Depro lupron shot

Discussion in 'Women's Issues' started by Zeppelingirl, May 24, 2006.

  1. Zeppelingirl

    Zeppelingirl Member

    Hi, I was just wondering if any of you ladies with endometriosis have had the lupron shot. I just got my first one yesterday. Any experience?
  2. mamaboogie

    mamaboogie anarchist

    I took it. It was the very worst six months of my entire life. I gained like 40 pounds. On a 100 pound, at the time, person, that's a lot of extra weight! It did absolutely nothing about my pain levels and my endo actually got worse while I was on it. I had the most horrific mood swings and down and out depression imaginable. Then there's the hot flashes and night sweats and insomnia. I lost half my hair (it did come back). My cycles were messed up for over a year after my last shot, and I was not ovulating at all most months. Six years later, I still have some of the side effects. Worse for me was the memory loss. That bugs me more than any of the rest, and I doubt it will ever come back. :( Some women do have good results while they are on the Lupron, but as soon as you stop taking it, the symptoms of your endo come back, often worse than ever before. It's only a temporary fix, and then it still has some really nasty side effects. If it really made the endometrial implants shrink or go away permanently, it would do the same to the endometrial tissue inside your uterus and you would be effectively permanently sterilized.

    If your doctor did not remove, completely excise, all the endo (laser doesn't get it), no matter where it was located, you need to find a more highly skilled surgeon. Nothing else will make the endo go away. NOTHING. None of the experts recommend Lupron for women with endo anymore. I have to run, kids need me, but I do have tons more to say about this subject....
  3. TheRealPamela

    TheRealPamela Member

    That sounds really terrible. I hope both of you ladies find something to permanently help w/o all those side effects.
  4. mamaboogie

    mamaboogie anarchist

    It's actually been seven years... Lupron has never been proven to have any effect on endo or increase a woman's fertility (it was originally used to treat prostate cancer), but doctors continue to use it for those purposes. It HAS been proven to shrink your pituitary gland, sometimes permanently. That means it affects all your body's hormones, not just your estrogen levels. My biggest mistake was believing what my doctor told me without doing any research of my own first. I did not demand to read the patient info sheet and package insert, which, by law, they are required to provide you with. And then I kept taking the stupid shots, in spite of all the horrid side effects, because my doc kept telling me it would get better, the pain would go away. It never did. If you have bad side effects, you don't have to continue taking those shots. Most women do not have it quite as bad as I did, but the possibility is there that it could be even worse, permanently, forever. Estrogen add-back therapy is very controversial. It might help with the hot flashes and risk of losing bone density, but the whole reason they give Lupron to women with endo is to lower your estrogen levels. If you want links to other websites that address this topic, I have tons of them stored.

    If your doctor effectively removed all your endo implants, you wouldn't need to take Lupron. Find a surgeon who can and will remove all the endo, no matter where it is located. My first doctor told me because of how much endo was in me (like way beyond the limits of what they call Stage IV) and where it was located, that was not possible. Then I found a specialist, right here in town (I was ready to drive to Atlanta and see someone down there) who could and did remove all my endo implants, even the ones the other doc said could not be removed because of where they were located. Yeah, it did come back, but I had two glorious years of absolutely no pain and none of my other symptoms either, and the pain has never gotten as bad as it was before.
  5. Maggie Sugar

    Maggie Sugar Senior Member

    After I had the same surgery Mamaboogie did, I was still in pain so I was given Depo for my Endo. It sucked. No periods, but still pain, and it took 9 months after the last shot for me to start menstruating again. I never thought I would be the same. I was very very lucky to have been able to have my baby, Sage, after this experience, especially, when the shot didn't "work" the doctor I was seeing kept pushing me to have a hystorectomy. I refused, found my OLD OB, (who had delivered all my other kids, and taken good care of me) who said "Have an other baby. I would have NEVER put you on those drugs. I wouldn't suggest a hysto in you, unless you begged me for it, and were in so much pain you had no other choice. I don't like hystos. We'll give you painrelievers, try BC pills again, if that' what works, and rethink some other strategies." he BC pills didn't work. But I got pregnant with Sage a few months later, and never needed any more treatment. The fourth pregnancy really helped, and now, although I get a nasty period once in a while, I can control the pain with Aleve. Amazing.
  6. Zeppelingirl

    Zeppelingirl Member

    I'm sorry to hear of the pain both of you have been through.

    Well, I had the surgery and have still been having pain, although I can say it all together isn't as bad as before the surgery, but, sometimes I've had pains even worse than before. In march I thought my fiance was going to take me to the hospital one night because I had the worse pain ever... After a while you just get so tired of being in pain every day or almost every single day. My doctor said that they got everything that they could find during surgery, and said that what is still causing pain must be in muscle tissue. I really just wanted to get rid of it all and not constantly worry about it all. My mother has endometriosis and hasn't done anything about it. She gets very bad pain, but since she stopped her bc she has said that the pain isn't as bad. She told me this week that it is now something like 9 days between her periods. My aunt also has endometriosis and it took her the length of 3 marriages to get pregnant. My biggest fear has been having trouble being able to conceive. I think about that all the time.
  7. mamaboogie

    mamaboogie anarchist

    Is your doctor a specialist in women's reproductive surgery? a reproductive endocrinologist? or an ob/gyn? Most ob/gyn's just aren't skilled enough to be doing lap surgery, and actually create worse problems in the way of adhesions. Did you get a video of the surgery? Do you have copies of the post op and pathology reports? Did he use laser? Because laser only gets the endo on top, it leaves the deep implants still there, and really isn't so effective unless you had superficial endo that laser can effectively remove. There's also the possibility of microscopic endo implants that they couldn't see, or adenomyosis (endometrial tissue inside the walls of your uterus).

    Lupron might really help you, just don't expect it to be any long term solution, and there is the possibility of permanent ovarian failure as a result of taking it. I don't want to scare you, but I do want you to be well aware of the side effects Lupron might cause you to have. Get that patient info sheet and package inserts before you let them give you another shot. Read it, and ask your doctor about anything in there you don't understand.
  8. Maggie Sugar

    Maggie Sugar Senior Member

    Chances of finding a doctor who will allow a patient to video tape a surgery are rare to none. Even during C sections, the actually surgery part, the person with the camera is told not to tape until the baby is emerging.

    This isn't really as bad of an idea as you might think. Most lay people, who have not had 4 years of medical school, plus a few years of residency, have no idea what constitutes good or bad surgical tecnique. "A little knowlege is a dangerous thing" really applies here. I doubt anyone could get their lap taped, and considering MOST of the actual surgical work is done UNDER the skin, with a Scope, there would be nothing to see from the outside, except 3 small incisions, with two small forceps and one internal camera, all of them in the body. No doc would simply hand a patient a tape of the internal surgery from the Scope. I think that is just way too much to expect. I know I wouldn't want MY job video taped, nor should a doctor's. JMO.

    Finding a really great doctor, who has a LOT of these surgeries under his belt, and has a good rate of success, however, is the best idea, if surgery is your only option. I'd rather have ONE surgery, than years and years of hormone treatment, but, that is a personal choice.
  9. mamaboogie

    mamaboogie anarchist

    mine does, he also gave me copies of the post op and pathology reports as per his standard practice. I have the tapes of both of my more recent lap surgeries. It's incredible footage. Most endo specialists do the same nowadays. go to the endometriosis section, then the FAQs.

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