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.

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.