Endo bowel symptoms after hysterectomy - Endometriosis UK

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Endo bowel symptoms after hysterectomy

Nikkky profile image

Just wondering if anyone has had a similar experience to me and what the outcome was. Also, any advice on where to go from here is much welcome. I’ve had chronic pelvic pain and bowel issues for years, which has resulted in various investigations and procedures. I’ve had a few conditions diagnosed during laparoscopies: ovarian cyst, endometriosis, adhesions, pelvic congestion and suspected adenomyosis. The pain always returned after any treatment and the only thing that worked for me was the Mirena coil. I would have 12-15 months symptom free with the coil. Anyway, I had a hysterectomy 4 years ago (everything apart from one ovary was removed). The pain where my ovary was (it was removed because of adhesions) returned after a couple of months and the consultant said it was adhesions and nothing could be done about it. Well, that pain continued to get worse and I now have central pelvic pain too, as well as the same bowel symptoms. The problem now is that I don’t seem to be able to get anywhere with the gynae consultant. She just dismissed it by saying that the pain can’t be gynae because there’s no ovary or uterus anymore. I think I do have adhesions but I’m feeling that endo might be on my bowel again. Has anyone else been in this situation? It’s like I’ve been shut down because I’ve had a hysterectomy. So tired of having to push for treatment every time. I’m wondering whether to have a private MRI scan but would this be useful? Thanks

31 Replies

Hi there,I understand all what you have experienced as ive experienced similar and alot of knowledge for the past 20 years of this and that, So you still have one ovary?

Hope to speak with you

Diane

😀

Nikkky profile image
Nikkky in reply to Butlerballs

Yes, I was advised to keep my ovaries if possible to avoid menopause. At the time I thought if I have both ovaries removed I’ll probably just end up with another load of issues associated with an early menopause (I was 40 at the time). Now, I’m in the situation where I’m still producing oestrogen and I know that could be causing problems (I recently had my oestrogen level tested and it is high) but it’s getting someone to investigate it. I’ve had that many things done over the last 20+ years and I think they assume you’re an attention seeker!

Nikkky profile image
Nikkky in reply to Butlerballs

Yes, I was advised to keep both ovaries if possible to avoid menopause. I thought it might be best to avoid a sudden surgical menopause as I thought I’d just end up with new problems. One had to be removed anyway as it was stuck to the pelvic wall.

Surprised there, after with my case of trying alot of methods it was oestrogen that was mainly the cause and i had a full hysterectomy last week and low and behold endo was present old and new and obviously oestrogen makes endo worse so im glad i had the full hysterectomy as it makes sense, i am 43 now and would rather go through early menopause then live with pain for god knows how long, dont see yourself as an attention seeker, i have seen plenty over the years but i did swop hospitals, all for the good, MRI scans dont really pick up endo on them as far as im told, and to be told there is nothing that can be done with adhesions i beg to differ that one as my gyny excised old scarring and endo.Dont stop pushing as i was told at different hospital that when i had a laparosopy in 2017 they coudnt find any endo but last week when she took out my uterus hiding behind it was endo but i always knew this as the same chronic pain never stopped only when i had prostap but that only last 6 months.

You will get there as i did dont think early menopause is that bad we all go throughit anyway so earlier the better in my case.

Hope this helps

😀Diane.

Thanks for your reply Diane. To be honest I think the fact I haven’t had children (through choice) made the consultant nervous to remove both ovaries. I wasn’t given any information regarding whether they’d seen endo or bowel adhesions during the hysterectomy op. I might request the notes. I’ve done that before and found out things that I wasn’t told!

Butlerballs profile image
Butlerballs in reply to Nikkky

Yes i would do that, write all your questions down if you have to we always forget all, i like to think iv got a good knowledge of my case and always go into depth with the consultants as we need to know all the ins and outs of what is going on in our bodies.

I have just had MRI scan it has shown endo growing in bowel area . i had hysterectomy 20 yrs ago & went on HRT . i would have the MRI scan

Nikkky profile image
Nikkky in reply to tiberius37

Thanks for the advice. Did you have your MRI done at a specialist endometriosis centre ? I’m worried that I go for the scan, they tell me it’s normal and I’m back to square one. I’ll then wonder if it’s been checked properly or they’ve missed something.

