Help!Has anyone had to have open up surgery as bowel has attached so badly to the ovary & womb meaning cysts & endom can't be treated at lap

I've just had a lap, but they couldn't treat the cysts or the endometriosis because my ovary & womb have attached to the bowel & the endom is too vast & large to treat at lap stage. I've had it for years & didn't even know, as my only symptom was very painful, heavy periods so it was never diagnosed! V.frustrating as I've now got a very difficult decision to make:-have the major surgery but have potential risk of serious bowel damage, or don't have surgery & never have children as ivf won't work as it currently stands. I'm in pieces. I want kids SO Badly, but there are risks of having the surgery. I'm 41 in few weeks, so do not have time on my side. I'm Seeing specialist first anyway but Wondered if anyone had to be referred to endom specialist cos it couldn't all be resolved/removed at laparoscopy stage? Thanks in anticipation.

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  • Hi, I had the same experience 17 years ago. I had very similar symptoms to you. The Dr's did a laparoscopy but found my left ovray comcompletely attached to my bowel. So I had to go back in for them to open me up and cut away the ovray and clean endo off my bowe, my right ovray, womb and kidneys. It was a hard decision but it was the right one for me because it enabled me to go onto have ivf a few years later and have a precious son.

    I hope and pray you get some peace in this very tough time and are able to make a decision that is right for you

    Xx

  • Thank you VERY much for your kind response. How old were you when this was done? Because I'm now nearly 41 and my egg count is seriously low I have to weigh up everything. So you had no damage to your bowel or other organs during the open up surgery? We're concerned if bowel damage occurs, which consultant says is a strong possibility, I may have permanent damage and still unable to achieve successfull ivf. Thank you

  • I was only 24 when I had mine but because i was so bad they had to be very careful not to damage my bowel or other organs so the op took over 8 hrs.

    When I went to have ivf 2 years later my egg count was very low infact when they harvested the eggs there was only 7 but even though it was low I was able to have a son.

    I'l pray you have a sence of peace in your decision

  • Hi, I've just booked a laparotomy - open surgery, to have my tubes removed. Slightly different but they can't do it by lap because my ovary tube( and the bowl was mentioned after lap but not since so not sure if they'll touch bowel.) Are all stuck together so they need to cut away adhessions before they can get to tubes. They believe this should reduce pains but I had to agree to this or can't have ivf as my tubes are hydrosalpinx which means they are full of fluid and would kill any embryo so can't do ivf till they're removed. I'm not keen but am holding onto the thought of pain relief and without this I can't try for kids so to give us a chance of ivf I am now booked in for November. To have the choice back to try for a baby has given me hope back after thinking it would never happen. There's no guarentee but it's amazing how just a little hope keeps me going at the moment. So although I'm not having same issue I do understand how devastating it is to be told without surgery you can't have children. It's got to be your decision and I hope your surgeon can put your mind at rest and answer your concerns x

  • Thank you. I wish you all the best in November, and with future ivf. Yes it is a very emotive subject and an extremely hard decision. Thank you for your reply though. X

  • Yes mine involved the bowel, bladder, kidneys, both ovaries etc etc. Stage 4 Endo and adhesions. Massive LHS cyst. But I was referred to a specialist NHS who excised it laparoscopically in Brighton UK. I also went to an open day at Guilford UK to attend a talk by a colorectal surgeon who specializes is Endo/Bowel surgeries via laparoscopy. We watched a video of him performing a major bowel resection. Both surgeons are NHS. There is a also a private surgeon up North in the UK who is a laparoscopy-wizard, so I hear.

    My understanding from talking to both those surgeons in person is that a very skilled Gynae Surgeon can perform very complicated surgeries without Laparotomy.

    If you are in the UK, there is a charity called Endo UK who run support groups in various cities and towns.

    Tea Cosey xx

  • Thanks so much for the knowledge. Were you told there could be damage to organs during surgery?

    Apart from dreadful periods and constant problems going to the loo, I'm relatively healthy so it's just so scary the thought of permanent bowel damage. But without surgery i won't be able to have Ivf. They also said they don't know if my ovaries will function correctly after the op. It's so hard to know what to do! I will be having it done in Plymouth. Xx

  • Yes. There is always a risk of damage with any surgery. xxx

  • Hi Tea cosy,

    I know your post response is over a month old so I’m just hoping you’re still a member on here?…

    I was just wondering if you would be kind enough to PM the names of those Surgeons?

    I’m not feeling too well tonight & it’s getting late so I need too long off now PLUS my situation is complex but I need to find a *good* Endo Gyne Colorectal team.

