square one.
I decided to pay for a food intolerance test to determine if certain foods were the reason for my flare ups. This proved very interesting. After speaking to the nutritionist about the results, she advised me to cut out cows milk, eggs, wheat, onion, soy and yeast. The plan was to reintroduce each of these back into my diet gradually after a few months; it was basically the caveman diet. Unfortunately, along with the majority of food with any flavour, this meant no wine and no crisps - anyone who knows me will appreciate how much of a big deal that was! I was strict with myself and kept to the diet for a year as I was determined to see progress. Unfortunately, it didn't make too much of a difference to my symptoms, but I did lose half a stone in weight which is never a bad thing.
In the following few months I was referred to a dietitian at St George's hospital and I was advised to try various diets (fructose malabsorption, FODMAP) with little success.
Fed up, I returned to my doctor in October 2011 who once more referred me to the Gastroenterology department. After a couple of appointments discussing diet options (again) and drug treatments I was eventually booked in for a colonoscopy. This took place four months later in front of three student nurses who peered intriguingly at the tube hanging out of my butt - I was enjoying the sedation far too much to care.
The biopsy results came back and apart from a focal area of mild cryptitis there wasn't much to shout about. I was dumbfounded, how could they find nothing when I felt so terrible all the time? I was discharged with a diagnosis of chronic constipation and IBS and that was that. Sent off on my merry way. I felt dejected but I had to accept it.
Today, five years after being discharged, I'm still suffering almost every day.
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