That gynae is just fobbing you off. I've had severe problems with Endometriosis 17 years after a hysterectomy and bilateral oopherectomy. I've never touched HRT. One of my main problems is bowel endometriosis in terms of pain but in my case it is widespread.

It's time doctors and gynaecologists were better trained. You know your own body.

Post hysterectomy endometriosis is far more common than people realise and hysterectomy is not a cure. I also had all my endometriosis excised at the same time.

I don't believe endometriosis can be cured, certainly not possible in my case anyway.

I would suggest consulting a specialist privately, someone with extensive training in endometriosis. Ordinary gynaecologists often haven't a clue.

Good luck with everything. xx

Nikkky profile image
Nikkky in reply to Dogmad6

Thanks for that. It’s really helpful to hear from people who have had experience with this. The fact that you’ve had both ovaries removed and you’ve got endo this many years later is terrible. It just goes to prove that it’s not all about ovaries and oestrogen, which is what gynae’s solely focus on. The more recently suggested theory is that women with endo have higher levels of lactate and this causes inflammation. You probably know about the current drug trial with dichloroacetate. It’ll be interesting to see what comes of that.Because I have nothing left apart from one ovary the gynae consultant immediately dismissed a gynae cause and went down the IBD route with stool tests! I’d already had years of bowel investigations- all normal. This was a private consultation but she also works for NHS in my local hospital that is listed online as an endo Centre. I guess she is an endo specialist but she’s comes out with things that I’ve researched and know aren’t fact. It’s difficult because I have symptoms every day and they can’t accept that. As you’ll know.....you can’t track the symptoms either as you don’t have periods anymore!

Although I know my body well and recognise my symptoms I still doubt myself. Can I ask you....do you have bowel symptoms every day? Is the pain worse after you’ve been to the loo? And how on earth did you convince them to look for endo on your bowel? Thanks

Dogmad6 profile image
Dogmad6 in reply to Nikkky

Some of them do talk complete rubbish. I'm lucky enough to have a great GP and a great specialist who believe I know my own body and I know what I'm on about after all these years. I desperately want to get on to Dichloroacetate when it becomes available.

My symptoms definitely get worse in a cyclical way but I can have bowel symptoms every or most days. I still know where I would be in my cycle even after all these years.

I definitely get worse after going to the loo and can be so crippled I can't even move for pain. However, it can also be random and agonising too.

I don't know how to advise you, it's so difficult but I would definitely seek a second opinion. The person you're seeing is just wasting time going down the IBD route I'm sure. Don't doubt yourself, you're the expert because you know what you're suffering. Can your GP help with a different consultant maybe?

Sorry I don't feel I am much help. xx

Nikkky profile image
Nikkky in reply to Dogmad6

You are a great help, thank you. It’s nice to hear that you’ve got a good g.p and specialist...it gives me hope. It also gives me the confidence to try again and not give up on this. It just gets so tiring after so many years of fighting for every referral etc. My G.P is really nice but I know she doesn’t fully understand the impact on my life when she responds with ‘how about trying yoga’. I could scream! I have a history of anxiety and depression so she puts everything down to that. I first had depression as a result of my gynae and bowel symptoms that were preventing me from leaving the house. It causes mental health issues, it’s not mental health issues causing my pelvic pain. It’s very hard to convince a G.P otherwise. The thing is nobody would know I’m in constant pain, I’ve learnt to hide it very well over the last 20+ years. It’s different when I’m home alone. So I go along to the g.p or consultant and be my usual pleasant, smiley self and they must think I’m fine. The truth is I’m usually trying to keep it together and not burst out crying....as then they think you’re just a highly emotional, neurotic woman! You can’t win but I’ll keep on trying

Dogmad6 profile image
Dogmad6 in reply to Nikkky

You sound just like me. Would they tell someone with diabetes or appendicitis to try yoga? I don't think so! Honestly! Beyond belief! Also they shouldn't blame it on mental health. It's the pain that makes us depressed and because no one listens / believes. No wonder people with Endometriosis get depressed. The other thing I've been told many times is that I look alright. What do they expect you to do, roll around on the floor and scream?

