I realized that I never posted about the last leg of my journey. I tried Provera but it did not give me any relief. I had a total hysterectomy (uterus, ovaries, tubes and cervix) with excision of endometrial lesions via da vinci robot on 9/11/2014. I am on a very low dose of estrogen now. I have never felt better! I now live a pain free lifestyle, have a happy sex life and couldn’t be happier!
Yesterday I saw a new gynecologist. This Dr. is only a gynecologist (no OB in the whole practice), and he came highly recommended from a friend who also suffered from endometriosis. This Dr.’s first opinion was hysterectomy due to severe endometriosis. After we talked, we decided to try Provera since I have not yet tried that. I go back in 4 weeks to see how I respond to the Provera. If it helps with my pain, then I can stay on it. If it does not help, then he will do a complete hysterectomy (remove uterus, ovaries, tubes etc). via DaVinci robot. I feel good about this doctor and his recommendation. So bye-bye Lupron (as of two weeks ago, my hair started falling out!!) hello Provera.
I know I have slacked off on posting here..mostly due to being so tired!! I went to my doc for a consult on 7/10/14. He basically wants me to take one more Lupron injection to see if I get any good results- if I don’t then he feels like I am justified in looking into excision surgery. But… I am not going to take that shot. I talked to the Center for Endometriosis Care (CEC) after talking to a few girls who are saying they have gotten their life back after having excision surgery with Dr. Ken Sinervo. Dr. Sinervo suggested I do not take the Lupron shot as he wants his patients off of it 2-3 months prior to surgery so that he can see all of the endometriosis implants to remove them. (In fact, he said that he would probably want me on estrogen a month before surgery to make it all come out). Plus, the Lupron has killed my short term memory, energy, my hair is falling out, I get bone and muscle pain, hot flashes and extremely irritable.. and the FATIGUE!! My doc also added Elavil to my daily regimine which has added to the fatigue.
I go on the 24th for a second opinion with a Dr. a friend of mine sees (she has endometriosis as well). I feel good about this since they are only a gynecology practice- they don’t do babies. I hope this will avoid any pressure to get pregnant. I have a hard time impressing upon the doctors that I do not want children and that I am not going to live my life in pain around the chance of maybe one day I will want them. I don’t and I won’t.
I am waiting on records from my doctor to finish my information packet to send to the CEC for a free consultation. I just want to get back to normal and I don’t know why these doctors can’t understand that!
(I posted a link to my lap surgery pics if anyone is interested in what my endo looks like)
Most of my endo is concentrated over my bladder, uterosacral ligament and peritoneum. I am not sure what stage, if any, I am. What I am sure of, is that this endometriosis is trying to take control of my life!
Well, I have been trying to be strong about this and see this tratment through to the end.. But I’m not sure if I can. I know that with all medications there are side effects, but I am not sure if the side effects are worth it. The past week, I have had unbearable recurring headaches as well as extreme fatigue and mucle/joint pain. Any little bit of exertion (talking on the phone, holding my purse, writing or even typing) wear me out so fast. I haven’t been to the gym in 2 weeks. I haven’t done more than wash a few loads of clothes out of necessity. The pain of the endo is bad, but I am still having pain plus all of these other side effects. I have an appointment with my Dr. set up for 7/10 (looks like I will be in misery for yet another holiday). I guess I will make up my mind then.
Well friends, today was my second Lupron injection. Feeling a little cruddy today- stiffness and soreness in both of my legs, fogginess, and fatigue (plus the regular pelvic pain). The nurse asked that I keep a journal to track my symptoms to see if they get worse near injection time or not. I asked her today if there any other patients in the practice on the treatment. She said there was me, another lady that stopped mid-treatment and one person that was about to start and that has been all she has seen in the 3 years she has worked in the practice. I feel a whole lot better now that I have found several support groups on Facebook to connect with other women of all ages and walks of life!
This was the receipt for the first fill of my Lupron (this is with the copay assistance card from Abbe Vie). Since then, **fingers crossed** I shouldn’t have to pay anything for it since I have met all of my deductibles and out of pocket expense. My insurance is also looking at this as medical rather than prescription since I have to have it administered by my Dr.