Just to reiterate what many other women have said, this website is a wonderful and empowering resource. Here’s my story:
I noticed a lot of hair in my tent while camping for 5 days last summer. At the time, I was not on birth control although I’ve been on and off it for 11 years (I’m 27). I got on Apri shortly after for its intended purpose and didn’t notice any change with the hair loss. I didn’t really think much of it until it didn’t stop. I freaked out while on the phone with my mom around Thanksgiving (my family all lives in Connecticut; I moved to Seattle about 2 years ago for my job). I went to my general practitioner and she basically told me, “See a dermatologist, and if its happening there’s not much you can do”. When I saw my family at Christmas they said I looked the same and I shouldn’t be so freaked out; everybody loses hair.
Let me tell you about my hair on a good day: I’ve always had baby-fine hair! I was bald until I was 2 and have never had long or thick hair. My mom and her sister have fine hair too. I’ve always gotten good cuts and color. My dad is balding; he’s 52…but I feel like many, many guys are balding. My uncles are mostly bald but no women in my family are. I can accept thin hair, that’s what I’m used to. It’s just excruciating to lose what already few hairs I have. I don’t have hair to spare!
The dermatologist I visited got an abnormal hair pull and diagnosed me with Telogen Effluvium. He essentially said, use Rogaine, eat an iron supplement and grin and bare it. All my blood work came back fine (whatever that means). I felt relieved for a few days but then decided that I was underwhelmed with his diagnosis and I couldn’t just sit here shedding hair all over the place, so I made an appointment with a female derm to get a second opinion. It’d been going on for 5 months. Believe me I wracked my brain trying to figure out what it could be. I had no major trauma or dietary change. I eat pretty well, exercise, etc. The female dermatologist was a bit more sensitive and her hair pull test was “normal”. She inspected my scalp and said it looks healthy and there is no scarring. She told me the shedding was probably just my body readjusting to the change in bcp (although I’ve gone off and on before and have never had a noticeable problem).
The weird thing is, two girlfriends I met when I moved here had hair loss issues. They both moved abroad last summer and when I emailed them asking about it, they also said, You’re fine, it’s hereditary or stress related. They’d laugh you out of the hair loss clinic. Try Rogaine. Two hair stylists I went to said they couldn’t believe how many women were approaching them with hair loss issues. It makes me wonder if it isn’t something environmental.
Since my two dermatology visits I’ve been getting acupuncture (which makes me feel good but I don’t think it’s reducing the shedding), saw a naturopath (who I didn’t feel super confident in), and a therapist because I’m driving myself crazy being worried and scared about losing my hair. I am obsessed and not in a good way. All of my friends and my boyfriend say they do not notice a difference, but I do and I feel that something is off balance, I just don’t know what. I feel fine otherwise. Sometimes I feel like I want to shave my head and get it over with because every morning I dread showering and brushing my hair and picking hairs up around me all day. It feels like a slow painful death (I know that sounds dramatic). I am overwhelmed by the many possible causes and no diagnosis. It may be TE but it’s been going on for 7 months with no signs of stopping. I’m taking Chinese herbal supplements, iron, and biotin, with no noticeable change. I also used Rogaine a couple times and thought it made my hair look greasy. I use some products by Phyto for thinning hair as well.
This week I have a consultation with William Collier Design, a hair loss salon that styles and outfits people with various hair systems. My mom offered to fly out and go with me to get a wig if I want her too. She is practical and supportive, as are the rest of my friends and family. I just need to feel proactive and to know what my options are if it gets worse. I’m active and don’t want my life to be negatively affected i.e. if I get fake hair I want to be able to run in it. I’m on a Tri-Sprintec, a generic brand of Ortho Tri Cyclen. I wonder if I should go off and use a diaphram just to let my body do its own hormonal thing. I also want to see an endocrinologist and maybe an internist.
I just want to feel positive and hopeful and I don’t want to be consumed by this anymore. Sometimes I’m able to be positive. I think, Well I never really loved my hair anyway. My parents nicknamed me Kewpie when I was little because I was bald and had big eyes (we looked alike). Maybe I wasn’t destined to have natural, luscious hair. Maybe I will just embrace the “wigness” and have fun with that. My life is great otherwise…and my boyfriend is balding too, so at least I have him 😉
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Dear Kewpie ( love that nickname)
Thank you for writing and sharing your story. Believe me you don’t sound dramatic when you say your hair loss has been like a slow painful death. I know that feeling well, and also the feeling of just wanting to shave it off and be done with it already. I was shocked, and not so shocked about your first dermatologist appointment, I simply don’t understand why don’t doctors don’t aspire to become more educated about women’s hair loss and it’s various causes. They should also consider offering Compassion 101 at the medical schools.
We always notice our hair loss before anyone else. I was more open about speaking about my hair loss early on to my family and friends. I even had my boyfriend at the time inspect my scalp for any new possible hair growth, magnifying glass and all! But everyone always told me I “looked fine.” That is so incredibly frustrating when you are trying to find help and essentially someone who will believe you. I had several dermatologists tell me there was nothing wrong and I had plenty of hair. Maybe I should go back and make an appointment with them today and see if they would keep that same opinion.
As female hair loss sufferers we have to be our own detectives and arm ourselves with as much information as possible. A part of that is finding a doctor who is willing to… LISTEN. Doctors don’t know everything and a good one will be willing to listen to your findings about what could be causing it.
As far as getting off Tri-Sprintec… for me it is a bit of a double edged sword. The Tri-Sprintec possibly could be a contributing factor in your hair loss, or it could be helping you to not lose as much hair. Even though birth control pills can cause hair loss from going on or off them, they also can offer protective hair measures in women with androgenetic alopecia, depending on the person of course. This is why a popular standard treatment for female pattern hair loss is Spironolactone (brand: aldactone) in conjunction with a low androgen index birth control pill. For myself, Loestrin FE caused my hair loss, I like to refer to it as the “devil pill,” but it was recommended to be some years ago that getting back on may help to stabilize my hormones, so I did. I’ve been on Ortho Tri Cyclen for about 7-8 years now. I did start regretting that decision because my hair loss started to kick into super overdrive over the last couple years, and I began to wonder if I would have been better off just leaving everything alone. In fact if I could back in time, I probably would do that. But I must live in the present! I just wanted to put that out there so you understood all sides of the equation to getting off the pill.
I think you are doing all the right things, being proactive helps us to regain some control over a very seemingly uncontrollable situation. Acupuncture is great for providing and overall sense of well being which in my opinion creates a healthy healing environment and that can’t be bad. I have not yet seen a therapist through I’ve certainly considered it on more than one occasion. Do you feel it has helped you speaking with a professional about your feelings? I would be interested in knowing any insight the therapist may have provided.
I am unfamiliar with William Collier Design, but would love to hear your experience with them. Its always good to be aware of great hair replacement services providers out there for women. Knowing they exist and knowing we can wear hair that looks completely natural is extremely comforting.
Thank you so much for sharing your story!