ENDO Messages for October, 2005: Re: Adjusting to Lupron

Re: Adjusting to Lupron

From: anonymous@obgyn.net
Wed Oct 5 08:40:54 2005

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Hi,

I'm going through something similar to you. When I was 20, I went to the doctor for pain w/intercourse. They found a cyst on my left ovary that was 4.7cm in diameter. Well I went to a new doctor that was supposed to help. I had surgery in January of 2003 and the cyst was drained; he also removed scar tissue that was 1 1/2inches thick that was supposedly building a wall around my ovary. I was told that I should be fine. The cyst wasn't cancerous, I didn't have Endo, everything was great. They were going to control my cysts with birth control or Lupron. Well I didn't know much about Lupron and said no to that. I figured why should I take that if you are only controlling cysts??? Well over the course of the past two years almost three, nothing got better. I was constantly at the OB/GYN for pain. I continued to have ruptured cysts and nothing was solved. My periods were extremely painful, tired, cramps, etc... So the doctor did another laproscopic. This time two years later he diagnosed Endo. Which I must of had two years ago and the scar tissue removed was it. Endo does not have to start on the uterus, it can start anywhere. It can start in or on any of your organs and can even get into your lungs. The doctor made a mistake, so I switched. Now I have a great doctor who has been informed of everything. The first visit I had, I took a calendar with me where I documented all my pain and problems.

My new doc is now treating me with Lupron 3.75. I get a shot once every month for the next 6-9 months. I'm not experiencing the same side effects as you. I experience, hot flashes, nausea, irritability, and some depression. I've only had two shots now, but I think overall my symptoms from Endometriosis have diminished a bit. When you start taking Lupron you should have a period for maybe the first 1-3 months and occasional spotting. It's normal from what the doc says and what I've researched. My first period on the shot wasn't as awful as it normally would have been. I spotted for a good week after my period, but am now back to normal. I can see myself getting depressed a bit more and a lot more irritable. I can say that my back pain has increased significantly and is more constant and this could be related to the drug (haven't got into the doc yet), because when your on lupron your bone density can decrease.

My aunt has endometriosis too. She was on the 11.75 dose once every 3 months, same as my mother who had uterine fibroid tumors. My mother and my aunt bled the entire time they were on the shot. They said it was the worst drug they've experienced. So naturally I was afraid to get it myself. Fortunately I've had none of those effects. I'm guessing there could be something about the dosage??? Like I said, I'm on the 3.75 dose once a month for 6-9 months and I'm not having nearly as bad of an experience as many other women. Maybe that is something you can talk to your doctor about.

At Wed, 11 Aug 2004, Ann wrote: >
>I had a 7 month course of Lupron and I received very little relief of
>pain during that time. As I recall, I felt like there was some
>improvement during the first few months, but by month 7 the pain was
>back to the pre-Lupron level and I began to develope new problems --
>limb numbness, incoordination, hot flashes of course. I think that
>within a month after stopping the Lupron, I was finally moved up to
>oxycontin as my pain reliever, and was on the operating room table 4
>months later for a hyster because the pain was so bad. So, I'm just
>over a year out from my hyster, started hormone replacement in February
>of this year, and am still suffering some LRQ pain (not nearly as bad as
>before the hyster). But, the worst part is my neurological symptoms
>have gotten no better -- in fact, they've gotten worse. I'm now in the
>process of trying to get a diagnosis but am quickly beginning to think
>the Lupron caused irreversible damage. Have you had any limb numbness,
>unexplained falls, headaches that last for weeks, vertigo so bad you
>can't get out of bed?
>
>At Wed, 11 Aug 2004, ann wrote:
>>
>>I have a question for all those who have tried Lupron. When I had my
>>first 3 month injection, they said that the pain could get worse for 2
>>weeks before it got better. They were right and it was the first 3
>>weeks that were worse, with the 3rd being the worst. Had to go back to
>>percocet.
>>
>>After that I felt great.
>>
>>Just had my second shot a week and a half ago and the same thing is
>>happening. More percocet, only thing that works for me, and I'm feeling
>>great but am concerned about taking a narcotic for any length of time.
>>All I need next is to become dependant on a drug!!
>>
>> Anyone else have this happen?
>>
>>Ann

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