[identity profile] washable.livejournal.com posting in [community profile] vaginapagina
Hi VP All Stars,

I've been on Depo Lupron to treat Stage 4 Endometriosis for 2-months. Long story short: in February of this year, I had emergency surgery for ovarian torsion. When my surgeon (who is now my gyno) opened me up to flip the ovary back over, he found that I had endometriosis everywhere. That is a whole other story and I am currently in litigation for medical neglience against my original doctor (FML). Once I healed up from surgery, he put on Depo Lupron. While he explained the side effects and all that jazz, I wanted to get the perspective of those who have actually been on it.

My question is, for those of you who have been on it and completed the treatment, did it help you in regards to your endometriosis whether is be the symptoms, spreading of it, etc? I would definitely love to hear your stories and opinions on the treatment. If you don't feel comfortable posting about it here, PMing me is totally fine.

Thanks in advance!

Date: 2012-07-03 09:09 pm (UTC)
From: [identity profile] somniumdraconae.livejournal.com
I've been on depo lupron for endometriosis.

Now technically I was not officially diagnosed when I went on it so I do not know what stage I was when I started the lupron. My doctor, and my insurance, were willing to let me try it as a treatment with just my symptom history as a tentative diagnosis for endo.

Personally, while I was on it, it was great. My symptoms were almost negligible, I felt good, etc. But within a couple months of completing 9 months of treatment, I was right back were I started. A few months later I had surgery and was diagnosed officially, I believe I was stage 1 at the time. My doctor did comment that there was less than she was expecting based on my pain levels, so it is entirely possible that the lupron shrank some of it down, and that the reduction just wasn't significant enough or wasn't in places necessary to reduce my pain. Since I didn't have a pre-treatment surgery, we'll never know for sure.



I've had some better luck with longer-term control using Depo Provera, in case you are interested. It is something you could consider going on after you finish the lupron course. It's the progestin-only birth control shot, in case you weren't familiar. Partly why I think it works for me is that it completely suppresses my cycle (which is where the worst pain is) and I can just stay on it continuously, which you can't do with lupron.

Date: 2012-07-04 12:05 am (UTC)
From: [identity profile] somniumdraconae.livejournal.com
Not at all.

Were you on a combined pill? It could be the estrogen that was making you sick, and you wouldn't have any problems at all with POP's or Depo Provera.

Date: 2012-07-03 09:46 pm (UTC)
From: [identity profile] kaberett.livejournal.com
How it affects you is likely to be really dependent on where you are. In the UK, when I was on leuprorelin (or other GnRH agonists) I was also prescribed tibolone/Livial, a form of HRT, to prevent menopausal symptoms -- which worked really well until, uh, the GnRH agonists stopped working for me...

However, guessing based on the fact that you refer here to Lupron, you're probably in the US? In which case you're unlikely to be prescribed HRT, based on other stories I've heard (and in any case tibolone isn't FDA-approved), which makes you a bit more likely to get the menopausal symptoms.

Date: 2012-07-05 05:01 am (UTC)
From: [identity profile] xhollydayx.livejournal.com
Hated Lupron. I had so many of the negative side effects (side note: there's an endometriosis community that may be worthwhile to cross post in). The hot flashes were not too bad, but I'm always cold. I'm also not convinced that it made a huge difference w/ my endo. The best thing I've done so far has been Provera (I take two 10mg tablets a day). As opposed to the Depo Provera shot, if you have a bad experience, you can stop it ASAP and the side effects will go away quicker. Also, my reproductive endocrinologist said that it keeps a more steady state of the drug in your system and w/ Depo Provera it can fluctuate a little. Not sure how true it is, but I can see how it would work.

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