Hi girls,
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!
**********************************
Dear Andrea,
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.
~Y
Technorati Tags: hair loss, olux foam, scalp biopsy, scarring alopecia
November 2nd, 2007 at 4:38 pm
I’m glad you found a doctor that might know what he’s doing. I’ve had the same problem with doctors - all of them sort of dismissing me, and none of them really knowing much about hair loss. I had hair loss when I was on ortho tri-clycen (I was on it almost 10 years), and I stopped taking it. I was off it at least a year, with no changes to my hair loss, so I started Yasmin. It’s been a few years, and my hair loss is the same, but the Yasmin really helped clear up my acne, and improved my mood. If I went off Yasmin, I highly doubt my hair loss would improve, and I’d probably have a dread shed, and get the acne back.
I had never thought much about scarring alopecia either, since I don’t see any physical signs on my scalp of a problem. However, I do notice a few pink/red circles on my scalp that seem to always be there. The last Dermatologist I went to prescribed me Olux foam as well! He said my scalp appeared slightly inflamed, and he also gave me some sort of special shampoo. I used them for a few months, and the doctor said my scalp looked better, but because I saw no changes in my scalp or hair loss, I thought he was sort of making things up to make me feel better. Now I’m wondering if I should go and have a scalp biopsy since I’ve never had one before.
Hopefully the new treatments you are on will really help!
November 2nd, 2007 at 9:45 pm
Jeni,
I really recommend the scalp biopsy. Scalp problems were the VERY LAST thing on my list that i expected. I had no scalp problems at all, I just had the scalp biopsy done because I was desperate, but I never thought anything would come of it. So you can imagine my shock when I got the diagnosis… if anything, it will allow you to narrow the field and rule out any kind of infection or inflammation. Don’t give up girls!
November 3rd, 2007 at 5:54 am
I recently had scalp biopsy for hair loss occuring during summer, and received dx scarring alopecia. Md said cause was unknown, but maybe because of chemical usage. I am afro american and have been using relaxers in hair since about age 12 i am currently 35. Hair was always thin but since last november crown area started getting really thin, during summer got worse, so i bit the bullet and cut hair to shortest part where it had broken. hair is like a mini afro, i used to have medium length bob hair. I also was have began using rogaine 5% and ocuflox. Now there are 2 family members that have hair loss, but my pattern is different. As you all know a womans hair is her glory, and i am trying to remain positive, for now i just wear wigs, and actually today am going to check out a new wig called lace front supposingly the stars wear them like tyra banks etc. I am happy for this site and i will try and keep u posted.
November 10th, 2007 at 6:43 pm
hi everyone,
It’s been about 3 weeks now, and of course it’s much too soon for any regrowth to be seen, but over the past week or so my shedding has decreased dramatically!!! now, i hesitate to say this because i don’t want to jinx myself, but i thought maybe it would give some of you a little hope! reducing hair loss is the first step of the recovery battle, and i’m just praying and hoping and wishing that i haven’t spoken too soon and my shedding stays low. usually when i get out of the shower and comb my hair i’m used to seeing about 20-30 hairs in the sink or on my shirt (which seems like a lot when you don’t have much hair to begin with!). yesterday and today there were maybe 4-5 hairs. i’m really hoping this treatment helps me keep whatever hair i have left, and maybe regrow some of the hair that hasn’t been damaged by scarring too much. i’ll try to keep updating you guys, and until then please keep me in your prayers! and i will do the same 
hope everyone is having a good hair day!
i just wanted to give a little progress report on how my treatment is going. I am still on my birth control, but I’ve been taking the minocycline (antibiotic) twice a day, and using the olux foam (topical steroid) once a day after i get out of the shower. I’ve also been running a little experiment and using 5% rogaine on a tiny area of my scalp to see if anything happens. theres no point in slathering tons of rogaine all over my head if it’s not even going to work… hence the experiment
-andrea
November 11th, 2007 at 12:57 pm
Hi Andrea - Congratulations on your decreased shedding!!! That is so awesome and so good to hear. You are very right when you say reducing hair loss is the first step to the recovery battle and I’m happy to hear about your recent victory. Only seeing 4-5 hairs! Wow! I’m like you, I hate to jinx myself. Yesterday my fiance was saying that he could see a visible improvement in my hair and I said I didn’t want to talk about it or jinx myself
Thank you so much for sharing your recent success it does give other women hope
~Y
November 26th, 2007 at 7:39 pm
Andrea,
I am 19 years old and am experiencing a very similar story to yours. I recently moved away to college and suddenly started loosing a TON of hair. After weeks of stressing over this, my sister in law took a look at my scalp and noticed red cirles with some flakey skin. TODAY i went to my dermatologist and she perscribed me Olux foam and recommeded the 5% rogain as well. I just used the Olux foam for the first time and i think it made my hair fall out MORE. but i’ll stick with it and try the rogain out as well. I really hope i am able to regrow my hair, as i had very very thin hair to begin with and loosing it has really made it a lot worse.
