21 year old WOMAN with aggressive hair loss and scalp pain. DESPERATE.

DoneWithIt

Established Member
Reaction score
4
Hi ya'll. I know this is the men's forum but I see there is more activity here than on the women's forum so I decided to post here in hopes of some clarity.
I have posted on a few women's hair loss forums in the past but this is my first post here.
I am 21 years old, and have been suffering hair problems for the past year and a half.
It started as shedding, which lasted a good 9 months. It was horrible, but my hair never seemed to lose density the whole time I was shedding, keeping in mind I was born with extremely thick, beautiful hair that hairdressers "fought" over when I went to get my hair cut. They would literally be in awe when I let down my beautiful long mane, it was that thick.
Now, a year and a half later, I barely recognise what used to be my best feature.
I started thinning in October-November of 2012, at the end of my shed. When the hair stopped shedding I thought my nightmare was finally over! But it was just starting. I started having this weird sensation in my scalp, like a very light sunburn. And my hair got increasingly oily. I had always had oil prone hair but this was extreme, my hair would be dripping in oil after less than 24 hours, it was disgusting.
It was soon after I started noticing thinning in my hair, very slight in the bang area. At first I thought it was the effects of my shed (CTE), but a few months went by and it got increasingly worse. I started noticing a thin spot on my crown as well, and the pain in my scalp slowly escalated and got worse - and worse.
So I finally decided to visit a dermatologist in February 2012. My hair was still thick by then but I noticed the problem so I decided it was best to have it checked. The dermatologist couldn't see anything wrong with my hair and sent me off. At this point I had a weird feeling something was wrong, but was still hopeful it would fix itself. But I started reading up on hair loss on the internet, and especially androgenic alopecia. One day I decided to inspect my scalp for miniaturisation and was horrified when I found these super-thin, wiry looking hairs then loosened from my scalp easily. I added up my other symptoms, like oiliness and mild hirsutism (growing hair where women don't normally do), and became increasingly more afraid I was suffering from androgenic alopecia. So I booked an appointment with another dermatologist, and explained my concerns to him. But he could not see anything wrong either, and wrote me off. He told me not to worry about the miniaturised hair. But I couldn't let go as the problem got worse, and my hair got thinner. I visited a third dermatologist, the same happened there. I went for a hormone panel at my doctor, and my testosterone levels were fine. Not high. I payed nearly 300 dollars for an endocrinologist only to be told my hair was telogen loss, it would come back. But it is not coming back. Since february my hair is THAT much thinner, and my hairline is receding and crown is balding exactly in a MALE pattern, not even a female pattern hair loss. I am exhausted and left with no answers, and my hair has finally reached a point where I need concealing. This has taken what, 10-11 months? My first derm told me that IF I had Androgenetic Alopecia, it would take 30 years to become noticeable. And I'm on the verge of looking like a balding man as a woman over the course of 11 months. It's unreal! Yet all my tests are fine, I even went to a gyno to check for PCOS cysts which turned out, surprise surprise! FINE!
My iron is fine, my vitamins are fine, the ONLY thing is my thyroid but it is only slightly low and has been stable for a long time due to being on medication. Also thyroid does not cause pattern loss.
I have been on Rogaine foam 5 % for men for close to 2 months, and still I never had the dread shed which would imply it was working. MY hair has got steadily thinner while on Rogaine and the last few weeks the texture has totally changed from being coarse to silky-fine, falling completely flat and needing a dosen of volume products to look OK. The entire top of my head is thinning while the thickness remains in the back and sides. But the thinning is way worse in the hairline and some on the crown. It seems like I can see my hairline thin/recede. Why is this happening to me? I was a healthy, 20 year old woman before it started. Yes I was depressed and has been since 17 but now the hair loss has made me suicidal. If nothing helps I WILL kill myself. What man would date a balding woman? I used to be called attractive, and I had boyfriends. Recently I quit school and broke up with my boyfriend because I was ashamed and felt the hair loss is becoming noticable to others, and would rather hide in my bedroom before it gets that bad.
What am I supposed to do? There are no options for women suffering hair loss, we can't use propecia because the doctors will not give it. We cant have transplants because who knows, but I read that we cant. I don't wanna wear a wig I would rather just die. And the friggin scalp pain on top of it, which has turned to a constant, agonising pain in my thinning areas only, haunt me 24/7 and remind me of my hair loss every single day. Any advice out there? Is there hope for me to find someone who will accept me? I have lost all confidence. Hair loss can rob any man of confidence, but think of the women going through this. it's even worse for us. then add being only 21 and there is a recipe for disaster. sorry for the long post but I needed to get this out. I would appreciate is so much if anyone read this whole thing and would give me some advice on what I can do. would ordering propecia online be something? i am desperate, and feel like my life is hanging in a thread cause i would rather die than look like a balding man as a 21 year old woman who should be in her prime!!!