Seriously, don't give up and trust yourself. Try to get through to your GP how bad this is. It's time these same stories weren't happening to people.

I don't believe they'd treat men with acute symptoms in the same way at all.

Lots of luck xx

Nikkky profile image
Nikkky in reply to Dogmad6

Thanks for the support. Until I joined this forum a couple of days ago I’d never spoken to other women who have similar problems. I’ve never even told my family and friends the full extent of the problem. They know I’ve had pain and procedures for a lot of years but it’s impossible for them to understand that I have pain all of the time. It might vary in degree but it’s still there. It’s not that I feel they don’t care but a lot of the time it’s easier to say “I’m fine” even when I’m not. Lets’s face it none of us want to be seen as permanently miserable! You’re right-women are definitely treated differently to men and that needs to change. My boyfriend attended one gynae consultation with me years ago and he couldn’t believe the way I was spoken to and treated. It really opened his eyes! We are not attention seeking, neurotic, time wasters- just women who want to have a life rather than just exist x

Dogmad6 profile image
Dogmad6 in reply to Nikkky

It's definitely easier to say you're fine. Also you can get people making upsetting comments who haven't a clue. That can be very frustrating. I had a few people years ago saying ' oh so and so had that but they're ok now' or 'why don't you have a hysterectomy'.

Nowadays I say nothing to anyone except the closest family because it doesn't help and often upsets me. xx

Nikkky profile image
Nikkky in reply to Dogmad6

Yes, I know exactly what you mean. I think other women mean well and try and give advice but they know nothing about the conditions we suffer with. My elderly Auntie said to me recently ‘can’t you have a hysterectomy?’. I reminded her that I had one 4 years ago but it doesn’t necessarily work for everyone....she didn’t know where to go from there! Other family members say ‘you’ve had this for a long time’ and ‘you’ve had lots of tests and things done haven’t you?’ as if it’s not possible to have a condition for so long that can’t be cured. Also, women think they understand and say ‘oh yes, I have/had painful periods’ and that they ‘just had to get on with it’. That makes me feel like a complete flake and I can’t even be bothered to explain it to them. I’m not looking for sympathy or advice from them, just a little understanding would be a start.

Dogmad6 profile image
Dogmad6 in reply to Nikkky

Unfortunately I've had experience of all those sorts of comments. It really doesn't help and definitely makes you feel worse. People are sympathetic for so long and then their support can just disappear. I've had someone say 'well surely there's something that can be done' - said in a certain tone almost like you want to be ill. It's like they think you wouldn't have explored every possible avenue yourself. Aaaargh......xx

Moon_maiden profile image
Moon_maiden in reply to Dogmad6

Hi

I'm the same as far as the Dichloroacetate goes. I asked gynae last year if they'd prescribe off list, but no, emailed the gynae doing the research last week if they were expanding the research or get it off licence, but no as well. 😔

Hysterectomy last year and no better. The specialst can prescribe if they choose to, I doubt any would at the moment.

Nikkky profile image
Nikkky in reply to Moon_maiden

I know, I listened to an interview with the guy and it takes years for a drug to be trialed, approved and made available so it’ll be another 5 years or so. Not much help! Apparently it’s a pretty safe drug so it’s a shame it’s going to take so long.

Moon_maiden profile image
Moon_maiden in reply to Nikkky

The worst side effect is possibly Neuropathy but that goes away when you stop taking it. I've been tempted to buy it but wouldn't know what qty to take.

Nikkky profile image
Nikkky in reply to Moon_maiden

I’ve looked at buying it online but I worry that you just don’t know what you’re buying or taking. That puts me off as the last I need is to feel worse.

