Surgery - Adhesion removal for pain & bow... - Endometriosis UK

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Surgery - Adhesion removal for pain & bowel issues post hysterectomy?

Rockflower profile image
12 Replies

Wondered if anyone can share experiences of surgery post hysterectomy (my ovaries and cervix removed as well) had several surgeries to remove endo before and looked all clear at last one. I know I now have lots of adhesions and scarring - bowel and rectum looks to be stuck to top of the vagina - but doesn’t look to be any endo from scans. Suffering increasing pelvic pain and diarrhoea over last year or so.

Endo specialist is happy to do surgery again, have another look and divide adhesions but obviously no gaurentees it will improve pain - just don’t know wether to put myself through another surgery yet again, but increasingly I’m disabled by pain after having a long period of pretty low levels.

12 Replies
bighug profile image
bighug

Hi, I hope you’re having a good day.

You asked if anyone can share experiences, I too have had a total hysterectomy and ovaries removed. About a year later I had another laparoscopy (due to pelvic pain again) and it looked clear of endo, but had a lot of scarring, adhesions and my bowel looked miss shaped from a blockage. It’s been 7 months and I’ve now got pelvic pain again and suffer with diarrhoea. I also have a lot of lower back pain, but I put that down to osteoporosis on my lumber spine. It’s so hard to know what to do, like you I don’t really want to have more surgery, but at the same time you just want the pain to go or at least ease up.

Sorry this reply isn’t helpful, but I just wanted you to know you’re not alone feeling this way.

I can’t even talk to others about it because they all think I should be better now I’ve had a hysterectomy and several surgeries 😔 let me know what you decide to do.

Big hug 🤗 x

Rockflower profile image
Rockflower in reply to bighug

I appreciate the reply, thank you. Did they divide and remove the adhesions at the lap surgery post hysterectomy? Did it make much difference pain wise for those months afterwards?I’ve had quite severe adhesions at all my surgeries (even my first one) which I think is a lot of scarring from the endo and then it’s just compounded each time with more surgery.

My issue is - I’ve had a few years where things since my hysterectomy where I had been good - well, much better than before.

But now it’s all of a sudden just horrendous and stopping me from doing everything.

If I don’t have surgery I know things will likely not improve - maybe worsen even more! So feel I will have to end up doing surgery again - but the decision is also made more difficult as I would look to lay private as can’t wait the months /years likely on the nhs - it’s £5k and just not sure about paying so much when there’s a chance it won’t make any difference at all.

I’m sorry you feel like you can’t talk to anyone about how you’re feeling - I find people also think I should be ok now I’ve had the hysterectomy, but usually I can manage to explain that that’s not a ‘cure’ and unfortunately some people do still continue to suffer with endo or the adhesions etc.

It’s rubbish being in pain all the time - it just wears you down doesn’t it and just can’t be so life limiting 😞 x

Moon_maiden profile image
Moon_maiden

HiHaving issues with bowel, hysterectomy in Nov 20, no colorectal surgeon and supposed to be. Bowel adhesions removed in Feb 22 and gallbladder last month. Each time I’ve asked if they checked everywhere and promises they would but no mention of small bowel. I’m waiting to hear from last surgeon after emailing sec. I had adhesions round gallbladder as well.

I think I’m retesting for SIBO/IMO but waiting for dietician. They didn’t trust their test because too many proved positive in patients 🤷‍♀️🤦‍♀️

Also waiting for heart scan through an abnormal CPET I did before last op. Could be an inflammation link there as well.

I hope you get some answers and I’d be really interested with anything you find out. 🙂

I’d really suggest if you’re having another op to make sure there is a colorectal surgeon to check bowel thoroughly at the same time. Good luck 🤞 we need it all 😂😩

Happy to answer any questions if I can. Hope today is a better day/weekend

Rockflower profile image
Rockflower in reply to Moon_maiden

I’m sorry you’ve also been having bowel issues since your hysterectomy. That isn’t great that there was no colorectal surgeon in on your surgery when there was supposed to be. I hope they did do a thorough check on your last surgery as requested - it frustrating when you’ve specifically asked due to symptoms and you don’t know if they have checked as much as they could or not. Hope you get an answer on this one soon.

When I had the hysterectomy I did have a bowel surgeon in on it as well - I had lots of adhesions so it took them ages to free everything up before being able to actually do the hysterectomy part.

