Saturday, January 2, 2016

New Year, New Hope

Happy New Year everyone!

I haven't posted in a while, but to be honest there really hasn't been much to post about.

I basically spent the entirety of 2015 sick and in pain. Not really something one would want to reflect on.

The last post I made indicated I had started Lupron. Well here is a little update...

The first month on Lupron was hell. I was a mess. I forgot things. The pain was still there, and I was a hormonal mess.

The second month was a blessing. The only good month I had all year. The pain was pretty much gone all the time. I had trouble sleeping, I had hot flashes, I was hormonal, and I forgot things, but not having the pain let me forgive everything else.

The third month the pain came back. On top of that I started having horrible bones pains. My teeth hurt. My fingers hurt. My wrists hurt. My knees and ankles hurt. I felt old and fragile and like every step I took was going to snap my toes and ankles. I didn't want to do anything. It was the worst feeling ever.

I refused a fourth month. I will forever refuse it moving forward. I have now read how many woman respond very badly to this medication. I do not recommend it to anyone. If you are thinking about trying I suggest you do a lot of research first.

During that time I was finally given my MRI. It showed signs of Adenomyosis, but no signs of Endometriosis. It turns out that the thickness of my uterus is more than four times the normal thickness. When I asked the doctor what now she said that because I was on the Lurpron, that shrinks the Endometriosis, that it was possible they would not see it. I almost lost my mind. What the heck was the point of doing the MRI while I was on Lupron then?

After that my current specialist pretty much gave up on me and didn't know what else to do. She kept me on the Micronor add back to at lease keep my cycles as regular and light as possible, but that was pretty much it. I went back to being in pain and misery and missing way too much work. I asked for a referral to a pain clinic, which she agreed to, but the pain clinic did not accept the referral as they don't treat my type of pain. I broke down in tears in the doctor's office when I was given that news.

Thanks to Nancy's Nook Endometriosis Discussion and Education group on Facebook I discovered a list of specialists that specifically deal with the Endometriosis and Adenomyosis that they believed I was suffering from. I asked my specialist for a referral to one of those specialists, and since she knew one of them very well she agreed. I had to wait almost 8 months to see her, but I finally saw her on December 17th.

She was amazing. She was warm and friendly and sat and listened as I explained every little detail. Then she did the one thing no other doctor had done to date, she actually physically examined me. It didn't take long, she knew exactly what she was looking for. I felt such relief just finally to be in the hands of a doctor who obviously knew what she was dealing with, She prescribed me a new medication that she had success with and scheduled me for an ultrasound with a technician she has trained to look for very specific things. I will do that in late January or early February. We also scheduled a surgery date for the end of June in case nothing else works out (since the wait times up here are so long). It was such a great experience, just to be heard, and not to be looked at like you are crazy.

The good news is she is thinking right now that it might just be the Adenomyosis that is bothering me, and not Endometriosis at all. She said she didn't feel any of the telltale nodules etc. that she is used to. That is good news because Adenomyosis is completely contained inside the uterus. That means a hysterectomy will cure it. Keeping my fingers crossed for that one! But even is I do have Endometriosis she is skilled to remove it while she is in there, there is just no guarantee that it might not grow back at some point.

The new medication that she is trying me on (Visanne) is actually working pretty well. I get about 50% or less of the typical pain I have been dealing with, which is really nice. I rarely have to take the stronger pain killers anymore. I do get a headache almost every day, but I can treat that with an Advil and move on. Compared to the pain I am used to this is almost like being well. I still have weird side effects like mood swings, trouble sleeping, some minor body aching and bone pain, but nothing like what I had on Lupron, and something I am just going to live with t avoid the pain as much as possible. 

Very much looking forward to seeing how this year goes, especially with a pending surgery that will hopefully put this Humpty Dumpty back together again...


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