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Post by Debi on Jul 21, 2006 11:50:36 GMT -5
I am so glad to have found this site. I am hoping that someone that has been through this can help me. I am going on my 3rd year of trying to figure out my pelvic pain. It had been a mild to minor cramping pain mostly on left but sometimes on right side. On and off -- not something terrible but something that was bothersome. First, let me say I had my tubes tied July 3 years ago. Although I had had mild pain prior to that time, the real problems started roughly 4 months after the tubal ligation (not sure if there is a connection) My problems have ranged from tailbone pain, lower left pelvic pain, lower back pain and sometimes right pelvic pain. Because my OB had just performed the tubal, she said if there were signs of Endo, she would have seen them while she was in there -- so she did not see a need for a laperoscopy. She explaind how endo can be internal and may not have been visual. We tried birth control pills, which did not seem to work. Then I did 8 months of Lupron shot which severly minimized my pain but did not completely make it go away. She now did not think it was Endo because she felt it should have completely made the pain go away. She sent me for colonoscopy... long story short, the dr she refrred me to did not want to do colonoscopy but wanted me to do physical therapy. I got very frustrated and did nothing for 2 years. June 3 I got the worst lower back pain along with pelvic painn I have ever had. My period started 1 hour later. The extreme pain lasted until the last day of my period. It eased up but did not go completely away so I saw my family dr. Finally I was directed to have colonoscopy. Just had this morning and it was negative. This week due to colon prep, I was unable to take anti inflamatories that I had been taking. The pain I had was UNBELIEVABLE. I felt like I had a pinched nerve in my back. I had to roll out of bed and crawl to the bathroom. When I moved my bowels, pain eased but did not completely disappear. I was Referred back to OB saying must be Endo related since colon was clear. I had seen my OB this week prior to colonoscopy just to let her know what was going on and we decided that if colonoscopy was negative, I would move forward with hysteroctomy. Now, after speaking to many people and doing research, I am hesitant with hysteroctomy. I called my dr and she agreed to do another round of Lupron first. Sorry this has been so long...... I guess my question now is -- is it possible the Endo is on the outside of my colon or back and IF the Endo is on my colon, is the Lupron going to help or will the lupron only help if the Endo is on the female organs ? Is the lupron actually going to shrink all signs on Endo or should this be looked closer at and will it need to be surgically removed if it is on colon or back ?
THANKS FOR LISTENING !!! Debi
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Post by erzulie on Jul 21, 2006 17:54:37 GMT -5
Hi, welcome to the forum! It's possible for endometriosis to be pretty much anywhere. I think Lupron has the same effect no matter where the endometriosis is, but it's only a band-aid treatment anyway. It will shrink the implants but then they grow back again when you stop it. It would be best to surgically remove it, but if your current gynecologist didn't see it before it might be best to see an endometriosis specialist if you can.
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Post by ouchy on Jul 21, 2006 23:34:08 GMT -5
Hi, Debi! Welcome to the forum! I guess I have similar pain to you, and I was sent for a sigmoid colonoscopy (doesn't go as far up as colonoscopy). My sigmoid colonoscopy was negative, and I was sent back to the gynecologist. I did have endo on both my sigmoid colon and my appendix and cecum and all that intestinal area surrounding those parts. I agree with erzulie. I think you should find someone more versed in endometriosis. It never hurts to at least have a second opinion, and a gynecologist who specializes in endometriosis might be a good bet.
EVERYONE with whom I have spoken/chatted/by whom I have read posts who has been on Lupron has said that the pain and endo comes right back after stopping the shots. Erzulie's band-aid treatment analogy is right on target.
Anyway, welcome to the forum! ~Ouchy
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meka
Full Member
Posts: 164
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Post by meka on Jul 23, 2006 22:32:42 GMT -5
Hi, Debi.
Is it possible that, while performing the tubal ligation, the doctor did not find any endo because she wasn't looking for it? I don't know anything about the tube-tying procedure, but I wonder if the doctor said to herself during surgery, "Hmm, let me go ahead and do a thourough search for endo while I'm in here." If not, maybe you could get a laparoscopy with actual intent to find and remove endo. It just seems that hysterectomy is such a drastic thing to do before even trying a laparoscopy.
Plus, by getting a hysterectomy, how does the doctor say that is supposed to affect your colon and back problems?
It's incredible how uninformed doctors can be--the days of hysterectomy-solves-it-all are long gone!
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Post by erzulie on Jul 24, 2006 10:37:32 GMT -5
Good point meka. While I have heard of people being "accidentally" diagnosed with endometriosis while having surgery for other things, I have also heard of people who have endometriosis that is not discovered until they have surgery specifically for that, even though they've had abdominal surgery before. If you've ever looked at pictures of endometriosis, it's really often not that easy to see. For all the pain those globs of tissue cause, they can be very tiny. Sometimes they are clear--making them even harder to spot--and sometimes they are even microscopic. Also, I would assume she did your tubaligation via laparoscopy. That means she probably didn't really look at anything other than your tubes, and maybe it wasn't on your tubes! That doesn't mean it couldn't be in other places!
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