*Guest Blog* A story of Endometriosis, hysterectomy and fistula: “For the first time in the majority of my adult life I wasn’t reliant on pain killers”

I’m really pleased to be able to bring you Jane’s story, in her own words. I’m incredibly proud of how far she’s come and how well she’s doing. It takes great emotional resilience to overcome the challenges she’ll tell you all about. If you’ve got Endometriosis or know someone who has, please share her story. Well timed Pelvic Health Physio can help people to avoid surgery by improving painful symptoms, and will always also support them through their complex surgical recovery to regain their lives.

Jane

Where to begin? Well, in the words of Julie Andrews, let’s start at the very beginning, a very good place to start.

I always had very heavy periods but I was told that periods hurt, it’s normal, just take some painkillers and just get on with it. Which I did. I didn’t really let it bother me, but as I grew older, I found that I was sometimes in agony with pain. The pain got worse when I was in my late teens. I was finding that I was regularly going to the doctors but wasn’t getting anywhere.

I was in considerable pain constantly, but I was getting the impression that either I should just deal with it or that it was all in my head.

When in university, I had a sudden onset of severe pain and collapsed during a lecture. If this wasn’t embarrassing enough, I was lying on the floor of the lecture room with lots of very concerned faces looking down at me when I threw up everywhere. Very embarrassing!

I was taken to hospital where they diagnosed a very large ovarian cyst, which was subsequently removed a few days later. I hoped that this was the cause of my issues with pain and that it would all settle down. Boy, was I wrong!

I found that I was still experiencing severe pain and was now finding that I was passing large manky brown clots. I was very often sick and was often missing university as a result. I had to repeat a year as I was taking so much time off. I eventually graduated though. I moved back home and started looking for work.

I had wanted to follow my dream career, and aced the initial exams to get in. However, there was one very big obstacle – my health. I had to take a full medical, and unsurprisingly, I was declined on medical grounds. I was fairly despondent about this.

Time moved on, but I was still in considerable pain. I was being hospitalised every few months, usually with suspected appendicitis, however each time I was told that there was nothing showing up. More and more, I was getting the impression that doctors thought that I was some kind of hypochondriac or a junkie looking for a cheap quick fix. I was also given different courses of contraceptive pills as some can help with period pain. Yeah, right.

Luckily, at around this time, a new GP joined my practice. He soon realised that I wasn’t making it up, and for the first time, I felt that my symptoms were being taken seriously. He was brilliant and referred me to see a consultant gynaecologist. My GP suspected that I had endometriosis but needed the gynaecologist to diagnose it. Great, I thought, I’m finally getting somewhere! Um, nope. The gynaecologist that I saw wasn’t great. He was very dismissive and did not want to operate due to my age. He then prescribed more contraceptive pills, even though I protested that I’d already tried a variety of them, and then sent me on my way. Unsurprisingly, the contraceptive pills didn’t work. I was hospitalised a few more times. I then saw the gynaecologist again. This time, he reluctantly said that he would add me to his list to do investigative surgery.

The day of the surgery came around. I saw one of the consultant’s junior gynaecologists. She was quite dismissive and didn’t seem to think that they would find anything. She also said that I was very young to have investigative surgery, and probably would want children at some point. Ah, this old chestnut! If I had a pound for every time a doctor has said this to me, I could easily retire and go live on my own private island. I may be exaggerating slightly here! Still, I digress.

When I came around from the surgery, the same junior doctor sidled into my cubicle armed with my notes, and a box of tissues. She said that I had extensive endometriosis and that the chances of me ever having children would be slim to non-existent. She then pushed the box of tissues at me. I can’t remember much of this, but my Mum was present and she swears that I looked blankly at the tissues, looked at the doctor who was expecting me to take a tissue, then politely took a tissue and just held it dutifully. I’m sure that the doctor was expecting me to fall apart weeping over my non-existent and now confirmed as pretty much impossible children.  Um, nope. I’ve never wanted children, so the fact that I was unlikely ever to have children wasn’t too much of a blow. I know that for most women, this would be horrific, unwelcome news, but for me, it wasn’t. I was 24 at the time.

As I now had a definite and real diagnosis, I thought that things would now become much easier. I started reading up on endometriosis and tried a few different holistic remedies that were recommended. I cut out some things from my diet and started drinking peppermint cordial which apparently is the best thing for endometriosis and tastes divine. Not sure about this statement, the only thing going for the peppermint cordial as far as I could see was that my breath was always minty fresh! I soon gave up on this and didn’t notice any difference at all.