Dogmad6 profile image
Dogmad6 in reply to Moon_maiden

My consultant is excellent but won't do it. I also emailed the guy in Edinburgh a few months back but it's going to be years yet. Very frustrating! xX

Hi Nikkky, I'm 4 years post hysterectomy. They removed my remaining ovary (had one removed as emergency surgery 18 months earlier). I was put on hrt without oestrogen for the first 3 years and then moved to a patch last year. I have awful problems with my bowels to the point I've ended up with a prolapse and I'm awaiting my second surgery to fix it. I had a scan and the specialist said I had bowel loops wich were caused by adhesions from the endo. They won't remove them because they say more will grow back. My bladder also stopped working after my hysterectomy and I now self catherterise. I'm also under a different specialist as I have horrendous back problems and really bad nerve pain in my buttock and leg. Again this started after my hysterectomy, I never had back problems previously. I explain my history of endo, adenomyosis, cysts etc to every specialist as I'm convinced all my current problems are related to that but they just don't seem interested. Last week I asked for a referral back to my gynaecologist but my GP refused saying he wouldn't do anything because I'd had a hysterectomy. I'm currently weighing up whether or not it's worth paying to see my gynaecologist privately. I hope you get somewhere soon, I really feel for you, I know how incredibly frustrating it is x

Hi there, my hysterectomy was 4 years ago too. I think a lot of g.p’s and gynae consultants are out of their depth but they wouldn’t admit it. They’re really only interested in moving you along to see somebody else. There’s so little known about women’s gynae problems and it doesn’t receive enough funding. They’re told certain theories and I’m pretty sure they don’t question them......and they hate it when we do! The private ones don’t have better knowledge (they’re usually NHS anyway and doing extra private work) as they’re all trained the same. You just get an appointment quicker, that’s all. It seems to be pot luck as to whether you get a good one, NHS or private. Got to just keep fighting but it is frustrating because the last place I want to be is at the doctors or hospital having yet another appointment or operation. I’d rather be getting on and having a normal life.

Hi, I had a total hysterotomy last year and for probably the last ten months I've had right sided pain, to cut a long story short the bowel consultant sent me for a colonoscopy, half way through they had to stop as he said it was to dangerous to continue ( bowel obstruction) I'm sure it is adhesions as a MRI detected that a while back, I think they are going to send me for a CT scan, I'm in absolute agony on my right side xxx

Nikkky profile image
Nikkky in reply to Clackson

I feel for you. It sounds like you’re getting good treatment though and you’ll be feeling much better soon. It’s interesting that your adhesions were seen on the MRI. I’ve been told my pain is post op adhesions but I’d like a scan to confirm it before putting myself through another op. I’m also hoping if I get an MRI they’ll spot if there’s bowel endo there again. Best of luck

Clackson profile image
Clackson in reply to Nikkky

I've been told by them that adhesions don't cause pain, is this right

Nikkky profile image
Nikkky in reply to Clackson

Adhesions definitely do cause pain. I can’t believe they’d say that they don’t. I’ve had bowel and womb adhesions in the past that caused agony. My bowel was stuck to and stuck under my womb. Also, I had an ovary removed when I had my hysterectomy and it was removed because of adhesions. It was stuck to the pelvic wall and I’d had constant stabbing and throbbing pain in that area. Adhesions can pull on nerves, causing pain.

Clackson profile image
Clackson in reply to Nikkky

Thanks for that, I hope you get sorted soon xx

HiI had a hysterectomy last November and still had the same abdominal issues. Once I got my records I put in a complaint as he hadn't had the MDT meeting and didn't tell me.

No mention of looking at bowels or bladder.

GP referred to another endo team, MRI has shown small bowel loops tethered to the pelvis but they won't do anything.

I saw a Colorectal Consultant, I paid, who is part of an endo team on Thursday and he's got no issues about looking at the bowel. He's going to speak to gynae to see if it should still be a joint op. I can't sit, stand, bend without pain building up. Don't think the GP will be impressed getting a letter from a different team 🤣 It is a relief knowing that this might get to an end now.

When I saw the second endo gynae who organised the MRI I suggested getting one done privately to speed it up, but he said they like to do their own. The appointment came through within three/four weeks.

Good luck, don't be put off going elsewhere. Inside you think it's horrible having to consultant hop, but just show that you don't really care.

Nikkky profile image
Nikkky in reply to Moon_maiden

Best of luck with it all

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