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.

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.

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.

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.

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.

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.

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 

Recovery

My friends have been fantastic. I hadn't really talked about endometriosis or the fact I was going into hospital with many people before the laparoscopy, 1) because it hadn't been confirmed and 2) I was only just getting my head around it. During my time in hospital, after Mr Kalu had given me the diagnosis, I had time to digest what I'd been told and I decided that I didn't want to hide anything from my friends and family. I think the reason endometriosis isn't widely understood is because nobody appears to be talking about it - why is it a taboo subject? Conversations since my diagnosis all follow the same path, or rather, cul-de-sac. Everyone seems to know someone who has endometriosis - a friend, a friend of a friend, a sister of a friend, but that's as far as their observation goes.

No sooner had I arrived home after the operation, I was delighted to get a visit from my friend Helen and her little girl Sophie. It temporarily took my mind off the pain as my incisions were starting to get very uncomfortable, especially where the laparoscope went through my navel. The messages coming in from friends were so supportive, I was glad I'd made the decision to share my diagnosis with my nearest and dearest. Over the next few days more cards and flowers arrived and despite feeling dispirited, I was definitely feeling very loved.

I found the pain to be manageable with paracetamol and ibuprofen every few hours for the first couple of days. I had codeine from the hospital on standby but I only wanted to use this as a last resort. I was feeling incredibly bloated and already quite constipated so I didn't want to exacerbate this by throwing codeine into the mix.

It took much of the first week to recover from the effects of the anaesthetic. It felt like I'd been given quite a high dose as I was drowsy and fatigued a lot of the time. One minute I would feel bright as a button, then followed a surge of lethargy that I couldn't shake. The nodding dog was back. I tried to get up and walk around the house as much as possible to try and reduce the swelling in my stomach as this was by far the most uncomfortable part of the recovery process - I can only compare it to feeling like an over-inflated balloon, ready to burst at any given minute. That paired with the pulling sensation on my incisions made getting up and sitting down a little tricky, especially for the first couple of days. I soon adapted to using a swivel motion and my arms to push myself up rather than my abdominals - those muscles were in hiding anyway.

Another issue I was struggling to cope with was the heavy bleeding. I put this down to my uterus having to accommodate this new contraption and the surgery rather than a bulky ten day period. Having been on the pill for so long, I wasn't used to so many days of continuous copious bleeding and I wasn't dealing very well with having to revert back to using sanitary pads. It had been 20 years since I banished the cumbersome days of big knickers, it felt like I was regressing. To put it bluntly, I felt gross.

Scarlett had most definitely returned to Tara.

The pump in my shower unit decided to inconveniently give up the ghost just before I went into hospital and it was a few days before we could get someone in to fix it. I was told not to have a bath for a week after the operation as the wounds aren't supposed to be submerged but unfortunately there was no other option. I felt horrible enough, I certainly wasn't going to go cold turkey on cleanliness. For the first few days, I had to get Jon to help me wash my hair by sitting in a very shallow bath and doing, only what I can describe as a back breaking yoga pose to prevent the dressings from getting saturated while he poured jugs of water over my head. I still had the waterproof dressings they put on in hospital and I was keen to leave these on as long as possible, or at least until the shower was fixed.

Five days into my recovery and I was irritable and gloomy. I hadn't been able to go to the toilet since before the laparoscopy and I was feeling fat and heavy. It was though I had a ball and chain attached to me, although the lead weight was in my tummy instead of round my ankle. I was itching to get out, but I didn't feel quite well enough to leave the house.

I'd had enough of trying to sleep on my back but my usual curled up foetal position was too uncomfortable with the bloat and the stitches. I was also having very peculiar and somewhat eerie dreams, which I put this down to the hormones I was taking. Another side-effect was night sweats, I don't mean waking up feeling a little bit clammy, oh no no no - I'm talking full-on dripping wet bed sheets. And there was me thinking that HRT was supposed to manage menopausal symptoms!

I filled my recovery time watching episodes of Girls, which I didn't know until later is created by and stars Lena Dunham who also suffers with endometriosis. When I was feeling a little perkier, I started researching the jargon of my diagnosis letter (next post) and poured over information and forums on the internet. I was amazed by how many websites there are on the subject. There are so many women with such debilitating symptoms, I began to feel lucky that I've been able to live a relatively normal life. I joined facebook support groups and spent hours reading everyone's stories. This was when I decided to write my own blog, to really understand my symptoms starting at the very beginning. I trawled through all my old GP and hospital letters, piecing things together bit by bit until I had a timeline of events. The light bulb in my head was slowly getting brighter.

