Endo adhesions on bowel and surrounding organs which couldn't be removed during operative laparoscopy- what happens next?

[Drakesie]

I had my first operative laparoscopy 2 days ago. My consultant found some endo she could excise but the worst affected areas are around my bowel, rectum, Fallopian tube and ovary. Due to the extent of the endo I'm being referred for a colonoscopy before she decides on how best to treat the endo on the bowel etc. Is there anyone with a similar diagnosis who can advise on what may happen next. I really don't like the idea of bowel surgery which I has been mentioned and would like to know what my other options may be?

[kellykeloggs]

Hello I have a similar diagnosis but I am waiting to see the consultant to find out what happens next. I hope you are coming to terms with it all. I know for me it all sounds rather scary so I am hoping the consultant will reassure me that there is someway that they can help!

[Drakesie in reply to kellykeloggs]

Same here. I've known something was wrong for years and had hoped my lap on Sat would be the answer to all my problems but now I'm back waiting again. Sounds like all I can do is wait and hope my consultant will be able to fix it!

[worth71]

i don't know if we're similar, some of it maybe - i had my lap five weeks ago, diagnosed with severe endo on ovaries, bowel, sigmoid something, bladder, pouch of douglas - i was told too extensive to remove at lap so none removed, i've put on waiting list for hysterectomy inc ovaries/tubes and possible bowel surgery depending on what they find once they're in properly. i was hoping for another keyhole procedure to remove the endo, at at most just remove the womb, that bit i'm not bothered about as i'm 41 and have children, but i think its too young to remove ovaries, have a read through this website page ( endometriosis-consultant.co... ) it shows there can be alternative treatment/surgeries out there xx

[Drakesie]

Thanks for replying. Our diagnoses do sound quite similar-I also have extensive adhesions pouch of Douglas and she couldn't even find my right Fallopian tube and ovary. Bowel surgery -resections etc has been mentioned but nothing has been mentioned about a hysterectomy. I haven't had kids yet(I'm 37) so I would hope that isn't going to come up. Thanks for the link, I'll do some reading. Good luck with your treatment x

[cjb-75]

I have severe stage 4, endo and adhesions on ovaries, tubes, cervix, pouch of douglas, rectum and so bad in the abdominal cavity they couldn't see my sacral ligaments...

1st lap they did no operation at all to get an expert in

2nd lap they excised all they could so I can focus on having children (so removed from womb area). However they couldn't from the abdominal cavity or rectum. They're recommending a complete pelvic clearance after our family is complete (so lose womb, ovaries, tube and cervix) and they're giving me a 6 month window to try.

I've been on the endo diet now for 2 months and am taking a tonne of suppliments and it seems to be having a difference. I really don't want a full hysterectomy without exhausting all other options. I've also been recommended to see if there are any other specialists in the area that may be able to excise some of the adhesions / endo in the abdominal cavity, and rectum.

Best of luck with your next steps.

[cupcakegirl]

For anyone who has been diagnosed with endo thats too difficult to remove, I would strongly recommend going to an endo specialist for a second opinion. They treat the most complex cases, often in conjunction with a bowel surgeon, whereas less experienced surgeons will jump straight to a hyst because they don't have the skill to perform the surgery themselves.

Excision surgery to cut out the deposits by a specialists, in conjunction with a bowel surgeon to treat the endo on and around the bowel, should most definitely be tried before a hyst is even discussed. Hysterectomy is not a cure - although it helps some women, others end up in a far worse state than they were in before the surgery, especially if the surgeon has not removed every trace of endo. If they leave behind endo around the bowel for example and perform a total hyst, that endo is likely to still cause problems. If you take HRT to ease the difficult effects of an early surgical menopause, the HRT can feed the endo and cause it to grow and spread. Even women who don't take HRT can sometimes find that the endo spreads after the ovaries are removed and they don't know how. The adhesions that result from this surgery can also cause extreme pain and this is very difficult to treat.

