Three weeks ago, I was diagnosed with “non-relaxing pelvic floor dysfunction” concentrated around my urethra.
The last ten and a half months have been a real BATTLE. In late November, on the tail end of NaNoWriMo, I started having UTI like symptoms in my nether region. The symptoms were similar, but different. I’ve had a fair share of UTIs in my younger years so I know the telltale signs. I gave it about a week, and there was no change. So I went to urgent care and tested negative for UTI. They automatically assumed it was a yeast infection, and I believed them, even though that didn’t feel right either.
What ensued was a ten month battle of mis-diagnosis to mis-diagnosis. In that time I did get hit with a REAL UTI at one point, after not having one for about five years. I attribute that to the stress of an undiagnosed illness. Anyway, I was mis-diagnosed with BV and yeast infections over and over. Even though hardly any lab tests were run or showed positive. Doctors scratched their heads and said “What else could it be?”
Burning while urinating
Frequent urge to urinate
Pain that flared after sex
Bless my dear husband for being SO patient with me. I’m lucky to have him.
In the months from February to July, I took SIX different rounds of antibiotics. My body HATED me by then. Antibiotics are the devil. Oh, and I can’t even count the number of Fluconozole yeast infection pills they kept putting me on. Yet, my symptoms NEVER got better. I was beginning to believe I had a MEGA resistant strain of yeast or BV and that was absolutely gutting. I was so frustrated, anxious, EXHAUSTED! Turns out, I never had those. Ugh!
Two GYNs later, I was referred to an amazing (amazingly expensive) specialist at Emory university. Her initial hunch was that I had “Painful Bladder Syndrome” most heavily concentrated in my urethra. It was not a surprise hearing this, as my mom has been diagnosed with it, and these kinds of problems run in my family with us females. I was pretty heartbroken, because this is a life-long condition. You’ve got to do an elimination diet and cut everything acidic (Including glorious coffee), plus whatever trigger food is likely causing the inflamatory reaction. I don’t do diets very well. I did gluten free/dairy free/egg free for a year in 2016 and don’t know how I did it. It was awful andI never felt any better.
Anyway, before the diet, my specialist wanted to do the dreaded “scope” test to have a look inside my bladder and urethra. Holy BAJESUS it was expensive. So much for health insurance. Do I even have health insurance? Sure doesn’t feel like it. But, you can’t put a price on comfort of life or your health. So I agreed to the test, but...get this: At the time of the test, I had seen a miraculous reduction in my symptoms.
Because two weeks prior I threw out my lower back and had a course of muscle relaxers. While I was on the muscle relaxers ZERO nether region pain!! Say whaaat?! I was able to hold my pee for like hours and hours. Just like I used to. Just like a NORMAL person. I didn’t have to pee every hour. Ugh.
When I told the specialist, her eyes lit up. She said, “That explains it!!”—Facepalm—“I know what you have. But let’s do this bladder test to rule it out. To be aboslutely sure.” So we did the test and it was excruciating. It’s not supposed to be. For normal ppl it’s not. But when your muscles around your urethra are all clenched up, and it shrinks. WOZZA! That was no fun. Ten minutes later she said, “Your‘re bladder and urethra are healthy as can be! But, your urethra is slightly constricted.” Which basically means it’s tighter than normal. Because the muscles are not relaxing. Doh!
She looked at me and said, “You’ve got non-relaxing pelvic floor dysfunction.” I had already heard of and researched this. Thanks Dr. Google. “So, when and if you’re ready, we can refer you to a physical therapist.“
Hearing that diagnosis was the BEST thing that happened to my health in those ten months. It was the highlight of September. I wasn’t dying!!! Thank the baby Jesus. I didn’t have some incurable disease! I didn’t have some incurable infection! I just had tight muscles that had forgotten how to relax!
So what’s happening? Some people hold their stress in their shoulders. Some in their neck. I was holding mine in my abdomen. Specifically, the muscles around the urethra. This repetitive training causes the muscles to forget HOW to relax. So even if I felt like I was relaxed, it was unconscious. And you can’t just then go and relax them. It doesn’t work like that. There are all kinds of breathing exercises that help though. And muscle relaxers. Why does it hurt? Because the constant tension causes a build up of lactic acid that gets released. Acid. Great. No wonder it burns.
Back in November I was stressed TF out. My sister had a wedding coming up that I was dreading. And I was trying to get a novel written. Plus work. Plus, I tend to be an anxious person already. So that was the perfect storm. After the symptoms appeared, I got stressed about being undiagnosed. So basically I was stressed about my pain, which in turn was making more pain. It’s a vicious cycle.
I was already feeling about 70% better when I got my diagnosis. So those words allowed me to make a NEAR full recovery. I haven’t needed to see a PT yet, and hope I never have to. Now I know that when I’m feeling a flare-up of pain down there (which I am while I’m writing this because sharing something like this makes me anxious) it’s because SOMETHING is making me anxious. It has become my ALARM system.
In a way, that’s a great thing. The pain isn’t great, but knowing that something is bothering me is. As a person who suffers from stress and anxiety disorders, as a person who leads an extreamly high-stress lifestyle, working in the big corporate world as a Senior Design Engineer and a second job as an indy author, I am ALWAYS busy.
But having this alarm system allows me to stop and say, “Okay, what is bothering me?” And address the problem.
For example, my husband and I were in the Taco Bell drive through a week ago and the pain hit full force. I stopped myself and said “Why?” And I realized it was because the drive through line was so long that waiting was making me anxious. I had to take a step back and say: “You have no where to be right now. There is NOTHING to be anxious about. It’s a damn drive through line! It’s not like you’re public speaking.” I immediately let it go, and the pain disappeared.
Distractions have been the best thing for healing. When I’m busy, I’m not anxious because I’m not thinking about it. So, here I am. I’m doing MUCH better. I’ve had days with ZERO symptoms over the past couple of weeks. And I’m not stressed about it any more. That alone means that I’m going to beat this.
Not everyone diagnosed with Non-relaxing PFD is this lucky. It’s not a well-understood issue yet. But doctors are learning more. In my case, having the diagnosis is the biggest step towards healing. And after ten months of CONSTANT pain, I feel I can finally start living again. Not knowing is the WORST.
If you suffer from chronic pain/illness, please know that you are not alone. I pray that you get the answers and relief that you seek. And always trust your gut. I knew that these doctors were giving me the run around. That there was a deeper problem. I should have requested a specialist four months in. So, see a second and even a third opinion.
Thanks for reading!