Thank you for your story. Keep us posted!
Blessings,
Amanda
November 27th, 2007 at 9:46 am
Hi Amanda- (and everyone else!)
Best wishes,
I am a 19 year old college student as well. I have had alopecia for about 9 years now and wanted to let you know that if you ever need anyone to talk/vent to I am always available and can absolutely relate to you. I have tried both the Olux foam and the rogaine. Of the two I found the rogain to be more helpful.
Please keep us posted on your results
Kayla
November 29th, 2007 at 7:59 pm
hi everyone,
wish me luck!
another little update at the 1.5 month mark: my shedding has stayed low (about 5 hairs after brushing after a shower) and i saw my dermatologist last monday. He is keeping me on my antibiotics for another 6 months or so, and attempting to decrease the dose of the olux foam gradually. Both of these are intended to keep my scalp inflammation down for who knows how long. My derm says that lichen planopilaris is kind of unpredictable and not fully understood, so we have to just kind of play the treatment by ear. I haven’t seen anything yet (I wish hair didn’t grow so slowly!), but I’m really hoping that I can begin to see some regrowth in the next few months… keeping my fingers crossed!!! After 3 years of losing my hair i’m hesitant about being optimistic, but since my shedding has stayed low i’m cautiously venturing out of my hold of pessimism
andrea
November 30th, 2007 at 2:43 pm
Hi Andrea, That is such good news. 5 hairs after brushing and shower, Congratulations! I still dream about that day myself
It really seems you’ve found the right solution to your hair loss and I couldn’t be more happy for you. Be patient with the hair growth, it does take forever and a watched pot never boils, I’ve frequently stared at my scalp looking for new hair growing in. I even looked to compare thickness to the other hairs.. crazy.
I’m really excited for you, stay positive and keep us posted!
December 2nd, 2007 at 2:07 am
oh i forgot to mention that i’m also alternating between nioxin and nizoral (non-prescription) every other day… in case anyone would like to know.
January 7th, 2008 at 7:30 am
andrea-which doctor in houston did you find was useful? also, which wig shop? i am looking for a dermatologist that will specialize in this matter, and they are hard to come by. thanks.
January 9th, 2008 at 9:02 pm
hi tracie,
actually the doctor was in austin (I go to the university of texas) and his name is dr. schaefer with the austin dermcare clinic (www.austindermcare.com). the wig shop was in houston ( my hometown) and the website is http://www.bethelwigsonline.com/Home_Page.html
they have some very encouraging client photos and carry lace front wigs as well… let me know if you need any more info!
January 29th, 2008 at 1:49 pm
HI Andrea
I have been arguing with my dermatologist for months to try to do a scalp biopsy and finally tomorrow she has agreed to do it. She says that she can’t see scarring so it is pointless to do a biopsy but I am losing my hair very fast. It started in May and now it has fallen out out to wear I can see my scalp on certain areas. Just curious did you ever going to a dermatologist and they said it didn’t show scarring when they were just looking at it? Thanks for the updates your story is encouraging.
February 1st, 2008 at 5:34 pm
Please don’t believe that nonsense about not seeing any scarring. If a dermatologist tells you such, it’s time to get a new one. The scarring is not on the surface of the scalp; it’s the follicle that is attacked. Last time I checked follicles aren’t visible on the scalp surface.At best, all you might see is some scalp redness. If I had only been as wiser 5 years ago when I encountered a similar dermatologist who simply told me the usual story about how normal it is to loose a certain amount of hair; she simply cultured my scalp for a fungus, gave me a topical steroid and sent me home. The culture came back negative, so the treatment stopped–if it had been a fungus the steroid cream may have caused more damage. My point… So many dermatologists have no clue about hair loss and simply do nothing but watch you loose more hair. I have cicatricial alopecia and since it’s been 5 years before a dermatologist finally (one out of 6) performed a biopsy and started the appropriate treatment, it is unlikely that my hair will grow back or stop falling out.
Here is an excellent website to visit which will tell you all about scarring alopecia: http://www.carfintl.org/faq.html . Please get educated and become your own advocate. Even though I have this disease, I refuse to give up. I’m still searching for a new dermatologist as my current one has given up on me. She said she has tried all of her tricks on me and nothing seems to work. So, clearly it’s time to move on. Well, good luck and make sure that you when you see your doc you go armed with knowledge and suggestions for your care. Be sure to take a list of all of your symptoms—i.e. itching, burning, tingling, pain, etc. One last thing…Every dermatologist I saw had the same message: You have a lot of hair so I don’t think you’re loosing much and you won’t go bald. If I could only send all of those jerks pictures of my diffuse hair loss–you can now see my scalp; balding is on the horizon. And to think, I believed “The great doctors.”