I've been diagnosed for nearly 10 years and have spoken to lots of ladies who've had hysts - based on their stories I would never have my ovaries removed unless there were no other options and I was convinced it would help. I probably wouldn't have my uterus removed as its pointless (the endo is outside it, not in it!) unless they found I had adenomyosis, although this can be hard to diagnose.

If I was considering a total hyst, I would at the very least ask if I could take a long course of zoladex first, to see how that affects my symptoms and how I'd cope with the menopausal symptoms, especially if you're planning to go without HRT. If zoladex doesn't help, having surgery probably won't either, especially when you factor in adhesions and nerve damage from major surgery, and at least zoladex can be stopped.

If your gynae ever says that your endo is too complex to remove, they should refer you to someone who possibly can do it - if they don't, ask your gp to refer you to one of the national centres like Oxford. At the very least, let them do an MRI since severe endo is often visible on an MRI to see if they think it's likely to be treatable, before agreeing to a hyst. Personally I'd ask them to try excision before I even considered radical surgery.

As for the presence of a bowel surgeon, you may not need a resection and even if you do, that doesn't necessarily mean you'll need a bag etc. I know quite a few ladies who have had bowel resections without any major problems. In most cases, having a bowel surgeon who can treat the endo on or around the bowel avoids complications - if you have endo inside the bowel, they may have to perform a resection but it depends on your individual case.

Good luck

xxx

[worth71 in reply to cupcakegirl]

when you say a specialist do you mean one of those who is listed on the BSGE, for accredited specialist centres? or privately? xx

[cupcakegirl in reply to worth71]

The most important thing is to try and get a recommendation from another sufferer with similar problems - you could ask for an NHS referral or pay for a private appointment (some specialists do one and not the other). I can personally recommend the endo centre at John Radcliffe in Oxford but there are other highly renowned specialists across the country. As your case is severe, you shouldn't have any problems getting an out-of-area referral.

With severe endo, it's important to limit the number of surgeries to avoid worsening adhesions, so it's even more important to find the right surgeon with the best possible skills in excision - there are surgeons out there who can help, but it's likely you'll have to travel. I've spoken to so many women who've been told their endo is too complex to remove so us either just left or they're given a hyst when it's not necessary. If a specialist tells you that's your only option, that's one thing - but sadly most gynaes in local hospitals and even some endo centres (I have one locally but it's not even certified and they're clueless) don't have the skill to deal with some cases, or the willingness to refer on to someone better when needed.

Best of luck

Xxx

[stevieflp]

I could not agree more cupcake. I was told a hysterectomy and oophrectomy were my best hope (advaned endo). This was a gynae consultant who had advertised as treating endo. I have come to the conclusion that she probably specialised in hysterectomies! When I had later asked about excision surgery she said "oh I do a little bit of excision". One has to ask why she did not inform me of the excision option or offer to refer me onwards. Had I not done my own research, I would have been in the dark. Had I believed her recommendation to be the answer to my endo I would not have hesitated as I can well do without monthlies and am an older lady (was 48 at the time).

I could not see the rationale in removing my uterus and ovaries when I had endo everywhere, particularly as she had said removing the ovaries would stop me producing estrogen but because of my age I would need replacement HRT - what a no brainer that seemed. Plus we do get estrogen from other sources in this day and age, from chemicals, food, plastic packaging etc and we store it in our body fat, so I understand.

I came across the website of one of the specialist endo surgeons and everything he said was like a breath of fresh air and made such sense. He also advocates not to remove ovaries unless something nasty is indicated like cancer, not for endo.

I got a referral and underwent 'total radical excision' surgery with temporary ovarian suspension and saved all my bits, avoided taking drugs / chemical menopause and have not had any signs of endo pain since. That was 2 years 4 months ago. I have been thrilled with the outcome.

I know endo can come back but with this type of surgery, literature / audits have demonstrated this total radical excision gives a better outlook for staying endo free. If I do get any signs of it back, I would go down this path again. The last 2 years without endo pain have been worth the 7.5 hour op (all keyhole). Sadly there are not enough surgeons out there who can perform this. Many who say they do excision surgery do 'patch excision' which is what it says on the tin. For extensive endo patch excision is going to help but it will likely not remove all endo and probably mean several laps to remove more patches. Total radical excision just removes the whole lining of the peritonium in one go.

