Endo on bowel surgery...anyone had this? - Endometriosis UK

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Endo on bowel surgery...anyone had this?

little_fins profile image
10 Replies

Off tomorrow to have my endo removed that's sticking my bowel to my cervix and vagina and im terrified. Had anyone else had this surgery???

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little_fins
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10 Replies
Vicky3118 profile image
Vicky3118

I'm due to have bowel surgery too. My bowel is stuck to my ovary and Fallopian tube. I'm also very scared. Take care and please let me know how you get on xx

rainey6373 profile image
rainey6373

Hi gals. 18 months ago I was meant to have a hysterectomy, but it was not to be. I have what they call frozen pelvis, Endo stuck to bowel, bladder etc. Surgeon only managed to remove 1 ovary and and 11cm cyst. The other ovary was buried :( 7 Weeks ago after being on drugs to stop periods endo reared it's ugly head. Seems it got hold of my upper (small) bowel, caused a blockage by twisting it, had 6 inches of bowel removed, with a complimentary 11 inch scar that had 40 staples. BUT, please do not be scared. This was my 7th abdo op. Just do not be fobbed off. xx Hope you get on ok xx

worth71 profile image
worth71

i was diagnosed with severe endo earlier this year, they didnt remove any at my lap as said too much and suggested full hysterectomy. they said my ovaries are stuck to each other (kissing ovaries) and are stuck to my bowel, my womb is stuck to my bowel and bladder, and that yes basically everything in pelvis is stuck together, so much for them telling me for years there's nothing wrong with me lol.

my consultant just hasn't made me confident in going for this big op, it will be open not keyhole, they obviously want to do the hysterectomy, and remove the ovaries, and then try to remove all the endo, i worry about them removing it off the bowel, and then to go through all that and still not have any guarantee that it will cure the endo, and most women who seem to have it done for this reason seem to have their symptoms return within two years :/

i am going to wait and see how i go, i am managing my daily pain ok for most of the time, i think we just get used to the pain as the norm. i had an ablation at my lap so if that keeps the bleeding at bay then again i will keep postponing the hysterectomy. i'm not ready for instant menopause yet, or to risk oesteo and heart disease and then still have endo.

good luck ladies xxx

herby1969 profile image
herby1969 in reply to worth71

Hi Ladies . Feel for you all. I had my hysterectomy last June because of severe endo on bowel and ovaries and pouch of douglas. Never having children it was big decision . On morning of op they told me possibility of endo returning as they could only remove one ovary as I cannot have hrt treatment after op due to blood disorder. Came back within 4 months :-( .. Worse than ever because of all the scar tissue . Been complaining too for last three years about "stuff" from my belly button since my last lap before I had the hysterectomy, this was ignored time after time. Eventually got to see new consultant. Turns out its endo coming from belly button. Now been told nothing they can do as im limited cause of hrt treatment etc and no further surgery cause of further blood clots. We all are led to believe that hysterectomy is the cure for this condition , although successful for many its not always the case. Make sure you get all the facts as there is no turning back xxx

worth71 profile image
worth71 in reply to herby1969

oh my, i really feel for you, the more research i do about hysterectomy for endo, the more i come across experiences just like yours, which is why i am holding off for a bit, which is sometimes a pain as having my period every other week is really annoying me but i'm hoping this will settle in time, i may even ask for another ablation as i believe they will do it a couple of times.

i hope you can get some kind of relief from it all xxx

rainey6373 profile image
rainey6373 in reply to herby1969

Please, ask to try Norethisterone x I had an umbilical hernia op a few years ago. I suspect it was endo x

rainey6373 profile image
rainey6373 in reply to worth71

My Mum had the big op done successfully - she was put on Norethisterone. Never had any problems after. It stops periods. That is why, even though they never managed to do the op on me I requested the medication from a very understanding doc, who agreed with me that the coil, pill etc. that were offered by the gynae was a good option x

little_fins profile image
little_fins

Currently in my hospital bed after endo excision yesterday early eve. In some pain but doing ok. Came round and I'm catheterised up but actually not that bad. Had some issues with low blood pressure during night so not slept too well. Hungry and sore but not as scary as I thought!

Geneveve profile image
Geneveve

Endo really is so complicated and I really wish they could have a permanent cure or at least what causes it. My situation is this.. I am 54. I went to 3 different doctors, on purpose, to make sure I had more than 1 opinion. I went in for a ablation about 2 yrs ago, I was having lots of bleeding and abdominal pain. The lining of my uteris was thickened which can be a sign of uterine cancer. However, while doing the ablation, the dr, told me he removed a big polyp and did the oblation, but that's how he found the endo. It is also stage 4. All 2 doctors said at my age, if possible to try to wait menapuse out, because after menopause, it stops growing... doesn't go away but stops growing. So she wouldn't remove it while she was in there because the endo had adhered to

my bowel (which I now know is why I had an intestinal blockage) about 5 yrs ago. Anyway, attached to the bowel and small piece on my bladder and was all over my ovaries. They all gave me an option of the Depro Lurpon 6 mth shots to push me through menopause quicker, OR wait it out because my blood work apparently showed that I was already over the halfway mark in menopause. The only other option is if the pain comes back as bad as it did before ( and it is HORRIBLE pain) I have been to the ER 4 times in the last 4 yrs, not knowing what was causing the pain, well now I do. If it gets bad again, only other option is surgery for full hysterectomy and all 3 dr.s said that its a high risk surgery because of where the endo was. They might have to remove some of my intestine as the lady above mentioned as well as may have to have a colposcopy bag.. YIKES!!!!!!!!! Even though they say the bag is usually temporary , once it heals, they go back in to sew it back together. One doctor said the shots were only a temporary fix, it slows it up, but it can come back. So I will remain as I am now, unless pain comes back. The ablation has held up well for me , however , at a check up recently they told me the lining of the uteris had thickend up again and might do biopsy, went to another dr. and he said the swelling had gone down and sometimes that will flare up during menopause, which makes sense to me. Im sticking with the newest dr. and praying to get through menopause without drugs, shots or surgery. only time will tell. I also am very careful about drinking lots of water and eating healthy because things have to keep flowing through easily because if I get stopped up, it causes the bowel to inflame and since its hooked to the endo it causes digestive issues, blockages, etc. So ... I take lots of fiber, a prescription they give me every day for Dicyclomine, it just relaxes the colon. And drink more water than I ever have..... so far so good. At 54, I don't really want to have a major surgery , which is what they said it would be, with one surgeon to cut endo off bowel and one for the hysterectomy part. So I am waiting and watching. I have hot flashes when Im sleeping at night sometimes and get depressed,sad at times but hormones cause that. Im taking a low dose of Xanax just to relax anxiety that I have. Good luck.

cancanlegs profile image
cancanlegs

Hi, I am sure you will be fine, they know what they are doing, its there job! I just thought let them get on with it. Yes I was tearful before and after but the nursing staff were Great! They will see you right with pain relief after and you will prober sleep alot, I know I did! I will look out for your nxt post. x

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