Just an update to say I had the results of the MRI today. Stage 4 endo, everywhere. Particularly around the rectum, bowel, on my C Section scar... ovaries, inbetween vagina and rectum, I think he said bladder too. It was all a bit of a shock. I also have adeno. Lap booked in 2 weeks as I am so so so fortunate to be going private. He said that it is very likely I will need a full hysterectomy but lap first to determine everything and to get it sorted. Feeling overwhelmed as I didn't expect it to be this bad. Feeling also very lucky to have amazing support from my family, and to everyone here who has been so reassuring and lovely. I will no doubt be looking for some advice in the future so thank you in advance!
R x
Hello,
I am looking for a bit of reasurrance. I have suspected endo and adeno and I am waiting on an MRI to see what's going on. I also have a cyst on my left ovary. The major problem I am having at the moment is with my bowels. For the past 5 months I have had mucus from my bottom the day before and 1st day of my period accompanied by horrific pains when trying to have a bowel movement. The rest of the month I am left with this horrible feeling of needing a poo, or to pass wind. I think I've caused some hemorrhoids by straining which isn't helping. I am also having looser stools, sometimes harder to pass... it's just all over the place. My periods are always very heavy but this month, weirdly was only 3 days, but the rectal pain persists. Sometimes its in the tailbone or in my back. I just wondered if anyone has symptoms outwith their period?
Thank you!!
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Rose153
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Hi Rose I am the same I havent been diagonsed yet. I litrally didnt have periods for 12 years while I had the contraceptive implant and it was removed Dec 2020 and I have been having the same agonising symptoms since. My GP suspected endo I had a pelvic scan and this appaered normal, stool sample and bloods normal so my GP refered me to gyne still waiting not sure how long it will take, its horrible isnt it Im getting my inplant back in this week as I cant cope and also to see if the symptoms ease.. of the do thats more eveidence that it could be endo so I hope I will get to see a speacilist and find out and get treatment x
Pleased you have a GP who knows what it could be, mine keep saying my symptoms sound awful but pelvic exam, bloods etc are all fine and they won’t suggest anything. At the end of my tether with it!! Want to see a specialist but worried about cost, just wish my GP would look into it properly for me
This for me is my worse symptom, I can’t sit some days due to the pain that stabs upwards with any pressure. What began as pain and difficulty passing stools almost like a blockage some days to really loose the next has now also developed into a discharge the same colour as I get around ovulation/beginning and end of period, Some weeks are okay and others are agonising! Keeping a diary of symptoms when they occur and how they evolve will help when it comes to your appointments! It’s worth me noting that my scans never show anything, if yours are the same don’t let it deter you from finding answers!
That's awful for you. Yes it's so worrying when you don't know what is going on. It's really crazy that with so many women suffering there aren't more specialists who can help x
Hi Rose, I had an MRI twice Jan 2020 NHS and then Privately in May, your symptoms are about 5% behind mine but they are definitely indicative of something in my opinion. I have 10mm DIE on the bowel, my ovary is attached to bowel as is rectum. The bowel symptoms are horrific to say the least. As I say you are extremely close to my symptoms. And I say this, only as my newest symptom is bleeding rectally, not a dribble but after a movement for 5 hours at my longest recently. They are doing another CT- Colonoscopy to check again.
I would request to referred to a GI a specialist for investigation simply because Gynae are really slow in my opinion and GI will rule out most serious causes quicker especially with the mucus - which I had also.
Get ice packs - poor area will need them sadly. And I highly advise using moist wipes (Prep H) I’d you can afford them or any unscented ones and have some haemorrhoid creams /suppositories on hand. If you suffer with loose motions always take spare trousers and underwear with you just in case… it can happen 😣.
Bowel symptoms mimic IBS or sometimes it’s more severe friend IBD but always get bowel checked out for changes.
I’m currently on my 4th/5th year waiting for “proper” surgery now so definitely push for investigations and don’t be agreeable is my best advice at this point.
I highly recommend getting a private MRI if you can afford one. I saved for a year to get one (unable to work right now). It was £400 in my area for one location MRI’d but it has given me enough to speak to a solicitor and understand the progression in a small window.