    I did Consult with a Endo in Brighton so just wondering if it’s the same Consultant?

    But I’d be very interested to know about the Guilford Consultant as I’ve already had a messed upLapin2011 which caused some damage to my bowel & has emulated into more serious issues…

    Anyway I’d be grateful for any info you don’t mind?

    Best wishes,

  • Hi,

    Not sure if this is too late or even too far, distance wise, last week I had surgery at the Churchill hospital in Oxford to remove quite a large section of bowel that had endo all over, the gynae surgeon from the gynae centre in oxford joined the bowel surgeon for the operation which I think was quite long, about 5 hours, and the result is super positive at the moment, I was really pleased with care I received and the bowel surgeon specialises in endometriosis so was amazing, having googled him, he also does a lot of national training in this gird, mr Oliver jones is his name, a week on and as much as I am on liquid morphine from the operation pain I don't feel as if it endo pain anymore xx

  • hi to all i'm just out of hospital as on the 30th july past I got a cyst drained on my left ovary & coil put in, but I haven't felt a bit well since I got the coil in. as past 2 wks I have been very unwell so went to my Dr but he sent me on to A&E I have a really bad infection & the cyst they drained a month ago is back larger @ 7.2cm by 5.2cm. But the problem they have with it is my bowel is stuck with endo & I just don't know what to do!!!!!! any answers?????

  • Hi, I had laprascopic surgery in June this year to remove extensive endo, cyst on my ovary, bowel pushed back on itself and stuck to my uterus, ovaries stuck to my womb, bladder and tubes stuck. My consultant sent me to see a bowel surgeon and he was present during my op, I also saw the stoma nurse who discussed everything about having a colostomy or iostomy bag and the morning of my op she came to see me to put two marks on my tummy so if something did happen to my bowel during surgery my bag would be in a good place on my tummy. Sounds terrifying, I know, but I was also told by my bowel surgeon he has only ever had one patient who ended up with a permanent bag and a small percentage, cant remember how many now, who have had a temporary bag, then had reversal surgery. As you have already said there is a risk of damage to any of your organs during surgery. I would advise getting as much info as possible and discussing it again with your consultant. As teacosey said specialist endo surgeons can perform this can of surgery by laparoscopy. Good luck X.

  • Hi - I underwent excision of extensive endo (on bowel, bladder, utero-sacral ligaments, recto/vaginal, diaphragm, ovaries with the surgeon up North you are probably talking about who is fab and did it all by laparoscopy. I travelled up from London to see him. I had what is called "total peritoneal excision". This is where the whole layer of the peritoneum is stripped out so that all endo is removed from that layer, whether seen or unseen. He also shaved the endo off the bowel (it is quite rare for it to actually have penetrated the bowel, more generally it is on the surface), shaved it off the bladder etc. Everything was stuck up and out of position. That was 2 years and 9 months ago now and I have not had a sign of endo pain since and everything back to normal. I have never ever had such painless periods either. Quite amazing really and not a day goes by that I am not grateful for his skill and dedication. I can't comment on the fertility aspect of the op as I was 49 when I underwent it so it was not an issue for me. I do know of another lady who had failed ivf and underwent this surgery with him and is now expecting via ivf so there is hope. You do tend to hear the more negative side of endo but there are success stories too. I don't know how long I will be free of endo, he seems to think now it is all removed, that should be it. The endo experts say the reason it is generally believed that there is no 'cure' for endo and it always comes back is simply because most surgeons do not remove it all.

  • Thank you for your reply - I am just going over some of the replies again, as I am still so worried and confused about what to do about the open up surgery & spotted your post again. I am so glad that it all went well for you and you healed well. And its great that a lady had the op & is now expecting - it is definitely nice to hear about sucecss stories in all our worry, stress and upset dealing with these issues. How did you get to see this surgeon in London? Did your consultant or GP refer you? Is he NHS or private?

    I have been referred to the specialist endo surgeon in Plymouth & I'm currently awaiting an appointment from him to discuss surgery - but open up surgery not lap as I've been told that they can't treat it at lap. But you had all your endo removed through lap?

    Did they have to seperate your organs too? Because my left ovary is attached to the bowel this is why my lap surgeon keeps saying I must think very carefully about the big op because the bowel could be damaged as they detach all the organs etc. Of course they don't even know, because of the state of my insides and severity of the endo, whether IVF will work afterwards and if my ovaries will come back to normal - also my egg count is very low. I am concerned because of my age, they are just going to say its not worth the risk of complications during surgery for such a low success rate of ivf afterwards because of your age and egg count. Thanks for your reply xx

  • Hi after TTC for 2 years I had a lap in January that showed I had stage 4 endo which came as a massive shock to me, like you I was told that they hadn't done anything at the time as it was too severe and I would require open surgery to remove it. The endo had stuck to my bowel, bladder, stuck my ovaries to my pelvis, I had a large cyst on my ovary and it had effected my tubes.

