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sheisreeds -> RE: Fear of Lupron ? (1/21/2014 8:42:40 PM)
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Endometriosis is a crappy disease, I have it and it is no fun.
Here's the deal with Lupron, it's not likely to fix anything, at most it suppresses symptoms for a year to 18 months after treatment.
I am 31, and was on Lupron a year ago, I went on it to buy time. After my lap my symptoms immediately reoccurred, and Lupron served a 2 fold purpose buying time so my body could get a break, and to see if I responded to the Lupron which meant there was endo or adenomyosis involved.
My symptoms returned full force within weeks of stopping Lupron, turned out I had adenomyosis, a sister condition to endo.
With Endometriosis, especially if it's at the point where you've had at least one surgery, Lupron is coming up in conversation, etc, you REALLY need to be working with an Endometriosis specialist. This is a complicated disease and most gynecologists do not have the skills to treat it. Many doctors do not properly removed diseased tissue during surgery, leading to quick symptom reoccurrence, and do not understand the actual efficacy of drugs used to treat the disease, like Lupron.
Which is insane since Lupron is a big bad band aid that causes tons of problems all on it's own. Specialists I have worked with have said they only use Lupron to temporarily shrink disease before surgery, like in the case of endo on the bowel and they want to minimize risk for bowel resection. Or they use it in cases like mine where all other hormonal treatments have failed, successful surgery just happened, it will aid diagnostically, and the symptoms are totally incapacitating.
And I repeat most studies have shown that Lupron only TEMPORARILY shrinks endo. It does not kill it.
There are a few good online support groups that have links to lists of endo specialists, or have tips on how to find one.
http://hystersisters.com has a great sub forum for endometriosis, no you do not need to be seeking a hysterectomy to post there.
http://endo-resolved.proboards.com/ has a list of doctors members have tried and have had luck with and has tons of threads full of information. In the general forum there is a stickie for the specialist list.
If you need support feel free to hit me on the other side.
Regarding being assertive with doctors: I reached a point with this where I stopped going to appointments alone, and I usually regretted it if I didn't. Bring someone close to you with you into the appointment. It helps to have another ear, a cheerleader, and when needed an attack dog ;) It helped me a lot with social anxiety with doctors, as I knew someone in the room had my back entirely and did not think my questions or concerns were crazy.
Regarding Lupron: When I was on Lupron I took the addback progestin, multivitamins, and an anti-depressant. All helped a lot with the menopause crash course. Anti-depressants not only can help mediate depression, anxiety and mood swings caused by Lupron, but it also helps some with hot flashes. I have a history of severe depression so I was really thankful to have that as a safety net. With the progestin I had fewer hot flashes with decreased severity. I did feel a bit off the entire time though.
However, it's hard to tell what was what since I was still medically a mess. My digestive functioning improved but was still far from normal, and I needed intensive physical therapy to get my entire lower half of my body functioning. So I don't know how much of my feeling off was Lupron and how much was the mess endometriosis had left behind. However, I was so so so thankful for the break from the incapacitating symptoms. Lupron allowed me to tread water, without it I was gonna drown.
Regarding me and endo now: I am doing great currently I had a hysterectomy to deal with the adenomyosis and all my endometriosis was cut out. No symptoms of any kind currently, I still have my ovaries so no menopause. I need to be on long term progestin treatment to prevent endo regrowth.
Good luck with it, happy to provide support if you need it.
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