Endo…My Journey with Endometriosis

About living with endometriosis: treatments, opinions and life in general


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Follow up!

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!


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A fork in the Road?

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.


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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!


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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.


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2nd Injection

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!

Lupron Price!!

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Lupron Price!!

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.