Tell me your experiences! On Tuesday we had a phone consult with an endo surgeon finally and she said she’d want me on lupron 2-3 months pre-op (surgical wait time is 4-6 months here). The following day our RE cancelled our IVF retrieval as the maturity of the follicles was not synchronized. We have a consult with him in a few weeks to plan for the next attempt, but he mentioned briefly that he would maybe try me on lupron for a few months before an egg retrieval also.
I am trying to save my reproductive organs for the possibility of childbearing in the future. Before I went through my second surgery at Cleveland Clinic for an excision, I was placed on two rounds of Lupron. After the first dose, I thought that there was no way I could be this sick from the shot--I had fever, chills, nausea, body aches (especially in my joints), and severe fatigue. Although I had these symptoms before from endo, it was a thousand times worse.
When I went in for my second dose, my doctor wasn't available, so another doctor was scheduled to give me the dose. When he came into the room and saw my age, my diagnosis, and the Lupron set up by the nurse, he immediately began to try to talk me out of it. Knowing how I felt last time, I immediately became anxious, but I didn't know this doctor and Lupron was already in my treatment plan. He said this could have lasting, longterm side effects. I ignored him and asked for what my doctor had prescribed me.
Needless to say he was right. Lupron may work for some people and bless them---so happy it does. But I'm part of a Facebook group called "Lupron Victims" because I now have longterm side effects from those two 3-month doses. It was a hell I never want anyone to have to go through.
I hope my story helps you make a decision. Please research it thoroughly on your own. It always amazes me how little some ob/gyn know about what they're prescribing and are instead "going by word of mouth".
A lot of people have had success with getting pregnant or drastically reducing pain through Lupron treatment. Lupron's biggest downfall is inevitable bone issues. Make sure you discuss with your doctors how your bone health will be monitored and addressed throughout the treatment and post treatment. Some people recover bone health after treatment, but not all. It can temporarily shrink abnormal growths, which some surgeons like, but it will not make endometriosis disappear. Lupron when used for cancer treatment puts your body into a medically induced menopausal state, which comes with a host of possible side effects that can have long term health effects. Just go in knowing this and make sure you ask as many questions as possible to the point you are comfortable and confident. Best of luck and I hope you have minimal side effects!
Thanks for the info kachoo and thanks for sharing your experience Jillian! It sounds awful… and this is what I was worried about. I feel kind of stuck… can’t get pregnant because of endo, failed first IVF cycle because of endo, cant have surgery without going on the drug (and will likely lose my left ovary so we were really hoping to do an egg retrieval first.. plus the long waitlist!) ahhh its like a circle of hell.
Thanks for sharing your experience and sorry it was so bad. I think it’s commonly not well tolerated, so wanting to get as much info as I can before we have our next consult. Hope you are doing better now.
JenC- Lupron isTechnically a cancer drug, I tried it andHad horrible side effects with two injections, severe joint pain, headaches, eye pain etc. There is also research thatSome side effects depending on how long you take it can last longer than whenYou are on it and when you stop taking it.I hope you get well soon and best of luck with your egg retrieval. 🙏
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