Rectal pain and Endo

Question

I was diagnosed with Endometrioisis back in April of 2010 and had a laparoscopic surgery performed. I have now been exeriencing rectal pain.This was present before the surgery but seems to have gotten worse since the surgery. I think I may have endometrial tissue growing in my rectum that is causing the pain. Has anyone else experienced rectal-related pain with their Endo? I am frustrated and afraid and don't know what to do. Please any advice?? What could be causing this pain?

crystaldawn88 · Answer

I am in the same vote,  I am a victim to endo since 2002.  I also have a history of developing ovarian cyst.  I have had 2 surgeries and the only cure is pregnancy or a complete hysterectomy.  I already have all the kids I want so I think getting pregnant just to cure the endo is not right.  It is so hard to get Doctors to understand where we are coming from.  Endo is a bad disease that can be crippling at times and I am fighting the pains too.  My doctor only suggest me to take 4 iboprofens at a time every 6 hours, but it doesn't work.  i know your pains and I can sympathize.  The problems I have is bleeding rectally 2 weeks prior to my period and sometimes during.  I have had a colonscopy and it came out good as well.  There has to be help out there somewhere for us.  I am scheduled for a vaginal ultrasound to see if they can find anything.  One recommendation the doctor had was to put me on the Dopa Vera Shot.  Well that is not going to work, because the side effects are horrific.  So I am not going to do the shot.  Why would I choose the side effects along with the Endo.  This is a community we have to stick together.

Natyque · Answer

BTW, I just had a Flex Sig done on Wed to see if I had Endo in the Colon because of the level of pain I am in. Thank God I am clear in that area!! However, I am so swollen in the pelvic region that the procedure has aggrevated my pain & am pretty much bed written since Wed. :(

Natyque · Answer

Hi, I won't post my issue because I've done it on other several posts & it's long.  Long story short I am 34 with severe stage endo which was diagnosed in 97.  I do have children thank God!  However,  I am calling to schedule for a hysterectomy... during the past few months I came across a doctor in CA who specializes in Endo.  Most of his patients are severe stage who have had partial hysterectomies & endo has come back or who are like me contemplating on having a hysterectomy.  Unfortunately, he doesn't accept my insurance & I could not fly to see him, but I did find out from his sight & info on Endo that there are different types of ENDO!!! Yes people, which many doctors unless they are specialized in Endometriosis (most are not) are not aware of!  There is clear, white, black, pink Endometriosis.  Some doctors who are not specialized in this are not aware of & if you have clear endometriosis it my not necesarily be visiable to the naked eye.  It's really scary!  We all need to do our resesarch before deciding to do any type of treatment & surgery.  If we are not content with what we are being told keep looking for a caring & understanding doctor. We are not CRAZY the pain is very real!!!  I so which I can go to CA & see this guy!  Most definitely the only way to be certain is to have the area biopsied & get it diagnosed that way!  Like I was told if you have a few visible black lesions, there are many more that are not visible & the none visible can be more painful then those that are!  How crazy is that!!!??  Good luck to all of us!!!  God Bless

achilles2 · Answer

Have you tried a gluten free diet you could also have Celiacs. Approx 80% of women with endo also have gluten intolerance. I would also recommend getting your thyroid checked. Plus when they said "no endo" did they just go by site or was a biopsy performed?

achilles2

endolife · Answer

Hi. i have hadhad endo for 14 years. i had my first surgery at age 16 and after that surgery my pain actually significantly increased! Of course, my gyno didnt accept my reports of worsened pain. i have always had a bit an irritable bowel and random stabbing pains in rectum. my 2nd surgery was done late last year after experiencing intense stabbing pain over my ovary. My dr said no endo was found on my bowel. i have in recent months begun having bouts of severe rectal pain and bleeding, painful bowel movements and day to day less severe rectal pain. i had a colonoscopy last week but only couple small hemoroids found, i'm not sure this justifys the pain i experience. i also suffer migraine which i have heard can be associated with endo too. but, all in all i am ok and have a great team of Drs which i trust, its costly but after years of Drs not understanding or listening its worth it! I have resigned to the fact that despite what the Drs say surgery does not necessarily releive our pain, its trial and error finding the right Drs and combinations of treatment. Dont give up. best of luck.

Des_a_rae · Answer

Hi Cheris and Sepears, 
thanks so much for replying.  It really is such an awful thing. I mean we have to deal with enough pain and discomfort as it is.  I too had a colonoscopy on Sept. 1st this yr and they found nothing either.  I had this JUST IN CASE. I'm just wondering why specifically around this time is when I can't use the bathroom AT ALL because of the pain?? What's causing it and why? Surely there's a reason. :(   I only bled once during a bowel movement yrs ago and that's when the dr. suggested endo. Little did I know that was going to turn into all this pain and suffering.  I'm sorry we all have to go through this but hopefully ONE day someone will find out why and we can get this fixed.   Thanks again! :)   It's comforting to know we're not alone.

sepears1 · Answer

hi there. i have been diagnosed with endo since 2006 and sorry to say, but painful bowel movements comes with the disease. When im on my period i cant even have a bowel movement because it hurts too much. and in between periods i still have lots of discomfort and some pain, but def not as bad as some of you (so sorry for you guys!). i have often wondered if i have tissue in my rectum as well, but i have done extensive research/presentations on endo, and painful bowel movemnts during periods are normal. but if you're having very painful BM not during your period, i would suggest to talk to your doc about it and keep your ground. dont let them talk you out of something you want done. its their job.

cheris231980 · Answer

Dear girls,

I have been diagnosed with endometriosis last July, but few months before I suddenly started to have acute pains in my rectum, but besides that I bleed from my colon every month during my periods. This feels every time like to pass through labors....As soon as I got those horrifying symptoms I went to a doctor, and afterwards I have been through a lot of medical procedures: had colonoscopy (they found nothing), laporoscopy (doctor retrieved my fully swollen left falopian tube, but colon looked OK from outside too - no endometriosis on it!) and hysteroscopy (yesterday) they incised my septum. Nevertheless, pains got back to me after the laparoscopy have been performed....same pain! I have left only to wonder what's wrong with me.... I really wish to all of us three well on finding the cure, we don't deserve such pain in life.....

Des_a_rae · Answer

Hi I just want to say that I'm right there with you!!  Oh gosh its' awful. I get them so bad that when I TRY to have a bowel movement I have to stop completely because of the pain in my ovaries, lower stomach, lower back AND my rectum. By this time I'm crying and unable to sit down from the pain. I have to go lay down. Even then I'm  still hurting so bad.  I honestly question the dr. that did my lap and hyster surgery. I completely believe he missed it!  The thing with me though is I have infertilily  AND I was having god awful periods. Bleeding was awful and my pains were the worst. SO they decided to do the surgery for endo. I was sent 2 hrs away to an RE because they told me he would be more "precise" and wouldn't cause as much scar tissue because his main goal would be preserving my fertility. Well that's all good but I don't want him being "so careful" that he missed it!!   I had the pain before and I had my surgery June 25th this yr but the pain is back again and as bad as it was before.  HE wants to send me to a pelvic specialists. Can they find endo?  
Anyways, You're not alone and I'm SO sorry you're having to deal with it as well. I thought I was crazy and honestly felt alone.  I'm thinking of going back to my original gyno who I TRUST and just telling her what's going on.  Then TRY to talk her into doing a 2nd lap. I even had a colonoscopy on Sept. 1st but they found nothing. Everything was fine there!   Any idea on your next step?  There's no sense in us hurting like this. It's not normal!  Good Luck Hun!!