I would definitely agree with those who say for advanced endo you really should ensure you are seeing an endo specialist rather than a general gynae.

[cupcakegirl in reply to stevieflp]

That's a very scary story - how lucky that you did your own research. When I was first diagnosed, I believed my gynae knew best... Then I started reading up and realised he had no idea. They didn't remove any endo at my diagnostic lap then wanted to do another straight away, and he told me that he could cure me with laser surgery. What an idiot.

I'm sure there are ladies for whom a hyst works well but it's an enormous gamble - one lady I know was pretty ill before the hyst, but has since spent the last decade bed bound or in a wheelchair, unable to walk or work and with problems they cannot treat (even if your doc believes that the endo has come back, which many don't). I'm not trying to frighten anyone - just sharing what I know, because I believe that for most women with endo, a total hyst followed by HRT has the potential to make things far worse, and irreversible.

[cupcakegirl in reply to stevieflp]

Also, I think a total hyst is their easier, cheaper option. The surgery is cheaper and requires less time than thorough excision, and less training. Even if you had a hyst, to have a hope of working they would need to remove every last speck of endo (practically impossible in most cases as its not all visible), so they should be doing the excision too at the same time, but most don't. It makes me really angry that so many women aren't being given the info they need to make an informed decision.

In the last decade, I've spoken to lots of women who feel good 6-12 months after a hyst, and lots who feel bad at this point. However, I've not spoken to anyone that I can remember who is still problem free a few years after a hyst, which is concerning.

[Sunflower846]

I agree with cupcake too. I have stage 4 endo, my ovaries were pulled in a glued tight to my bowel, endo on my pouch of douglas and all over my cervix. I had most of the endo removed but the deep rooted bits that cant be operated on like my ovary is covered in them so i would need to lose it as it would be like cutting pieces out it then it wouldnt work anyway, My ovaries were separated and put back into place, endo removed from my cervix and some from my pouch of douglas. Mine is a endo specialist and im very lucky to have him. I would never let anyone tell u a hysto is the answer. Im prooof they can remove the worst xxx

[meme2 in reply to Sunflower846]

Hi lynnieb846

You mentioned you had a great endo specialist, and I was wondering if you would be kind enough to let me know who he is? I have severe endo all over and my consultant although a 'specialist',is very reluctant to operate on the bowel as it is "too extensive". Therefore I wondered if yours might be able to help.

I have two little children and looking after them is becoming a huge problem nowadays as I am in soooo much pain, I can never leave the house.

Thank you.

[worth71]

I think for my situation, 41 and have had kids, a hytserectomy is the easiest and cheapest option, they have no need to preserve my fertility, and I can accept that, but it's not all about fertility, it's about trying to cure the pain, and the fact that if the ovaries are ok then they shouldn't be removed, they don't just pack up working at menopause, they still carrying releasing hormones for much longer, protecting against heart disease and osteoporosis to name a few. I saw the specialist at the specialist centre. He was very matter of fact as in he told me endo was caused by the blood flowing backwards through the Fallopian tubes, he didn't say it was a possibility and that there are other theories as to what causes endo. He said that if I needed hrt that it would not cause endo to grow back, and that this was simply a myth. He then suggested a complete hysterectomy. My theory to put to him is that if endo is caused by the backward flow thru the tubes, then removal of womb would surely solve that problem if all endo was removed, so therefore no need to remove ovaries.

I have another appointment at the beginning of June with him I think, I just know I'm going to struggle to get my point across xx

[lavinia1]

Hy,

I have endo. for 13 years as far as I know but I only discovered this 4 years ago and since then I had 2 lap and one colonoscopy. The endo was mostly on my left side and some was between my uterus and my bowel. First time they removed all the endo. from my left side and they also had to cut a part of my bowel because it was very painful when I had intercourse or sat on my bum or even walk. Before the lap. the doctor told me that its possible to have complication with the bowel and if that's gonna happen I will have to wear a bag for a period of time till they can fix it again, luckily for me it wasn't the case and everything went well. At the moment my endo. is back and I have 2 cysts still on the left side, the pain is getting worse especially one week before period and I have this pain in my leg that its horrible and I just start limping. With my bowel I am ok, sometimes I go out like 4,5 times a day but other then that I didn't had any problems.

