I'm so angry that my gynae op has caused more problems than ever.

[Keepyourheartopenandyoureyeswideshut]

Sorry, this is so long and I'm not even sure why I am posting this but I just can not get over my anger and frustration with the NHS and how they deal with women's health issues.

I am 52 but have suffered and struggled with gynae issues since my periods began at the age of 12. I have always experienced very heavy bleeding and have been anaemic for most of my adult life (the pill drove me crazy). I would also spot or bleed during ovulation and would be in so much pain during mid cycle. This was always explained away as the simple 'Mittelschmerz' that many women experience but for me it was pain so bad that it would hurt to sit and would last a full week. I had lots of ultrasound scans over the years and even a D&C at 28 but nothing found other than ovarian cysts (once told one was a chocolate cyst but nothing done about that) and recurring uterine polyps. In my mid 20's I started to suffer from awful gut issues and have always been told it's 'just' IBS. The gut issues have never left me are in fact getting much worse with age and I am convinced it's all connected to my gyane problems.

In my late 20's I struggled to conceive and it took 5-6 years to fall pregnant at 32 but again was told all normal for some women.

Periods became much much heavier in late 30's and from 2013 until present time I had an appointment yearly at the same gynae department of my local hospital. Endless hysteroscopies, polyps removed each time but they just kept growing back, even had them removed during day surgery as they were so stubborn and difficult to remove.

Eventually I became so anaemic that I opted for a uterine ablation in 2022. I was very anxious about this procedure as it burns the lining of the uterus and I had read some personal horror stories from women following their ablations failing. I asked my gynae many, many questions about this procedure beforehand but was always reassured by him that it was very unlikely to fail. He even laughed at me during one of my consultations, he turned to his nurse and said 'Oh, this is the lady who asks soooo many questions hahahah!', I wasn't too impressed about that at the time and even more so in retrospect because things have not gone well and I feel that I was justified asking so many questions.

The ablation went ahead in April 2022 and it went well, I chose to have it under a LA as I am petrified of GA. It was ok, quite painful but took less than an hour, I went home the same day and recovered well however I was still bleeding quite a lot during each period which was disappointing but there was no pain. I spoke to the gynae and he assured me that within 6 months the bleeding would stop and around 6 months post op and it did. My period in October of that year was minimal bleeding but oh my god the pain which followed was horrendous and pain with each period after that was agony. The pain seemed to cause awful bloating and would radiate all the way into my actual stomach and would last 5-6 days (I have since asked on failed ablation FB groups and many women experience the same pain). I have suffered from IBS for almost 30 years so assumed this was also exacerbating my gut issues as they are now dreadful.

I returned to my gynae late 2023 and explained what was happening. He confirmed that the ablation had most probably failed and just advised pain relief, I said that wasn't good enough and asked for a MRI as I wanted to know what was going on. In December 2023 I had the MRI and it revealed deep endometriosis and diffuse adenomyosis. I was so bloody angry as my sister was diagnosed with endometriosis in her mid 40's following years of issues. I had mentioned this to my gynae several times in the past but he always dismissed endo as I never really suffered from actual period pain (apparently very heavy periods, very painful ovulation and difficulty getting pregnant doesn't ring alarm bells for endo with him).

I was 50 when I had the MRI, now 52 and still awaiting a laparoscopy.

So late 2023 I was discharged from my regular gynae and referred over to the endo team at the same hospital. My endo gynae is very dismissive. He refuses to discuss my digestive issues and says they are nothing to do with my gynae issues (although all the women on support groups I'm on have many gut problems, surely that can not be just coincidence?). I can not now have a Mirena coil as my cervix is sealed shut from the ablation, hrt hormones seem to make matters worse and so I am now on a waiting list for a laparoscopy and will need to face a hysterectomy to remove my adenomyosis riddled uterus.

I am so angry because I have a huge fear of operations and general anaesthesia. The whole point of my opting for a uterine ablation was to avoid any major operations. If the endometriosis had been picked up before all of this I would have never opted for an ablation and I wouldn't have adenomyosis (no previous scan had shown this before the ablation). I have since discovered the ablation has forced the endometriosis into the walls of my uterus. My digestive issues are now daily and really control my life, I am utterly convinced they are connected to my gynae issues but no one will listen to me.

I complained to PALS last year but all I received from the gynae mananger was the standard 'We are sorry and will make sure this doesn't happen again' - all fine but a bit late for me.

I am miserable tbh. Where do I channel this anger and frustration? I really do not want to face a laparoscopy or hysterectomy, I am so scared to go through with any of it but I am going to have to simply because my gynaecologist failed to pick up something which affects at least 1 in 10 women so NOT a rare issue.

