Endo in the bowl - help!

[KerryJ]

Does anyone else suffer with endo in the bowl. I had an emergency Hartmanns procedure last September to remove endo the size of a golf ball from my colon. I had a stoma which I have just had reversed and I have had two periods both of which I have had bleeding from the rectum my doctor thinks I could still have endo as the bleeding mimics my period. I have not seen my gynaecologist yet to discuss endo so I'm still in the dark as to how it is going to affect me. Can anyone offer any advice ......

[Juleyanne]

I wouldn't suggest that the affects/symptoms are textbook for every individual with endo bowel related. Some have endo and adhesions which involve the bowel to some degree and others have greater density in and around the bowel. I had extensive endo in the left and right pelvis, which had entered the stomach (around the belly button) and my fallopian tube stumps (removed due to damage/endo/adhesions) previously, later re stuck to my bowel (tethered with scar tissue/adhesions). One ovary had also stuck to the bowel and I recall the gyne saying that he had removed 'as much as was safe to do so, due to close proximity of the bowel'. There is always a risk of bowel perforation with any surgery involving it. Maybe, because yours was a golf ball size mass rather than stringey adhesions/lesions all over the bowel it could have been less complicated to remove. I am no surgeon, so of course I can only guess from what you have said. All I can say is in my case, it is strongly believed that I still have pinchy pain in my right pelvis deep within my hip and low back pain due to reforming of scar tissue/adhesions. Some are more prone than others to formation of troubling adhesions. I am entering menopause now and oestrogen should in theory start to freefall, meaning it has less capacity to 'feed' new endo growth. So, although not impossible, endo has been found in women of a certain age, it is apparently less likely I will have new endo but

old endo lesions not removed or reformed after last surgery and before menopause could

have caused inflammation which in turn can also worsen adhesions (a sticky fluid that forms to protect inflamed areas which can adhere adjacent organs together and cause another problem. I also have Diverculitis and a small Hiatus Hernia and get a lot of bowel problems which were once thought to be IBS. I also get bladder urgency, right pelvic pain, hip pain, stomach pain and scar tissue pinches when I sit and is worse after food. I get a lot of crippling night pain, pinching pulling and low back pain. So basically, my symptoms related to bowel involvement of endo are very individual to what yours might or might not be. Hope this explains it ok.

[Hidden]

Hello KerryJ,

What you've been through must be very traumatic and painful for you.I have endo on the bowel, (not in the bowel) and certainly not to your extent, so I'm not sure that my advise would be of any benefit. however, I can tell you what it's like for me, and maybe it might make you feel better just to know someone else going through something similar. My endo pains started in 2005 - we all know they feel like the worst period pains in the world, when they attacked (1st day of period) I couldn't walk, I could only lay down for about 5 hours, and then magically it would disappear. Then the dreaded cycle would appear again and again..

Two years later, every time I went to the toilet (not wee!) I would get a short burst of similar pain - made going to the loo so difficult, but gradually, I started improving my diet, lots of fibre, more water etc. and it did really help. Didn't stop the rest of the pain but after my laparotomy I felt so much better. Since then I've been on progesterone which meant I still have periods, but I was more in control of the cycle, making the cycle more predictable was much less stressful, the periods were much less lighter. I also controlled how much progesterone I was taking depending what the day of the months was, i.e. between 5-12 less, 13-25 more progesterone.

I had to come off the medication a while ago because I'm going through IVF. My first cycle, in fact, today, has just failed due to an almighty period, and I've been beginning to notice more pain going to the loo again as well. So I guess I'm still living with it!

I guess what I'm trying to say overall, is that for a time my condition was managed well, but admittedly this was through private care. In order to achieve pregnancy (maybe), I have to literally just put up with it, but you just, survive somehow!

Your endo in the bowl sounds more severe than mine as I dont bleed from the rectum, so I can only offer understanding - but at least I can say that my condition was managed very well. Don't be afraid to seek advice, or a second opinion. My consultant was also an endometriosis specialist (amazing how some obs and gynaes doctors aren't!), so it's worth seeking this specialist opinion out. If a treatment/management plan is set in place you can always go back to a local consultant to manage your plan. I hope that all makes sense?

Elizabeth

[BigAuntieMeg]

I also have endo on the bowel and colon. It flares up during my period and causes rectal bleeding. It also causes me constipation, which is unbelievably painful to pass. The week before, during and sometimes after my period, I get astonishing amounts of wind where I get blocked up and hormonal. It's very embarrassing! My gynae told me that they wanted to do a bowel resection, but it was too risky, so not much has subsided. I'm off for another gynae appointment on the 11th, so we'll see what happens. I've had rectal bleeding since I was 14, and the pain didn't start until a few years later, so it's not all bad. You may well get the bleeding, but not the pain. X

[persil]

hi

My bowel is also stuck down with endo I had a mirena fitted in January cos periods made life hell that went well but I now have spotting sometimes when I open my bowels I also have Diverticular disease and have had Diverticulitis for the last 5 wks i'm off work and spend all morning on the loo with Diarreah i'm on my 4th lot of Antibiotics ist were intravenous but had enough now. I'm allergic to the antibiotic you would usually take so have a different one. Just really had enough and feeling very depressed. I had a colonoscopy last year dec or jan it didn't show any endo in my bowel but I have some around the bowel and its stuck down. so I know how you feel But the pain and diarreah is so debilitating I can't make any plans life feels like its over. sorry just needed to talk to someone.

Lots of luck to you hope you soon feel better

Persil

[Juleyanne in reply to persil]

Sympathy from one endo, adhesion and diverculitis suffer to another. Having endo and adhesions is bad enough, but throw in diverculitis and you get fast forwarded to hell! I live with constant pinching pain right sided and bloating, bowel incontinence and constipation alternating. It hurts when either bowel or bladder is full. Can't bear tight waistbands and embarrassing flatulence, sound familiar? I never know which condition is causing which symptom. I was beginning to think I was the only person in the world with all three, plus a small Hiatus Hernia and receoteole mid high. Anyway, I challenge anyone judging us to spend a day or week with these conditions, it's a living hell.

[Juleyanne]

Oh, and I forgot to mention the flare ups that confine me to bed for days at a time. Once again, I lie there writhing in agony, pressing my abdomen and pelvis thinking 'I wonder what is causing this pain today, endo, adhesions or diverculitis!

[emmieoaks]

Can I ask how old you are? (Sorry to be rude)

I've had two operations in that last 9 months as i had sevre endo and grapefruite size cysts. Which I had removed. Then was told I should be able to conceive (I'm 30) naturally i dont have any children. Doctors said they had removed it all and where really happy! Now I have just found out u have more cysts and now have endo in the bowel!

Been told children are becoming less likely ( which I'm gutted about ) and now may need a colposcopy bag!!

I can sadly say that endo is ruining my life and I so down in the dumps although I'm putting on a brave face!! Xxx