Pubic Hair Loss

Discussion in 'Open Topic (General)' started by Elissa, May 10, 2009.

  1. Elissa

    Elissa New Member

    Along with the hair loss on my head, I have been experiencing patches of hair loss in the pubic area.. small round patches where it is not growing in. And the hair just looks less dense all around.. hard to explain. Also-- I used to wax my underarms once a week, and now I can go much longer without it because my hair is growing SO slowly and not filling in. What is going on? Is pubic hair loss indicative of any type of hair loss or condition in particular? Also-- the hair on my legs is growing slower too.

    I have been on the iron and copper (for low iron and a copper deficiency) for 2 months now , and I have been on Biotin and L-Lysine for one month so far. No change in my hair yet :( (Obviously I am more concerned with the hair loss on my head, but I found the other hair loss very strange).

    Sorry I didnt mention this until now.. I was too embarrassed and had to feel more more comfortable on the site (which I do now :)
  2. VictoriaG

    VictoriaG New Member

    I am unfortunately not experiencing loss or slowed regrowth in those areas, but I think that the hair on my legs is a little lighter, growing a bit more slowly. Not enough to stop shaving, but I will get more time between shaves in summer!
  3. Angela

    Angela Moderator

    Hi Sweetie,
    Its nothing to be embarrassed about. When almost all my hair fell out from head to toe, there was a lot that never came back. That included under my arms and in my pubic area.
    There is actually a hair loss condition that includes hair loss to the nape hair on the back of the head, underarm hair and pubic hair loss. Its called Graham-Little-Piccardi-Lasseur Syndrome. It usually strikes older men and women though. Here is an article about it:
    Introduction

    Background

    In 1914, Piccardi described the first case of progressive scalp cicatricial alopecia, noncicatricial alopecia in the axilla and groin, and follicular lichen planus (LP) on the trunk and extremities, to which he gave the name cheratosi spinulosa (keratotic spinulosa). In 1915, Graham-Little1 published a similar case of a 55-year-old woman, referred by Lassueur of Lausanne, Switzerland. Later, Feldman also reported another similar case, which he termed lichen planus et acuminatus atrophicans in 1936. Subsequently, several other cases were reported.
    Graham-Little-Piccardi-Lasseur syndrome (GLPLS) is a rare lichenoid dermatosis defined by the triad of multifocal cicatricial alopecia of the scalp; noncicatricial alopecia of the axilla and groin; and a follicular LP eruption on the body, scalp, or both.
    Pathophysiology

    Based on clinical and histological studies, GLPLS is considered a variant of LP consisting of follicular LP (of the body and/or scalp) and lichen planopilaris (LPP, of the scalp). Estimates show that at least 50% of patients with GLPLS experience at least one episode of typical oral and/or cutaneous LP. Similar to LP, GLPLS is likely the result of a T-cell – mediated immune response of unknown etiology, which involves destruction of keratinocytes expressing specific antigens.
    Frequency

    International

    GLPLS is relatively rare. A Medline search from 1951-2007 (all languages included) produced fewer than 40 cases of GLPLS in the literature.
    Mortality/Morbidity


    • Progressive cicatricial alopecia of the scalp leading to permanent hair loss may elicit psychosocial distress in the patient.
    • GLPLS has not been associated with underlying systemic diseases or increased mortality rates.
    Race


    • Most reported patients are middle-aged white women; however, no ethnic predisposition has been noted.
    Sex


    • Reports show females are affected more frequently than males, although limited numbers preclude meaningful interpretation from the case reports.
    • Only a few case reports in the literature cite affected males, which may be secondary to fewer males demonstrating concern over the disease.
    Age


    • Reported patients are aged 30-60 years.
    Clinical

    History


    • Patients are usually otherwise healthy middle-aged women.
    • GLPLS is typically sporadic and nonfamilial. In 2004, Viglizzo et al2 reported one case of GLPLS in a 47-year-old mother and her 19-year-old daughter.
    • The course of disease is slowly progressive (months to years) and often chronic. In 2003, Ghislain et al3 reported a 50-year-old woman who initially presented with disseminated LP, which then progressed to the classic triad of GLPLS over a 20-year period.
    • While the chronological course of GLPLS is variable, most patients usually present with clinical findings in the following order, called the triad of GLPLS:
      • Cicatricial alopecia of the scalp
      • Noncicatricial alopecia of the axilla and groin
      • Follicular LP eruption of the body, scalp, or both
    • In most patients, cicatricial scalp alopecia does not respond to medical interventions and results in progressive and permanent patchy hair loss. In contrast, follicular LP eruptions usually demonstrate a good response to medical treatments.
    Physical

    Symptoms from the triad of GLPLS need not be present simultaneously.



