My health history is an odd one. As far as most of the paperwork says, there is absolutely nothing wrong with me. However, I haven't been "right" in 15 years, or almost half my life. The official diagnosis is fibromyalgia, and every time I read anything about it, it reads as my life story. So I'm ok with the diagnosis. However, it seems that about 75 to 80 percent of doctors in the world (or at least in the sphere I've been in contact with) don't buy it. Not that I have it, or even that it exists at all.
I'm lucky. I went to college, I've traveled, I've gotten married, and I've held a good, steady job for 10 years. Those are all things that some fibro patients don't get to experience, so I know that I'm lucky. I go long periods of time where my pain doesn't interact with my life and the enjoyment of it so that's good too. However, I'm pretty sure that normal people don't do all those things while thinking about how badly their legs hurt.
To look at me, I don't look sick. That's a good thing. There have been times in my life where that wasn't the case. My husband has never seen me in a super flare up (and we're hoping that it stays that way forever!!) and I've actually been medication free for two and a half years! (Disclaimer - I'll admit - I've occasionally thought that I would pay a lot of money if someone would give me some meds RIGHT NOW.) The last time I stopped taking meds (It was Cymbalta) I was so sick for a month and a half from the withdrawal that I like to tell myself I'll never take them again. Of course it'd be nice if I never had to make that choice again ... I have been working through the pain by going to bed early and being a hermit for the last year or so, so I've proven it can be done.
So anyway, along the road to the fibromyalgia diagnosis, we discovered that I do NOT have: arthritis of any type, a nerve problem, MS, a brain tumor, heart problems, bone problems, lupus (it's never lupus!), lyme disease, interstitial cystitis, IBS, or hip problems. Those are all great things to not have! :) But since I am used to being in pain, I don't go to the doctor at the first different twinge of discomfort. This is somewhat ironic, because to many it appears that I am a wimp that has no pain threshold at all. I used to tell my doctors that this fibro pain was a 10. I'd always answer 10 because I couldn't imagine being in more pain than I was. Then I had a kidney stone. Even though I was on heavy medication, I clearly remember telling the nurse that I should call my rheumatologist and apologize because I had no clue what a 10 pain really was!!
We got married in the summer of 2008. I stopped taking the Cymbalta then, because the doctors recommended going off it for quite some time before attempting to have a baby. We didn't want to have a baby right away, but we were 29 when we got married so we didn't want to wait forever. I stayed on the pill until the spring of 2009. At my yearly visit that spring, my PA recommended that I go off the pill just to get my cycle regulated. My period started in middle school and then came rarely throughout high school and college. Often times it was just a few times a year. Eventually I started the pill just to be regular. Even on the pill, my cycle was a little longer than 28 days and so she wanted to see if after all those years we had tricked my body into being somewhat regular. Suprisingly, while I didn't immediately jump to regular 28 day cycles, I was pretty regular.
In October of 2009, I started having pelvic pain out of nowhere. I was at the book fair the first time it happened. I sat down after helping someone and OUCH. It was during my period, so I shrugged it off as being that. By that night, I was in so much pain that I couldn't use a tampon anymore. I actually had to go to the store and buy pads because I never ever use them. The rest of my period was pretty painful, but when the period went away, so did the pain.
6 weeks later, Black Friday morning, I woke up at 3am in extreme pain. It was far worse than October and not during my period. It felt more like a kidney stone. I actually woke my husband up to put him on notice that we might need to go to the ER to wait out a stone. Walking around alleviated the pain, it eventually passed, and I got my period shortly thereafter. The pain didn't go away completely though, and I decided it was time to see the doctor.
In December, I visited my regular PA. She recommended bloodwork and an ultrasound to check for cysts. Of course my ultrasound was on a "no pain" day, so it showed nothing. The blood work had no issues. When I returned to get my results, she suggested I move on from her to one of the docs. The doc did an exam, found nothing abnormal, and suggested I see a doctor that deals with a different system in that part of the body.
That sent me to a urologist. He did a CT scan of my bladder with contrast, which showed nothing wrong with my bladder. After a few exams and poking, he decided he wanted to do a cystoscopy and check for IC. The surgery was put off several times because of the crazy 2010 blizzards, but when I eventually had it done he deemed me a "classic case of IC." Those familiar with the disease know about the SERIOUS dietary restrictions with that illness. It was going to be a major change of life - so I got a second opinion. When you live near Baltimore, that second opinion often comes from Johns Hopkins. The director of Women's Pelvic Health down there un-diagnosed me. He claimed that people with jobs like me (teachers, also truck drivers) who have to "hold it" all the time will always get a false positive on that test. He also pointed to the fact that I don't go to the bathroom all the time as a sign of not having the disease. It took several months to feel right after that test/surgery. But overall the pelvic pain seemed to be gone.
Fast forward to November 2010. The pain came back again, just as bad as that very first day. Interestingly enough, it wasn't anywhere near my period but rather the time I'd be ovulating. In addition, I had some GI bleeding. I remembered the advice of the GYN last year and called the last doctor who has a specialty in that part of the body - a GI guy. He wants to do a colonoscopy which is scheduled for December 2010.
I also re-visited the GYN. Since the doctor I saw last year has since moved, I saw a new-to-me doctor. She read over my medical records from the urology stuff last year and asked me questions about my pain. She even believed in my fibromyalgia! (Instant trust right there!) When she offered to put me on the pill to take away the ovulating and the periods to see if that worked, I told her that we'd been trying to have a baby for a year and a half now, minus the months we made sure I wasn't pregnant for surgeries.
She went into instant business like mode. She was not comfortable with the amount of time we had been trying with no success. She talked about endometriosis and fibro being friends and causing problems. She said she could spend time doing trial and error, but that she felt more comfortable sending us to the fertility guys right away. She recommended calling asap and getting in as soon as we could. Her urgency was a little scary, but when my period came the next day (right on cue) I called and made an appointment. And that's where we stand....
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