I wish you all a lot off health and I hope this helps.

xxxx

[Juleyanne]

This all really rings a bell with me. So confusing as to what is the best course of action.

I have a history of extensive endo and adhesions (widespread) in pelvis and stomach. I had repeat surgeries and investigations over the years. I am now menopausal but still getting awful right pinching deep in my hip an inch above bikini line. Waistbands are murder and sitting and eating is painful/uncomfortable. Bowel symptoms dog me daily either constipation, sudden diarreoh and frequent piles, low back pain, hip pain, pain down right leg and fatigue and pain keeps me awake.

Total hysterectomy was mentioned a couple of years ago after Zoladex failed which led them to think adhesions is my problem. Since then Diverculitis and small Hiatus Hernia found during CT scan. Muscular skeletal was also mentioned as a possibility and IBS. Oh boy, so confusing.

Ultrasound showed uterus ok so does that mean now total hysterectomy is not an option? and if not what next? Any further major or even minor surgery carries big risk of further adhesions.

This is ruining my life and stopping me functioning in the real world! Like other women above

I relate to their dilemmas. One thing I remember a endo adhesions specialist gyne saying at a talk I attended on endo was that IBS doesn't exist in his opinion, he said it is a lazy diagnosis given by some Gps as to what is effectively an underlying gyne condition. He also said that radical excision and often bowel ressection is the most effective way to approach endo through total hysterectomy.

He also said that once a woman had decided or accepted not to have/any more or any children

removing ovaries was recommended as their is apparently a heightened risk of cancer in women with endometriosis. He said that Hysterectomy does not always cure endometriosis and if it is performed it should be approached aggressively to remove every trace, including removing ovaries.

Adhesion formation is a big problem with repeat surgeries and a skilled endo adhesions surgeon is

undoubtely best for the job. A good adhesion barrier is also key. The NHS do use a good one but apparently their is a newer better one on the market but the NHS don't use this due to cost! Now surely this is a false economy as adhesions are a big problem with pelvic/bowel surgery. So to avoid repeat 'expensive' surgery (which also makes adhesions worse with each surgery) it would be sensible to use the best product available to reduce this major problem which also costs society in lost production and sufferers often becoming economically inactive if surgery fails due to adhesion formation! Perhaps it might be a good idea to allow NHS patients to be able to opt

for the superior adhesion barrier if they are prepared or able to pay for it as an add-on!

[Hidden in reply to Juleyanne]

Hello sorry just saw that you have said that your endo has caused you bowel problems such as sudden diarrhea, my mum had her hysterectomy when she was about 34. She had everything removed. But for years now she has been suffering with pain and what she has been told is IBS. She does not believe it is but no matter what tests she has they won't take the fact that she had endo into consideration as she had a hysterectomy, so 'it can't re-occur' . My aunt, who had a hysterectomy at 21 (who also had everything removed), has the same thing. They don't like going anywhere where there isn't a loo for this reason. Do you have any more information on this that you can direct me to? I'm 26 and also have an adhesion on a section of bowel. They never said anything much to me about it other than 'it's fine for now' didn't explain anything to me about anything really.

[persil]

Hi

What about a bowel shave it would be safer. I'm in the same situation as you and I will opt for a bowel shave I will only have a resection when I've exhausted all other avenues

good luck

Persilxx

[chha]

Hi I recently have had colonoscopy and keyhole to check ovaries and my surgeon nearly missed bowel by 5mm. He found extensive adhesions from ovaries, to bowel to bladder wall to pelvic wall... He is confused what to do. Just over year ago had hysterectomy due to uterine cancer. I am scared aged 43