Re: Lost and Miserable on Lupron--My Long Tale
From: Melissa (anonymous@obgyn.net)
Thu Aug 28 20:10:19 2003
Ayesha,
If you get this, please feel free to respond to me at
belisama447@yahoo.com. I am going through some of the same things as
are, ever since my third shot of lupron on June 16th (I've been on it
for 9 months now). I've been put on steroids for the time being so I
can still function, even though they do not take the bone, muscle, and
joint pain completely away. If you do a search for
belisama447@yahoo.com here at the endozone, I'm sure you'll find my post
about severe joint pain. Very similar to yours.
I hope you are getting through this or it has already passed. Since I
found your post on a search, you might never get mine but it was worth a
shot.
--
Melissa
At Thu, 24 Jul 2003, Ayesha wrote:
>
>I am a 26-year old anticipating my second laparotomy in less than a
>year. I switched to a new GYN last fall. I'd been dismissed by my
>previous doctor, and she made me feel two inches tall. My current
>doctor suspected endo right away, but I'd come to him because of seven
>cysts on my ovaries/uterus, so we took it one step at a time. I had
>what was originally to be a laparoscopy in November, 2002. During my
>pre-op visit, we found a large mass on the right ovary. The doctor told
>me we could do a "mini" laparotomy instead, and the incision would be as
>small as possible. However he found that the mass was 9 cm and had to
>do a full laparotomy. I felt so much better, in spite of complications
>(which were not the doctor's fault). I enjoyed three months free of
>endo pain. But by March, I was miserable again. At my doctor's
>suggestion I began Lupron. We tried Lupron because I have seizures and
>they caused so many problems with the last surgery that I was lucky to
>have made it out. I didn't want to risk it again and my doctor wasn't
>keen on the idea either. In any case, I didn't have internet service
>back then and didn't know what I know now. I feel lost. About two
>weeks after the first shot I started suffering unimaginable migraines.
>I've never had one until Lupron. I went to my GYN. He wasn't in, but
>the nurse said Lupron does cause headaches, just not migraines. The
>pain was so bad that I went to the ER. They found nothing except
>elevated blood pressure. I spent three days holed up in my room with
>the drapes closed. I had three more over the course of two months. In
>between, there were other headaches of a lesser but still nasty variety.
>Before the shot I hurt terribly about 80% of the time, whether I was
>sitting, laying, standing, bending, whatever. After the shot, it got
>worse, and the pain was constant for about four weeks. By the time my
>six-week checkup rolled around, the pain was finally about equal to the
>pain I experienced pre-Lupron. But then the pain decreased quickly.
>Now, even though I have pain when I move too much, I can
>sit/walk/stand/lie down-without pain. But, of course, there were the
>*other* side effects-hot flashes so violent that they frequently caused
>vomiting-night sweats-weight gain (15 pounds in the first three
>months)-bone and joint pain-even some chest pain. But the side effects
>began to ease off by the beginning of the third month. I thought that
>the worst must be over, so I bit the bullet and went for the second
>shot. I got my second shot a week ago, and the side effects are worse
>than they were the first time around. I didn't think that was even
>possible. The chest pain is much worse and more frequent, and while my
>endo pain is much improved, I have so much pain in my bones and joints
>that it's hard to walk. I'm going for a colposcopy tomorrow, so I'm
>going to discuss these side effects with my doctor. My doctor is
>understanding but I don't think he believes that the claims about this
>drug are credible. If he did he wouldn't have prescribed it. He's the
>first doctor who didn't treat me as though I had a mental issue so I am
>concerned about confronting him. It isn't that I think he won't try to
>address these problems. I'm afraid that he *will* try, but will still
>think "maybe the other doctors were right after all". I think I'm just
>paranoid after so many bad experiences. I just needed to vent and this
>is my first time here. Please forgive the length of this post. Thank
>you all very much, and may you all find comfort and pain-free days.
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