Hello loyal readers. You're probably trying to read and pronounce the title of my article. It is also known as non-classic congenital adrenal hyperplasia. But for the sake of our brains, let's just shorten it to "CAH". In the middle of January, I got a call saying that I had a mutation in one of my genes that caused me to develop CAH.
Let me back track a little before I explain further.
I have always felt very masculine. I had hair on my armpits at an early age. I started waxing my lip in 7th grade. I had to use extra strength mens deodorant because women's deodorant wasn't strong enough. I have a wide build and broad shoulders that cause me to feel uncomfortable and less feminine in certain clothing. I've always been randomly strong in my arms even though I do nothing to make the muscles stronger.
I recently went to my gynecologist because I had begun to grow hair on my chest a couple months ago. Not just a few stragglers. It was a lot. To the point where I would shave my chest because I was embarrassed. I was always reassured that no one can see the hair but I could see it. And I can feel it. And it was everywhere. My gynecologist told me to come in the next day for a blood test but she didn't think I had a testosterone problem. So I came in the next morning and they took two vials of blood.
I waited about 10 days and the office still hadn't called with my test results. I was getting kind of nervous so I called them and they told me my testosterone levels were fine but my doctor wanted to talk to me about an irregularity that was found. She wasn't available at the time so she called me the next day.
It was a 4 minute phone conversation. (she is a VERY busy woman) She told me I had a mutation in one of my genes and I had something called late onset congenital adrenal hyperplasia (CAH). It was something I was born with but it developed over the years. My adrenal gland doesn't have enough enzyme to produce enough hormone. That's all I really know about it. Like I said, I've had it all my life but it's just popping up now.
But that's actually not true. It's not just showing up now. This is the answer to literally every problem I have ever had with my body. My mom and I were on FaceTime together looking at symptoms of this mutation to see what other problems can be explained by this.
Essentially, this mutation is the reason I started growing hair all over my body, (yes ladies all over) in 2nd grade. This is the reason why my laser hair removal hardly worked. This mutation is why I am always sweating and feel like I wreak of B.O. constantly. It's also why no matter what, my body stays a very similar shape. I could gain weight, I could lose weight, but my body always looks similar to before.
So what now? I'm not gonna die. I'm not gonna lose a limb. It's not like that. I could lose hair on my head though. I also could be infertile. But, that's a different conversation. For now, I will meet with an endocrinologist when I come home next month. My gynecologist said the common way to deal with this is with steroids so we shall see.
I'm writing something so personal on the web because I finally have answers. I finally have a reason why I have always felt manly. There is a reason and I am very happy about that. The only thing that bothers me is that I would've loved the answer sooner.
It's weird to look back on the things I tried to do to feel or look more feminine and ultimately feel better in my skin. None of it mattered because biologically, I couldn't. It didn't matter how many times I got waxed/lasered. It didn't matter how much perfume I put on or the countless times I tried to shave my sideburns. It didn't matter how many times I tried wearing bras and shirts that made my shoulders feel less broad and big. I physically, and biologically couldn't be more feminine.
That's all. I'm okay. I swear. Like I said, I'm not dying. It's just weird to think that there is actually something wrong.
I could go to my endocrinologist and she could be like nope that's not it. It's something else. But I guess there will be another post then.
I'm not gonna let this get me down. I technically am biologically stronger than the average girl.
(this looks like a memorial to myself I apologize)
you are brave & amazing for sharing this, i know you are not alone!! i love you!!
ReplyDeleteTo my Special Little One....I am so proud of your strength! Thank you for sharing your story. You know I think you are amazing and I always will. I am happy for you that you have answers. I hope only good will come of what you have learned and what you will learn on this journey. My thoughts are with you.....
ReplyDeleteHello love your story I was born with CAH and had done put me to my worse then I get better is there a way we can get in contact with each other and talk about what we deal with on a daily basis im 43 and still to this day struggle to fund a right doctor here in fl
ReplyDeleteWhere in FL are you located? Zip code. I am in the 32534 area
DeleteI was diagnosed at the age of about 40, and I was the same as you. Being ladylike takes so.much more effort than anyone can imagine. I did have 2 kids, but it took forever. Relationships are hard because of CAH.My salt cravings are so serious and dehydration is serious matter. I am 60 years old now and it's hard. Naomi from Pensacola Fl.
ReplyDelete