afraid to take depo-lepron

[springyes]

Hi I don't know if I have endometriosis or not.  Never had bad periods or problems getting pregnant.  I had mid cycle bleeding and a watery discharge like my water had broke but not pregnant.  I went to gyno and found 5 cm hemorrhagic cyst growing. After 6 months of nausea and trouble laying on my sides and pain under my left rib cage the cyst broke.  My CA125 was at 84 which scared me to death.  Gyno says cyst is gone that is good but I'm still producing small fluid filled cysts and I still feel sick to my stomach every night and wake up feeling like I have morning sickness.  The gyno suggested taking depo-lupron to put the ovaries to sleep to see if that helps.  Does this sound like endometriosis?

[ticked]

Okay so its been a while since you posted and I wanted to give you some relief that my CA-125 was 78 during ovulation and I was diagnosed with stage IV endo.  The CA-125 also detects inflammation in the abdominal cavity.

Have you ever been tested for STD's? The only reason that I am asking is because I was diagnosed early this year with Gonorrhea that was dormant for 4yrs. I had mid cycle bleeding, bleeding during sex sometimes and serious discharge, watery etc. I had no clue I had this as i didnt think that my discharge smelled at all.

On another note, before my surgery I was severely nauseated and was in a lot of pain with acid reflux and the GYNO asked me to go on Lupron and I refused because they couldn't confirm if I had endo or not.  After the surgery I went on Lupron for 6 months and I should never have.  I felt bullied into taking it and I suffered a lot because of it.  

Let me know how you are and what you have done during this time, maybe I can answer more of your questions.

[teddybears4ever2]

I have a confirmed case of stage 4 endo.  I do not use Lupron.  I have chosen fish oil to see if it helps.  You are not required to use Lupron if you do not want to.

[joe199]

I was confirmed with stage iv endo last June and had a laparotomy performed. I was in severe pain as well. Nausea and rib cage pain as well. Could not even sleep while awaiting the surgery. No position was comfortable. My CA 125 was at 71. I had two chocolate cysts that were around 6 cm x 6 cm x 6 cm, the size of a tennis ball. My gynecologist wants me to take depo provera until I am in menopause. I am only 41. I refuse to take it afraid of all the side effects. I agree we are almost made to feel like we HAVE to take it. My surgeon was very forceful about me having to take it. She does not know I never filled the prescription. Not even willing to take Alesse the birth control pill. I am just waiting and seeing. So far 17 months later I am still pain free since my surgery.

[ticked]

Thats great to hear Joe199

[jojett]

Sorry new on the board but totally know how you feel. I am 26 years old with severe stage 4 endo. They tried to get me to do the lupron but I declined it. They are saying that after doing the ivf and hopefully having a baby they said that I HAVE to have a hystorectomy.That it is unavoidable... do any of you know if this is the only way to deal with the endo. I dont know what to think at this point. I do know I will NEVER do the lupron. I have two friends that I personally know with endo. both of which did the lupron and are having a hard time even a year after being off the lupron with their cycles not being regualr or returning at all.... any info would be appreciated.
Thanks in advance!
Jolena

[ticked]

Having a hysterectomy will not solve the problem. If you have deep lesions and you have the surgery and they miss them it will still continue to grow. I would avoid a hyster at all costs unless its absolutely necessary.

Here is a link from one of the places I used to go often to read.  

http://www.endo-resolved.com/hysterectomy.html

[jojett]

Thank you so very much.. I am really nervous, start in vitro soon... glad we can have our own but afraid of the injections to get there! :( and afraid of the hystorectomy heard horror stories!,,

[Phaerelastra]

I have stage III endo, and I'm now on progesterone to avoid a 3rd surgery before January. I don't know that your symptoms sound like endometriosis, most of the people I've talked to about it don't often have nausea to go along with it, but I sometimes get nauseous from the pain because it hurts so bad.

I hope you've gotten it examined by now and know for sure what you have. As far as Lupron is concerned, it ruined my life. I went on it in the summer of 2009 and it certainly put me into menopause, but it did nothing to relieve the pain for me. I've heard that it works for some women, but my biggest complaint was the rapid hormone changes that made me into a different person. The mood swings, uncontrollable anger, feelings of wanting to climb out of my own skin (if that makes sense, its almost like a restless legs feeling throughout my whole body). The emotional issues were enough to almost end my marriage. I think I might be really sensitive to hormone treatment, because the high dose of progesterone I'm on right now has made me rather unreasonable, but as opposed to angry type feelings, I get sad easily.

I don't know if that helps, but I make it a point to caution people against Lupron. It was originally made to treat prostate cancer in men, so why anyone decided it would be good for women is beyond me. Avoid Lupron if you can.

[springyes]

Thanks ladies I haven't been on for awhile.  I really appreciate your comments, input and honesty.  Ticked I was never tested for std's but have been in the same relationship for 18 years I better not have any lol!!!!  They still were never able to give me any answers about the water breaking episode but the 5 cm hemorrhagic cyst did break back in August and the CA125 supposedly went back within the normal levels.  I never took the lepron because of what I read with all the mood swings.  I was feeling very moody as it was without any help from full blown menopause.  My gastro feels my bowel is kinking off in the night time when I lay down due to adhesions from previous bowel sugery and c-section.  This is why I am soo nauseous and gassy by morning.  One really will never know if it is due to adhesions or is it due to endometriosis unless they operate which can cause more adhesions so I am terrified to do that.  Guess I'm just stuck with this for now until it becomes completely blocked off and I have to go in for another operation.  Life just gets complicated sometimes and I'm glad there are sites with great people willing to share their honesty like this one.  All as we can do is try to help one another.  Thanks again!!