I was still getting hospitalised on a regular basis and spent one of the jubilee weekends in hospital which was miserable as could hear all the street parties and fireworks going off whilst I was confined to bed. Every time I moved, I was sick. I was finding that I couldn’t make any long-term plans as I never knew when I would have another flare up. This cost me friendships as I kept having to let friends down. I was hurt at the time by this, but in hindsight it was a good thing as it made realise who my true friends were.

This leads me onto relationships. I was in a long-term relationship whilst in University, my boyfriend couldn’t understand why sometimes I couldn’t be intimate with him, and the relationship began to break down. He wasn’t the nicest of men (I use the term lightly) so very often tried to put unrelenting pressure on me to have sex. It was a good thing when the relationship finally came to an end. I found it hard to commit to new relationships as I didn’t want to feel settled only for things to end due to the endometriosis.

At the same time, I was still seeing the gynaecologist, who would just flip through my notes, stroke his chin, and prescribe yet another batch of contraceptive pills. On each visit, I would plead for him to operate as the drugs don’t work but was told that I was far too young and that I would want to have children at some stage. Yup, even though I’d been told that this was very, very unlikely, not to mention the fact that I was very vocal in not wanting children, this kept coming up over and over again. He did prescribe a course of injections which were supposed to be marvellous but did nothing for me other than put me through a temporary type of menopause. This wasn’t great, being 26 and getting hot flushes all the time. It wasn’t helping my non-existent social life at all!

I was understandably getting more and more frustrated with the lack of progress and the reluctance of my consultant to operate, so my GP referred me to see a new consultant. She was brilliant, very understanding and was much more open to the idea of surgery to remove adhesions. She operated on me, and things did settle down…. for a short while.

Unfortunately, it didn’t last, so over the next few years, I had a few more operations to remove adhesions. Each time, this would alleviate the pain, but it would always be a short fix. I always asked before each surgery if they would remove the right ovary as this seemed to be causing most of the problems. However, each time I was told that I was far too young to have an ovary removed, and that I’d want to try to have children at some point. I got so fed up with having the same conversation that I wondered whether I should have a tattoo across my forehead saying “No, I don’t want ******* children!” It would certainly save time. I hated the fact that when medical professionals asked me about children, they would always assume that I didn’t know my own mind and would also ask me in a certain hushed tone, that I usually associated with terminally ill patients. I hated this so much.

Although my consultant was refusing to remove an ovary, she was still prepared to operate, which was a massive improvement from the previous consultant. It came as a blow to find that she was due to retire. I had to start afresh with another consultant who was from the same school of thought as the first consultant and just wanted to treat me medically. This wasn’t working.

I soon changed consultants again and found a new consultant. Again, she was very supportive and was willing to operate, but again not willing to remove the ovary because, sing it with me, you know the words, you’re far too young and you’ll want to have children. I was getting resigned to having to have surgery every year or so forever.

During this time, I met ‘the one’. He was great, very supportive and was very understanding of my condition. We also had the conversation early on that children wouldn’t be an option. Thankfully, he was fine with this. He’s been a rock. We’ve been together 10 years now and engaged for 8. We have got a family, but they have got 4 paws! My fiancé was getting more and more concerned about the lack of progress in the NHS and suggested that I went private.

I saw the same consultant, who by this time had already operated on me either 2 or 3 times. She had a good read of my notes, then said that she would need to operate again. I was just preparing myself for the inevitable knock back when I asked for the ovary to be removed when she said a few words that I wasn’t expecting – have you considered having a hysterectomy? Well, I had, but assumed that this wouldn’t have been an option due to my age and me not having children. I was very surprised that this was offered but accepted the offer more or less straight away. I was talked through the possible complications and was told that I would need to have physio with a pelvic health specialist after the surgery.

I had the surgery a few weeks later and was allowed home after a few days in hospital. For the first 3 weeks, I felt amazing. I didn’t have much pain, and for the first time in the majority of my adult life, I wasn’t reliant on pain killers. For the first time, I was allowing myself to think more long term, something that I had avoided.

Sadly, this didn’t last. I was finding that I was getting more and more watery discharge and was having to change pads frequently. This came to a head when I woke up one morning to find that my bed sheets were soaking wet. I had wet myself. We had visitors staying with us, so I slunk downstairs clutching my sopping wet bedding, threw them straight in the wash then went in the shower. I got out, then sat on the edge of my bed in a daze. I didn’t know what to do. I was bewildered by what had happened. I certainly didn’t want to go downstairs and be sociable. I forced myself to go downstairs but just stumbled around in a daze. This was on the Sunday. I was able to get an urgent appointment with my GP on the Monday, who recommended that I see my consultant. I made an appointment to see her, but there was a delay of 2 weeks as she was on holiday. During this time, I was waking up every morning soaking wet and was wetting myself constantly. I was feeling very despondent about this and was very reluctant to tell anyone what was going on. I only told my fiancé as he was seeing me changing the bedding daily. When I saw my consultant, she advised me that I had a nasty water infection and that this can cause incontinence issues and that it would settle. I was given antibiotics and was told that if it didn’t settle, that I would need to see a urologist. She also referred me to see the pelvic health specialist physio for pelvic floor exercises. She told me that Jilly was extremely experienced and had a wealth of knowledge in pelvic health, so I assumed that I would be seeing a kindly, middle aged woman.