It’s not much but I’ve had a big endo op recently if I can answer any questions you have I have stage 4 deep infiltrating endo and adenomyosis

Thank you.

Did you have a lap? How are you feeling now? X

I'm scared because the endo gynae says he will.do a robotic lap but if it shows up on my bowel he will immediately stop and I will need it done again but with a colorectal surgeon on hand.

My friend's endo wasn't picked up until her late 40's. She ended up losing a kidney and needing a colostomy bag as they had to remove some of her colon. 8 years on she is still experiencing issues.

My sister's endo wasn't picked up until she was 44. Her ca-125 was very high and she had a mass on her ovary. They told her it was probably oc. She was scheduled for a 2 hour op but it ended up being 6 hours due to extensive endo (luckily no OC but she did lose that ovary).

I'm petrified to go through this and worry that my endo with be extensive as it's been left so long.

I’ve seen your many posts about this over the past couple of years and I wish I had an answer as I can see how much you’re suffering and struggling.

The only thing I’ll add is I was very recently diagnosed with deep infiltrating / Stage 4 endometriosis and adenomyosis and it is common to have adenomyosis if you have deep infiltrating endometriosis, so it may have been there before the ablation rather than caused by it.

I am looking to have my surgery in next few months and because my endometriosis does involve my bowel, I’ll have to have a colorectal surgeon present at the same time. Surely the scans will tell you if it involves your bowel so they can decide in advance whether a colorectal surgeon is also needed?

Yes I had a lap on the 22nd May it was 8.5hrs and complex. Specialist endo surgeon and a colorectal surgeon joined for 3hrs
I was off work for 3 weeks, my endo wasn’t diagnosed until I was 39 and I’m 41 now. Didn’t lose anything except my appendix

I have posted before, I am just so frustrated that everything is so slow.

My endo gynae has admitted that the adenomyosis was caused by the ablation (I have all my previous ultrasound reports and it never showed up before now but my last US a month ago clearly shows it, the sonographer even showed me on the screen). That's the thing I am most annoyed about, if I just had the endo I've been told it would probably die down after the menopause which at 52 should not be long away but the adenomyosis will only be cured by a hysterectomy. I feel that was totally avoidable.

The MRI report says diffuse uterine adenomyosis, deep endometriosis, a nodule in the pouch of douglas and nodules alongside the left adnexa/borad ligament. My US from last month now shows the left ovary is adhered to my uterus, that wasn't showing on the MRI report. No reports regarding any on my bowel but the endo gynae says he won't know until he does the lap hence the needing the colorectal surgeon next time if he finds it which is frustrating. Has your bowel endo shown up on an MRI?

I have a consultation on Thursday so will ask him about the possibility of bowel involvement.

Good luck with your surgery, hope it goes well.

Wow, that was long. Were you in hospital long after? How has your recovery been?

i woke up at 6pm and by 8am was outside looking for a coffee! Discharged before lunch
recovery fine, I’ve been on blood thinners but not needed any painkillers since I was discharged

my letter says

Adhesiolysis, mobilisation of sigmoid and rectum, bilateral ureterolysis, drainage of bilateral endometriomas, stripping of cysts walls, temporary suspension of ovaries, excision of endometriosis, restoration of anatomy, dye hydrotubation, appendix removal, IUD insertion, estimated blood lost 400ml

I had a total abdominal hysterectomy in 2023, for a soft tissue sarcoma cancer. Just in case you do end up having a hysterectomy, to reassure you, my recovery was smooth and painless.

I hope you get sorted soon. You are so right, women’s health issues take an age and a day to get sorted. When I was having pain, I was told by my GP, it was only IBS and was sent home with buscopan! Before they knew it was cancer, it was down as a fibroid which would “ go away” during menopause! I had to fight for each scan/ X-ray and MRI. I was exhausted by the time i had my hysterectomy, but it was essential surgery.

Good luck 🤞

Oh goodness! So glad to hear you've made a good recovery.

Thank you for the reassurance, I know I need to suck it up and go for it. It's the long waiting times which allows my anxiety of it all to fester!

That's good to know, glad to hear all was ok.

I know. The waiting is insane isn’t it.
I don’t know why it has to be like this.
If you do need the surgery, your brain will immediately go into surgery mode and you will start to prepare.

I'm so sorry to hear this. You must be furious with the years of your life wasted.

I had a hysterectomy two years ago, at 59. I can honestly say that it was a lot better than I feared and I quickly forgot I'd even had it done. It wasn't for endometriosis (precancerous hyperplasia). Perhaps it might be the same for you?