- - - Updated - - -

Sorry for the negativity but I am just so insanely depressed. I used to be confident and the guys would flock to me. But I no longer recognise myself, not the person I see in the mirror, OR the person I've become. I no longer laugh or smile, I just cry and throw temper tantrums at the people who care about me. I have lost my sense of humour, my sensuality, my womanhood, everything because of the damned hair loss! I wish I could make it all go away :( Is there ANY hope for me or should I just jump off a building?
 

hellouser

Senior Member
My Regimen
Reaction score
2,634
Sorry for the negativity but I am just so insanely depressed. I used to be confident and the guys would flock to me. But I no longer recognise myself, not the person I see in the mirror, OR the person I've become. I no longer laugh or smile, I just cry and throw temper tantrums at the people who care about me. I have lost my sense of humour, my sensuality, my womanhood, everything because of the damned hair loss! I wish I could make it all go away :( Is there ANY hope for me or should I just jump off a building?

You, I and the rest of many other members of this forum have all been robbed of our identity. I know exactly how you feel, I have the same problems; I'm filled with cynicism and skepticism, I've lost trust and faith in others. I've realized that balding is preferred to be taken as a joke than a serious condition that society mocks. You're somewhat in a better position than men because at least youre not openly ridiculed in public as its socially accepted to make fun of a guy for losing his hair. Women have a leg up in that department, but I hope you've come to realize that neither for men or women is this kind of abuse acceptable.

I badly want a cure, right NOW, and while there have been great strides made, even where Dr. Roland Lauster at the University of Berlin has effectively found a cure (by generating artificial skin with fully functioning follicles) the practice will take some time before its made available to us. And that right there is the problem, that NOT ENOUGH is done to expedite the solution as doctors, society and those privileged with hair dont care to find a solution as they prefer to sponsor stone age hair surgeons, pharmaceuticals continuously poisoning men with Finasteride, selling snake oil and as I believe, giving those without hair loss an effective means of having another reason to be satisfied with their life at the expense of others by knowing the disparity between themselves and unfortunate individuals like me and you.

Tip: keep an eye out on this:

http://anageninc.com/home-page-products/gf-nano-solution-30g.html

Its an unreleased treatment currently going through clinical trials that was tested on women who saw 10-30% increase in density in hair.

Also look into the dermarolling/wounding theory as abruption in skin and follicles followed by application of minoxidil induced PGE2 levels which are known to increase levels of FGF-9 that when induced during the healing process, creates hair growth. There's an entire thread on this here:

http://www.hairlosstalk.com/interact/showthread.php/69374-New-Dermaroller-Study-Thoughts-comments

Godspeed to you, I hope you find a solution or a solution finds you.

- - - Updated - - -

If nothing helps I WILL kill myself. What man would date a balding woman? I used to be called attractive, and I had boyfriends. Recently I quit school and broke up with my boyfriend because I was ashamed and felt the hair loss is becoming noticable to others, and would rather hide in my bedroom before it gets that bad.

I do want to chime in on this as this is a serious problem, more so than losing your hair itself.

Your boyfriend, if meant to be, would overlook your condition, PERIOD. There's nothing to even debate about that.

Secondly, here's something else to think about: would you rather have androgenic alopecia or multiple sclerosis? If your unfamiliar with MS, it attacks the nervous system and cripples you physically and psychologically; loss of mobility, loss of vision, loss of use of hands, loss of memory, etc.

I'm sure you would prefer hair loss. But...

Of all the women I've ever come across in my life, none has made an impact in my life as much as the one with multiple sclerosis. I'd date her in a heart beat, but not for her physical appearance (although I still find her cute) but because of the fire inside her and her amazing intellect. It's too bad, because she lives too far away for me to make it a reality.

I hope that sheds some light on you....
 

