Lupron or Agystin for Endo

Hi everyone,

I was recently diagnosed with stage 4 endo during a laparoscopic myomectomy. Myo went great, just had no idea about the endo.

I'm 45, past child-bearing years, still not "ready" for a hyst and my doc knows this. He has suggested 6 months of Lupron shots with "add back estrogen" as needed, or another drug called Agystin. I've only read bad things about the side effects of Lupron. Have not heard of Agystin.

Anyone have any experiences they can share about either one of these treatments?

Thanks all,
Beth

Some women have had luck with lupron. Work closely with your doctor. My doctor gave it to me as an option - but was not real excited about me using it. His own clinical practice had shown results that were not that impressive. If you decide to give the Lupron a try - you'll need regular bone scans. Report any joint pain to your doctor immediately. Lupron has been associated with some joint pain that in rare instances does not go away when you stop the shots. This info. comes from my doc.

Good luck to you. Lupron may be just the thing for you until you feel you are ready for a hyst IF one is ever needed. You are wise to check all your options.

Thanks Janie and Adrite (Angie):

Since both of you have had experience taking GnRH agonists, can you tell me how you felt while taking them? Did you have side-effects and what were they? Also, did this improve your endo ... for how long? I know both of you have had hysts ... how did you finally come to that decision?

I actually had a laparoscopy 15 years ago when a previous doc suspected I had endo. At the time, he said I didn't have it. I had upper G.I., lower G.I., sigmoidoscopy, etc. and ultimately was told I had irritable bowel syndrome. I'll never know if I had endo then or not, but over the years I've attributed all my "belly" pain to IBS, never giving endo another thought until my lap myo about 3 weeks ago. I was in SHOCK when I saw my DH after surgery and he told me the doc said I had stage 4 endo. I didn't even know what that meant. When my doc called me at home the next day and told me a bit more, I just cried. I saw my doc on Monday for my follow-up visit ... he said my right ovary is very bad, stuck to side of peritoneum and my ureter is involved too. He told me if I choose to have a hyst, he'll need to have a urologist there to put a "stent" in my ureter. The cul de sac is "obliterated," as they say. I went back to work and then cried some more. I was feeling so good about my decision not to have a hyst for my fibroids ... and the surgery was very successful for that. But the endo diagnosis has really dragged me down. Can't seem to stop crying, thinking about all those years without treatment, just accepting that some level of pain was part of everyday life.

Beth

Beth I'm so sorry for you. Unfortunately I don't have any experience with Lupron. It was given as an option to me, but after reading some - I decided not to try it.

My endo story is sort of sad - but I am finding out, very common. I have gone from doctor to doctor for years trying to get some relief from the pain I was in. Debilitating periods, horrible bowel pain, terrible pain during intercourse, and some months sharp stabbing pain on my right side about the time of ovulation so bad I could not sit or walk or get comfortable at all. Sometimes I would be curled up on the kitchen floor from the pain. My dh was beside himself. Countless trips to doctors and the er were always the same. Your a women. Its your lot in life. Deal with it. I never even knew about endo. I was prescribed higher and higher doses of anaprox until finally I was taking them by the handfuls. One time out of town, my period came early and I did not have my pills. It was the worst 2 days of my life. I'm thinking - this can't be normal. There has got to be something more wrong with me. So I start doing some research on the internet and for the first time I find out about endometriosis. It was never even mentioned to me before. I also found a doctor that specialized in the treatment. He did a laparoscopy with the intention of removing any he found. He found a mess. He showed me the pictures and my inside organs all looked like they had tar on them. One ovary was destroyed, one ovary was probably destroyed, rectum and bladder need some repair - but his greatest fear was my colon was perforated. His recommendation was a tah/bso with much repair work. I felt like giving him a big hug. For the first time someone believed me. My surgery was 6 hours and I did have to spend 6 days in the hospital. But I have no regrets. Hrt has been a trial, but I think I'm finally getting it. For the first time in years, I'm living pain-free, I enjoy sex again, I don't wet myself when I sneeze, and a BM is a breeze.

Anyway - that's my story and I'm sticking to it. One thing I have come to realize is endo is a terrible thing that controls many women's lives and sometimes goes undiagnosed - because its a women thing.

Thanks for asking for my story. It felt good to tell it.
Good luck to you.

You wanted to know about Lupron. I was sort of against it at first, had heard some awful stuff. But my dr. said that it would help me decide what to do. If the Lupron helped, then a hyst probably would too. I decided to give it a try and the first week was awful with an increase in estrogen and the second week I bled and after that I have been pain and period free. I am taking Estroven to combat hot flashes and night sweats and it is working well. I took my last shot the end of June. I came to realize that Lupron is only a temporary thing and am going ahead with the hyst knowing that the endo may come back, but willing to take the chance, to have my life back. As my shot wears off the pain comes back a couple days before my next shot. So I don't see it as a long term solution. Hope I helped a little. Research Lupron though, it is not for everyone and I am really lucky to not have many side effects. The worst side effects for me are the headaches and joint pain sometimes.

	Quote:
Since both of you have had experience taking GnRH agonists, can you tell me how you felt while taking them? Did you have side-effects and what were they? Also, did this improve your endo ... for how long? I know both of you have had hysts ... how did you finally come to that decision?

