I’ve seen a few people on here say their ovary is still stuck to the bowel, and wanted to know what did their consultants say to them? Why wasn’t it removed? What are the potential consequences of leaving it?
Long story short! For many years prior to my diagnosis I would be awoken during the night with the worst possible left flank pain! I would pass out and throw up, and this would go on for hours then would ease!
I was eventually diagnosed, and all I was told was my fallopian was wrapped around my bowel suspending it! That was removed. Anyway, my bowel never recovered after surgery! It actually went from bad to worse! Til I got sepsis, my ovary, with a cyst, abscessed and now it looks like this ovary was also left adhered to the bowel!
I have read about the dangers of Ovarian Remnant Syndrome, where even a bit of ovary left in the pelvis, adhered to places it shouldn’t be, can lead to medical emergencies! Ie bowel obstructions and such as they still respond to hormones!
Do any of you have any bowel issues!? Will be interesting to hear your stories!
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Hi! Not quite the same, but I had constipation and vomiting with each period for years and was only diagnosed with endo when I was rushed in to A&E with “appendicitis”. The endo itself had finally obstructed my bowel completely, so I’ve had part of my colon removed. (Still got womb & ovaries for now...) I can believe that any part of your ovary left behind could act in the same way and could be dangerous.
That’s interesting! I have bowel involvement but not sure if it’s endometriosis on my bowel, or organs! I’d previously had a Fallopian tube removed from colon! But they’d obviously decided to keep this ovary adhered to it!
Thanks - I’ll have to see how it goes. I’m only a month post op! Hopefully periods will be something more manageable when they come back?? What a thing to live with, eh? Hope they can give you more answers and more relief. Xxx
I hope they are for you! Unfortunately I can’t offer you advice, as my symptoms are not cyclic, I am a weird Endo sufferer! One thing I’ve never had is painful periods! Well, I think once maybe it was so painful I went to the Drs! I did have very heavy periods but actually over the years they have got lighter! My last period, I didn’t even have an ounce of red bleeding!
My pain over my life has been almost daily to some extent! The last four years it was chronic sciatica down the left leg! For 4 years solid! I couldn’t bend over! Even the ‘worst’ pains, as in doubled over, 10, should probably go A & E have never happened during my period! In fact, the last time that happened, for some unknown reason, my period turning up actually eased my pain?
Seeing as you’re post op, have you started something to keep it at bay? It’ll likely be talked about at your follow-up, but it’s definitely worth trying to suppress your periods, especially if they cripple you! Xx
Hiya. Back in 2015 I had a tubo-ovarian abscess which caused me to have sepsis, I was told it was a cyst that went "funny". That ovary is non-functional now and I have been told is adhered to my bowel. I had a lap in 2019, they worked on some adhesions but only on my other side where I have the majority of my pain - on my "healthy" ovary I get cysts and ovulation is horrendously painful. Gynae's don't seem at all bothered about the side where I had the TOA, I know I don't ovulate on that side and the tube is completely blocked... I must say I wonder about the ovary being adhered to the bowel as I have a lot of cyclical GI / bowel issues, however I don't have any pain on that side other than menstrual cramping across the whole abdomen... all my pain and issues are on the other side where my ovary is still functional.
I do feel very let down by medical professionals, but that's a whole rant in of itself. So more to say I have experienced this but don't have any answers either. I'm working on managing my symptoms and the endo as best as I can holistically. I do have a gynae appointment in a couple of weeks, so will see what happens then. I guess I am more concerned about the side where I have constant pain, but it does concern me like you say about the bowel and GI issues maybe being exacerbated or even caused by the "dead" ovary adhered to my bowel.
In terms of bowel and GI issues I have: constipation and swelling between my legs mid-cycle, loose stools pre-menstrual and menstrual (as well as urgency). I suffer with pretty bad nausea too - it seems to fluctuate with my hormones. When I was on the contraceptive implant I had loose stools, nausea and some vomiting pretty much all the time. I've also had an impacted bowel twice that required hospital treatment, but those were both caused by co-codamol painkillers which I now avoid as much as possible.