I dutifully made the appointment. I had no idea what to expect but assumed that I would be given a sheet of exercises to do to strengthen my pelvic floor then sent merrily on my way.

When I arrived for my appointment, I was given a questionnaire to fill in about my bladder and bowel habits, and if I was experiencing any problems with intimacy. I filled out the questionnaire, handed it back to the receptionist, and waited. As I mentioned, I was expecting to be seen by a kindly, middle aged woman so was surprised when a young physio bounded over, introduced herself then asked me to follow her to the treatment room. Jilly was lovely, I think that she sensed that I was quite nervous so put me at ease straightaway. She went through the questionnaire, then asked more probing questions about my health in general and about my pelvic health. It then came to the point in the conversation where Jilly had to ask about children, and for the first time I didn’t feel judged for not wanting children and she didn’t patronise me by telling me that I’d change my mind. This was amazing! The appointment lasted for an hour and I left feeling more positive about my situation. I was to make a follow up appointment.

In between the first appointment and the second appointment, I was hospitalised with a severe water infection. I was seen by a junior doctor who assured me that the incontinence was just due to the water infection and was nothing to do with the hysterectomy, but if it didn’t settle down, to see a urologist.

I then had my second appointment with Jilly. This time, after having a chat about my symptoms, she asked if she could examine me. The examination was a little bit uncomfortable but she was very gentle and was trying to put me at ease by chatting about cats – one of my favourite subjects! I was trying my best to ignore what she was doing as this is my coping method as I’ve never been fond of having to have physical examinations, when to my horror I realised that I’d wet myself. I was mortified. Jilly left me alone to clean myself up and get dressed, then came back into the room. Thankfully, she didn’t ask too many questions, so I was able to slink away to the closest bathroom. I stared at myself in the mirror and I didn’t know what to do. It was quite tempting to just stay in there, in relative safety where I didn’t have to face anyone or have to admit what was becoming more and more clear, that I was 38 years old and incontinent. Eventually, I slunk out of the bathroom, and headed home. As this was just a few weeks after my surgery, I couldn’t drive at this stage, so I was on the bus. The journey home took the usual length of time, but it felt like the longest journey ever. I was feeling very paranoid that I would wet myself on the bus so was very relieved to get home. I was still feeling very embarrassed about what had happened so emailed Jilly to apologise for what had happened. Jilly was amazing, she told me that it was a very regular occurrence and that I hadn’t been the first or the last person that day who had wet themselves. It also gave her a good idea of how my bladder was feeling. This made me feel slightly more at ease, although still feeling very dejected.

I had already booked another appointment to see Jilly, and I spent the next week umming and ahhing about whether I should go back. I was very reluctant to go back and was feeling very scared that I would wet myself again. I kept the appointment, and before the appointment, I psyched myself up to go in. It was touch and go.  Jilly was lovely and gave me plenty of reassurance. She didn’t do a physical examination that session which I was extremely grateful for, but she was very positive that she could help with my symptoms and could get me back to normal within 3 months. I wasn’t convinced about this as I had bitter experience of my health not being that straightforward so probably sounded a bit dubious about Jilly’s capabilities.

Over the next few sessions, I became slightly more positive about my situation. Jilly was always very upbeat, and very often mentioned about my bladder becoming “a happy bladder”. Whenever she said this, I would always think to myself “happy bladder? More like a ******* livid bladder!”

I had made an appointment to see a urologist, and the appointment date came around. The urologist didn’t seem interested at all and I got the impression that he had made up his mind that he would refer me before I’d even set foot in the door. He didn’t examine me, just referred me to see one of his colleagues to have urodynamics carried out. He didn’t explain much about it, so it fell to Jilly to explain what it entailed at our next appointment. Jilly always explained what was going on in plain English without feeling the need to try to show off her knowledge of medical jargon as some consultants and other medical professionals tended to do. During these appointments, I very often found that I was left wondering what was going on and having to do my own research on the internet to find out what they were on about. Jilly never did this.

