Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Mirena drizzles a tiny supply of synthetic progesterone into your uterus, it tricks your ovaries into sleeping in a faux pregnancy.
Femara temporarily interferes with the precursor of estrogen, effectively neutralizing estrogen everywhere but your ovaries. Mirena takes care of the ovaries and Femara takes care of the non-ovarian estrogen. Since endo can manufacture its own estrogen and feeds on it, Femara as an anti-estrogen is the drug of choice for endo. The endo cells eventually starve to death without food. Reducing the endo cells with surgery and letting femara kill off the residual tissue is the closest thing to a cure that exists right now.
Lupron shuts down hormones produced in the hypothalamus that control your ovaries. The hypothalamus controls lots of other stuff, so shutting them down has some nasty (and potentially permanent) side effects. Lupron only shuts down the estrogen out of your ovaries, it doesn't work on the estrogen produced by your endo or fat cells or other tissue. So when you stop lupron, trouble returns.
ALL endo meds have some common side effects caused by the loss of estrogen. Pick your poison. I did six months of letrozole. the side effects are manageable and they go away when you stop taking it. Lupron has too many scary stories of permanent side effects. Hope this helps. -B
I had spoke with my GP she said to at least give it a try and if it doesn't agree with me then I can stop. So I had already kind of decided to do it, I just wanted to know how this is gonna work and what it will do. I thank you for that because now I feel more at ease.
The standard dose of Femara is huge, it's designed to maximize the life expectancy of breast cancer patients. If you get nasty side effects, they usually show up after a couple of months in the form of arthritis and bone pain. Your doc can greatly reduce the dose of Femara to cut down those side effects (PM me if you need these details). By the way, Femara is almost free, print the coupon on the Femara home page and have the doctor sign it when he/she gives you the prescription. Be well!
however, i believe that it needs a little more time and research in application and use in patients with endo. i would definitely have had a surgery first with a gyno or specialist i trust to remove all endo in sight and then wait a couple of weeks(allow ur body to heal) before starting femara...if i had to do it over again. i believe i would have had more relief from it....
hope this helps and talk to tlhue as she's currently on femara i believe still right now and she has an excellent doctor that i myself would like to go see. hugs~jenny
Yea, your right thatotherchick, that's what made me feel more at ease about trying Femara, due to the fact it's a pill rather than an injection. I spoke with my new gyno's nurse and she asked me if I tried anything like this and I told her about my Lupron experience. She paused for a moment and said just like what you said, "well, at least you can just stop if it gets real bad..." YIKES!! But I'm keeping a positive attitude and we'll see if it helps!!
I'll keep you posted here about how things go tomorrow.
Thank you!!
Stay Gold!!
I also called my gyno's nurse to tell her about these side effects and she kind of "scoffed" at me and pretty much told me that those are not side effects of Femara! Um.... not true at all! In fact, one of the nurses over there even told me that I may have arm, leg, and/or breast pain!! AND it's listed as a side effect on the internet and the literature that came with my Rx! The nurse told me to call on Monday if the side effects are still bothering me. She talked to me like I was making it up and that I MUST have done something to cause this pain like over exerting myself. Um...I think I would know if I did something like that! The only physical activity I do is PT which I do everyday and I NEVER over do it, I've learned my lesson the hard way!
I made an appointment with my GP for tomorrow to get her take on things and ask what I should do. I'm thinking/hoping that this will dissipate in a couple of weeks and maybe just treat this pain until then.
Has anyone else experienced these side effects? If yes, how long does it last? I really want to give this med a chance to see if it works!! If I can get through the adjustment period, I think it would be fine.
Thank you!
I just hate when I get talked down to by healthcare providers!! I thought about printing every website that informs about side effects of Femara, ( which all of them include arm,leg,joint pain) and sending them to that clinic. Life is difficult enough without the "pre-Madonna nurses" !!
Thank you!!
The Femara has started giving me hormonal problems. And I don't mean feeling weepy, I mean out of no where down and out BAWLING. That's not even close to the worst of it. I've been vomiting, almost without warning, having to RUN to the toilet!! I started to feel nauseated, and no big deal. I do have nausea from time to time due to the endo/pelvic pain but day two was MUCH, MUCH worse. I've felt this way before and it was when I was on progesterone pills. I was told by a walk-in doctor that my "flu-like symptoms" where from those pills and that my system was imbalanced and needed more estrogen. During that time I was given estrogen pills and the problem went away the next day. I figure now I don't have enough estrogen in my system once again and my body thinks it's "pregnant". ( quote from the walk-in doctor).
I will call my gyno and GP come Monday to inform them that I am discontinuing Femara. I can in NO WAY function like this! I'm TOTALLY done with hormone therapy ! I am WAY too sensitive to it!! Which brings me back to why I refuse a total hysterectomy! I don't even know if I want to have a partial with the possibility that my ovaries won't produce the correct amount!! I am at a total loss as to what to do now!! I really hope I can just get lap surgery done! I don't know if my new gyno will do it now!! I just want to cry!!!
And what I was told is that there is too much progesterone in my body which is why I'm so sick. And then the reason for the bawling all the time is due to the lack of estrogen.
I know that Femara doesn't actually put hormones into your body, I knew that is a chemo drug harnessing the production of estrogen, I read all about it since my gyno's office didn't tell me anything about it when he first told me he wanted my on it. When I said I'm done with hormone treatment is with ANYTHING that messes with them. I really don't get how they can mess around with your hormones without checking them first. I understand the theory behind it but apparently it really doesn't hold water, at least not with me. I've always been sensitive to anything that messes with my hormones. Seriously, with what I went through this last Saturday, I'd rather have the pain because I KNOW that can be treated. Everyone's different when it comes to this kind of stuff. I was soooo hoping, after reading your experience, that this was going to work for me. It's just another treatment that has failed me. My experience got so bad so fast... I couldn't handle the first day of it and I'm sure it would've gotten worse before it got better. It was SOOOOO unbearable!! It wasn't just that I wouldn't have been able to function at work, I wouldn't have been able to function PERIOD!
I had quite an emotional day today caused by my gyno's office. I had called to inform then of what happened. The nurse called me back after calling the gyno and said " Femara was your LAST resort and you now need to talk with your GP about pain management." Of course, if they would've actually read my history they would've known that I've been in pain management for over a year already!! But I wasn't going to let it just lye. I took the "go get 'em" attitude that I've gotten from you and everyone else that has given me support on this with the Femara experience and used it with the nurse. I was in no way going to let them just brush me off!! I asked about a specialist and, well to make a long story short, ( because it was extremely difficult dealing with this nurse!! I had to DEMAND that she look into this further by simply ASKING my gyno!! GRRR! ) I am now waiting for a prior authorization to see..... an actual SPECIALIST!!!!!!! It took me over 2 years of begging a pleading, but I now have a big enough case that my insurance SHOULD okay it!! *KNOCK ON WOOD* It may take several weeks, as I'm told, but I'm totally fine with that. I have a SPECIALIST to look forward to!!!
His name is Dr. David Olive and he practices out of UW Madison in the medical center. I wondered why I've never run across him in my searching but he is in fertility. ( DUH! ) I had just recently thought of looking under fertility, just haven't gotten to it yet. I am stoked !!! My DH says I shouldn't get to excited otherwise I could set myself up for a real disappointment but.... I can't help it!!!
I'm sorry this is so long, it's just been a horrid couple of days! Thank you soooo much for the support and advise, I really, really appreciate it!! I will keep you up to date on the specialist journey.
Stay Gold!!