what does this mean? - Irritable Bowel Syndrome (IBS) Message Board

Pippin31 · 04-29-2003, 07:37 PM

Hi all,
I have some unusual issues! I have suffered for years with twisting pain on right side. 3 years ago, it hit and never went away. Well, I had a lapro. And the gyn said I had a left cyst, but nothing on the right. She also admitted she had a difficult time getting to the right side. She stated I did not have visible endometriosis, but wanted me to start on Lupron anyway. Before this I had a colonoscopy that diagnosed me with Irritable bowel syndrom. That doc. Put me on meds for it, but never solved the twisting pain. She was the one that said I need a lapro. Because there was something else going on. This is important to the story.
Anyway, I went to a Reproductive endroconologist who felt it was endo. As well and wanted me to start on Lupron. The pain was everyday, but worsened with my periods. Once I started the Lupron, 2 weeks later the twisting pain was gone!! Then it started to come back every other month. He did blood work and found that my hormone levels were not low enough and started giving me 1 ½ shots per month. I did the 6 month treatment. Once the Lupron wore off (about 4 weeks later) the pain came back with a vengeance along with a 72 day period. I was put back on Lupron for almost 2 years. He wanted to do a lapro within that time, but I refused because the first lapro. Caused a back injury being over extended in the stirrups. Now.....I finally agreed to the Lapro because he said he couldn’t continue Lupron therapy because it was already too long. I had the operation Friday. Well......NO ENDOMETRIOSIS!!! He said my pelvis was clean. He did however find what he referred to as an “angry bowl” on the right side. He said it didn’t look right at all, very inflamed and grey. He didn’t have any answers about it because he said he isn’t a bowel man. It’s only been a few days since surgery and I have a follow up with him Friday. My parents said he was absolutely amazed it wasn’t endometriosis because the Lupron helped the twisting pain. I asked him a time or two as well, before surgery, if it could be anything else that Lupron would help and he said NO. My question (finally) is has anyone ever heard of Lurpon helping anything other than endometriosis? Why would it have helped with the pain for the intestine? Why did the pain get worse with my period or right before I would spot (literally I would spot and the very next day the twisting pain would hit, this while on Lupron) Lastly, has anyone ever experienced a similar situation? Any help would be greatly appreciated, for this has been a 3 year battle trying to find a diagnosis! Now that I have one, the Dr. Doesn’t know why the Lupron helped!
Thanks

andyM · 04-30-2003, 10:27 AM

Wow, what a story!

First of all, if I were you I would think about finding yourself a good gastroenterologist and start fresh with someone. Not that I am blaming your Gyno, but in my experience, they dont know as much about the bowels, so when you go to THEM with a complaint, they are going to try and link it to something gynecologically. Endometriosis could have been a normal progression of thought, but a red flag would have signaled to me when she didnt see any visible endometriosis but put you on Lupron anyway. That makes no sense. What she should have done is say, "I have ruled out endometriosis and now I think you should be looked at to see if there may be a gastrointestinal diagnosis." The fact that she left you be on Lupron for 2 years w/o a + endometriosis diagnosis seems very irresponsible. Lupron is very controversial and in several cases is now believed to have caused/ is causing serious medical problems for people who have taken it.

The problem with us as women is, all of our organs are SO close together down there, so it is often times very difficult to figure out 1) where the pain is ACTUALLY coming from, and 2) what is causing it. The problem also with diagnosing women is usually symptoms are part of a larger systemic problem, that can span various symptoms over years and years...and without a GOOD doctor who can put all the pieces together, you may never get the proper diagnosis.

Is the twisting pain your only symptom? Do you have ANY bowel symptoms at all? Ever? Please tell us about any other symptoms you have/ had...even ones that arent "related". Sometimes those symptoms are the ones that help point to what may REALLY be going on.

Now I cannot explain why the Lupron helped you. I am not a doctor, nor do I play one on TV. But the twisting pain could be ovary related (you have a history of cysts you said)...and with lower or raised hormone levels in the blood, it could be a polycystic ovary condition. Again, I dont know your history and I cant read your medical chart, so I am just giving examples.

Here is another concern I have. You said, "I had a colonoscopy that diagnosed me with IBS." I would like you to explain further this to me. You cannot diagnose IBS from a colonoscopy. You can RULE OUT other things from a colonoscopy...but IBS is a diagnosis of exclusion and there is NO test that it shows up on. Did you have this colonoscopy done by a Gastroenterologist? What other tests did he do? Did he do a full blood panel on you? Sed rate, etc? Urinalysis? Stool cultures? any abd Xrays? I am just curious as to what info was given to you that led them to IBS, yet still ended you up having TWO laparoscopic surgeries.

Ok, sorry for all the questions. I want to help as much as I can here. I am still currently in search of my own answers. And I probably dont have alot of faith in medical doctors as much as I used to...and so I get a little over cautious when people tell me stories. It made me uncomfortable that after a NEGATIVE endometriosis diagnosis, they kept you on Lupron for 2 years.

Hope to hear back from you soon.
God Bless
A