    The thought of open surgery scarred me to death if I'm honest, I'd never had an operation before so having it done wasn't a decision I took lightly but what I was told was the endo would halve the chances of IVF been successful and that aside it was effecting my other organs which obviously isn't healthy so sooner or later something would have to be done about it.

    I had the operation done in April, it took 3 hours, I was in hospital 5 days and the recovery was 4-6 weeks. The operation was a success and I'm now half way through an IVF cycle and I'm

    praying its all been worth it.

    Good luck and if you have any specific questions feel free to PM me xx

  • I am just going over some of the posts again, as I am still so worried and confused about everything and spotted your response - I am not even sure if I read this a few weeks ago, there were so many coming in at the time! But thank you v.much for your reply. It is very scary as you say. Particularly as apart from horrific periods, problems going to the loo and fatigue almost all of the time I am relatively healthly, so the thought of bowel damage is quite scary despite the strong need/wish to be a mum. Before you had the open up surgery did they keep reiterating to you the possible implications of bowel damage cos ovaries stuck to bowel & the severe endo to get rid of? The consultant who did my laproscopy in a meeting after the op, kept saying we must think very very carefully about having it done, because permanant bowel damage may occur - my husband seems to think he was saying (in a round about way) don't have the operation as its too risky!

    I know its his job to give all the implications, but surely a specialist endo surgeon and bowel surgeon will be able to get all the endo off, detach the ovary without any damage?! I am still awaiting my appointment to see these specialists in Plymouth. I am SO glad your op went well - so you recovered in 6 weeks - ummm they told me recovery is anything between 3 - 5 months after open up surgery, its so hard to when you hear varying stories or get conflicting advice from surgeons!

    Do you mind me asking how old you are? I am wondering if because I am 41 now the surgeon who did the lap, is saying the risks are too great when the chances of a successful IVF after the op are so slim - my egg count is extremely low as well. Whereas if I had been younger and going through this decision, maybe they would advise that the chances are good for a successful IVF after such a big operation. Of course they know I will have to pay for IVF now, so maybe they feel the chances are slim, because of my age and egg count, they don't want me to waste that kind of money. Who knows.

    I am so frustrated that this wasn't diagnosed years ago by a GOOD GP! They just kept saying you are unlucky suffering with really bad periods and treated it with various tablets, the pill etc. It was only when I came to try for a baby - unfortunately late in life - that all the problems starting rearing their ugly head! It was really good to hear a success story though, I look forward to your reply and thank you for your time. I really hope your IVF goes well XX

    PS - What is TTC?!

  • Hi before I forget TTC means trying to conceive. Here we go I will try my best to answer all your questions. Regarding to permanent bowel damage yes they did mention it but didn't go on about it, it was more just something they had to mention but its possible that mine wasn't as bad as yours. 3 - 5 months recovery time seems excessive to me but again perhaps they're just preparing you for the worst.

    I am 37, we have just completed an unsuccessful round of IVF, in fact we didn't actually complete it, I produced 2 eggs which wasn't enough to go to egg collection so they changed it to IUI but unfortunately it didn't work so we are seeing our consultant tonight to discuss where to go from here.

    With regards to the op only you can make that decision but what I will say is you need to have complete faith in the person who is doing it, we actually changed consultants and paid to have my operation private as neither of us had any faith in the NHS consultant, she was very negative and we didn't feel she had our best interests at heart, you also need someone who fully understands both endo and fertility. I only had my op to improve my chances of conceiving as the endo symptoms weren't anywhere near bad enough to justify such a large operation.

    I hope this helps but please feel free to ask anymore questions.

    Good luck x

  • Thank you for your prompt reply. I am sorry to hear about the ivf - god its so hard isn't it. :(

    Did you just search online for a private endo surgeon then - or did your GP give you a recommendation? I have yet to meet the specialist endo surgeon in Plymouth, but yes that is a worry that you feel you are just a number, rather than an individual etc. I really hope we have faith in them, as we are saving for to pay for IVF, which is a lot, so financially I don't think we can pay for the operation too. I don't particularly get a lot of pain related to the endo either, so the operation would be for my fertility chances too.

