Is it too late for a second opinion/endometriosis? - Endometriosis Message Board

chenete · 12-30-2005, 12:13 PM

I finished one 6 mth series of lupron injections about 2 months ago and now I am wondering if endo is what I even had? Here is my situation (will try to condense as much as possible

) :
Last few years (3+) I was having problems with my period (heavy bleeding, extreme mood swings, cramping) and this past year it was at the point where I could barely function (because of pain) for 2 out 4 weeks of the month. Moving to a new area did not help with the doctor situation...I had to go through the "trial-by-error" dance with physicians who (I feel) didnt take my concerns seriously. I finally found a doctor who seemed to know what he was talking about and after a pelvic exam and based on my responses to his questions, told me I had endometriosis and gave me the option of taking a low-dose (or none?) estrogen bcp or lupron. Since I was almost desperate and tired of taking birth control pill after bcp, I opted for the lupron. I did have reservations about it because of the experience I had with depo provera (taken 10 years ago) but at that point I just didnt want the pain. It worked-no pain, no periods, but extreme weight gain (extreme to me because I had just lost 45 pounds and as of now I have gained almost 20 back), moodswings, hot flashes, fatigue, (I could go on and on) I am scheduled for my followup in the next couple weeks (and have not had a period yet) but after researching about endo, I realize that I dont know what stage endo it is; I havent had a laporascopy done, pretty much was diagnosed after the pelvic exam. I am wondering if I should see someone else (thinking of the university hospital nearby) or just continue with this doctor?
Sorry so long

tina76 · 12-30-2005, 01:57 PM

Your symptoms definitely do sound like endo symptoms...100%... so going by symptoms alone I would definitely guess that you have endo. Plus, if you got relief being on the LUpron that is another clue that it was endo. However, you are right to think that there is no way for your doc to have known FOR SURE that it was endo without doing a laproscopic surgery. Personally, I am surprised that they prescribed the Lupron w/out knowing for sure since the drug has been known to cause mega side effects in some women (myself included, I couldn't take it!)... but every doc has different ideas on how to treat it. Personally, I have chronic endo (pain every day not just at cycle time) and am on depo and pain meds. I will most likely have a hysterectomy in 5 years.

How is your pain now? Are you scheduled to start on the Lupron again??? When you quit the Lupron did your pain come back, etc...?

chenete · 12-30-2005, 06:59 PM

I finished the lupron "cycle" about 2 months ago and I have yet to have a period. I still have the mood swings, fatigue, hot flashes, headaches, insomnia (I guess I experienced most of the side effects

) and now I do feel some discomfort at times (similar to menstrual cramps). The discomfort is no way near the pain I felt before but I am getting nervous that my body is gearing up for a major (pain) production... In all fairness to my doctor, he did seem to know his stuff and even my husband was impressed (I had him come with me to dr visit just in case I forgot to ask something) I guess with hearing about so many others having lapro and knowing stages, etc. I am getting anxious. When he prescribed the lupron he told me that I could only be on it for 6 months then after that it would be wait and see...My impression was that he would not prescribe the therapy two times. I do see him in 2 weeks so I think I might try once more-I guess I cant make up my mind-I was upset that doctors seem to be ignoring my concerns and here is one that is probably on top of it and I am still a worrywart LOL! Even if he wanted to do the lupron twice, I would have to decline-the side effects at times seemed to be as bad as the pain

Kari7171 · 12-30-2005, 10:02 PM

I had a laparoscopy a few years ago and found out I have endo. The doctor wanted to give me the Lupron shot. I had read quite a bit about it and was terrified to try it so I said no. When they were in there they also burned away the endo but it can come back which is very common. I was pain free for 6 months before it came back. I then went on birth control pill Yasmin on a continuous basis and then later Microgestin bcp. They both worked great after about 6 months. I would let myself have a period every 3 months so just twice in that 6 months. It spotted a lot that first 6 months. I would say it really took about a year for the pill to completely start controlling my period so now I only let myself have a period every 4 months. I even went for 6 months one time when I had back surgery and could not deal with having a period. So maybe trying the birth control pill on a continuous basis. Just give it some time to work.