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Old 03-31-2009, 11:25 PM #1
MJA - TOS MJA - TOS is offline
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Default Endometriosis - Lupron

I have had right abdominal pain for months (this is massive pain that vicoden will not touch). Have had every test in the book including two colonoscopies in the past six months. Everything is coming out normal. My dr is going to give me injections of Lupron, I guess to prove whether it is endo or not. No one has offered a laporoscopy unfortunately. According to my family dr, if the Lupron doesn't work, then I need to go back to the pain spec for more blocks. She says that the "trunk" has it's own nerve system and that my brain may have rewired itself to new pain paths.

I also have rectal bleeding during my periods which they can't explain through the colonoscopies.

My background is TOS and 5 bulging/herniated discs in my lumber.

I've been reading up on Lupron. I'm 47 so I don't mind early menopause.

Have any of you experienced Lupron?
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Old 04-03-2009, 03:44 PM #2
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Hi....

I have no experience with Lupron, but I do have experience with pelvic/abdomninal pain.

If you have not already done so, please ask to be referred to and seen by Gyn dr. They are the ones that have the best training to deal with endometriosis and other women's issue (vs just a family dr).

(btw--I have never heard of Lupron being being able to confirm a diagnosis of endometriosis)

About 18 mo ago I started having pelvic/abdominal pain, that for the longest time was basically blown off by my internal med drs. When I was FINALLY referred to a Gyn, she was able to figure out what was really happening; and after doing a few simple tests realized my "small" ovarian cysts that "shouldn't be causing pain" (according to my internal med dr) had grown very large AND endometriosis was suspected. A few months later my Gyn did Laporascopy and some other procedures, and the endometriosis was confirmed. I still battle with Endometriosis-- but at least now I know "for sure" what is causing the pain.

More recently, I was also diagnosed with a condition known as Interstitial Cystitis--- by a GYN, after many years of my regular doctors--- while very well intention, thought the symptoms were from a UTI or stress, or overactive bladder (Overactive bladder and IC can have some similiar symptoms) . My Gyn put me on a med that treats IC vs just overactive bladder and my IC issues have improved a lot.

My point is, you need to see the right specialists, so you can accurate diagnosis. Sometimes symptoms overlap and sometimes things presently differently than norm (for instance with my ovarian cysts they often press on my nerves and in addition to pain, i also have tingling --which can confuse people). Once you get an accurate diagnosis, then you can get the right treatments and that can make all the difference.

I know its tough and I can really empathize with you--- hang in there !

L2L
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Old 04-03-2009, 09:06 PM #3
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In the hope of maybe getting more replies, I have copied your post over to the Women's health Forum.

Here's a direct link for you to check it out :
http://neurotalk.psychcentral.com/thread83209.html
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Old 04-04-2009, 10:55 AM #4
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I have taken Lupron.

But that was AFTER the surgery to remove the endometriosis. I think it is very very strange that your doctor is using it to diagnose you.
You should see a GYN-Oncologist as they treat severe cases of endometriosis. It may be that you need a hysterectomy at this point. I had to have one. Your endo may have spread at this point to other organs and they have to open you up.

I had one one laproscopic surgery where they lasered off a lot of it but it grew back and then I had to just have it all out and it just went everywhere. I had to be off female hormones for a while until he felt it was dead. I had the lupron after my first surgery and I was in my 30's. I did not after my hyst. You need to consult an expert.
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Old 04-13-2009, 06:45 AM #5
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Hello, I am not sure about Lupron being used as a diagnostic tool either. However I do know that it was one options I had after my first laporoscopy, but it was not used prior either.

I ended up having a specialist myself and I was very lucky in that area. (I wish i had a physician that was as knowledgeable about other areas now.) What my obgyn (high risk specialist whom also specialized in oncology for women) did was a laporoscopy on me to conferm that I had endometriosis.

If none of your physicians have suggested it, I would ask them directly. One thing I have always done is ask a LOT of questions.

A laporoscopy is not that bad really. I have had several of them befor my hysterectomy. The worse thing I think from the laporoscopy was the feeling of being bloated afterwords... it was like having really really bad gas pains and being constipated at the same time.

But the surgery itself was not bad for me. Dr.Burns (my obgyn specialist) just made a few small iincision in my abdomen. One above my belly button, one above my pelvis and two in between. The actual incisions were only about 1" long. That is the only real way I can think of that they could really diagnosis it. Other then the reading the symptoms. One of them is the pain and bleeding tends to get worse around the the time of your period.

For me though, it was too spread out that I ended up having to have a complete hysterectomy after several surgeries. However, once that happened, it was wonderful! That was one pain that was gone for ever, as wel as a few other annoyances. If you have kids already or do not plan on having any, it might be an option if nothing else is or will work in the future. But again, talk to your doctors and see what they have to say.

I am sure what I said may not help but hopefully there was something in there that might give an idea.

Good luck and I really hope you end up feeling better.

Peace,
Sarr
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Old 04-14-2009, 12:04 AM #6
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Default Thanks for advice

It'll be a week on Tues that I got the shot. Vomiting and diarrhea are on the uprise again. Pain is still horrendous. Don't notice any other changes yet. Am trying to stay positive. Most think they saw difference in two to three weeks.
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