    • Cicatricial scalp alopecia is chronic and progressive through several stages:
      • Mild perifollicular erythema (with or without pruritus)
      • Follicular hyperkeratosis (keratotic and/or spiny papules)
      • Patches of cicatricial alopecia with occasional tufts of normal hair
      • Loss of residual normal tufts and hair follicles
      • Cicatricial alopecia with permanent hair loss, clinically identical to pseudopelade of Brocq, in end-stage GLPLS
    • Noncicatrizing alopecia of axilla, groin, and occasionally eyebrows and follicular LP of the skin (trunk, proximal limbs), scalp, or both usually resolve without treatment.
    • Patients have a history of typical cutaneous and/or oral LP.
    • In 1999, Bardazzi et al4 reported one case of GLPLS associated with hepatitis B vaccination and further suggested that GLPLS may also be associated with liver disease (ie, hepatitis).
    Causes

    The etiology of GLPLS is unknown; however, several hypotheses have been proposed.



    • Immunologic: HLA-DR is one of several HLA subtypes associated with LP and GLPLS. HLA antigens are hypothesized to enhance a T-cell–mediated immune response of unknown etiology.
    • Genetic: With the exception of one 2004 report by Viglizzo et al2 that documented a familial pattern of GLPLS correlated with the presence of HLA-DR1 in a mother and daughter, reports of GLPLS are usually sporadic, without any indication of genetic predisposition.
    • Viral (hepatitis B virus): Both GLPLS and LP have been reported to be rare events following hepatitis B virus vaccination. The hepatitis B virus vaccine is hypothesized to stimulate the immune system and trigger LP eruptions in a nonspecific manner. LP-like eruptions have not been reported with other vaccinations.
    • Hormonal: In 2004, Vega-Gutiérrez et al5 reported a case of GLPLS in a 19-year-old phenotypically female (genetically XY) patient with androgen insensitivity syndrome (testicular feminization). While the significance of both these findings is unknown, the authors implied that a hormonal etiology may be associated with the noncicatricial alopecia of the axilla and groin observed in persons with GLPLS.
    • Others: Neuropsychological stress, vitamin deficiency (specifically vitamin A), and altered hormone levels have been suggested because most GLPLS patients are perimenopausal or postmenopausal women.
    http://emedicine.medscape.com/article/1073743-overview
  4. Elissa

    Elissa New Member

    Hi Angela-

    Thank you so much for replying and for all the info! You are the best! I never heard of this before.. I am going to look into it. I just searched and skimmed a few sites quickly, but I am confused with a lot of the conditions they name..and a lot of what I am reading is scaring me. I specifically asked the "hair loss specialist" derm I saw a few times if I have scarring and he said "no", but I feel like he barely examined my scalp! Also-- he never did a biopsy. I am kind of scared to go back to him because last time I came in with a huge list of questions and I was extremely nervous and I came across as a crazy person... I kept asking him if my hair loss was permanent and he said "no-- I already told you". And I totally forgot to tell him about the hair loss in the pubic/underarm area because I had so many other questions to get through :(

    Would it be crazy for a patient to ask a doctor "Hey I think you should do a biopsy?".. I feel like this guy already thinks I told him what to do too much. I dont know any other hair loss experts in the Long Island, NY area.. but I dont think this guy is so great... I found out more info from you girls than I did from him. Also-- he didnt even address my low iron and ferritin until I pointed it out to him. I felt like I was being my own doctor during our visits :(

    How on earth do I go about finding a derm who specialised in women's hiar loss if I want to go for a second opinion? I tried doing web searches, but "female hair loss" isnt listed as a specialty.