I did have joint pain, felt very tired, had some hair fall out (not alot, just more than usual), allergies got worse, breast tissue (ok lets just say they sagged) and were painful (not too painful). But this of course was NOTHING compared to the endo pain. I did have a great deal of pain relief while on them, but unfortunately the pain returned within just a couple of weeks after discontinuing their use.

I had ten abdominal surgeries to try to remove the endo and adhesions that caused the endo. Basically every doctor I saw told me that a hyst would fix me. I was refused pain medication, and told that unless I had the surgery they wouldn't give me any. Basicaly: You have the surgery, or you're going to endure excruciating pain. So...I had the surgery. I made the doc promise to remove the endo. She told me she would. Then, after surgery. I still had pain...this time much worse than before. It's taken me almost 2 years...and I finally found out that NONE of the endo was removed (I actually found that out at about 4 mo post op and the doc said, "Well if you have no uterus, then you won't have pain" :burning: -) and that I had nerve damage and something called RSD (caused from the surgery itself...not negligence). Soooo...now I have a whole new host of problems to deal with...AND the original pain. So, no...I cannot recommend it as a sure fire cure. I wish I could say that mine is a single case...but I've found more and more that it is not an isolated case. Is it common. No. I've heard statistics (basically pulled out of the doc's heads) of 3%, 10%, 15%...but no one really knows.


Janie: I'm so sorry that you endured this as well...but you are right...your case is unfortunately typical. The average diagnosis time for endo (according to the endometriosis association) is six years. It took me nine years to get an accurate diagnosis. And like you...I was labelled a drug addict, annorexic, and a neurotic before anyone ever mentioned the word endometriosis. I wonder if you would mind if I mention your case as a "success" story. I hang around this board as do many others because they STILL have problems with endo post hyst. I would like a few cases to balance those responses so those who are trying to make the decision to have or not to have a tah/bso can have "good outcome" stories as well as "bad outcome stories" so they know both sides of the coin.

Janie, Missy and Adrite (Angie):

Thanks for sharing your stories. From the reading I've been doing, I also have come to the conclusion that Lupron and other GnRH agonists are temporary, at best, with frequently miserable side-effects that may be long lasting. My doc tried to downplay the side-effects, then told me about add-back estrogen as an "antidote" so-to-speak. I really think he's proposing this to buy me some time till I consent to a hyst.

Not to be negative about hysts, but the more I read the more I question whether or not this is a solution for endo. As everyone here has said, a hyst is truly a last resort. Right now, I'm seriously considering trying to deal with my endo using Motrin and anaprox. My pain is not as significant as many other ladies report. I get uncomfortable, extremely uncomfortable at times, but I function, I go to work, I do what I have to do and there are days when I feel good. The biggest challenge has been intercourse ... how do you put a price on that? It's not what it used to be, but I do have days when I'm not in pain and my dh is a saint. Can't believe he has not left me, but he's still here! Am I crazy to refuse treatment, considering my endo is stage 4?

Beth

Hi Beth! Well, I am new to this page... but wanted to share my experience with Lupron.

I am just finishing up my 6 months of Lupron. The continuous BCP was not working for me, so the Doc. said we should try the shot.

I felt absolutely terrific the first 2 months I was on Lupron. After that, I began to have mild spotting, the pain would return, etc. I figured out that the shot would wear off about a week before I was to get another. We then increased the dosage. I began to have mild hot flashes (not many - maybe 1 every other day or so), and felt great when I got the shot, but then, again, it would wear off. The past 2 months, it has not worked more than 2 weeks.

Like the others said, Lupron affects people in different ways. I am a hormonal nightmare, so the lack of hot flashes, etc. did not surprise me.

The Dr. wants to again put me on the continuous BCP. I am having a conference with him again tomorrow - and if he can't be more sympathetic, and sit down and explain to me why one visit, he wants to schedule a hyster., and the next he does not, I will seek another opinion.

I wish you well in your decision with Lupron... remember, if in any way it does not agree with you - you don't have to finish the entire 6 months. I have read where not many can make it through the entire time frame.... whatever you choose - remember that it is your body, and your decision.

Fondly,
Amanda :sing:

Beth,
Hi, nice to meet you. I took the recommended 6 month Lupron treatment, starting May of 99. It puts you in a pseudomenopausal state and you can expect to have some hot flashes and night sweats; mine were not too terribly bad. It is only recommended that you have one 6 month treatment due to the greatly increased risk of osteoporosis. Unfortunately, the Lupron only gave me one month relief of my symptoms, then it was back to the 2 weeks of excruciating pain each month. I am now almost 5 weeks post op from a TAH/BSO, and I feel better than I have in a long time. If I combined all of my post op discomfort over the last few weeks it still would not compare to the pain I experienced each month. The hyst. was the best choice for me. I hope that you get to feeling better soon. Let me know if I can help in any way.

Tammy J

You're absolutely NOT crazy. Endo doesn't have to be a scentence of pain or a problem that needs a solution. Everyone is different. Unless it's causing you considerable pain -- and motrin controls it pretty much -- I'd definately go that route. The less invasive the better. Invasive procedures (no matter what they are) must be weighed against doing nothing. If doing nothing has less of a downside than doing something (surgery) then always go with the one that has the least downside. As in...if the pain you bear each month is not so bad that you cannot function, don't opt for surgery. If it is so bad that you cannot function -- get a second and a third opinion...then have surgery. That's what I'd do....and what I did...