Showing posts with label Adenomyosis. Show all posts
Showing posts with label Adenomyosis. Show all posts

Wednesday, 13 December 2017

The Two Week Wait

Today marks the halfway point of my 2ww before I find out if I'm with child for the first time ever. While I'd like to report I've been blooming and a joy to be around, this would be a barefaced lie. It's been mental torture and the progesterone supplements I've been prescribed are HELL.

Progesterone, often called 'the pregnancy hormone' (or horror moan as I've renamed it), is produced by ones ovaries after ovulation and it's job is to prepare the lining of the uterus for implantation. Ladies going through assisted reproduction treatments are prescribed progesterone supplements because the egg retrieval process removes cells that would normally create progesterone. The supplements, usually in pessary form, are needed to thicken the lining so the embryo will hopefully implant and grow.


I started taking progesterone pessaries (1 x 400mg Cyclogest, morning and night) from the day of my EC and the next day I was already feeling unsettled. This might me a little TMI for some so feel free to skip this paragraph, but pessaries are messy little buggers and I'd been using the back door to try and limit the pants puddle. Unfortunately this has played havoc with my stomach and the pain from trapped wind and bloating has been excruciating at times. To cut a revolting story short, I’ve tried alternating but now I've had to switch to using solely the front door which has relieved my symptoms a little, although creates a lot more mess. It's the lesser of two evils, though for me it's a close call. The great pessary debate is something that's always discussed within the #ttc community online but ultimately it comes down to personal preference. While there are pluses and minuses for both arguments, I think you just have to suck it (or stick it in) and see, there is no right or wrong orifice!

The other twisted and perverse thing about progesterone is that the side effects mimic early pregnancy symptoms. So far I've experienced intense cramping which is similar to period pain so I'm on constant knicker watch, bloated tummy, sore boobs and the one that tops the rest - thrush. This really is not convenient when you're trying to shove pointy, waxy bullets through an area that feels like a furnace, shoot me now.

This has all been a bit of a head f**k, but I've also had some news from a friend which has quashed my already waning positivity. For the last few weeks I've been in regular contact with a couple of ladies going through the 2ww around the same time as me. While this is good thing because it really is a massive support to be able to vent about symptoms with women who know, it's also really sad when the first one to test gets a BFN. Unfortunately, three days ago, this is what happened to my friend Sarah, though she had her suspicions a few days before. You have all these ideas that we're all going to get our BFPs and we're going to go on to be pregnancy buddies but then reality kicks in - this might not work. My other pal, Vicky, is due to test the day before me so I have everything crossed for her. This process really is torture.

So apart from emotional trauma and pessary issues what have I been up to during my 2ww? I've actually been trying to keep things as normal as possible. I took the day off after transfer and went for my third acupuncture appointment in Kingston, Victoria focused on blood flow this time and I nearly drifted off to sleep during the Zita West meditation. I felt so floaty after my session, I decided I was in the mood to do a little bit of shopping and even allowed myself to feel a little bit festive (very unlike me!). The next day (after feeling guilty about over doing it walking round the shops) I went back to work, partly because I wanted to get back to normality so my mind didn't implode but mainly because I had no holiday left.


Last weekend we bought a Christmas tree and decorated the house, which is very early for us! I enjoyed a lovely (alcohol free) dinner with friends at Côte in Wimbledon which was a welcome distraction from symptom checking and the negative thoughts that have started to creep into my head. Over the last couple of days I've been analysing every twinge, cramp or peculiar feeling as my period is due any day now and I've started to go into panic mode; rushing to the loo to check everything is in order every five minutes. Poor Jon must be really fed up with me now as the more anxious I've been getting, the more clingy I've become; my need for cuddles extreme! I've also been having completely irrational thoughts, such as thinking my bloated tummy is crushing the embryo. What fun!

One week until test day.



Wednesday, 6 December 2017

Embryo Transfer

Wednesday 6th December 2017
King's Fertility
King'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!


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.

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:

  • 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.

Monday, 25 September 2017

EndoWhat?

Last night I decided to sit down and watch the film 'EndoWhat' with Jon, something I've wanted to do for a while. It's a very powerful, honest, true-life programme, documenting women's struggles to get diagnosed and the crippling conditions some ladies are forced to live with because their doctors convince them their pain isn't real. It's a good tool for women, men, friends, loved ones and also people in the medical profession to really understand the severity of this disease which is almost a complete mystery to mainstream society. The main topics of discussion are diagnosis, beneficial and counterproductive treatments, anti-inflammatory diets, the impact of the rise in chemical usage and infertility.