Interesting that you say you have right side pain! My gynea asked me if I got right side pain! I don’t actually, it is left! I’m not sure if either of my ovaries are functioning, as way before the ovary abscessed, I had menopausal symptoms! Night sweats/hot flashes for ages before!
I don’t get diarrhoea often at all! Just impaction after impaction! Did they take the cyst or leave it after it went awry!? I don’t know if my ovary is functional or not! But I still get stabby pains and I currently look about 8 months pregnant, 4 months on! It is shrinking so maybe it is dead?
Hiya, sorry for the delayed response! I didn't have surgery when I had the abscess. I was rushed into hospital with a lot of pain and a really high fever - once they figured out what it was, I was moved from acute receiving to emergency gynae, where they kept me on watch and nil by mouth to rush me to surgery if needed... I was put on IV antibiotics and after I think 4 days decided that the infection was coming under control and not to do surgery. I was in hospital on IV for 15 days and then discharged with another 4 weeks of oral antibiotics, and scanned several times to check that is was continuing to reduce in size. Once the abscess had shrunk / gone I then only had follow ups to test my liver function and I almost had my gall bladder out (my organs were quite badly affected by the infection).
At the time they said the ovary would likely not survive the infection - it was during a scan a couple of years later that I was told it was adhered to my bowel, on some other scans I was told it wasn't visible? I know I don't ovulate from it as I get quite extreme ovulation pain and it is always on my right hand side, where my "healthy" ovary is.
I had a lap in Nov 2019 which confirmed that the left hand side is very scarred, adhered and my tube blocked. That surgeon wasn't particularly informative - he seemed very interested in my fertility even though that WAS NOT what the lap was for. Still, I was mainly relieved to know my problems weren't more sinister (e.g. cancer).. although endo, cysts and adhesions are hard enough to deal with and I feel so let down by medical professionals.
I know they saved my life when I had sepsis from the TOA, but I also went to the doctors 3 weeks before I was rushed into hospital because of the pain and bloating and feeling unwell - the GP poked my belly and said IBS and gave me buscopan. FFS.
Hopefully my story is of some help? I'm so sorry you are suffering with this too, it is miserable. I have to say the bloating I had from the TOA did go down with the infection - I wasn't bloated really after I left hospital. But I had lost an a lot of weight and it was over 5 years ago now so I maybe don't remember exactly.
Very interesting! I was put on surgical ward! I had 5 days of IV, sent home with a further 14 days, gp extended by 14 days! My bloating and night sweats have returned! So has the weight loss!
I have been put on Zoladex, and just had my last period and I can’t even describe the pain in this left ovary! Not sure if it’s functional, but it’s painful!
I subsequently don’t feel very well! I haven’t felt I’ve got better at all! I do, a bit then I slide quick!
I don’t believe my infection has gone! My ovary was actually still abscessed (thick walled) on ultrasound 2 weeks after antibiotics had been stopped.
I like you was unwell for a while before ending up in a & e! I had menopausal symptoms for 3 months beforehand! Then really bad night sweats, then weight loss, a lot! Then come pain, then period which eased the pain, then okish for a week, then nausea, then ok, I think I’m dying.
I personally don’t think the infection has gone! I am stinking rancid like I did with sepsis! I am having waves of nausea! Night sweats! And now pain and weight loss! Time will tell if I end up back in A & E but I feel like I’m heading that way!