I’m waiting on results from another MRI - but no idea if it will show much. Guess I have to wait and see.

I hope you get your heart scan sorted soon .

I will update/post again and keep an eye out for posts and updates from you too x

Moon_maiden profile image
Moon_maiden in reply to Rockflower

Morning 🙂 hope bank holiday is going reasonably well, we need respite at times.I had bowel issues prior and he knew there was lots of inflammation from his mate doing first lap. He avoided my question after coming round after surgery and side swiped me. The op was complicated by fibroids with their own blood supply. He even put down putting anatomy back to normal first and Rectovaginal Endo, so frustrating. I tried complaining but no one wanted to hear, GMC met me half way but did nothing.

I hope so, but not holding my breath 🤞

That’s so good you had the right op first time, that’s how it should be 😀

So good you’ve had a few good years, such a pity it’s returned. Have you taken HRT?

I haven’t and at Feb op no Endo at least, no idea if that’s made any difference.

Don’t be disheartened if scan doesn’t show anything, we know it’s common. You can pay to see a consultant and do op on NHS if you run into those delays.

It might be worth you looking into abdominal adhesion/scar tissue massage. I’ve found doing some myself has freed a couple of areas around large bowel but if I do too much small bowel it kicks things off. I wouldn’t always recommend self massage if no experience but there are specific therapists trained in it.

🤞for us both getting further forward soon.

Kaz_67 profile image
Kaz_67

Hi, I'll try to keep as short as possible, but long and complicated history😒I had a 4ib cyst removed in 1992, then a total hysterectomy in 1999 at a young age (32) due to endo, reoccurring PID, and polycystic ovaries, I was in a lot of pain. My scar was reopened for hysterectomy.

In 2001 I collapsed in pain n was rushed to hospital, I seen the gyne I'd been under for 5yrs previous, she thought my bowel was trapped with adhesions, I needed urgent surgery. I'd never herd the word adhesions before I knew nothing about this n was in a state of shock.

The day after my operation my gyne came to see me. I was told I had adhesions all over my bowel and it was trapped. She had removed all adhesions n freed my bowel. My relief was very short lived then I herd the word BUT!! They will most probably come back, the more we try to remove them the more they come back she said. I thought I was going to get better after my hysterectomy, I was devastated!

Between then n now well I've needed 3 more surgeries, 2 for the adhesions trapping my bowel. Then I had to have my gallbladder removed, what should have been a 45min operation took 2 surgeons 4 hours. My gallbladder was stuck to my oesophagus, liver and my ribs.

I got encephalitis 8yrs ago it hit my heart n gave me heart failure. I didn't recognise my family, I was a mess. I was still recovering then 8 months later it happened again, I was on life support for 10 days. Apparently the chances of that happening are more.than a million to one I was told.

I was diagnosed with diverticulitis a while ago too.

Now I'm in terrible pain everyday on a LOT of tablets including both slow release morphine n mebeverine, pregabalin and a whole host of other meds, 22 different meds a day.

Apparently I've been unlucky, I was never told about adhesions how they can ruin your life. I honestly think if someone told me they had been through what I had, I'm not sure I'd believe them 100%.

I'd hate anyone to go through what I have with adhesions. PLEASE make sure you do all you can to research your options!!

I've always said I will keep fighting the c@#☆p that gets thrown at me. I have a wicked sence of humour that keeps me poking fun at myself, lol

Sorry this is like an essay,lol.

Hugs Kaz 🥰💪❤️ xxx

Rockflower profile image
Rockflower in reply to Kaz_67

Thank you for the post Kaz - oh you’ve really been through the mill with everything haven’t you! I’m so sorry you’ve ended up in such pain due to the adhesions and complex history of endo / surgeries etc. I know it must be incredibly hard to deal with.

I’ve been doing a lot of reading and joined an adhesion support group a while back (but never really used it to be fair) - so I have a little bit of awareness about adhesions and what they can do etc, so obviously have my worries.

I already had severe adhesions due to the endometriosis before I’d even had an any surgery - was told half my pelvis was virtually frozen with them. Sadly the surgeries I ended up in were due to painful cysts that would grow really large so I had to keep having them removed - so I was 4 surgeries (all laparoscopic) when I opted for the hysterectomy/ovaries removed so I didn’t have to hopefully have any further surgery. My hysterectomy was really difficult due to the adhesions and also took two surgeons over 4 hours to free everything up so they could actually removed everything.

