Endo and or Adhesions - the Bowel and HRT

Hi Ladies - I have been reading the other posts here and thought I would start a new topic relating to this very delicate subject.

Just lately I have been having lots of hmmm "issues" with the bowel, lower abdominal cramping, a burning feeling and old "endo pain. I know full well that my surgeon left some endo behind as it was attached to the bowel and she didnt want to "disturb it".....need I say anymore.

I have been on and off HRT - alot of my bowel issues seem to be worse when I am not taking any progesterone - and estrogen alone isnt that great. I am currently waiting on a Doctors appt to see where to from here.

My question to all you other ladies - is do you get bowel issues, lower abdominal pain (and what type- burning/cramping) from Endo? Since surgery did it get better/worse and have adhesions made life anymore difficult - and has HRT (estrogen or progesterone) had any impact on the bowel (helped or made things worse)?

Thank you

((shepherds4))

I had endometriosis on my bowel walls that my GYN did not remove because he felt it was too risky to do so. From the time of my hysterectomy until a laparoscopy seven years later, I dealt with all kinds of bowel issues and pelvic pain that gradually increased over time. I had/have both of my ovaries so I did have plenty of estrogen to fuel the endo though I also was producing progesterone for a bit of a balance.

I also have IBS the theory was that the endo on the bowel could be irritated by the fact that the bowel was just flat out cranky. Or if the endo was flared, the bowel was cranky and cause more IBS issues. A painful cycle whichever one started it!

When I had that last lap though, we also found an adhesion from that area to the vaginal cuff! That ended up being probably what caused the most pain.

Depending on the location of any endometriosis or adhesions, the pain could be different for each of us. I have dealt with burning, pulling, stabbing, ripping, cramping, etc. etc. etc.! Likely the cramping was the actual bowel for me. Some of the burning for me ended up being interstitial cystitis. I have also had burning pain elsewhere that was indicative of nerve issues.

Are you keeping a symptom diary so you can share it at your next doctor's appointment? I hope that appointment goes well for you! Keep us posted!

Weiser

Thank you for your reply...that pretty much sums things up.

My journal has pretty much been built around the emotional side of things - not so much the ongoing phsyical things occuring...but with the increasing pain and issues now appearing...I am taking more notice...from what I have figured out so far...lack of progesterone seems to make it worse.

Can I ask you - was it your normal GP - were you referred to a specialist who figured things out for you? Seven years from your surgery until the lap is a long time to have all that going on!!

And again...thank you for your reply..it was very helpful.

While my GP was on board, it was actually my GYN who sent me on my way. I didn't have to actually have a referral, but he would have written it if I had needed it. And he was the one who, again, said, "I can't help you!"

See, I knew going into my hysterectomy that the endo was going to be left on my bowel walls. What I didn't know was that I would have surgical complications and my health would go downhill from there! Because of those surgical complications, my GYN refused to every do surgery on me again unless we knew that the pros would far outweigh the cons. And if surgery was for endo, well, he had already treated me the best he could within his range of skill.

Starting in about 2005, I knew I was headed back to surgery at some point. But I had other health issues that were more extreme so I had to take care of them first. But I started searching to determine which endo specialist I was going to go see. I had made my decision by the summer of 2007 when additional health issues (this time bladder) sent me to my GP and GYN and then off to a urologist. He felt I could have endo in my bladder but his first test (a CT scan) turned up a complex cyst so he sent me back to the GYN. The GYN couldn't do anything for the cyst--he wouldn't do surgery because of the previous surgical experience--and I couldn't use any hormones because my migraines were so out of control. So, we decided it was time to see the endo specialist, especially if we were also looking at endo in my bladder anyway!

And it goes on from there! It has been a wild ride! Which is why I am such an advocate of seeing the specialist sooner, rather than later!

Oh, I can see your pain and symptoms increasing with less or no progesterone. Progesterone can combat any estrogen you use which is one reason ladies with an endo history can be given both progesterone and estrogen for their HRT.

I have multiple small benign strictures with endometrial implants along the course of the small bowel. During my hyst the surgeon declined to do a resection of my bowel b/c it had not been discussed. I can tell you before my hyst I was in dire pain and could not sit anymore. For 2 mnths straight sitting was excrutating. I was going to the bathroom alot. I also have IBS and have a hemrroid. I have to wait till I really got to go b/f going. After my hyst, I haven't had anymore pain. They also repaired a lesion in my rectum - that may possibly have been causing me alot of pain. My gyn declined to give me HRT until about a month after the surgery. I am now on the patch. As far as how pain felt- mine was a mix of stabbing, cramping, burning, and just aching. But mine was a mixture of all those feelings at one time. And my vaginal area was the part that was burning and swelling. And actually my behind area when sitting felt like it was being poked and that caused me to feel like I had to pee or do a bowel movement.

Weiser...that is horrible..I can fully understand your comment about seeing the appropriate specialist. Have they got it sorted for you and are you on top of things now?

Lilyrose - good to hear you have not had any pain since your hyst.. it sounds like you had a terrible time leading up to it!!!

I noticed both of you saying that you have/had Irritable Bowel...but is it really IB?

