Bowel endometriosis

[HelenR1981]

I am wondering if i might have endometriosis on my bowel and if anyone has any experiences? I have never been formally diagnosed but after suffering crippling oains throughout the left side of my pelvis, hip, thigh at regular times each month (and verg heavy periods) my GP suggested the mirena to see if it helped. Since having the mirena in Jan my pain has virtually vanished overnight. But...i started to notice white/clear mucus alongside my bowel movements. I am always constipated. I am booked in for a colonoscopy shortly to find out more but have realised that for last two months i have very noticeable blood with bowel movements as well as vaginal spotting for about two days then my period begins in full flow. It is looking to me like the rectal blood could be hormonal/period related as i dont get it at any other time of the month (only the clear mucus.) anyone have any similar experiences? I know a colonoscopy wont spot endometriosis (only rule out other things.)

[jjeemm]

Hi there

It certainly sounds like you've got endo on the bowel to me. After suffering the same symptoms as you since the end of 2013 I was finally diagnosed via an internal manual examination in 2016 and had a laparoscopy last year which confirmed I have deep infiltrating endo spreading from the vagina/cervix into the bowel sticking everything together. A transvaginal ultrasound picked nothing up in my case, but a colonoscopy revealed an area where the endo tissue is infiltrating the bowel wall. I've also had an MRI which shows exactly where the tissue is on the bowel, so it might be worth asking to have one of those done.

To begin with I was misdiagnosed by my GP and sent to a bowel consultant. He found that I was constipated (as if I didn't already know that!!) and organised for me to have a test which confirmed I have a slow transit colon. He then prescribed laxatives for life and told me not to eat any fibre and didn't bother to find out why I was experiencing terrible pain every period when I had a BM, together with rectal bleeding and mucus and very uncomfortable trapped wind....so, basically clueless.

Anyway, after having done my own research into endo I've finally 'cured' myself of constipation. I'm sure this only exacerbates problems for endo sufferers. For the past 7 months I've completely changed what I eat - I'm now a strict follower of the endo diet - and I take lots of supplements like magnesium citrate which is good for bowel motility.

To get rid of the constipation I would really strongly recommend taking Triphala powder before you go to bed on an empty stomach (2 hours after food). You only need to use a quarter of a teaspoon initially and then if you have to, you can up the amount to one level teaspoon - this is what I have every day. You pour hot water over the powder - I usually have about 1/3 of a cupful and let it cool. It does taste very, very bitter, so I'd advise drinking it alongside with some water or herbal tea to take away the taste. It honestly does the job brilliantly....as a life-long sufferer of constipation I can tell you that finally having a perfectly functioning bowel has totally changed my life and I'm sure it's helping relieve endo symptoms.

If I were you I'd definitely ask for a referral from your GP to an Endo Centre: bsge.org.uk/centre/ asap - don't bother with a general gynae appointment - they usually don't know what they're doing and may hold up your diagnosis.

Best of luck going forward 😊!

[HelenR1981 in reply to jjeemm]

Thanks for your response, this is really helpful. I have already had a pelvic and transvaginal ultrasound which didn’t pick anything up, but I figure that my GP suggested the mirena rather than suggesting a laparoscopy.

I have also been prescribed laxatives and told that I have a slow moving colon. I am anxious about my colonoscopy, but it will be interesting to see if anything is picked up (as I know it isn’t always.) I would suspect that if nothing obvious is seen then they will try and fob me off by saying I have IBS.

I will also look into the endo diet and the supplements as, especially since my most recent period started, I am really constipated.

Thanks again

[Hidden]

I have similar symptoms and I have endometriosis in pod ( which has been removed twice by my fertility specialist and then a general gynaecologist ) and I have endometriosis all over my rectum. My ultrasounds were also clear; mine only showed up on a laparoscopy.

I have chronic pelvic pain on my abdominal lower left side. I also get pre period spotting a few days prior to my period. I also bleed and cramp between cycles. I have many issues with my bowels particularly during my period.

I’m awaiting my third lap this time with an endometriosis specialist and because of some of my serious symptoms looks I’ll be referred to a colorectal surgeon too. Awaiting to hear from my nurse once she’s spoken to my consultant; he will decide what further investigations are needed.

Endometriosis can definitely present with bowel issues even if it’s not on the bowel. All the best with your investigations hope you get answers soon for your pain & symptoms xoxo

[HelenR1981]

Thanks for your reply. I too suspect that mine is also in the Pod because of the severity and location of my pain. Can I ask how did you convince GP to refer you to a specialist as I can’t see mine ever agreeing to it.

[Hidden in reply to HelenR1981]

I didn’t have to persuade my GP as I was lucky enough to be under a good fertility specialist and he did all my referrals.

I’d get a referral to a general gynaecologist; I know ladies here will say endo centres but it’s very difficult to get a referral to one; they will only accept severe endo /recurring endo/endo on other organs; they will deal with the worst cases my endo nurse told me that.My endo consultant reviews the referrals and decides whether it’s a general gynaecologist or him that ladies need to see( probably due to nhs cuts/budgets)

Both my laps were done by gynaes; my fertility specialist and then a general gynae both spotted and treated endo in POD but left endo on my rectum hence referral to endo specialist. Gynaes should be able to recognise endo and treat “simple” endo.

Visit ;

endometriosis-UK.org

They have pain diaries templates you can use to take to your GP.

Keep going back and forth the GP until they do refer you; don’t take no for an answer!

Good luck rooting for you ❤️👍 xoxo

[jjeemm]

Hi again

After I'd had endo confirmed via my lap in September, I printed out some of the relevant pages from the NICE guidelines on endometriosis and took them along with me to an appointment with my GP to 'inform' her about the condition (she admitted herself she knows next to nothing about the disease...) and also to show that she should have referred me to a specialist a long time before. Here are the guidelines: nice.org.uk/guidance/ng73/r...

Try to read up as much as possible about the disease and show that you know more about endo than your GP and you WON'T be fobbed off any more!! The longer you leave it, the worse it can get because if left untreated it can cause damage to a lot of your internal organs and may end up being difficult to treat.

You have to be firm with your GP, I'm afraid, and don't take 'no' for an answer - it's your health at stake after all!

Best of luck 😊