It bought me nearly 4 years of much less pain and issues. But recent months I’ve just become so debilitated and in awful daily pain and not sure if it’s this cystic area I have /more endo or adhesions! (Or even something else and new!)

I just feel between such a rock and a hard place - and don’t know what to do for the best 😔.

Moon_maiden profile image
Moon_maiden in reply to Kaz_67

Hi Kaz, so sorry you’ve been through so much. I hope you don’t get adhesions back too much. My life seems to have taken a similar but not as bad route, although waiting re heart failure 😂 that can cause inflammation to organs as well if HF is due to lack of oxygen from the heart. So hopefully if that part is under control the rest will be easier. Are you on oxygen?

Kaz_67 profile image
Kaz_67 in reply to Moon_maiden

Hi Moon_maiden, sorry it's taken me so long to get back to you. Oh dear hun, I wouldn't wish this on my worst enemy,lol. I hope your pain is under control. No I'm not on oxygen ATM, I have 4 n a half heart tablets every day, (alongside my othermeds). I have 2 inhalers n a nebulizer at home. Plus my respiratory team come out as n when I need. I have ended up being hospitalised for oxygen a few times. My adhesions came back within 3 months of my last surgery years ago. I've been told far too many times, they will only ever operate on me if it's a life or death situation. Coz my case is so complex. Hugs Kaz x

Moon_maiden profile image
Moon_maiden in reply to Kaz_67

Please don’t apologise 🙂

I’d imagine the nebuliser works well. Inhalers did nothing for me a few years back. Not good needing to go to hospital for oxygen. I’ve bought one of those cans as an experiment when pain hits. 😂

Lions mane I think has helped with some of the pain. It’s a mushroom that helps the nervous system. Told I’ve nerve damage from the Endo.

Have you tried massage for the adhesions? I do bits, but it’s a fine line on too much.

Go easy, have a great weekend. Although I’ve asked something please don’t feel you need to reply, I get carried away 🤣

Kaz_67 profile image
Kaz_67 in reply to Moon_maiden

Hi lovely, I'm unsure what you mean, what cans? I think I've fried almost everything over the last 20 odd years,lol.

I couldn't handle the massage it hurt too much, I was almost hanging off the light-shade I jumped that much. Scared the cr@p out of the poor woman🤣. This might sound daft,but tickling my tummy with my nails helps a little. My stomach is always very swollen, on a good day I look about 5 months pregnant, on a bad day I look like I'm about to drop,lol. I've just had my 2nd lot of anesthetic injections into my stomach they help a bit too. They hurt, but it's worth the 15 minsi go through.

Pain is my BIG problem, nothing seems to take it away completely. When I have an episode of diverticulitis it kicks my adhesions off n visa versa.

I honestly don't know if I have the tolerance of an elephant, or my meds need a bloody good looking at. My pain consultant says all he can do for me is these injections 😒🙃

I'd cut an arm or a leg off even give a kidney to have some pain free time.

I miss me! I'm not the same person I used to be, I HATE having to ask for help.

I get start to ramble on n on n on n don't know when to stop 🤔

It nice to talk to someone who actually understands what I'm going through, knows how I feel🥰

Feel free to message me private, I'm always happy to talk (or waffle on, lol)

Hugs Kaz x

Moon_maiden profile image
Moon_maiden in reply to Kaz_67

You can buy oxygen in cans with a mask, you take two second bursts. It did work a bit yesterday, but not sustainable as they aren’t cheap 😂 you can buy oxygen making machines, tempting Don’t even go there on trying stuff. I think lions mane has helped the best

Have you looked into the Vagus nerve? Loads of different techniques on YouTube videos, humming is best so far. It likely has a similar effect as the tickling.

Same with tummy, first thing is flattest and down hill after that 😂

I need to ask about those injections, very tempting.

How do you tell if diverticulitis has kicked off as opposed anything else?

I had diverticula show up but that’s completely ignored.

I think we have a certain tolerance, I’d real off Oramorph, zomorph, Pregabalin and Amitriptyline and they’d look horrified 😂 I’ve cut out the opiates to prove it’s not them and constipation.

I’ve thought the same thing to just do something that doesn’t cause pain to abdomen.

I think back to what I’ve done with aim of getting there again. Had to ask for help with bags of stones at the garden centre today 😩, so frustrating.

Don’t worry, I don’t mind, I’m good at that as well. 🤣

I’ll pm 🙂

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