I was off work at this point, my work had been very supportive whilst I was recuperating from the hysterectomy, but their support was wearing thin. I didn’t want to, but soon found that I had to explain about the incontinence. This was humiliating, and I hated the thought that my work colleagues would find out about what I was going through. Work referred me to occupational health and I had to have regular telephone interviews with them.

I had my appointment to have the urodynamics carried out. For those like me who have no idea what this is, it’s essentially getting special liquid dye pumped into your bladder whilst loads of x-rays are being taken to find out what your bladder is doing and why it’s leaking. It isn’t the most pleasant experience, but it seems to be excellent to establish what’s going on with your bladder. The consultant that did the urodynamics was great. He explained everything and reassured me throughout. He was able to give a diagnosis of vesico vaginal fistula, or VVF for short. This would need to be confirmed with a CT scan, and would then require surgery to repair it. For the non-medical readers, a vesico vaginal fistula is an abnormal opening between the bladder and the vagina, this meant that urine was flowing into my vagina and causing the uncontrollable leakage. This damage would have been caused by the hysterectomy.

This was a definite diagnosis. I now knew that I would require further surgery, but was faced with a dilemma, to have it done privately or to wait and have it done on the NHS.

I also suspected that as I now needed more surgery that my job was at risk. This was a major concern for me. I really enjoyed my job and was really good at it and didn’t want to contemplate having to leave it. Sadly, soon enough I lost my job on health grounds.

This was a major blow for me. I had now lost my income, and my purpose in life. I had had to build my life back up so many times before with the endometriosis, and this was the final straw. I had lost so much already to my health; my dream career, relationships, and friendships. I couldn’t see any way out and I was struggling to cope. I was afraid to go out as I didn’t want to run the risk of wetting myself in public. More and more, I found myself having very dark thoughts and I was having serious ideas of harming myself. I had worked out a plan but was always very conscious of hurting the people that I loved, so never acted on it. I kept trying to summon up the courage to tell someone, anyone how I was feeling but just couldn’t find the words to tell them.

I think that Jilly sensed that I was struggling, even though I didn’t tell her. She said that she thought that I was hiding how I was really feeling from her which I was. I have no idea how I managed to hold things together during that particular appointment. After the appointment, I realised that I needed help. I emailed Jilly and said that I was hiding how I was feeling. Jilly came back immediately and said that she was there if I needed / wanted to chat and also suggested that I see a counsellor. This was the kick up the backside that I needed. I made an appointment to see a counsellor which helped. I had a few sessions with her and was able to be completely open about how I was really feeling. This was so hard for me to do, and I broke down completely. Even though this was so, so hard, it made me realise how my health was affecting all aspects of my life. I was still feeling very low, and very vulnerable.

Luckily, my partner was also sensing how low I was, and realising how long the waiting list was on the NHS, he said that I should go private to have the surgery. I had the surgery in January of this year. It was major open surgery, and I had to have two catheter bags fitted for three weeks after the surgery. It took a while for me to recuperate from the surgery.

You might be thinking, jeez, is there ever a happy ending with this? Well, I’m getting to it.

Things have massively improved since I had the surgery. I have now got full control of my bladder and no longer need to live my life around the bathroom. I’m in control, not my bladder. I can now watch a film without having to dash off to the toilet a few times. I can go out for meals without feeling self-conscious about needing the loo halfway through the starter.

When recovering, I decided that I needed to set myself a goal. I set myself a goal of doing a charity bike ride. I completed this bike ride a few weeks ago which I was delighted about. My time certainly wouldn’t make any Olympic cyclists lose any sleep over, but I did it… and raised money for a worthy charity in the process. I have already signed myself up for another charity bike ride in a few months’ time so will have to put in some practice. I’m looking forwards to it!

I have also started a new job, which I am really enjoying. Things are going well.

My advice to anyone who has just been diagnosed with endometriosis or even if the diagnosis was a while ago, is to get a gynaecologist that is supportive and will work with you to get the best results. It’s also worth remembering that although they are the medical experts, YOU know YOUR body best, and don’t be afraid to ask for another opinion or another gynaecologist if they aren’t fully on board with what you want.

More advice? If you are lucky enough to live in the South Wales area (I’m not biased, honest) and are experiencing any issues with your pelvic health, make an appointment to see Jilly. She’s amazing, and she will work with you to get the best possible results. I know it’s easy for me to say this now, but please don’t feel embarrassed about having to talk about your nether regions, she won’t judge you. If you don’t live in the South Wales area, look up your local pelvic health specialist physio. It seems that most incontinence issues can be resolved, but if you don’t go for the appointment due to embarrassment, you might never know if your particular issue can be resolved……

If you have managed to read all of my waffling, thank you. I have tried to be as honest as possible in the hope that it might help someone summon the courage to get the help that they need.

 

 

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