While I thought it was a really positive, educational film, I've got myself in a bit of a tizzy as I've now convinced myself that having excision surgery before IVF would be my best option, even though I've been told otherwise. I have my first IVF consultation tomorrow so I guess I just have to put my faith in Mr Kalu, but I am a self-confessed control freak and I feel way out of my depth.

If you fancy getting endo educated, here's the link.



In other news, September has seen a positive change for the endometriosis community in the UK. Brand new NICE guidelines have been released for healthcare professionals, commissioners and women with suspected or confirmed endometriosis. This will hopefully result in ladies getting a painless referral through their GPs, leading to diagnosis and more effective management.

Yay for progress!

Saturday, 23 September 2017

Carefree in Croatia

I'm at my most content when I'm travelling and this trip couldn't have come at a better time. It was bliss to leave all the cycle tracking, temperature taking, peeing on ovulation sticks firmly back at home and have a proper break from everything fertility related.

It was the first family holiday I've been on since I was a teenager almost twenty years ago so I was especially eager for this trip to come around. My mother had never been on a plane (my father was scared of flying and they used to travel everywhere by boat or train) so I was also excited to see her reaction to the maiden flight. I was also looking forward to spending some quality time with my brother, even though we see a lot of him as he currently lives with us, we rarely go away together.


The flight from Gatwick to Split was typically one of the most turbulent I've experienced, I was trying to appear calm (whilst gripping the life out of the armrests) as I was sitting next to Mum and didn't want to alarm her. She didn't seem the least bit bothered of said disruptions and was far too busy taking photos out of the window the whole way there!

Croatia was stunning. After spending two days in Split, we hired a car and drove north to Plitvička Jezera as we wanted to visit the famous Plitvice Lakes National Park. The chain of terraced lakes and waterfalls was one of the most picture-postcard perfect places I have ever had the pleasure of seeing. Even though it was heaving with tourists, it felt peaceful walking along the boardwalks next to the crystal-clear water and I was happy to take in the beautiful scenery whilst contemplating our upcoming journey.

Two days later we drove back to Split and boarded a boat for Hvar island, I'd found an AirBnB apartment in a sleepy little town called Jelsa a few weeks previously. It turned out to be quite basic (I might have miscalculated the bedrooms and Jason had to sleep on sofa cushions in a tiny room adjoining Mum's) but it had a pool and after a few days travelling we all needed a bit of chill time. We had the terrace and pool to ourselves all day and I realised it was the first time in months that I felt completely at ease (did I mention I love the sunshine?) I suddenly regretted not booking more time in Jelsa as the next few months, I'm assuming, will be far from the calm we experienced on Hvar island.

We arrived home after a few more days seeing new beautiful places - we met with Jon's parents on another Adriatic island (Mljet) and spent time in lovely Trogir.

We are finally ready for our next journey. Bring it on.


Sunday, 23 July 2017

Turning Thirty-Seven

We've just returned from a fantastic road trip around Scotland. The lovely weather has surprisingly carried on well into July and our week across the border was just glorious (yes, really!). Our Scottish jaunt actually started with a night in Newcastle before driving up to Fasque Castle in Aberdeenshire for a few days celebrating the wedding of our friends, Jake & Laura.


After a mad but definitely fun-filled few days partying with the Scots in Fettercairn, we made our way down to Edinburgh for a couple of nights. We did a lot of walking and it was lovely to spend a couple of days just the two of us before heading across to Glasgow (via the Trossachs and Loch Lomond) to see friends.

On our way back down to London, we stopped for a final night in Liverpool to celebrate my birthday (a day early) with our friends Rob & Gill. They announced they were getting married on my birthday next year! Whilst we were celebrating with copious amounts of prosecco, it got me thinking about where we would be in a year from now - I could be pregnant.

We drove back to London the following day, the journey took what seemed like a lifetime because we'd been up late and I might have had a wee hangover. I've always liked to celebrate birthdays but they also bring a stark reminder that another year has gone by without being able to conceive. Relieved to be home, we made a cup of tea and started going through the post that had built up over the last week. Hidden within the pile of boring bills and take-away menus was the best birthday present ever... our IVF referral letter!