    Sorry for the rant.. I am just getting scared and confused. I dont think I got the proper diagnosis. I mean "diffuse global alopecia" isnt a real diagnosis in my opinion. Just a fancy way of saying "You have hair loss".

    :(
  5. Angela

    Angela Moderator

    I hope I didn't scare you with that last post of mine. I think finding a new doctor may be in order because why pay him to not do his job thoroughly?
    He obviously is too lazy to do what is needed to satisfy your concerns. There have to be better doctors out there.
    You do have a lot of information now, and I consider that valuable. What it does is allow you to find a dermatologist with your eyes and ears open.
    You can go into the office, tell him/her your concerns and if he barely looks at your scalp and does that again, you can tell him you have seen enough to know that he was one of the most lazy doctor's you have ever encountered and thank him for wasting your time. LOL Then on to the next one. You can crack a smile while you are sitting there being looked at too. With piecing eyes and armed with a "I know something you don't know" attitude, maybe he will get self conscious and try a little harder. (Sorry, I'm really being a smart ass because I can't stand those types of doctors.)
    Definitely see if you can find a new one that will treat you better.
  6. Elissa

    Elissa New Member

    Thank you SO much for everything. You have been so helpful. I actually just a left a message with the nurse's voicemail at his office explaining how I just saw him a month ago, but my hair loss has gotten worse and now it's in teh pubic/underarm area as well.. I even mentioned in teh voicemail how I was wondering if I could/should get a scalp biopsy. It's funny because I didnt even THINK to mention teh pubic hair/body hair loss last time I saw him.. I was so overwhelmed by the hwole visit.

    So who knows if he will hear the voicemail.. I'll probably have to end up going back agian and he'll probably look at me like I am crazy since I have JUST seen him. Last time too.. he wasnt expecting to see me for 4 months after my first appt with him, (When he gave me an RX for Rogaine, told me to take copper and sent me on my way) but I had a thousand more questions to ask him...

    Ugh-- I wish I knew HOW to find a new doctor. I dont want to just blindly see another derm because most of them dont know about hair loss. Am I using the wrong search terms when I search online? I tried searching "hair loss specialist long island new york". I wonder if there is a listing anywhere of just doctors who specialize in hair loss.. You would know better than me.. any ideas?

    Thank you SO SO SO much for all your help and encouragement.. I REALLY appreciate it!

    *HUGS*

    p.s. my new internist is looking into a possible adrenal insufficiency/addison's disease with me (because of other health problems I have).. and now I am wondering if adrenal problems cause hair loss! This is just so much going on all at once!
  7. Angela

    Angela Moderator

  8. Dara

    Dara New Member

    Elissa and Angela,

    I, too, have been frustrated with the doctors I have gone to.

    I've gone to a dermatologist, 2 family doctors, and an endocrinologist (the only one in this small town).

    The feeling I get from them is that they do not consider my hair loss very important. Maybe because it is a non lethal condition?? Or maybe because I am over 60???

    If you find a doctor who specializes in women's hair loss, please post their name. (I am willing to go out of town.) I also have lost the hair under my arms, on my legs, and my eyebrows. (The pubic hair remains).

    Dara
  9. Angela

    Angela Moderator

    Hi Dara,
    I think the reason that most doctors "poo-pooh" it is exactly for that reason...non-life threatening. What town are you from?
  10. Elissa

    Elissa New Member


    Haha! That's funny because Vicki and I have already been talking for awhile ;) It turns out we went to the same doctor (Dr. Daly) and both had similar experiences (It was great to find someone who went to the same guy to share experiences!). We are both looking for a new doc on Long Island. But thank you anyway :) I do appreciate your help *HUGS*

    Why is it so hard to find a specialist?
  11. happytobeme

    happytobeme New Member

    Thanks

    Just wanted to thank you for having the courage to post about losing pubic hair. I thought I was losing my mind when I realized I was losing more than just the hair off my head. Once again, this network, reminds me that I am not alone- and it feels good to know. :rolleyes: