Back in the Fall, I finally got a PCP. Mostly because I was told I had to go to Physical Therapy. And before going, I had to see a PCP. I was able to go to one PT session. Then I called my Dad's old PCP. And they got me in. Right away. Because I had been on a 2 year waiting list...for a PCP. The day I went, my Mom also had to go. We have the same PCP.
I could barely move. And he insisted on giving me my annual physical. Somewhere between asking me to sit on the bench and testing my reflexes...he realized something was seriously wrong. My appointment changed real fast. And he was giving me referrals to 12 different specialists. Then he sent me to have X-rays.
Thank goodness, that was in the same building. By the time I got there, I could barely stand. Much less walk.
There were real tears, the second the guy told me I needed to completely undress. I could barely move. And he asked if he could get anyone for me. Or if I wanted a female tech. Nah! But can you help? 90 minutes later, and a shaking body, I was finally done!
A few weeks later, after I had made a million appointments, endured PT, and was referred to Aquatic Therapy...I finally noticed the referral to the gynecologist. Not going to lie here, it has been years since I went to the doctor. But when I lived alone...and away from here...I was up-to-date on everything! I saw every doctor you needed to, annually. I went for blood work. Never missed a physical. Then I moved. And my needs became the last thing I worried about.
The day I went to see the gynecologist, I was having a tough day. Could barely move. And wasn't 100% sure why I was there. I about had a panic attack, when I went to sit in the waiting room. It was pure chaos with about 40 kids running around screaming. My flares were at the worst point so far. I had seen my pain specialist the day before...and had gone to PT.
I was super grateful when the nurse called my name. Just 2 minutes after I sat down. A full 30 minutes before my appointment. I got the same old questions...and then the nurse handed me the paper gown and drape. Told me the doctor would be in, in about 15 minutes.
OK. I figured it was just a basic gyno exam. No problem. I tried to get undressed. But by the time the doctor walked in, I had only managed to get my pants off. So she came in and sat down. She handed me a blanket and tried to make me as comfortable as possible. Then she asked some questions. And was a little alarmed by my answers. She also pulled up my file and studied it for about 15 minutes.
After a few minutes, she told me that I didn't have to have this exam. Not at this time. She could see how much pain I was in. But she was also nervous about the amount of pain I was in. And because I hadn't yet received a diagnosis. It was all up to me.
Then things got real. She told me what she thought it could be. And some of her ideas, were similar to my pain specialists. I cried. Uncontrollably. Not because I was upset for myself. Or scared for myself. I was panicked for my Mom. If something happens to me, what happens to her? I'm her caregiver. She is diagnosed with cancer. Who would take care of her?
We sat and talked. And my doctor promised me, no matter what it took, she was going to help me. She made a plan. Called other doctors. And then took my hand. Looked me straight in the eyes. And promised that she wasn't going to give up on me. We decided to have a basic exam. And unlike so many other doctor's she HELPED ME. Helped me to undress. Talked me through an exam, that I'd had before. Helped me to dress. And even wheeled me to my car. Asking me, if I was sure I could drive.
She also prescribed medroxyprogestrone. 10mg for 14 days. Because it had been nearly 10 months since I'd had a period. I think. Like I'm 98% sure, I'd had one in December 2017. And this was October 2018. She told me, it was most likely due to whatever was going on with me. Pairwise. So we'd try the medroxyprogestrone. And see what happens.
I picked up my prescription. And went home. Pretty sure, I slept for 6 hours. My body was so exhausted! I got a call the next morning. To let me know, my basic bloodwork and the results to my exam were all normal. Also, my new doctor let me know, that she got me 2 more appointments. With a geneticist and a specialty oncologist. It was that afternoon, that I finally read the side effects to these pills. And I got nervous...
I put that bottle in a drawer...and didn't look at it again. For a looong while. My doctor called me right after Christmas to ask me, if everything had worked out. And I told her...I hadn't taken my prescription. When she asked why...I told her that epilepsy ran in my family. And one of the side effects was seizures.
So we ran a couple more tests. And everything came out OK. I promised to start the prescription. I took it in January. No real side effects. I was super tired. And about day 10 of 14 my stomach got really swollen. Like I could have passed for being 30 weeks pregnant. Also, my groin was super swollen. But nothing. No period. Nada!
In the last couple of weeks, I've endured 2 rounds of medroxyprogestrone. It was difficult. But I agreed to try it. My health battle has been something else. And if I can rule out, a few other possible diseases...why not?
As crazy as it sounds, I'm so grateful for this doctor. My PCP won't believe me. Although, he saw me during one of my worst flares. This new doctor has been a total miracle. Because honestly, I shouldn't have seen her in the first place.
Because when you go for your annual exam, your PCP should do your basic gynecological exam as well. Now I'm thinking because I'm about my PCP's age, and I've known him for so long, plus the amount of pain I was in that day...he sent me to a gynecologist. Because my Mom also had a physical...and he did the entire thing!
But it has been a blessing. My doctor calls me about every 2 weeks, to see how I'm doing. She makes sure, I'm not getting worse. My PCP, denied me a brace for stability and pain management. Even though I've fallen about 10 times. After I got hurt pretty bad in November, he refused to see me. And when my PT and AT had to be renewed in Decembers...he refused to renew it. But this doctor, is doing everything in her power, to make me OK.
So I'm just grateful for a good doctor. On my side. My pain specialist is also AMAZING! With these 2 ladies, I know eventually we will find out what is wrong with me. My pain has not gotten better...I've just learned how to deal with it better. I don't know how to really explain it. But it feels a lot like when a car alarm goes off. It is super annoying the first 10 minutes. Then you can hear it, but it doesn't change in volume. After an hour, it's still going, but it's not quite so crazy. Because my pain is always here. Sometimes it's out of control...other times, it's just here.
For now, we're going to try IVF level hormones. To see if we can get me to have a period. It's been over a year now. With nothing. Since I was a cheerleader, in my early teens, I've not had a very steady period. Honestly, about every 3 months was my norm. And nothing too heavy. Like once every 18 months, I'll have a heavy period. Other than that, it's light.
Even though I don't bleed every 28 days. I do feel PMS type symptoms. Like cravings, fatigue, and some mild bloating. But no actual period. Why is this so important? I have just over 200 diseases that they are currently testing for. We are trying to figure out, why suddenly I am in such a crazy amount of pain. 2 of my Aunts passed away from ovarian cancer. My Dad and my Uncle both had colon cancer. There are some other things that would be ruled out, if I can get a period. So I'm all in.
I start my next adventure, next week. I'd be lying if I told you, I wasn't nervous. Because I am! I don't know what to expect. And this is like a last ditch effort. Let's see how it goes.
In the past, I was diagnosed with PCOS. And when I was 20, underwent an emergency surgery. Kind of relating to the same issue. So I've been through my share of these things. I'm just praying, that we get some answers. Either way. Because I really can't continue living like this.
XOXO,
Desiree
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