Hi, I am so sorry to hear you are experiencing this. While I've have my complaints about aspects of medical care I have received (or not) - the staff, and nurses in particular, on the emergency gynae ward I was on were fantastic. The symptoms you are giving are exactly what I was told to look out for when I was discharged as signs the infection had returned. It probably needs to be taken into context that my experience was pre-covid, but I hope you can access health care in case it gets worse and your body needs help to fight any infection that might remain. I'm obviously not sure that's the case but I thought I should say what my experience has shown me. Have you got a temperature, or do you get one in waves? It seems like doctors seem to really take notice if you have a temperature and may take it more seriously if you are struggling to get their attention at the moment. I've also heard Zoldaex can make you feel pretty awful as well, so hope you can discuss what's happening with a doctor soon!Sending you good thoughts and luck xx
Hi there,I'm sorry to hear that you are still in pain and discomfort,
So my tubes and ovaries wrapped around my womb and as a big ball was pushing as far back as it could, which was applying pressure to my bowels, bladder, and lower back,
I would have constant lower back pain, pain in my stomach, and pain on the right side. First surgery was diagnose,
Once I had a diagnosis my second surgery was to remove the tubes as they where totally damaged, then remove the large cyst, all the endro tissue, check the bowels where ok, pull the womb back to a correct position and the same with both ovaries to place them all back in a correct position, also a vaginal shave on the inside as there was endro issues occurring,
After the surgery it all started to feel good but this was short lived as the reoccurrence was only a matter of time. Since being diagnosed in Fall of 2017, till now I have had 4 surgery's, 2 MRI scans, 4 ct and internal scans, 3 procedures, and currently am looking at another operation to take place with in the next 2 to 3 months,
I hope that answers your question.
My consultant was very careful with how he operated and there was some complications,
But the ovaries where removed from the womb and placed back in an ideal position where they would normally reside. So your consultant should have advised you of why they did what they did and given some supporting information for this too.
Also if your not happy you can ask to be referred to another consultant maybe,
I thought I tell you of my journey as it has nit been easy and is an ongoing battle with this disease, FYI mine is stage 4 and very bad as it spreads and consumes alot of area.
Hi 🙋♀️ I have Deep Infiltrating Endometriosis on the bowel, my ovary is stuck to the small bowel, my uterus is attached to the rectum, endometriosis on the urethra, P.O.D, uterus is in the 1% of uterus for a woman without c-section and it’s Anteverted, Retroflexed so flopped to far forward, but pulled right back kind of thing, thus looking like a ball being yanked out.
I’ve suffered since the first period in June 1994 I was 8 years old, at that age it was horrid, by December (9) I was in hospital at A&E to be told it was just because I was a little younger. By 11 I was placed on the pill, two pregnancies later (as a teen as I was told my fertility was declining but for a different reason, to be fair I wasn’t told my womb donor (mother) was told and subsequently I was told to conceive my children pre 20s or I never would. At 25 I came off the pill for significant period and all the symptoms that were chronic but semi-minor became intense, debilitating, life altering and extremely noticeable. 2016 seen the doctor several times. At 2017 told I had suspect PCOS (still awaiting an actual confirmation), told I had an enlarged Left ovary, an endometrioma at 7cm, a slight twist on tube, ovary and tube cemented to bowel with adhesions, and endometriosis all over with adhesions and fibroids and by 30 Nov 2019 when they first operated they didn’t do enough tests prior, and the surgeon was so under qualified and out of his depth all he could do was trim some adhesions apparently, and close me up. I was sent for an Urgent MRI and to and Urgent specialist. The MRI happened Jan 9 2020 and everything he cut was adhered to everything as above once again.
Never met the specialist (Covid), Still waiting and now on Synarel for chemical menopause because well there are sealed legal cases surrounding the popular versions of menopause inducing medication/injection P and L, with many many complaints and indemnity protection for the companies especially from incurable after effects. (LLB qualified)
So where I stand right now, I have no option but to have a total hysterectomy, since our surgeons in NI don’t and aren’t able to preform excision surgery, won’t redo MRI or other imaging tests to investigate regrowth, simply actually saying there’s no point we just expect the worst.