I’m so sorry you have to go through this also, it’s debilitating, horrifying and no woman should ever get to this stage sadly. Sending all my love ❤️
Thank you and I am sorry you are feeling awful too. My GP has been super, she did a full blood work, stool test etc. I have had a private ultrasound, abdominal and internal where they spotted the cyst and uterus thickening. I have also paid to see the top endo specialist here (East of Scotland) and he has ordered the MRI on the NHS which I will have in 3 weeks. He thinks the bowel symptoms are all related. It is worrying and debilitating but I am glad to know I am not alone. Thank you for taking the time to respond. x
I’m so glad you will be seen quickly and by a top specialist. Here in NI we have no top specialists sadly, and lucky if we are seen by anyone with a passion for treating endometriosis. It’s always lovely to see other ladies differing journeys, even if these aren’t always perfect they definitely help others sadly coming up through the system.
This is really similar to my symptoms too. I’m actually 2 weeks post lap - they found deep endo mainly around my rectum. They removed it all and I had my first period with no bowel symptoms - literally heaven! Nothing showed up on any scans for me, the diagnosis only came from the lap.
Hi, can I just ask were they specifically giving you a lap for bowel troubles or were they looking Gynaecologically too? I have similar symptoms to the OP, I’m due to have a lap soon but my Gynae said they won’t be able to deal with any bowel issues as that’s separate?
So my bowel issues were all related to my period so the expectation was that I had endo. In doing the lap they found the endo and based on where it was they were able to remove it. If I’m honest I think normally they might have booked that as a 2nd surgery but I have the worst fear of hospitals/surgery and had been in absolute bits - so I’d given permission and encouraged them to remove anything they found. Which luckily they were able to do - it may have helped bring via private medical insurance and there was no other surgeries following mine that day. It was quite scary though waking up from surgery 4hrs later when it was only due to be 45mins! I was so happy they were able to do it all at once though.
I have the same symptoms, I never had an MRI, I was referred to Gynae. They went straight for a lap and discovered endo on the pouch of Douglas (area by bowel). It’s a really tricky area to remove any endo so they removed what they could but told me to expect a full on surgery in the future. They advised after I’ve had kids though. Good news is my endo isn’t on my ovaries or anything so fertility shouldn’t be affected. Bad news being I get these god awful bowel symptoms all the time. I kept a diary and noticed my triggers, biggest one for me was gluten and meat. Gynae thinks this irritates the bowel then irritates the endo leading to symptoms. I am now a gluten free vegetarian and the difference in my symptoms is remarkable.
I’m so sorry to read about your awful symptoms, the condition is a bit relentless. I’ve got stage 4 endometriosis and bowel involvement. My uterus and vaginal wall are both fused to my bowel. I had a laparoscopy and they weren’t able to remove those bits as it requires a bowel surgeon to be present as i will need either a bowel shave or bowel resection. My main symptoms are pain before passing a bowel movement (a bit like a period pain). And I have to go a lot during my period and also get a sort of mucus and sometimes blood. Im due to have another laparoscopy in 2 weeks to remove an infected tube so that I can have IVF. Will have to have the bowel surgery further down the line as the recovery time they have said is between 3-6 months. I’ve just had an MRI to see how bad the bowel is and they at the moment it’s stable as in my symptoms are manageable. How long do you have to wait for the MRI? If it’s a long time I would suggest going private, and then you can get on the list for surgery. As they can’t proceed until they have seen the MRI. I try and manage but just taking painkillers when I have to, but I’ve been getting awful sciatic pain all down my right thigh and pelvis. I’m not sure if this is linked the bowel endo or something else! It’s all so complex! I really hope you get seen soon. I’ve been eating an anti inflammatory diet - I’ve cut out gluten and cow dairy and avoiding most meat. I’m not sure if it’s helping but hoping it is! Sorry for the long message and best wishes xx
Oh what a shame for you. Thank you for the message it really does help. Fingers crossed everything goes well for you. My MRI is in 3 weeks so not long to wait.
Hi rose I have very similar problems, I’ve had the coil in and was on hormone tablets to stop the bleeding, although it’s finally stopped after 7 months after having my son.
I still have flare ups with more of just a bit of blood in my discharge instead of a normal period. I am also having pain going to the toilet, I’ve had my mri which showed up a few bits of endo at my bowel end, I’m now having to have a laparoscopy in a few weeks, but instead of having the pain around my cycle it’s all the time, and find it very very hard to go toilet, I’m even bleeding sometimes when I do have a bowel movement, I feel constantly full and always feel I need to go but can’t and quite often have like mucus aswell
Aw thank you, hope you find answers and get something sorted, I’ve been diagnosed with endo now nearly 10 years, so it’s just another “bump in the road” but I’ve found it’s been worse after my second child though
Yes they told me it would stop it not pause it, but I done a lot of research myself and found more out then what any specialist could tell me 🙄 So having my 3rd lap and then they said they might even give me a hysterectomy in the future x
Hi poor lady , I had endometriosis stuck to my bowel and bladder, that made me wee alot and some days I did not have bowel movements, and they were all over the place to going to much ect . That was found out when I had my mri scan, they were stitched up when I had my hysterectomy.
