Surgery and Diagnoses... It's Official!

In the past few weeks I was officially diagnosed with POTS, Inappropriate Sinus Tachycardia, ovarian cysts, and Endometriosis. It only took 5 years to get medical proof that I'm suffering, but I have it.

Here's the thing: POTS, Endometriosis, and Mast Cell Activation Disorder (MCAD) tend to go hand-in-hand. I haven't tried seeing a doctor for MCAD, but I have obvious chemical sensitivities that my Naturopathic Doctor helped me figure out. It could easily be MCAD - in fact, given the fact that I have POTS and Endo too, it probably is. I'm uncertain at this point in time if there's any point in me getting my chemical sensitivities diagnosed as MCAD by an MD.

The POTS diagnosis story:

If you follow my blog then you know that last December I saw Dr. Jeffery Cohen, a neurologist in New Hampshire to have some autonomic testing done to rule POTS out. The testing equipment broke, however, and he tried to cancel the appointment on me the day before my flight out there. He was willing to see me and look at other test results, at least. I went to cardiology clinic first and had a Tilt Table Test performed and an Echocardiogram. I did not faint on the tilt table, so the nurses said the test was negative, but Dr. Cohen pointed out that my heart rate did go up over 30 bpm (the requirement for POTS). He put me on a Zio Patch heart monitor for more information. He wouldn't diagnose me without more info, and after seeing the results of the Zio Patch he said I needed to see a cardiologist. My plan was to travel again to see a cardiologist familiar with POTS. My POTS support group said they didn't like Dr. Cohen because he wouldn't diagnose them, but honestly, I really liked Dr. Cohen. He gave me the tests I needed for an accurate assessment, and he was careful and thoughtful. I'm not upset that he wouldn't diagnose me, because I have better information for the diagnosis from someone else because of what he did for me.

I ended up finding a Cardiologist here in Bismarck that is familiar with POTS. I was really surprised by him, and I'm fairly certain he's the only cardiologist locally that is familiar with POTS in adults. I did a lot of digging and asking around last year and couldn't find a doctor who was familiar, and I think this doctor might be new since my asking around. Dr. Stephen Boateng, D.O. at Sanford in Bismarck. I don't think he's an expert on dysautonomia, but he is a very good and careful doctor. I really like him. Dr. Boateng was able to look at all my testing and see the evidence of POTS. He was concerned with my high heart rates on the Zio Patch results, particularly one spike I had. He diagnosed me and had me try a beta blocker: Metoprolol ER 25 mg. In short, it both worked and made me worse at the same time, so he took me off it. I plan to explain this in another post (or this one will get too bulky.)

What is POTS? This explains:





Endometriosis story:

Before seeing him, I went to a gynecologist at Sanford to discuss all my menstrual issues. 2 months of bleeding heavy every day, abnormally long PMS, extra pain... you get the idea. This wasn't the first time I've tried gynecology. Last time, about 4 years ago, I went to a very experienced doctor that I really liked, but she retired just a couple of months ago and I wasn't able to return to her. I initially saw her because I had a MRSA abscess on my vulva - and before you freak out and wonder what I was doing to get it there I can explain. A family member had MRSA who I was taking care of. I probably didn't wash up often enough. Anyway, she helped me recover from the abscess, but did other gynecological tests while I was seeing her. She told me I needed to consider a laprascopy to look for endometriosis, but warned me about the cost. My insurance would not cover the cost, so I decided against doing it. In retrospect, I really wish I had done it then instead of waiting until now. Why? Because I was worse back then and I would really like to know just how much worse I was - I'm fairly certain my naturopathic doctor and acupuncturists have helped me recover from most of my endometriosis before I had the surgery. But the fact of the matter is that I still have endometriosis, and it's officially diagnosed now.

This new gynecologist I saw first had me get an ultrasound, and it showed a few cysts on my ovaries where I have complained about pain. She said a laparoscopy was a very reasonable next step, and so I finally decided it was time to just have it done. I think I'll write a different post about the surgery itself, because I think I can share a lot that will help those of you considering having it done. Especially those of you with chemical sensitivities. I had problems,  I went through 3-4 IVs, but I believe it was worth it. My doctor said she found a lot of scar tissue, probably evidence of past endometriosis. I had endo in a few places that she was able to burn out of me, but I had some on my ovary (the one causing me pain) and she couldn't remove all of it without damaging the ovary. She said she burned it though. I had to have 3 incisions, and now for 2 weeks I've been nursing my belly and trying to let it heal. I'll share photos in the next post where I go into detail. My post-op is in a few days, and we'll discuss treatment options. Endometriosis is a life long illness that will have to be managed.

What is Endometriosis? This video explains:
https://www.youtube.com/watch?v=yM88T1R8HD4

(Blogger doesn't let me embed all videos on youtube - so I had to link to this one.)

Between recovering from surgery and going on a beta blocker for 8 days that made me worse in some ways, it's been a difficult time for me. Very difficult. And our finances are scary bad now. But I'm glad I went through all of this. I'm glad to have official diagnoses, and I'm glad to have this on my record in case I need more medical help - especially in emergency situations. No more arguing with doctors, they can just look at my records and see I'm not a psychopathic hypochondriac. That alone is worth everything I've been through!