As a nurse, I have loss complete respect for a lot of doctors, especially dermatologist, and I am now on my own mission to research and beat this disease. There are, however, some great dermatologist out there, I just haven’t met them—most are doing research or are too far away. Well! That’s all from my perspective. Sorry if I sound jaded, but as you know, hair loss is devestating. Good luck!
February 2nd, 2008 at 4:06 pm
Thanks for writing Lori! My scalp biopsy was done on Wednesday and I am now awaiting the results. She once again told me that this was a waste of time but I said I didn’t care I wanted to know what it was. I wish they would look at us as people and not just another number. I feel like saying to her if this were you you would be the same way wanting to know how to make it better and to find out what it is. Thank you for all the info. I will look on that website and learn more about it. So if it does come back that it is fungal then if they give you medication to treat it does the hair grow back sometimes? Also I do have itching and burning in my scalp sometimes. What does that indicate usually? I also heard the same comment your hair is thick so I am sure no one can tell that you are losing it! I cringed when she said that. She had no care in the world about me or trying to help me with my problem. Just wanted to rush me out of the clinic. Thanks again for all your help and knowledge! I really apprecaite it!
February 14th, 2008 at 10:17 am
Hi Tiffany,
Lori is right, your derm should be exhausting every avenue of investigating your problem, because my derm didn’t think it was scarring either but thought the test would be a good idea anyway. He and I were very surprised at the results of my biopsy and diagnosis. Initially my scalp had not seemed red or inflamed, maybe just a little pink. But after using the olux foam and taking the antibiotics for a short time I realized that my definition of a white scalp had been wrong! My scalp started to look ridiculously white (yay!). Lichen planopilaris is chronic, so it won’t go away but it can be treated. My derm put me on an antibiotic not to cure it but to keep inflammation down and keep the rest of my hair in my head. Last time I had an office visit he tugged on a few sections of my hair and ran his fingers through and nothing came out! whew! I think I am still slowly improving, although I have to face the fact that I will never have a full head of hair again. Please keep us posted on how your test results came back! I will try to keep everyone updated on my progress… please cross your fingers for me!
Best,
Andrea
February 27th, 2008 at 1:24 pm
Hi Ladies!
I am so happy to have run across this website and hear all of your comments. Like Andrea I have always had a head full of hair that every hair stylists commented about. But, about 6 weeks ago I started having serious burning and pain on my scalp and suddenly noticed my hair was looking thinner. I went to my doctor who said he noticed no signs of any kind of alopecia but that he would send me to a dermatologist to make me feel better with a second opinion. When I saw the derm I told her my concern about my hair thinning and that I was worried it could be serious. She did a pull test on one spot of my scalp, didn’t even bother to look at much of my scalp and told me not to worry about it until I started loosing close to 500 hairs at a time. What? I’m trying to stop that from happening not sit by and wait until the damage is done. I asks about a biopsy but she told me it would be pointless as she wouldn’t know where to biopsy because she saw no obvious irritation. She basically said we’d treat the symptoms of the pain & burning with Nizoral, Luxiq foam & some oil. Contact dermatitis was her diagnosis. While the “symptoms” have lessened my hair loss has not. Just when I wash my hair and comb it out I’m loosing 100 hairs and my hairline is becoming really thin. I keep looking at old pictures of myself to see if I’m imagining the hair loss, I don’t think I am. After reading you’re comments on here, I think I’ll go back to my family doctor and asks for a referral to a new dermatologists. Any other suggestions from you ladies would be welcome. I’m trying not to freak out to much, but when you’ve been the girl with the fabulous head of hair & all of the sudden it starts disappearing and no one believes you, it’s scary!
Fondly,
Heather
March 3rd, 2008 at 1:06 pm
hey beautiful ladies..
we all have similar situations and it feels good sharing and reading stories. I came across this webbpage today and it was today that I was diagnosed with scarring alopecia - the doctor did not even do any scalp biopsy, glansed at my bald patches once and was ready to prescribe me some corticosteroids.. Somesthing is wrong! About 5 years ago i was diagnosed by another dermatologist with alopecia areata and she recommended as well the CS, however, with no result. Tomorrow I will talk to my professor of dermatology and ask for a scalp biopsy.. clearly there must be something in this “nothing”..
I am devestated and so scared, very scared.. I dont want to loose my hair which has been a very good feature of mine since my childhood.. For some ppl this may be about vanity, but I can´t describe the pain.. Just to sum it up: it hurts mostly to know that its an unknown cause and not under my control..
i´ll keep you girls updated after my scalp biopsy..
best wishes always!!!
