I wanted to write with regard to all the women on this forum, and specifically because of a recent post I read from Rosalinda. Her story sounds similar to mine, and I recently had an eye-opening dermatologist appointment that I haven’t had time to write about until now.
Let me start out with my hair loss story:
I first noticed my hair loss when I was 18 years old, 4 months after I started taking ortho-tricyclen lo. My hair had been coming out quite a bit in the shower but I didn’t think anything of it because I had incredibly thick hair. You know, hair so thick it makes the hairdressers cringe when they have to blow dry and style it because they know it will take like, an hour. I wish more than anything I could say the same about my hair today! One night as we were about to go out my boyfriend said he was a little concerned that he could see parts of my scalp through my hair, and asked whether it could be due to my pill. Well I became alarmed by my hair loss and began researching it extensively. I got bloodwork done at two different clinics with everything being normal, but I asked them to switch my pill anyway. I picked Yasmin because it is supposed to have anti-androgenic effects. That was 3 years ago. The hair loss never stopped, and my diffuse thinning kept progressing. I have probably lost 2/3 of the hair I used to have… when I put my hair in a ponytail it is barely the size of a sharpie marker. I have been hesitant to quit my pill altogether because I’m afraid I will go through the “dread shed” telogen effluvium and lose even MORE hair. I also get terrible cramps, heavy, long periods, and acne (my face is pristine when I’m on the pill though). However, I’m not really sure if it was my pill that caused it because I do distinctly remember mentioning in the past that my hair felt thinner and easier to manage than usual (this was when I was about 17, as I was getting ready for a homecoming dance). It is all so confusing and difficult to pinpoint. As trivial as most people think hair is, this has been the most traumatic and challenging experience of my life. Sometimes I have to stop myself and thank my lucky stars that I am healthy and I have a good life and my hair isn’t everything. But some days, hair really does feel like everything.
This month, I hit a major turning point. I had a scalp biopsy done by my dermatologist, expecting nothing to turn up. When I walked into his office 2 weeks later for the results I got a diagnosis I had never dreamed of or never researched. Scarring alopecia, due to Lichen planopilaris. My heart hit the floor. SCARRING… seemed so final, like the death sentence for my hair. My dermatologist seemed a little more optimistic though. He said it’s an infection of the scalp, no one knows how you acquire it, it’s just kind of a freak occurrence (why me??). My scalp hadn’t looked inflamed at all, but he said it showed mild inflammation under the skin when the biopsy was analyzed. Even weirder, lichen planopilaris normally presents itself as a patch of hair loss, rather than diffuse. I am still a little skeptical about my diagnosis, but I am following the protocol: antibiotic (minocycline) and topical steroid (olux foam). Together these are supposed to reduce the inflammation under my skin and help stop the hair loss. My derm also said I could try the Rogaine 5% once per day to try and revive some of my recently attacked follicles. He wasn’t sure if it would work though because I don’t have androgenic alopecia. We shall see. When I left the dermatologists office I just broke down and started bawling. Partly out of relief that I could possibly control the fate of the rest of my hair, and partly out of extreme frustration. I had been shouting from the mountaintops about my hair loss to every doctor that would ever listen, and none of them did anything until now. I shudder to think this could have been prevented.
After using the olux foam for a week, my scalp looks incredibly white now. I had always thought my scalp was just tan because my hair is thinning and it causes the exposed skin/part to sunburn. It now seems that my scalp WAS in fact slightly inflamed, not tan or sunburned. I am still considering experimenting with getting off of the pill, but I’m still really scared about shedding more. I may do it after I graduate college this May… don’t want to be bald in my graduation photos
The moral of the story? LADIES, GET A SCALP BIOPSY. don’t give up, keep bugging your doctors, bug multiple doctors until you get some kind of peace of mind. The best thing I ever did for myself was to keep pushing and being proactive. My hair may not grow back, but at least I feel like I’m more in control of my situation than ever before. My derm wants me to check in with him every month to see if I’m making progress so I will keep everyone updated on how it goes. If all else fails, I found a great wig shop close to me (in Houston) and I’ll just buy one and get on with my life!
Thank you for writing and sharing your story. I never really gave much thought to scarring alopecia, I had read about it in passing while researching my own hair loss, but for some reason I always just overlooked it as I’m sure many women do. I am so glad you told your story and let other women know about your experience and about how getting a scalp biopsy was instrumental in determining the cause of your hair loss. Your diagnosis and cause of hair loss could be the same reason other women are losing their hair. I am sure there are plenty doctors who probably don’t even consider it since most of the time they fluff it off as stress or genetic, and send you out the door with a bottle or rogaine and a lot of confusion. I understand your hesitancy for getting of the pill as I am in the same position as you. I would like to get off of it, but continue taking the pill for fear that I will be thrown in to an excessive telogen effluvium, so for now I will take it indefinitely.
Thank you again for sharing your enlightening and also encouraging story. It sounds like you found the right doctor. I’m so hopeful and optimistic that your hair loss improves with the continued use of your prescribed treatment. It must be somewhat reassuring to be able to pinpoint your hair loss cause, for most women their hair loss causes remain unknown. After reading your story I understand the title of your email. Your positive attitude shines through and I smile when I read your words “If all else fails, I found a great wig shop close to me (in Houston) and I’ll just buy one and get on with my life!” Amen to that.