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.


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Getting your prescription filled….A battle all of its own!

Ok, so if you are taking Lupron, you may already know that the medicine is extremely expensive! If you are looking into it, beware, the sticker shock may be as bad as the endo symptoms. When my doctor first called the prescription in to my local pharmacy, my insurance company (Blue Cross Blue Shield of NC) denied the claim, saying that since it is a specialty medication I needed to have it filled at a specialty pharmacy. The insurance company did a one time override to allow me to get the first injection and then after that I would need to use a specialty pharmacy (mail order pharmacy). BEWARE!! I was referred to Prime Therapeutics by BCBS and I called that same night to set up an account. They called my retail pharmacy to get my prescription. Since specialty drugs under my plan are covered with 25% coinsurance I wanted to verify the price. They said they could not give me that until they were ready to fill the medication a few weeks later. I waited for three weeks (when they were supposed to call me to set up shipping and billing) and they told me that my claim was denied and that I would have to use another specialty pharmacy. I was given options of CVS Caremark, Walgreens Specialty and Acredo. (I went with CVS Caremark.) When I called BCBS to find out why my claim had been denied, it turned out that Prime had submitted my claim too early. I decided after all of the trouble I went through with them to go ahead and switch to CVS Caremark. They seem to be a little bit more knowledgeable and courteous (I reminded these people that you really should not get an attitude with a 27 year old going through menopause, battling hot flashes during summer!!).

 

A Few Pointers When Filling Your Lupron Depot Prescription:

1. Go to the Lupron Depot website (www.luprondept.com) and apply for the Get Back Program which is a copay assistance program. They have assistance for the Lupron as well as the add back therapy. They also have a dedicated nurse hotline that you can call with questions or concerns about the drug.

2. Make sure you set up your account as early as possible with any specialty mail order pharmacy. It seems like they all overnight medication either to you or to your doctor’s office, but with as many issues as I have had getting my script filled, make sure you give plenty of time for the first order.

3. Take notes when you talk to these people. It seems like they don;t really put any notes in their system. The more information you have on hand, the better off you will be. I have a little mini-notebook i keep all of my prescription information, symptoms, dates etc in. It is a lifesaver!


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Hot Flash

 

Well, I am just past the three week mark- next Friday I will have my 2nd injection. I am still battling hot flashes (boy did I underestimate the complaints of my older female friends and family!!) I was able to get a prescription for the add back therapy (5 mg of Aygestin daily) to help combat that. I seem to be overcoming the fatigue and headaches (still comes and goes but not as frequently), and I still have pain that seems to now be subsiding a little. I am desperately trying to take back control of my life and not allow this condition to rule my life. I have started going back to the gym as everything indicates that the best way to combat the fatigue is to keep energy levels up. I have noticed that when doing ab exercises, I do get pain on my right side (I have a fair amount of implants on my right side  pelvic and abdominal wall. I know I am not the most talented writer in the world, but I hope that someone like me will find this information useful. I know when I was looking for personal experiences with Endometriosis, I was inundated with blogs about infertility and trying to conceive. While I admire those who are trying to have children and battle this condition, I found it hard to relate to when I am not looking to have children. And when I tried to find personal experiences with Lupron, all I found were sites threatening to sue the manufacturer and advising against the medication. I feel that all options should be weighed for each patient and their situation and I know that I am willing to try almost anything to get rid of my pain! Anyhow, I just hope that this presents a little more personal, less scary experience!

And a tip for anyone suffering from hot flashes: These Poise hot flash comfort body cooling towelettes are a GODSEND!


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Week 2-3 Drag

Well Wednesday was 2 weeks sine I had my first Lupron injection. The first 2 weeks were pretty uneventful, I did notice a lot more pain than normal, but I was expecting that. The past three days; however, feel like I hit a brick wall. I have been so tired all the time and any little thing I pick up or hold makes my arms shake. I have also had a headache that comes and goes and the start of a few hot flashes. I am hoping this all evens out soon. I go back week after next for round 2.