43 weeks after I had my MRI showing I have two cysts in my right ovary I’m finally getting to see a gynaecologist on the 28th August.
10 days ago I was referred for an urgent colonoscopy after stomach cramps and rectal bleeding. FIT test results were >400.
No idea when I’ll get that.
I am so tired of being sore and bloated and just left to wait it out. Has anyone else experience bowel problems that may be due to cysts and/or endo?
Im not sure if it’s something completely different.
For context:
I have the mirena coil which has stopped my periods completely which is great. I was diagnosed with endo about 11 years ago, have had a laparotomy and laparoscopy in the past. I’ve had ovarian cysts removed at those times and endo tissue.
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Sparrow3
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Hi Sparrow3 mines a long one. I had pain & bloating swollen stomach, in my belly started mid October, along with blood when I wiped after passing bowel movement, pain was really bad so went to gp who referred me for a ultrasound of my womb even though I said i passed lot of blood from my bowel, she said it could of been my ibs, or piles which I don’t suffer with.
(blame everything on ibs now which Iv had for years, they took my appendix out for nothing when I was 18 as had stomach pains and bloating for years and as it turned out it was ibs all along! As well as endo, Only found out when I moved home and changed Gp)
anyway had the internal ultrasound and belly ultrasound , which showed a simple cyst on one ovary and cystic appearance of lining of endometrium, Got referred in December 2022 and still waiting to get an apointment for gyny at hospital, backlog of 12 months I was told so god help anyone who has cancer. Time is of the essence. First thing ever happened at the End of March, I had sudden excruciating pains in my belly felt sick with the pain as went above my threshold, went toilet and passed a lot of blood clots from bowel which carried on all through the night, pains passing blood, felt like distress but it wasn’t, just blood & lots of clots in toilet, , till it got worse, i got scared so went to a & e which was waste of time, waited 9 hours and tried to say bacterial infection. Contacted my gp on the Monday told what happened in econsult, they said no referral until I had fit test, by time o got the fit test and results back 4 weeks passed in all from hospital visit at the & e FIT came back positive so then referred on 2 wk pathway for colonoscopy, they found nothing, suggested gastrophy which I had later on, after pushing for answers, shouldn't have to really! they found cysts in my stomach but wouldn’t of caused all the pain and loss of blood from bowel the consultant said, so I still have this low abdominal pain with bloating and don’t no what caused it, they just don’t no, and don’t seem to want to take it further gir answers as it must be something, my hubby is not happy at all at the lack of care and gp not looking for answers, I’m just scared in case it happens again as the pain when I passed the blood clots was horrendous. Hope you get sorted better than I am lovely good luck but you should get seen within 2 weeks with FIT being positive xx
The only reason I found out I had endo in the first place was because of a suspected burst appendix 🤣 it was cysts that had burst. No idea why they find it so hard to accept endometriosis as a reason!
That’s what happened to me, nausea, stomach cramps then just kept passing lots of blood, nothing but blood. I went to the GP and she booked me in to get blood tests and a fit test then referred me for an urgent colonoscopy the same week. Said I’d get one in 2 weeks but I phoned the endoscopy appointments number and the wifey said “you were referred 10 days ago, the surgical team haven’t reviewed your case yet but if it’s urgent you’ll be seen anywhere up to 16 weeks” 🤦🏻♀️
That is horrible just being left to it, just deal with the pain and no answers given 😔 my cysts were 6cm and 4cm but that was in October so I have no idea what size they might be now. If they find anything I’ll let you know and maybe it can help with your diagnosis.
Hate seeing people being fobbed off. My friends cousin was repeatedly fobbed off by gps, she actually had cancer and died last month 😔
That’s absolutely disgusting, a positive fit test supposed to prompt the 2 week colonoscopy L, just remember now before my colonoscopy I had a phone assesment with someone from the hospital who then referred me for the scope. With my colonoscopy being clear and gastrophy showed the multiple polyps that wernt a concern apparently the only thing I could relate to it was the problem with my womb cyst and cystic changes but I didn’t then think related as the blood I was passing was from my bowel, and thought it would be blood from front end if it was related to that, just need answers now, your problem Def sounds like mine being bowel blood loss, I don’t have periods due to early menopause , but was told I had endo before menopause and offered uterus ablation, which I said no to, just as well as my thyroid went. Easy and pushed me into early menopause, but the pain feels like bad period pains coming and going, but Iv not passed the blood like I did March April over the full days of Fri to sun from my bowel since then, are you still passing blood or was it over certain days x
Mine lasted 5 days but have stopped bleeding now. I thought they usually take out the polyps?. I thought that the cysts might have gotten bigger and possibly pushing on part of my intestines. I’ve been googling too much 🤣
I have the mirena coil so I don’t have periods either. It was strange having what felt like bad period pains again.
The polyps were found in my stomach whdn having the gastrophy they are called hyperplastic polyps which he said aren’t a problem and wouldn’t if caused all the pain and sudden blood loss from my bowel.