March 4th, 2008 at 8:06 am
Today, I got to see my professor in dermatology and he ordered me an appointment for a scalp biopsy for tomorrow. Since i live near by the university hostpital I got to stand face to face with my first dermatolgist who diagnosed me with scarring alopecia without any scalp biopsy, and I saw the shame in her eyes!! She knew she should be ashamed of herself for not being careful and for perscribing me medications that could have made my conition even worce. Felt good to know that my professor had a “talk” with her.. maybe next time she will think twic before sending me off to the pharmacist a.s.a.p..
I am just so happy that i came across this webbpage in time .. a real blessing.. thanks to the determination of people like andrea, i was inspired to do the same.. don´t give up! no matter what, don´t give up..
write to you soon..
March 12th, 2008 at 12:16 pm
I had a diagnosis of scarring alopecia due to discoid lupus. I’m a 50 year young married woman. My hair was never thick but now it’s so thin. I have a great specialist at Yale-New Haven in CT and she has me on clobetasol 5%. The top of my head is burning red with pimples and I have approximately 6 bald patches ranging from small to not so small. Fortunately, I’m able to conceal them with hair products, hairstyle and hair spray. Sucks!! So, does anyone have any idea how long this will last, will I lose all my hair and when can I expect to feel like a “normal” woman again?
I’ve been on the internet since I was diagnosed. I too will search until I find some kind of “cure”. I can’t understand how in this day and age, there’s no way to control my burning, pimpley and balding head!! If I sound angry, I’m sorry. I have some days that I forget I even have a problem. My scalp feels good, not many zits and my hair stays in place. Then I wake up the next day and I’m in pain.
I appreciate any feedback or friendship…
May 7th, 2008 at 12:23 pm
Hi ladies!
I’ll start by saying that Andrea’s story is such an inspiration. I never knew (prior to my own hair loss problems) just how persistent you must be when trying to get a diagnosis.
I am a 23 year old female and have been noticing a LOT of hair coming out in my brush, shower, or even when I run my fingers through it (I have a hair pile in the car!) I have been on birth control pills (Levora) for about a year but just switched to Ortho-Cyclen a few weeks ago because I learned of Levora’s high androgen potency (I wish my old doctor had told me about the side effects before prescribing them to me..) Anyways, went to a dermatologist today hoping to get some answers. They drew some blood to run some tests, and I go back in 2 1/2 weeks to get the results. I asked what we would do it it came “normal” on everything, and he only told me Rogaine but said he could do a scalp biopsy if I wanted. Are the biopsies painful or do they leave a bald spot in your head? If anyone has undergone one please let me know
I can’t begin to describe how depressing and frustrating this has all been… I have lost SO much. Don’t give up and remember count your many other blessings!
May 7th, 2008 at 12:34 pm
Also, I have a question about the scarring alopecia:
When you were diagnosed, was it just the top part of your head that wasn’t “white” or was it all over? My part is a little red/orange but I’m not sure if it’s just the sun because the other areas I can see aren’t really colored.
I can sympathize with a lot of you on here.. my hair is still “normal thickness” according to most and when my md did the hair pull test, nothing came out, but then when he is gone I brush it and 100+ hairs come right out form the root with no problem. I don’t want to be seen as a hypocondriac or crazy, because I really do have a hair loss problem, I just don’t want to wait around until I’m bald to do anything about it! It’s extremely frustrating and disappointing that the people put there to help you don’t want to!!
May 20th, 2008 at 8:07 am
Thanks so much for all of your stories. I’m 34 and was just diagnosed with LPP this past Friday. I feel like my life is over after all a woman’s hair is her crown and glory right. But after locating this site I feel there is a chance at living a normal life. I feel like less of a woman ever since this has happened to me and I don’t know how to tell my boyfriend in fear of losing him. Although I know it’s just my insecurities taking effect. Anyway thanks again for posting your stories.
June 20th, 2008 at 12:57 pm
Ask your doctor about DPCP- a short name for diphenylcyclopropenone. I have had alopecia areata (AA)since 1990. I have had great success with DPCP, going from complete baldness to a head full of hair. DPCP is not easily obtainable. My prescription is filled by a pharmacy 1.5 miles from home. It is also expensive, $140 for the prescription. Considering the benefits, it it worth the cost.
July 30th, 2008 at 12:35 am
I noticed the BCP Yasmin mentioned a couple of times above and I just wanted to say that Yasmin in particular has been known to cause hair loss in some people. I think it’s something to do the with the lower levels of estrogen in it. Although I know it works well for some people I would do some research and think very carefully before going on it. It didn’t agree with me at all and my hair has thinned considerably since I went on it.