I had a hysterectomy last year after dealing with fibroids for years. It has given me a new life. No longer anemic, much better mood and energy. I have lost more than 30 lbs from simply having better energy to move around.

Recovery was smooth, but be gentle for the first few weeks.

I just want to tell you about what happened to me @Keepyourheartopenandyoureyeswideshut in the hope that it gives you some reassurance.

I didn't have endometriosis although I had been diagnosed with adenomyosis. What led to my surgery was the discovery of a mass on both ovaries which was initially thought to be cancer. It turned out I had actinomycosis, not cancer, but it's the surgery bit I wanted to tell you about as I was scared, but throughout everything I found what helped most was information and talking to other people who had been through similar.

I went in first for a hysterectomy and removal of my ovaries and fallopian tubes by robotic laparoscopy and they weren't able to complete it because my ovary was adhered to my bowel in multiple places and the adhesions were too dense and bled profusely when disturbed.

Six weeks later I went back in for a laparotomy with a big midline incision (somebody very irreverently called it "boobs to pubes" 😆) for a hysterectomy, removal of ovaries, fallopian tubes and omentum. The GI surgeons were also on hand as there was a possibility I'd need a colectomy and a stoma, (which in the end I didn't.) So this was worst case scenario. The op was 9 hours.

I was in hospital for a week afterwards. They were fantastic at keeping on top of my pain, I had an epidural in place for the first two days and self administered fentanyl for two days after that, some diclofenac and other stuff too. My full recovery at home took 12 weeks but I was pretty much back to normal after four, although not allowed to do anything strenuous or lift anything heavy.

It gave me a new lease of life though! I felt like a new woman! I got my life back and that's not an exaggeration. I couldn't function beforehand, beyond tired, could barely walk, appalling digestive issues. There were some tough moments in the first few days but it has been SO worth it. I am two years on now and you would never know anything was ever wrong with me.

If there's anything at all you want to know feel free to ask.

I was diagnosed in my late thirties after years of hell and dismissal by doctors. I'd reached the point of going to A&E to beg for pain relief before I finally got a diagnosis, and even then, it still took over a year before I finally got a definitive answer. I had stage four with adenomyosis. I had nodules in my rectum, bowel, and urinary tract. It had destroyed my fallopian tubes and my ovaries were fused to the back of my uterus with adhesions. I had to be referred on to a hospital with an endometriosis centre. I had a hysterectomy with removal of both ovaries and tubes, and it was excised from my bowel and urinary tract and a few other places. The biggest nodule was the size of a golf ball and yet a year before, I had asked a GP if it could be endometriosis and he had laughed at me and said 'what on earth makes you think you've got that?'

What you're feeling right now is normal and understandable. The disbelief, the anger, the disappointment, the fear - all of it. Part of it is that it takes a long time to come to terms with it. You're not mad, you're not unable to cope with something that other women can manage. You're ill and probably have been for years. And doctors, who we now have to trust to fix us, have made a total cock up of it, and there is nothing we can do about it. Being totally honest, the surgery wasn't the end of the road for me, because the disease has returned in my rectum and bowel, although it's not as bad as it was before the surgery and I'm managing the pain reasonably well, partly thanks to the fact that I've been able to access treatment privately and therefore have a lot more support than I could get on the NHS (with the consultant of my choice, who runs a big endo centre in London).

It's a very, very difficult path to walk, but these are the cards that life has dealt me, and I just have to get on with it. If you've got any questions, I'm more than willing to answer.

FWIW - if you had a hysterectomy for a reason other than endometriosis, and it has been a brilliant experience for you, that's great, but you are really not in the same boat. If you've got endometriosis a hysterectomy won't fix it.

My mum's hysterectomy was a really fantastic operation which gave her a new lease of life. Instead of trying to fix/clear the uterus, you just chop it out and be done with the problems. I know that you have been treated like utter shit and disbelieved, but I think that the solution is clear. GA is also great these days - you just go off to sleep whilst someone else sorts the problem. I'd not go back to that same guy who ridiculed you though.

Adeno isn’t easy to spot and can only be confirmed via hysterectomy, so it may well have been present for a long time. It has never come up on any scan or MRI for me (and I’ve had plenty) and during my lap for Stage 4 endo my surgeon (one of the best in the UK, someone who does around 20 endometriosis surgeries a week) thought my uterus maybe looked a bit like I had adeno, but couldn’t confirm. Still none the wiser as to whether I have it as I don’t want nor need a hysterectomy.

A hysterectomy will resolve adeno but it won’t solve endometriosis.