I have recently been diagnosed with stage 3 endo and get similar pain around my period and mucus too from my bottom (I thought that was just me!) I also get really bad shooting pains if I need a poo on my period (physically can’t move a muscle they’re that bad) and also get that dragging feeling of needing a wee/poo when I’ve been. My periods have always been 7 days ish and the last 6 ish months before my lap they were only lasting 3 days and most of that was brown, I also had a cyst in my left ovary! Hope this helps in some way and hope you get the answers you need soon x
Hi RoseSorry to hear you’re having a difficult time. I have stage 4 recto vaginal endometriosis. I have always bled when I get my period and thought that was normal so never told a doctor.
I started getting really bad symptoms of endometriosis in 2017/18 and was unable to work most of 2018. I had terrible pain before and during a bowel movement - and not just when I had a period. I got a colonoscopy through the GP to rule out other causes. I had a laparoscopy at my local hospital that showed endometriosis on my bowel. I was referred to the specialist centre after an MRI and my ovaries were stuck together and stuck to the back of my womb, as well as my bowel being stuck to my womb. I also had to get my left tube removed. I had surgery to unstick everything and excise as much of the endometriosis they could without damaging the bowel.
2.5 years on and I am mostly pain free, although as expected it’s gradually getting worse again. I do have more frequent bowel movements than I used to - 3 a day - but I tend not to have the loose stools and generally no pain (beyond the piles I unfortunately have). I am on the mini pill now so don’t have periods, I do get flares up of pain sometimes and it hurts a wee bit before I pass wind (which unfortunately is a lot!)
Hopefully they can get to the bottom of it and make a difference with treatment. If you have stage 4 endometriosis I think the guidelines are that you should be referred direct to a specialist centre. This made all the difference in my treatment
Thank you - isn't it just so rotten, I am so sorry for you. This community is really wonderful and reassuring. I have been so worried and thinking the worst. My poor husband has been amazing but I can't help but feel that it might be something else. Hopefully we can get to the bottom of it soon x
Just to add I have similar symptoms. Like the poster above, I’ve had rectal bleeding when on my period for years and just thought it was normal 😳
I’m waiting for a lap for gynae/ fertility reasons and think I’m going to investigate the bowel stuff seperately as my gynaecologist said he wouldn’t be able to do anything re bowel stuff during my initial lap as that’s not what it’s for.
You need to keep pushing for a lap, save the £250 and see a private consultant if you can as that should hopefully get things moving quicker!
It’s awful it really is and scary too, you have my full sympathies!
Yes, it is horrible isn't it. I've paid to see the top Endo Dr here, he does private and NHS, he is brilliant and it wanting to check on an MRI first, then take it from there. It is just all about reassurance isn't it? Knowing that whatever is going on will be investigated and sorted. He said he could do a lap but wanted to check first. Hope your lap is very soon xx
I had rectovaginal endo with rectum attached to uterus. I had all the symptoms you have mentioned, tailbone pain, shooting rectal pain, diarrhoea, constipation as well bleeding from back passage and sciatic pain. It didn't show on ultrasound but did on Mri. I am am now 7 weeks post op and the difference is amazing. I hope you get the answers you need soon and they can offer a solution for you x
Thanks everyone really intesting info After I had my pelvic u ultrasound I spome to Differnt male GP ( as you can imagine its a nightmare to try and grt any apt with a GP never mind a certian one) he was so unhelpful and said the reuslts showed nothing abnonral so I didnt need a referall to gyne. So as the next month came around the same horrific symptoms again i tried to contact the origianal female GP who 1st suspcted endo but had to fill in a email consult anyway after 2 days I just got a message saying she had refered me to gyne. (I had put on the email I wanted to see an endo speacilist) so hoping thats what she ment of not if I do see gyne I want them to then sort me seeing and endo speacialist. Everything just a waiting game now Iam going to try and contact gyne this week to find out how long I could be waiting but if its going to ne months then I will consider a private MRI as the GP told me that they dont refer for a MRI its a gyne who wpuld do that if felt needed.All very annoying but my main sympoms are all bowle related so I think luckily my gyne parts may be in ok order. Good luck everyone! This is all very hard to deal with and I feel so alone with it noone understands so this page is helpful.
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