<p>After discovering stage IV endometriosis during surgery to remove dermoid cysts, my doctor recommended a few different courses of action. Instead of going straight to a hysterectomy, I decided to try “medical menopause” in the form of Lupron shots for six months and taking a daily pill of Norethindrone. </p>
<p>I’m used to associating Lupron shots with trying to get pregnant! I had my first shot today. Has anyone else done this? What your experience like? Did your endometriosis come back and, if so, how long after you stopped the Lupron?</p>
<p>The best piece of research I found when looking up Lupron is this, “(Lupron) is also used to treat chronic adrenal disease in ferrets…”</p>
<p>I suppose it’s just me and the ferrets now…</p>
<p>My bosses’ D is twenty five years old and has had horrible endometriosis for years.
Her Dr.put her on Lupron shots about eight months ago and told her she would not have a period for six months. She ended up having bleeding for four or five of those months.
The Dr. wrote it off as some sort of break-through bleeding and didn’t act too concerned.
Last week she had the worst bleeding of her life with contractions as if she were in labor.
The Dr. now says it has nothing to do with the Lupron. That it did what it was supposed to do but that the D must have something else going on to cause all this.<br>
She has been in agonizing pain. They say it could be a cyst or a tumor. My boss is so mad that they told her not to worry about the bleeding when the Lupron was supposed to have stopped it. The D is now going to get a CT scan to see if they can figure out what’s causing the bleeding. This poor girl was born with TWO uteruses and a heart condition that will require surgery this summer. She’s a great girl who has had more than her share of raw deals. She’s not married but has a bf and would really like to have kids someday so is praying that something drastic is not called for to fix her prob.</p>
<p>I know this wasn’t an answer to your question but we’ve talked about Lupron so much at work this week (the bosses D works w/ us too) that I couldn’t help replying. I had never heard of Lupron until this young woman was put on it.</p>
<p>I had a Lupron shot about a month before my hysterectomy, to reduce the blood loss during surgery. I didn’t have any negative side effects. Some people get hot flashes but I had no problems.</p>
<p>I didn’t have endo but I had something called adenomyosis - it’s where the endometrial tissue actually works its way into the muscle of the uterine wall (they think it is more common in women who’ve had c-sections, and I had 2 of them). So when I’d get my period, it wasn’t just a lining sloughing off - it was actually the muscle tissue itself hemoraghing. It hurt like he**, and I bled a ton because the uterine muscle was too swollen with endometrial tissue to clamp down properly on the blood vessels and cut off the flow of blood. Can’t be fixed via oblation, the only thing that helped was birth control pills - but when I turned 40 my doctor wouldn’t prescribe them for me any more for fear of blood clots or stroke.</p>
<p>I had a hysterectomy at 41 and it was the absolute best thing I ever did for myself. I have more energy and a lot less PMS. They left my ovaries in place, but I will probably have them out when I turn 50 because both my mom and a paternal aunt died of ovarian cancer in their 70s (I had a BRCA test, it was negative).</p>
<p>I took lupron years ago but was in the IVF program. Took the lupron to shut things down and then they injected me with all kind of things to start me back up. It was a real rollercoaster of emotions. Wishing you good health and success in your health journey!</p>
<p>I don’t want to say too much because I really will not remember the details, but one good friend did lupron several years ago for severe bleeding (I mean sometimes to the point of passing out). I thought it was supposed to last 3-4 months for her but I think it did help significantly. (And I’m embarrassed to admit I haven’t asked her about it lately.)</p>
<p>And my sister was dealing with adenomyosis last year. She’d essentially been bleeding for two years straight. Very heavily. She <em>did</em> do the ablation her doctor recommended (despite many friends counseling her that a hysterectomy was great for them and is the only thing that would permanently fix the problem). Her bleeding has come back, but more like regular periods. (And dang that mother nature–both of us are in our mid-50s and not in menopause yet.)</p>
<p>veryhappy, the BRCA test only looks for a few genes. My doctor strongly feels that since I have OvCa on both sides of my family, I should have the ovaries out - it reduces the risk of OvCa by 97%, and reduces the risk of breast cancer as well. I know it raises the risk for heart disease, but I feel like that is something that is more in my hands with diet, exercise & weight control.</p>