    Thank you for all your advice xx

  • Sorry me again ! Do you know why it seems that some ladies (stories on here) say that they had bad endo treated at laproscopy stage and also ovaries detached from bowel etc - and yet I have been told I have to have open up surgery to resolve this?

  • Unfortunately every women is different, the way the endo and adhesions develop and stick together is completely individual, there will never be two identical situations. Also all women are warned that their lap could turn into open surgery, it completely depends what is found and because laps are the preferred option the surgeons will always try/consider that first, they would only ever recommend open surgery if it really was necessary. You say you are waiting to see the specialist, until you get to talk to them you won't know for sure what they want to do, each specialist will make their own assessment of you, although any details they have from your medical notes etc will help them they will make their own decision and may still decide to try a lap first. Do you have any idea when you may get an apt?

  • Hi again

    Just noticed that my reply I posted to you on here this morning has disappeared! I think the specialist you will be seeing are my specialists, I had surgery 7 weeks ago with the endo specialist and second op next week with both endo and colorectal surgeon. I've sent you a message with my email if you want a chat etc. if its the same doctors then they are very good. I see them privately at Nuffield in Plymouth but they also do Nhs, I was referred from other private gynae as they are much more specialist where things are stuck together. Seriously if you ever want a chat let me know - if you're in devon we may even live near each other! x

  • I think it depends on each individual case, my consultant said in 95% of cases he would do it by lap but in my case he felt open surgery would be better and would give me the best chance

  • I had a lap 2 weeks ago and it had to b abandoned coz he couldn't get the cameras in told me I needed major surgery, that was all he said really don't have my follow up till 18th oct so been abit worried had to make an appointment with emergency gyny last week coz was in so much pain and bleeding really bad, she told me she didn't want to interfere and to wait and c my own consultant what she did tell me was my bowel is stuck to everything and I'm so confused by it, 18th seems so long away x

  • Hi. Ive just tead your thread from a few months ago and just wondered if you went ahead with surgery.

    Im due my op around Sept. Ive slready had 4 previous operations including hysterectomy. I had my daughter when I was 19 amd I am now 41.

    I had my right ovary removed earlier this year as had very large cyst (size of small babys head) and they should have removed left ovary too as have a large cyst in that one but not quite as big but couldnt as adhered to bowel and was so bad they couldnt even see the ovary. Its affected by bowel by making it very swollen and inflamed.

    My cervix still remains from the hysyerectomy and is adhered to my rectum. So my nxt surgery is to remove my left ovary and cervix but ive got to have bowel surgeon present as expected damage and been warned could end up with a colostomy. Surgery will also be done by laparotomy.

    Due to the pain im constantly in I have no choice but to go ahead with surgery and trying to prepare myself mentally as much as I can to worse case scenario. Which is easier said than done.

    I hope which ever decision you made was the right one for you and hope you dont mind me msg you x

  • Hi there - sorry to take so long to respond. I don't come on here that often and sometimes its just for a little read, I don't get the time often to actually respond.

    Sorry to hear of your troubles! The cysts sound huge and painful. My operation was to increase my fertility - oddly even though I was riddled with endometriosis it is only painful a few days before my period and then when I am on. I have horrific heavy painful periods but I don't get the pain I hear about from the ladies on here - luckily. Because I was diagnosed so late, it had just got so bad down there, there was no way I was going to fall pregnant naturally - the down side of marrying late!

    Anyway yes I did have the operation in March - the bowel surgeon was there along with the endometriosis specialist. They worked on me for 5 hours - thankfully they didn't have to open me up and did it all by key hole. They couldn't take all the endometriosis away from the bowel as it was too deep and I would have almost definitely had bowel damage, but they took away enough to help my bowel movements better. They also took away the cysts around the ovaries, but mine weren't as big as yours.

    I really hope everything goes well with the operation and its sorts out your pain.

    Best wishes

    X

  • Hi. Thank you for your reply. Only just seen it :)

    Really pleased your op went well and without he need to open you up or damage your bowel.

    Good luck with your ivf when you start your treatment.

    I've had a date through for the 15th sept. They've had probs getting a bowel surgeon from another hospital but at least now I have a date.

    My op with definitely be done by open surgery with them already trying by lap before. But I'll be just pleased to get done relief.

    I am nervous that I will end up with a stoma but read up a lot about it and slowly coming to terms with it and keeping everything crossed won't gone yo that. But I know as soon as I come found afterwards I'll be feeling my tummy to see if there's a bag there.

    I really hope you continue to feel better and again good luck with trying for your baby. I was lucky and had my daughter nearly 22yrs ago I'm nearly 42 but had her before my probs took hold. I cannot imagine what you are going through

    All the best xxx

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