Yesterday, we continued the celebrations by having a BBQ at our house. Even though there was a deluge of rain which persisted all day (summer is officially over - boo!) I had such a fantastic day. Buoyed by the letter from Kingston ACU and good-spirited friends crammed into our kitchen, it was another birthday down but one to remember.

Sunday, 9 July 2017

Sunny Days

We've had a really busy summer so far this year, it's been lovely to immerse ourselves into doing things we enjoy doing, rather than thinking about the worries of the last few months and the inevitable stress that will come later in the year when we start our IVF journey.

It has been unseasonably warm for weeks, with no sign of the Great British Summer that we all know and (not) love. Even when I have bad pain days, when the sun shines, so does my mood - everyone knows I'm a sun-worshipper! I've had a few horror days over the last couple of months, but thankfully these have been far outweighed by the good ones and I believe this is down to good old vitamin D.

I've enjoyed cocktails at the top of The Shard, dinners with friends, a day at the golf, a BBQs at home, a hen weekend in Brighton, our annual caravan weekend in Dorset, my very first DRY Glastonbury Festival (weather, not alcohol), a weekend at Centre Parcs with the girls, a day at Wimbledon (not working for once), a couple of concerts (Mac DeMarco & Guns N' Roses) and we met our friend's brand new beautiful twin girls. That's quite a lot in two months but I wouldn't change anything, it's almost as if we've enjoyed ourselves to the absolute maximum before we start our travels on the unknown road ahead of us.


One of my best friends, Clare (who I've known nearly forever), also told me she was expecting her third child. Although I'm completely over the moon for her and her partner Simon, I can't help but feel a huge pang of sadness for ourselves. A few of my friend's pregnancy announcements have hit me hard over the last few years, especially those who are having their first as it means one less friend in my Non-Mum network, but this one was particularly tough. We often said that maybe we would be pregnant at the same time, she was thinking about her third child and she knew we were trying too. Now another bump buddy boat has sailed. So many of my friends have now completed their families and I feel if we ever did have our miracle baby, I'd have no-one to enjoy my pregnancy with.

Last weekend I enjoyed, for the most part, a tranquil break with the girls at Center Parcs. Most of my oldest friends live in Norfolk where I grew up, but Clare and I live in different parts of the UK, so it's rare that we all get together, especially with no husbands and children! Of course this was the weekend that my dearly beloved Mrs Menses decided to show up and pretty much destroy any hope of a relaxing weekend. Luckily, I managed to squeeze in an afternoon at the spa before she barged her way into my plans. The following day was one of the worst pain days I've had for a long time. I spent the majority of the day curled up in my PJs on the sofa, necking NSAIDs like they'd gone out of fashion. I managed to join the girls in the pool later in the afternoon, albeit with what felt like a watermelon under my swimwear, but at least I managed to leave the chalet for a couple of hours.


I've found myself at times, especially after a bad flare up, thinking about further surgery to completely free myself from the pain that comes with having severe endometriosis. I can't say I've noticed an improvement in my symptoms since my laparoscopy earlier this year, so apart from having the abnormality in my uterus removed, I'm wondering what good it has actually done. Mr Kalu has said this is definitely something I should consider after I've finished with my fertility journey, but because surgery can create adhesions which would potentially affect my fertility further, he has advised against anything drastic until then.

I've been reading a bit online about this and I've discovered because I have Stage 4 endometriosis, I am entitled to be referred for full excision surgery at an accredited BSGE centre. There is a list of centres on the website and I've already started looking at my options for the future.

In the meantime I'm stuck in limbo.

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.

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.


Monday, 8 May 2017

Tough Mudder Legionnaire

Two days ago I completed my second Tough Mudder© event. This was an achievement in itself (or maybe an act of sheer madness) but even more so with the uninvited guest that rudely showed up that morning. I'd woken up feeling nervous and excited but those feelings were soon replaced with horror - my good friend Flo was 8 days late and she had chosen THAT day of all days to make an appearance. F**k.

The inevitable bloating and cramps soon followed so I dosed up on analgesics alongside my protein packed breakfast and hoped for the best.


I managed to control the pain fairly well during the event, there were only three of us so we flew round the 10 mile course in under 2½ hours. There are certain times where being vertically challenged has it's advantages and doing any kind of team assault course is definitely one of them. I watched 15+ stone men trying to squeeze through small tunnels whilst I sailed though, I was never short of volunteers for a leg-up over the 10ft walls either!

Later that evening, I was curled up in agony wondering what on earth I must have done in a previous life to deserve this torture.

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.

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.