Maybe Im confused (blame it on the brain fog...lol) but I am trying to make sense out of the difference between endo/ bowel pain and IB - how do Dr's distinguish the difference....or is it because of what you have been suffering with (the implants on the bowel) and because that irritates the bowel...they call it IB anyway???

	Quote:
Originally Posted by shepherds4 Weiser...Have they got it sorted for you and are you on top of things now?

Yep! My specialist was able to clean me up and eliminate most of my pelvic pain! Now and then I have some twinges, but nothing major! I do deal with some IC pain but it is even more manageable now!

	Quote:
Originally Posted by shepherds4 Maybe Im confused (blame it on the brain fog...lol) but I am trying to make sense out of the difference between endo/ bowel pain and IB - how do Dr's distinguish the difference....or is it because of what you have been suffering with (the implants on the bowel) and because that irritates the bowel...they call it IB anyway???

Well, it gets difficult! One clue for me was that one day while I was in my GYN's office with the pain, he did an exam and said that he could feel the gas bubbles trapped in there! So off to the gastro I went! We did a bit of process of elimination and really there was guess work (howbeit educated guess work) involved. For instance, when I would eat certain foods, I would be in the bathroom within minutes. That was determine to definitely be the IBS!

The interesting thing for me was that I didn't have IBS issues prior to my hysterectomy. I had diarrhea with my periods, typical of endo, but that was about it! The symptoms have GREATLY improved since my last lap with the specialist but I still have some issues. Because IBS is Irritable Bowel Syndrome, it makes since that the symptoms can occur when the bowel is irritated. Endo and adhesions involving the bowel can definitely irritate it! Remove those problems and my bowel wasn't so irritated!

Hope this helps!!

	Quote:
Originally Posted by Weiser One clue for me was that one day while I was in my GYN's office with the pain, he did an exam and said that he could feel the gas bubbles trapped in there! For instance, when I would eat certain foods, I would be in the bathroom within minutes. That was determine to definitely be the IBS! The interesting thing for me was that I didn't have IBS issues prior to my hysterectomy.

Now that's interesting about the gas bubbles b/c I had a lot of that prior to my surgery. I was churning all the time. So much so that my nieces were making fun of me whenever I was around. I just said it was my stomach b/c it was partly that too. So would that be related to the endo and bowel issues.

When you talk about the certain foods - that's how I am with my IBS. I was diagnosised with that in the earlier 2000s. When I had a colonoscopy they didn't mention anything about endo on my bowels. Just eat more fiber.

So I am not sure when I got endo all over the place. Actually, I just got my surgeons report from my Lap 98 and it did mention something about endo possibly on my bowels and bladder.

So I wonder what happens now?

Weiser.....Good to hear things are alot better for you now? Are you still unable to take any HRT? And also the pain you experienced over that that time...was it with you all the time, increasing in severity or come and go?

Weiser and Lilyrose - it makes sense what you say about IBS..I didnt have any issues with it either before Hyst...I used to get a bit clogged up just before my period and then diarrhea once it arrived but that was about it...the rest of the time things were fairly normal. As the endo progressed and at that time of the month...was when the real pain kicked in with the bowels....cramping etc...but it would only last as long as that part of the cycle took to get through. Now I dont have any ovaries (hyst and 1 ovary removed 2004 and last ovary removed last year)...nothing is cyclical anymore (hope that makes sense).

Now Im finding the bowel is issues are increasing...lots of cramping, burning, stabbing..plus burning across my lower back - pretty much on and off all the time - as you say Lilyrose - its pretty much all at once and more uncomfortable while Im sitting than standing. Anyway Dr's appt this week (with my normal GP) so will see what he's got to say.

Also Lilyrose - how long since your surgery and are you using any progesterone or just the patch?

	Quote:
Originally Posted by shepherds4 Now Im finding the bowel is issues are increasing...lots of cramping, burning, stabbing..plus burning across my lower back - pretty much on and off all the time - as you say Lilyrose - its pretty much all at once and more uncomfortable while Im sitting than standing. Anyway Dr's appt this week (with my normal GP) so will see what he's got to say. Also Lilyrose - how long since your surgery and are you using any progesterone or just the patch?

I had my hyst on June 26, 2009. And, I am only on the patch. I think I was told that the progesterone wouldn't be good for me. I go Friday for a ck up on how the patch is working. I'll ask about the progestrone.

Your symptoms sound like mine. I worked my part time job last night and realized I didn't have any pain this time in my lower back. This was my first time back to this job in 8wks. I would get terrible pain in my lower back if I was standing in one place for more than 5 mins and the pain sometimes progressed the longer I stood. So by 5/6hrs I would be almost hunched over from the pain. I believe after last night that it definitely was due to all that I was suffering. The thing with me though is I still had my appendix b/f my operation. It was severely diseased to the point they didn't recognize it. Actually they didn't recognize most of my organs. Anyways, I had a lot of pain in my right side across from my belly button too. It radiated from my side across to my belly button downward. I believe that was the appendix part. So I don't know if it caused some of the back pain? Possibly not if you are experiencing similar symptoms. I hope your GP (what is that?) helps. My pain just got increasingly worse and was consistent for 2 mnths straight. It was awful.