Wednesday, November 20, 2013

Stump the Doctor

Every few years it seems like my body likes to play a good game of 'Stump the Doctor'. I will present with a handful of symptoms, some of which can be neatly attributed to a specific diagnosis. I will also have a few other symptoms that don't quite fit and I'll also be missing a few factors that doctors deem key for a diagnosis of that particular condition. And I'll go from doctor to doctor, seeking answers and getting none, all the while suffering from an untreated condition.

 My all time favorite remains a diagnosis of possible gout from a previous primary doctor. She heard me say that my legs, among other things, hurt. She could find nothing else wrong and would not entertain my notion that it was in fact, fibromyalgia. I eventually found a doctor who also believed it was fibro and got treatment for it. But it was a long painful time. It's hard to be sick and suffering through an illness and then, on top of it, have doctors unable or unwilling to explore options. Now I get a kick out of the whole gout debacle. When I have an odd pain, I'll tell Jeff that it must be gout. "This feels like an ear infection, but it's probably gout of the ear.".

Well, it seemed lately that I'd developed uterine gout.* It started at least before January, but I specifically remember in January going to see my ob gyn about it. It's a large practice and I like most of the doctors, so I was comfortable seeing anyone there. I went in and complained that it had been six months since we started trying to get pregnant. I know, I know, they need at least a year before they'll do anything, but we got pregnant right away with Doug. I was scared to wash our clothes together after he was born. Anyway, mid cycle I was having some stabbing, aching pains. And please, I know all about Mittelschmerz** (mid cycle pain some women experience during ovulation, lasting at MOST two days). It was dismissed as normal and we were sent on our merry way. I went back to see another ob sometime that Spring, complaining of the same thing, except now the pain was lasting four days. I got another pat on the head and everything is fine.

So in July we came up against the magical one year of trying to conceive deadline. I went back to my ob and explained the situation and the pain again, which was still growing. I was having a LOT of pain mid-cycle and certain activities produced pain and I was having the same, dull ache and stabbing feeling on my period now too. My doctor sent me to a local (large) fertility clinic to get sorted out. We were hopeful that at last we'd get to the bottom of this.

The clinic, before talking to us, before doing any tests or looking at the MOUNDS of personal health histories we filled out, told us that our options were either IUI or IVF. We were a bit confused. We thought they would diagnose and FIX the fertility issue, not simply overcome it. It was somewhat like being told your house was going to have to be burned down to kill a small infestation of mice. Anyway, they couldn't find anything wrong with me and weren't willing to look into the now horrible pain I was having every month. It was a rather disappointing waste of time, but at least we didn't get $20k into it before finding out it wouldn't work. We're extremely blessed to have Doug, and we're ok if we end up being a family of three. So we weren't super interested in going that route.

I went back to my obgyn's office a total of three more times, seeing three more doctors trying to get to the bottom of the pain. One finally ordered a more detailed ultrasound to be done while I was in pain. It didn't show anything. The only thing the doctor could come up with is that the mid-cycle pain is setting off some inflammation and I'm sensitive to that. That doesn't explain why it gets progressively worse each month. The last time I went back, I ended up going on the pill. The doctor couldn't think of anything else to do for me. The pain was lasting nine days now, and my cycles were getting shorter, 25 days. I needed a breather from the pain and I just wanted to get through the holidays at this point. So, despite the fact that we're trying to get pregnant, I'm on the pill for the next three months.

Today I finally met a doctor who believed me when I said something was very wrong, and confirmed my suspicions. It seems likely that I have endometriosis. We won't know for sure unless a surgery is done to confirm it. Endometriosis doesn't show up on any scans. Some women with just a little bit of endo have extreme pain, while other with tons of endo have little to no pain. My symptoms didn't suggest 'classic endometriosis' as my doctors have been telling me. Unfortunately, their expertise is limited to pap smears, birthing babies, normal pregnancies and writing scripts for the pill. So I finally found a doctor who has expertise in dealing with endo and other disorders.

 It was such a sweet relief to have a doctor take me seriously. Right now the plan is to stay on the pill for a few months and then come off of it and see what happens. It's a possibility that I may have surgery in the spring. We'll just have to wait and see.

But it's so nice now to have a doctor on my side and to know I have options and to get a better grasp on what I'm up against!

It's also a comfort to know there are so many ladies out there with endometriosis. I've met a few in the past few months, and it's always nice to know you're not alone.

And thank you to everyone who has been supportive of me during this time, Jeff, Bridget, and my Mom who has watched Doug for about a 100 hours while I went to the doctors.

For a while, I contemplated taking in a show and tell of what my uterus felt like when I was in pain. Initially, I envisioned a grape fruit and my largest knitting needles. I decided though, that play doh and toothpicks were less messy. 

*No, I don't think that's a real thing. And I don't want to know if it is. I'm not trying to belittle gout either.  I know it's a painful and horrible condition. I just think it's hilarious my doctor was so off target. You have to find some things funny or else you'll never get through them.

**I think more weird pains need to be given German names. I don't think people would make fun of PMS if it had a German sounding "I WILL KICK YOUR BUTT" name. Seriously. Mittelschmerz sounds like pain on steroids.