Given you have advanced endometriosis and should be referred to a tertiary endometriosis centre (not regular gynae). You can use right to choose and do not need to be treated by the time that you have been referred to. If there is bowel involvement you can push for a MDT to review your case.

For what it’s worth, my MRI pre surgery was clear but I ended up having 5 hours of surgery and a bowel shave, so I’m a bit dubious about MRIs.

@applegingermint I've only ever had an MRI post hysterectomy, but for me it was used to look for the deep nodules in the bowel, I don't think it can show the full extent of the disease. The adenomyosis did show on ultrasound. But that said, it also matters who is looking at the scans and what equipment they're using as well as how severe the disease is.

I wish I was done with the problems after having my uterus just chopped out.

Thank you, that is reassuring. Glad to hear you feel so much better now.

Your post has made me cry because that is exactly how I feel. I am sorry you have been through so much with it all.

I am so fed up being dismissed all the time and being told all my pain, discomfort and gut issues are all in my head and that a 'bit' of hypnotherapy, relaxation or just acceptance will make it all disappear. I know my own body and I know that I feel like crap and have done for so long that it's utterly exhausting.

I am sorry to hear that your endo has returned, that must be so frustrating. I was truly hoping that menopause would bring an end to this crap but I am still having a cycle and from what I have found from support groups is that many women still experience endo symptoms way beyond menopause which is utterly depressing.

Could I ask the name of your private endo specialist? I can not afford private care but may ask my father for a loan as I am getting very desperate. Although my local hospital is a BSGE endo centre, my gynae is very abrupt and dismissive. There is a wonderful gynae there who is so very popular, I have had a private consultation with him and he's brilliant but he has a huge waiting list on the NHS due to his popularity. I would like to request to see him but I don't think it would be possible.

I know that adenomyosis can't be fully diagnosed until post hysterectomy but I am fairly sure it wasn't there pre-ablation. I have had endless US scans over the years and it has never been mentioned before the MRI, in fact I had the MRI in Dec '23 and an US Oct '23 and it was not noted then but definitely picked up two months later with the MRI.

My last 5 US scans have been with the same sonographer as I have paid privately for them, she always goes through everything at the time and when I had my last one a month ago she commented on how different my uterus looked and was indicative of adeno. She showed me the screen and my uterus has lines all the way through which she said would be adeno.

My hospital is a BSGE specialist centre btw, so for that I am thankful.

I was lucky my endo was diagnosed by gyni when I was early 30s. Had a number of surgeries then after, eventually, having DS had Mirena coil fitted. It was life changing.
Pre DS and infect throughout pregnancy I was chronically anaemia. Iron infusions during pregnancy and suppression of periods post pregnancy meant I was able to live a normal life again.
If I hadn’t had success with the coil I would have had an elective hysterectomy as soon as possible.
I’m post meno now but still have a lot of the issues caused by endo but no pain. My bladder is very scarred and I cannot feel when it is full. My bowel has endo lesions all over and still reacts to foods that are oestrogen mimickers. This was a big problem in my 20s when a lot of meat had hormones in it. Also some food colourings caused problems. Now I know what triggers the flare ups so avoid certain foods.
After having breast cancer I was put on Anastrazole, a hormone blocker, I think that it has had the most benefit re endo. Unfortunately the side effects bring with it other problems but nothing as debilitating as endo.
It is a shame that you are unable to have a Mirena coil, this was by far the best treatment once it settled down. I would have loved it if it had been around in the early stages of my endo journey.

I hope you eventually get answers and a solution. Endo is such a hidden disease and one that many women put up with because we are constantly told that our symptoms are “normal”.

Anastrazole is currently being investigated as a treatment for endo where other treatments have failed. It may be more effective for women who are past childbearing years but there are some risks. Osteoporosis can be a problem but the reduction in bone density slows after a couple of years. I was lucky because my bone density was really good pretreatment so the decrease has not increased my risk of osteoporosis and the bonus of having regular DEXA scans means I can have intervention if required.

I’d rather have the side effects of Anastrazole than endo. Hopefully I will be able to stop the Anastrazole over the next couple of years and I’m assured that most of the side effects disappear.

What area are you in? Someone might be able to recommend

I'm so sorry to hear you've been through all this.

I was diagnosed with endometriosis only when I had IVF and the surgeon struggled to get to my ovaries because of all the tissue. He wrote a letter to my GP and I was referred for a laparoscopy on the NHS. It really has made a huge amount of difference but prior to that egg-collection where the endo was literally visible to the surgeon, I'd been fobbed off for years.