Over the next few days I started to feel a little more human and my swollen stomach started to slowly deflate. After five days of taking a cocktail of Movicol and prune juice, I thankfully managed to pass the smallest of poops so that was a start. In the days that followed, I became more active and could now walk around the house and carry out basic chores with relative ease. A week after my surgery, I decided to change my dressings as they were starting to irritate me, plus I wanted to take a peek at the damage. I was pleased with the two abdominal incisions, they were only a centimetre wide and looked like they were healing nicely. However, the neat little inward belly button I've been used to for 36 years had changed quite dramatically. In its place was, only what can be described as a bottom shaped outie - I was horrified! I told myself that it was still early days and I should give the wound a chance to fully heal before mourning my naval.

Ten days after the laparoscopy and I was still experiencing quite a lot of discomfort, despite being a lot more active and the diminishing bloat. Some days I felt so cramped and knotted up inside, I couldn't eat anything. I was also getting stressed with what seemed like eternal bleeding - I didn't have enough big knickers to cope with this many days so Jon had to take a trip to M&S to stock up. I longed to be free of it.

I found that searching the internet can also have its disadvantages, a lot of medical information just isn't true. I started to make connections between endometriosis, HRT and the increased risk of cancer. I also read many reports that endometriosis is also connected to fibromyalgia - a condition my mother suffers with. I brought this up with Mr Kalu at my follow-up appointment two weeks post-op and he dismissed this information immediately. He flatly told me to stop reading material on the web and put any concerns I had directly to him. I must admit, I felt a little foolish.

I felt a lot more positive following my consultation. He was pleased with how I was healing and we discussed the surgery he had carried out in more depth (cue another drawing). After listening to my explanation of the symptoms I've had since I was an early teen, he expressed that I've probably been suffering from endometriosis for all of my reproductive years. If I hadn't been investigating my fertility issues, I may not have ever uncovered the condition. He booked me in for another procedure in a few weeks so he could check on my internal progress - this would involve a hysteroscopy and thankfully no incision surgery. In the meantime, I was to carry on taking Progynova (oestrogen) and in a few days to start a course of Provera (progesterone) three times a day to induce a bleed. Another f***ing bleed. My positivity was short-lived.

Over the next few days, I advanced from wearing leggings to jeans, my stitches fell out, I went back to the gym and I returned to work. Initially, I felt quite vulnerable after each of these milestones, but as with everything new, it takes a bit of getting used to. It was definitely progress.

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.

Introduction

So, the E word. The one I seem to have such difficulty pronouncing. Despite the tricky name, endometriosis is actually very common - it's estimated to affect 1 in 10 women worldwide and around 1.5 million women in the UK are currently living with the condition. I'm sure some of you have heard of it and probably know someone who suffers with it, but for some reason it seems to be rarely discussed. I mean, how have I never come across something so commonplace in women's health? Why has it not been suggested before now that endometriosis could be the reason behind the symptoms I've been suffering with for so long if it affects that many women? Shockingly, the average time span for a women to get diagnosed with endometriosis in the UK is 7.5 years.

I've decided to write a blog, not only for my own benefit, but I hope it will also bring support and comfort for others going through the same experience, it's always nice to know you're not the only one suffering.

Endometriosis [en-doh-mee-tree-oh-sis] is a chronic and debilitating condition where tissue similar to the uterine lining (endometrium) is found outside the uterus. It is commonly found on the ovaries, fallopian tubes, the surface of the uterus, the bowel and on the membrane lining of the pelvic cavity (peritoneum). The ebb and flow of oestrogen throughout the month works on this external endometrial tissue just as it does on the uterine lining, inciting growth when oestrogen levels are high. Fine for normal tissue within the uterus, but when excess endometrial tissue in the pelvic cavity grows, it can be debilitating. It can cause severe pain, unusual bleeding, adhesions and damage to other organs, including the bowel and bladder. It can also lead to depression, fatigue and even infertility. In fact, the prevalence of endometriosis in women with infertility is thought to be somewhere around 40%. Because endometriosis is an oestrogen dominant condition, it causes hormonal imbalance. This, plus inflammation and scar tissue damage isn't a good recipe for healthy fertility.

A week ago I was officially diagnosed with severe endometriosis (plus other complications which I'll go into later) after undergoing a laparoscopy - the gold standard and only definitive procedure to confirm it. My consultant decided to grade my condition as Stage IV (most severe) because I not only have significant lesions on the outer surface of the uterus, but also deep infiltrating endometriosis (DIE) on the pelvic wall peritoneum and bowel. My lower bowel is fused and hitched right up to the back of my cervix. This explains a lot.

This diagnosis has surprisingly come as a bit of a relief in a way, as I can now put a name to the symptoms I've been experiencing for many years. I no longer have to explain to people that I have no idea of the reasons behind the chronic pain, cramps, constipation and - at the other end of the poo scale - the literal shitstorm that inevitably follows. I no longer have to tell people I suffer from IBS because the doctors didn't know how else to classify it when all the testing showed nothing. I can now start to follow a diet that might actually help my symptoms rather than the 'clutching at straws' diets I've previously tried.

Now I have a diagnosis, I can hopefully start to manage it. Wish me luck.