I am writing this to let people know what’s going on with me lately. I know that several of you have asked, so here it goes.
I have had awful, terrible, painful, and excessive periods since I was 11 years old. I have been to no less than 8 doctors over the years and not one has listened to me until recently. My nurse practitioner (NP), Kim, has been great. She started a lot of bloodwork and has been following me closely.
My back is still a mess. I am in so much pain whenever I move. I am dealing with that because nobody can seem to figure out what’s wrong.
My blood: iron, vitamin D are getting better. My constant exhaustion/sleeping is most likely Epstein-Barre Virus (EBV), which is the virus that causes mono. I probably never got over it when I had it last year and without rest, it will become chronic. It is awful. I am asleep again by 10:30 almost every morning, then usually again in the afternoon.
The big things Kim found were that my testosterone is high (76 and it should be no higher than 78) and my DHEA, which should be between 400 and 722, is 1537. 1537. This is a pretty strong indicator that I have PCOS, which I have been asking about for at least 10 years.
The last gyno I went to (last month) decided that she was doing a biopsy of my uterine fibroid, which is now up to 7cm, without anesthetic. And then she might not be able to do it (or an ablasion) b/c of my size. HELLO? It’s my fucking vagina, not my stomach.
I went to a new gyno here in town today and I love him. From the minute I told him about my symptoms and bloodwork, he said, “You’re classic PCOS.” No kidding. He went through my entire history with me and immediately made plans. He is doing another ultrasound and more bloodwork tomorrow. If it is PCOS (not likely to be anything else), he will start me on the meds for it. I go back in July to go over all of my results and to schedule surgery. He is doing a procedure where he puts a camera into my uterus to look around, then doing a D&C, which he will biopsy. (I can’t have an ablasion if there is any cancer or pre-cancer.) Assuming that comes back clear, I go back a month later to have one of two ablasion options. The better one is probably not going to work due to my fibroid type, but the other one will get rid of 70% of my endometrium. (An ablasion is where they burn off the uterine lining. It stops or decreases bleeding/clotting.)
I can’t tell you how amazing it feels to be taken seriously. All this time, people have said I have problems because I’m fat. He was so angry about the way I’ve been treated by these doctors. If it is PCOS, that’s probably why I’ve gained so much weight, especially in the way I’ve gained it.
It shouldn’t have taken me 24 years to get this fixed. It shouldn’t have taken almost 10 doctors. I shouldn’t have had to leave my primary PA b/c she thinks that my back pain is because I’m fat. I am just thankful that things are moving ahead. If I can just get this depression under control, I will feel better. Well, I need to get the EBV to calm down b/c I feel like a zombie. I don’t care about anything – eating, going out, nothing. And the pain keeps me housebound b/c if I do go out, I pay for it for days.
Anyway, I’m feeling a lot lighter tonight. I’m feeling justified and not crazy. I’m thankful to all of my friends for not walking away. I know that I’ve been distant and crappy for a long time. Depression, chronic pain, and sickness are really difficult to deal with; both for the person suffering and for those around us. Thank you.
