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!

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.

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.

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.