A Tale of, Oh, Eight Doctors or So (Pt. 5)

Refresher/update on the doctor list:

  • Dr. One – reproductive endocrinologist who I’ve worked with occasionally over the last 3.5 years
  • Dr. Two –old obgyn, buddy of Dr. One who did my first laparoscopy and found endometriosis
  • Dr. Three – new obgyn who actually had new ideas and gave me some options besides
  • Dr. Four – spinal pain doctor
  • Dr. Five – new internist
  • Dr. Six – gastroenterologist/allergy specialist
  • the new
  • Dr. Seven – brilliant, genius obgyn/pelvic pain specialist in California who I want to do my upcoming surgery
  • Dr. Eight – this guy should have been on the list ages ago: he’s a chiropractor/kinesiologist who has been treating me periodically since I had that parasite in 2008, which he got rid of

I’ve waited a while to update y’all to include the appointment I had today with Dr. Six. See, whenever I get blood drawn to test for the fungus antibodies, it takes weeks to get it back, and so I’m usually operating with month-old information. Anyway, here’s the situation as we think it is now.

1. The pain from the fungus has significantly lessened, almost to zero. Though apparently it will take a while for my immune system to recognize that the the fungus has been beaten back, it has apparently been beaten back. In December  So I am able to get out of bed more days than not now, and I have issues with nausea way less often. I started to suspect that the fungus was gone maybe 4 weeks ago, and Dr. Eight, who isn’t really that kind of doctor, tested me with his fancy tests and said the fungus was gone and the endometriosis is devastating me. Today, Dr. Six basically confirmed this as very possible, and said that the anti-Candida antibodies will take awhile to diminish in numbers (which explains why I’m still testing high). He told me to stop taking the bomb (Diflucan) now, and in a month to drop my Nystatin pills from 3 down to 2 a day. (Nystatin is an anti-fungal medication that keeps the fungus from growing.) We’ll see how it goes.

2. My endometriosis is back. We always thought it might be an underlying factor in this whole drama. It is the worst it has ever been. I am in pain every day, and it’s usually pretty strong pain. So while I’m not bed-bound anymore, I’m still significantly incapacitated.

I found a doctor out in California named Andrew Cook, who is a leading expert on endometriosis and pelvic pain. He uses a different method that almost all doctors to eradicate endometriosis – excision rather than burning with lasers. Excision is much more precise because you can actually see what you have done; burning leaves, well, burned looking stuff. It’s hard to tell if you got it all, especially since endometriosis has depth as well as breadth. And of course, since mine is located mainly on a nerve over my left leg, nobody wants to risk going too deep. This is why it keeps coming back there. But Dr. Cook, aka Dr. Eight, looks and excises on a microscopic, cellular level. Oh, and the stats on this doc are fantastic, especially for endometriosis patients – we are hard to treat.

SO, needless to say, I am hoping to go to California sometime in the next month-ish for surgery with Dr. Seven. It’s my best shot at beating the endo, plus it has the benefit of NOT BEING A HYSTERECTOMY. Which I really, really am glad about. (Of course, if you get a hysterectomy but don’t have an effective laparoscopy, the pain and problems can persist. Endometriosis likes to colonize.)

3. Dr. Six did some allergy testing, which I’ve never had done before. Apparently, though I don’t have celiac disease (which I was tested for several years ago), I’m allergic to gluten. I’m also allergic to, shocker, wheat. And yogurt. And bran.  And rye and casein, sort of. This is very very sad – I love cheese and milk and pizza and flour tortillas and pasta. I know there are substitutes and stuff, but there’s no denying this is going to make my life way more complicated. 😦 But I’m sure I’ll figure it out with a bit of help from Mom and the internet.

The hardest part is that right now, I can’t have much sugar. Some fruits, like pears, apples, and citrus fruits, are fine, but honey, corn syrup, brown sugar, white sugar, etc. are all off limits. Which stinks, because I have found tons of great recipes that involve all kinds of great recipes that have sugar in them. And it will be awhile, apparently, before I can eat them with any kind of regularity.

So there’s your update. Progress = good. Surgery = good. Gluten = bad.

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2 Comments to “A Tale of, Oh, Eight Doctors or So (Pt. 5)”

  1. Sounds great! When and where is surgery in CA?

    Sent from my iPad

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