I have 5-8mm deep endometriosis on the bowel as of January 2020 and the don’t even feel that, that level of seriousness isn’t critical, only urgent. Urgent to this NHS here isn’t 18 weeks it’s 72-84 weeks.
To make matters worse I have a tortuous colon meaning I have extra length, loops and twists in the colon making the risk to the colon significant.
I haven’t been in work since 2017 due to the symptoms and a dick boss (who was family). I completed a Law Degree from home ( was supposed to attend) during the worst parts of my endometriosis and graduated in bed because I was in so much pain I couldn’t attend.
I have bowel issues recorded as IBS-M and my GI doctor is redoing my scope (can’t have colonoscopy due to tortuous bowel) and seeing if endometriosis has gotten through the bowel while awaiting urgent surgery.
I’m 34, with a 16 year old daughter who practically is my carer and and 18 year old son who wants to cure me. They’ve witnessed endometriosis cause my decline as well as cause other medical issues and exasperate my mental health.
But I know my bowel is at risk - the cyclic vomiting and diarrhea leaving me in sweats, dizzy and in panic attacks, the sharp cramps on the left side as if someone is jabbing the insides with glass shards, pain in the rectum sporadically enough to make you wince wherever you may be, the tugging feeling, the feeling someone has a hook and is trying to fish out your organs vaginally, the fatigue this all causes and to top it off the stress that it places on the body, then exasperating the symptoms and leaving us in a catch 22 situation.
I was quoted by a private surgeon in Birmingham £10,000 without bowel involvement, £12,000 with bowel involvement. I can’t work due to the symptoms and pain on top the fatigue... so there isn’t a mission of me being in a position to pay that and with a pandemic not a way to be able to take a loan and guarantee a job after to be able to repay. I’ve no family thanks to my sociopathic, narcissistic parents. So, I must rely on the incompetence of surgeons in NI that don’t even research endometriosis, haven’t got the skill to even operate correctly, even though any cancer surgeon should be able to do the surgery given this is exactly what it acts like and exactly what excision is.
Apologies, this wasn’t “long story short”
I may lose my bowel, I already have to lose my uterus and ovaries because of the lack of treatments and I’m probably going to have bladder issues doubled.
But everyone should become a member of EndometriosisUK for £7.50 if on benefits or £15 if not help them support us, and in return receive all the information, research participant requests and new breakthroughs all to your inbox. But supporting our own charity to help us is the least we can do I guess.
You definitely sound like you have it bad! Could you temporarily move to the U.K., close to BSGE centre, then get your treatment here in U.K. then move back to NI? To be fair, if it was cancer, they wouldn’t actually operate at this degree! They would get chemo, once lesions are less widespread, then they’d do surgery! We probably have the most extensive disease treatment, because it is considered benign! Although, it steals lives! I’m like you, my bowel is a mess! Each month when I’m on a period my anus swells and becomes painful! I’ve had bowel involvement of some kind since 25, so a decade now! I’ve been told I could end up with a colostomy once they remove it!
But looking at you, you need sorting properly! A hysterectomy will not cure your bowel problems! Xx
If only, that would be some cost to me and my family, not to mention the waitlist as well for treatment. I’ve exhausted all avenues even health insurance won’t touch me now.
I don’t need more issues but I’m prepared that there’s a massive risk. My womb donor had a massive cyst attached to bowel from womb and she was told her only option was hysterectomy and she refused. She suffered, and from what I hear she woke up one morning and couldn’t walk.
We are so under cared for in NI when it comes to endometriosis it’s unreal. Some of us are lucky to have health plans via work that pay for private, but the rest of us are treated like deplorables demanding drugs, whining and a cost just, with little help sadly.
Hysterectomy, will hopefully help my bleeding, cyclic vomiting and hormone surges, uterus pain and ovary pain... the bowel pain well it would be nearly insignificant compared to the Gynae pain.