<p>There is no reliable test for ovarian cancer, so 80% of the time it is found at stage 3 or 4, when the survival rates drop well below 50%. (CA125 is not a reliable screening tool - although used in conjunction with other screening methods it can be helpful. What it’s really helpful for is monitoring people during and after chemo, to see if the cancer is responding or returning).</p>
<p>It’s interesting how we all make our choices. In the end, we have to make the choice we can live with. For me, right now, it’s trying lupron but I am getting more comfortable with the idea of a hysterectomy if that becomes necessary. It was just shocking to me at first, a hysterectomy at age 41?! Wouldn’t you know that a dear friend of mine who is a few years younger had to have a hysterectomy a few months ago and it’s been a tremendous help to me to see her go through it. </p>
<p>Again, thank you. It really does help to know I’m not alone.</p>
<p>PMK, I was completely against the idea of surgery, fought fibroids for 10 years, waiting for the 'pause to take care of the issue. Had I not had an ER visit with a subsequent need for follow up due to possible Ovarian cancer, I would not have pursued it and was against the surgical option the whole time.</p>
<p>My previous annual checks ups had apparently not caused suspicion, it was the scans, I did not want to pay the out of pocket, have surgery, and deal with HRT. I would not have spent the $10k just for my convenience, I was gutting it out</p>
<p>That being said, I have not at all missed periods and am relieved not to be planning around supplies all the time…I don’t miss horrid cramps, not one little bit.</p>
<p>All I can say is <em>every</em> woman I know who’s had a hysterectomy (including one about 10 years younger than you) has said some version of “best thing I’ve ever done”. They were all dealing with issues that were severe enough to interfere with their lives. Never an easy or fun decision (varying amounts of mental/emotional issues to work through), but I don’t know anyone who’s regretted it.</p>
<p>My resistance to a hysterectomy is based on a few factors and one of the biggest factors is that my beloved MIL nearly died from a rare uterine cancer that is now being connected to HRT. Of course, she was on HRT for over ten years at much higher doses than they recommend now. </p>
<p>Hopefully the Lupron will work and if it doesn’t, I need to get past my fears and make a rational decision.</p>
<p>I was on Lu Ron for six months and now am on depo and thanks to the Lu Ron my endo went away. The pain was greatly diminished within the first week or so. It was phenomenal. The menopause isn’t so bad since the pills are there to help. I did notice that got hot flashes when it was time for my next shot. The best thing was no monthly visit from mother nature. My endo is completely gone. I would start with a less radical treatment then move to extreme only if the shots don’t work. A hysterectomy would be the last resort.</p>
<p>PG: having a hysterectomy doesn’t mean you have to do HRT. I had a hysterectomy a few years ago (horrible fibroids, long, long periods where I couldn’t leave the house for one or two days a month, an enlarged uterus). I tried to wait until menopause, but it wasn’t happening. Afterwards, I didn’t do HRT because my mother and aunt died of breast cancer. Instant menopause wasn’t great (I didn’t have hot flashes, but did have night sweats) but I never felt like I needed HRT.</p>
<p>Bromfield, That is very interesting. Thank you for sharing that.</p>
<p>Hannah, I’m glad that things are working out well for you.</p>
<p>I’m irritated with the Lupron. My only side effect has been acne (as my body goes into menopause, my face goes into puberty…yay!) but I got my period. It was not even lighter or less painful. Next Lupron shot in a few days, hopefully it will start to work as it should this month.</p>
<p>About 3 decades ago, had Danocrine orally for about a month or longer, to mimic menopause & shrink the cyst(s) and other endometrial growths as much as possible & then endometrial surgery for my endometreosis & chocolate cyst(s), including removal of 3/4s of an ovary. Never had any shots & finally have reached menopause. Did suggest to my sister that she ask about the same before having any similar surgery.</p>
<p>My other sister did have a hysterectomy because of something her OB/GYN found suspicious; turned out it was benign & she has had some unpleasant symptoms from her sudden menopause but nothing unbearable. No one offered her shots, as far as I know.</p>
and am relieved not to be planning around supplies all the time…I don’t miss horrid cramps, not one little bit.</p>