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.