Please let me no how you get on as need to know if stomach or womb related problem can cause sudden pain followed by passing blood, felt like it was diarrhoea the way it passed but was pure ribbons of blood then early hours passed a large blood clot, no one seems to have the answers but you do g lose that much blood suddenly with excruciating pain and bloating for no reason do you, hope you get some answers as I’m struggling to get any, just do the test and that’s that no follow up or further investigations, really gone bad lately nhs, I’m like you been waiting so long for the gynaecology appointment, I keep phoning g and now I’m looking g at November so that’s 13 months since it first started, period pains driving me mad as I suffered really bad gif years before fuagnoof endometriosis and I can’t even see it on my notes online so that’s another thing
That’s so sad and Bloomin awful about your friends cousin, cancer needs picking up as soon as, was she in similar situation to us
No it was something different. I felt so sorry for her family, she had two wee boys
When you get your gynae appointment I think you should write down everything you want to say and ask, and don’t back down! Before I got my FIT results the doctor was very nonchalant about it all “maybe it’s a one off”. I thought the same as you! Even if I was better now it’s not exactly normal!
I first went to the doctor near Christmas 2021 about pain and bloating, 3 months for an ultrasound, 8 months for an MRI then 10 months for a gynae appointment 🙈 It’s hellish, I hope you finally get answers too! But I will certainly let you know if I hear anything that might be helpful! Xxx
That is so very sad, too many people walking around with god knows and can’t get seen too in time to treat it, really not good in these times.
Oh I always write everything down along with pictures to explain that way too., that I have taken when the blood loss occurred. My doctor was exactly same, obnoxious when I told him I wanted to be referred as I’d been to A & e as so scared, and all they did was asked me for a poop sample, took bloods and inflammation markers were up so said prob bacterial infection like e-colour 😡even though kept on and on it wasn’t poo I was passing it was blood clots 😤 I asked for a scan or anything in a & e at the time with it just happening and still going on but they refused insisting it was bacterial infection sent me home with antibiotics 😤 I gave him a sample which was a blood clot that just fell out, that came back to doctors as negative but abnormal for what I do not no but it should of been followed up at hospital not passed on to my Gp like I didn’t matter.
The dr just played it down, (he is an right arrogant doctor, makes you feel you are troubling him, he’s so arrogant)
Until my fit test came back positive! then he phoned me to refer me! Never had that before he must of had a touch of conscience going on. Hope you find some answers and get some help x
I experience bowel issues with my endo. Significantly less since my surgery in 2021. I have stage 4 endo so it is quite typical of the presentation of endo. Worst during periods fluctuating between diarrhea and constipation, but starts with bloating even days prior. Does anyone experience leg pain with endo? I thought it would get better with the surgery, but after 6mths it is has been very nagging pain, some time both legs other times mostly my left leg. I get quite conflicting opinions about its relation to endo. Some consultants say it is probable, but my GP surgery seem to have no clue.
Hi COLACAF Have you passed any blood or blood clots ftom the bowel with pain, as just can’t work my bowel blood loss out, what’s caused mine. I had endo but said no to ablastation when offered as it was fairly new, and shortly after had a bad time due to thyroid which pushed me into early menopause, so haven’t had periods for years, but still get awful bad pains when I think it may of been my period due not sure how endo works when you have been through the menopause
Hi,No. Sometimes I pass blood, if Im constipated at the time, but never clots.
Your case is unique with those other factors in play. I would think you would have had a bit of relief from your endo symptoms because the early menopause. I would definitely like to know the specific medical pathway in this case.
I have been reading that if diagnosed before menopause you can still experience it amongst other things, my gynaecologist apt looking at November after referral in Dec so I will update when I no more, but tye usual pelvic pain period pains with no period still continued like monthly clockwork through the menopause for me, pain is not going away at all, I was diagnosed with ibs but who knows it could be related to the endo, seems a lot of us are having to try solutions and causes that the medical teams are supposed to do
I have pains in my upper thighs quite a lot, and that’s without periods (the mirena coil stopped them). I was diagnosed with endo after an emergency surgery 11 years ago, I have no idea what stage my endo is but I suffered badly since day 1 of my periods. My mum had a hysterectomy at 36 because of it.
I was same at 11 suffered terribly heavy periods, pain was bad nearly passing out sometimes could of been anaemic but never know no, as just had to get on with it those days. but I was always anaemia later when getting bloods done. My mum was exactly the same so I think she may have had endo but never went to get checked until later life had fibroids then womb cancer so had hysterectomy
yes had bowel trouble for years sent for colonoscopy was told it was IBS but it was related to the endometriosis. So the IBS was triggered by the endometriosis, told doctors bowel was worse monthly but sure no one was listening. Waited prob over 20 years to find that out! Only diagnosed endometriosis 2015....fainting periods the works.. no doctor listened. Hope you get sorted and don't take no for an answer.
That is terrible having to wait for so long and just having your pain dismissed the whole time. Thank you for replying, just trying to draw on other people’s experiences before my appointments.
I have my gynae appointment on Monday and my colonoscopy appointment on 14th Sept. I definitely won’t take no for an answer. I spent far too long just accepting all these symptoms as “normal” for me.
I have to get another scan as it’s been so long since my MRI. I got more blood tests done but still waiting on results. I told the gynae about my laparotomy in 2012 and she said it’s not in my notes because I lived in a different health board 🙈 I told her I was diagnosed with endometriosis. She was confused why they would have had to open me up, I told her I can’t remember the full details, just burst cysts, a twisted fallopian tube and endo tissue, so I’ve applied for hospital records…. Hopefully they’re still there!
Makes me wonder too because on my dictirs notes online it doesn’t even mention endo only says menstration disorders and another listing as polyp on cervix. Hope you don’t have to wait too long for scan I’m still waiting a first apt which will be a year by time I get one. Your records should still be there, bad though that they can’t access them
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