I’d just like to be better like so many of us I guess xx
Hey, sorry to hear you are in such discomfort still 😢 my endo has managed to stick my bowel to my uterus 😖 I only knew about this when a surgeon went into remove my ovaries, he got a bowel surgeon Involved and they decided to abort surgery and wake me. They told me that the only way of removing my ovaries was a bowl resection. I went away and asked to be referred to a more specialist hospital in this area which for me was (st. Mary’s Manchester) I have not started seeing my new consultant (Mr Manias) who has been nothing short of amazing. I have started Prostap 3 a couple of months ago and once I have had 6 months success on this then he will go forward with a hysterectomy. He has told me that yes there is a risk of bowel damage but that’s a risk that I am willing to take to get this pain to hopefully ease. (I feel like someone is shredding my insides daily 😳 ) I have spoke to a lot of ladies that have successfully had this kind of surgery and have suffered no long term damage to bowel so I am optimistic. If this is having an impact on your quality of life then I imagine your consultant will want to do something about this, I have my fingers crossed for you, keep safe xx
It’s unfortunately been impacting on my life for 5 years! I had very extensive surgery 4 years ago! Like you had 6 months worth of Zoladex previously! My Endo was severe, on both ovaries, bladder, bowel involvement! Complicated by a massive pelvic infection, which was why my Endo was diagnosed! To this day I have no idea what they did, but whatever it was lasted 6 hours! I woke up with abdominal drain in, catheter and strapped to bed, then told I’d never be rushed into theatre again! And I haven’t, for 4 years! No idea what they did but I never recovered! So for 4 years I’ve battled on, complaining of pain, can’t walk, hot flashes, night sweats, to end up with another pelvic infection and sepsis and a TOA! To be fair, I only have 2 nodules on MRI! 1 on left ovary that abscessed and one between uterus and bladder, so I don’t think it’s as severe as last time, but managed to trigger another massive infection! So I await further surgery! Again told it may not improve my pain or quality of life! I’m like the whole point of this surgery is to cure my pain and fix my quality of life 🤣 xx
Hi, I had similar, they managed to remove ovaries, cysts and tubes that were stuck to uterus, but had to leave the uterus as stuck to bowel so aborted the rest of surgery. Being older they just discharged me so I don't have a consultant. I only spoke to the one who did the op for a brief meeting a week before the surgery. Since menopause I don't feel like someone is taking a food mixer to my insides every month so I'm going to have a break and think about what happens if I do need to complete the hysterectomy in the future. They found the endo during the surgery so weren't really prepared for it.
Don’t feel bad that you was discharged, I wasn’t! I have remained under 3 monthly consultation since my last surgery, complaining about my bowel and pain, for not much to be done, to almost die! It’s apparent it doesn’t matter! Discharged or not, you don’t get the help you require! To be fair, I was almost moved to 6 monthly consultations while still complaining as at that point they had managed to fob me off at the pain clinic, while they knew I had active Endo on ultrasound, that they was quite frankly ignoring!
You’re damned if you do, damned if you don’t! I mean looking back those consultations cost me a lot! In time, money and energy! Am I glad I went? As it stands, no! It turns out they was pointless, and I still haven’t worked out as to why, other than my consultant got a nice pay check for having me on his books! You need a referral to a BSGE clinic and need to push your gp for it! Xx
Yes, waking up with the big 6 inch incision, 6 small ones, catheter for a week, drain followed by infection and anaemia and a few other things I'm in no hurry for any more surgery, my large scar very faint now but still numb around it a year on, and tireder than ever. I'm only coping at work, just, as able to work at home part of the week due to the pandemic. Ironic.
I had a full hysterectomy the a year and a half later and had severe diarrhoea and left back pain and side pain. After a lot of passing the buck they did an ultrasound thinking it was kidneys it was an ovary growing… had surgery to remove it and the diarrhoea stopped. They left a tiny piece inside when removing everything and even though extremely rare it regrew x
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