DoneWithIt

Established Member
Reaction score
4
Thanks for responding, Hellouser.
Yeah I agree no one should mock the balding, man or woman. I think I hate hair loss more than anything in the world because it has taken EVERYTHING away from me. I know hair loss is horrible for men too, and easier to make "fun" of, but at least you have the option of shaving your head, get buff and maybe throw in some tattoos and BAM! - you are a hottie and women flock to you. Maybe there are women who wouldn't date a balding guy but I think the vast majority of girls/women definitely would, myself included. But a woman? I do not have alopecia that leaves me completely bald or in patches and honestly I would prefer that so much over Androgenetic Alopecia. Hair is what DEFINES a woman, and when she lose it - even worse, in a male pattern - what hope left is there? I swear I study every head I see on the streets to inspect their hairline, density, crown, you name it. Male and female. And I have not come across one single female in my age group with this problem. Even the doctors I've been to wrote me off because I'm "young and female". I think I've seen 2-3 women in my lifetime with Androgenetic Alopecia, and they were all way past menopause! There are actually quite a few men who are unlucky to bald early. You see them, feel sorry for them, but it's not "such a big deal" to other people (it probably is to the affected ones though). But I feel like that one in a million unlucky woman that if you saw her balding head, you'd wonder what is wrong with her. It literally makes people's eyes widen because it's unheard of. I don't know what's worse, being made fun of for balding or that look of pity in people's eyes cause they feel sorry for you. I'm not trying to make it seem as men have no right to feel this upset because of hair loss, because I know it's individual and this can affect you in so many ways and like you say, rob you of the person you once were. You become desperate for a solution, but don't find any, and you lose yourself to depression, anxiety and no confidence.

Still I think you men have more options than us women, including hair transplants and drugs like Propecia. Women basically have Rogaine and if that doesn't work you are f'ed. You can also go f' it and shave. We can't. The only resort is a freaking wig and that is less than optimal. I wanna vomit of the thought of living in a wig that I have to remove daily to see my balding head in the mirror. I wanna vomit just typing this!

I seriously pray on behalf of each and every one of us unfortunate individuals a cure will be made available to the public SOON. But I don't even dare to hope anymore and IF there will be a cure, like you said it requires a zillion trials and it will be years before it hits the market. By that time I will be bald as an egg. My only hope is that they manage to perfect a procedure which creates entirely new follicles, sorta like the one you mentioned, but again that will take YEARS and years, and by then my youth is gone. If it even comes in my lifetime. But seriously though, I don't think that people with hair don't care to make a cure. Just imagine the profit they would make if there was a 100% cure for men and women across the world suffering baldness. They would make millions! So I don't think it's about no one caring to help people with hair loss, it's just that this freakin' problem which seems so trivial, like it's HAIR! Dead freakin' matter growing from holes in our head, how difficult would it be?, is yet so complicated. Still I hope and pray that the "cure" will come as soon as possible. But hope is low.

Lastly, yes I know about MS and no I would not want that. But then again hair loss has robbed me of everything good in my life and I feel dead already, so I don't know. But I don't wanna compare to a disease I know nothing of what it's like to have. Everyone has their battle and this is mine. :(
 

Quantum Cat

Senior Member
Reaction score
137
I don't think you should take Propecia unless it's confirmed that you have Androgenetic Alopecia, and even then only if a doctor says its OK, and as long as you are not intending to become pregnant.
 

DoneWithIt

Established Member
Reaction score
4
I don't think you should take Propecia unless it's confirmed that you have Androgenetic Alopecia, and even then only if a doctor says its OK, and as long as you are not intending to become pregnant.

lol, as i would ever find someone to make me pregnant looking like this.
but no, i am not planning to get pregnant now, maybe ever.
it's very hard when no doctor in my country will give me the diagnose of Androgenetic Alopecia because I'm young and a woman. so in their minds it is impossible.
but my hairline is down to a few strands and i have a bald spot on my crown so it is clear to me what is going on! but i will try to get it from a doctor first and also im going to have my dht tested. if it comes back high i am jumping on the propecia wagon no matter what trust me:)
do you guys have any opinion on if the dht needs to be high to have androgenic alopecia? some other lady on a forum told me it is not Androgenetic Alopecia if the dht is not high. but could even normal levels of dht give you Androgenetic Alopecia? is it simply just a f'd up gene we cannot do **** about?
 

hellouser

Senior Member
My Regimen
Reaction score
2,634
lol, as i would ever find someone to make me pregnant looking like this.
but no, i am not planning to get pregnant now, maybe ever.
it's very hard when no doctor in my country will give me the diagnose of Androgenetic Alopecia because I'm young and a woman. so in their minds it is impossible.
but my hairline is down to a few strands and i have a bald spot on my crown so it is clear to me what is going on! but i will try to get it from a doctor first and also im going to have my dht tested. if it comes back high i am jumping on the propecia wagon no matter what trust me:)
do you guys have any opinion on if the dht needs to be high to have androgenic alopecia? some other lady on a forum told me it is not Androgenetic Alopecia if the dht is not high. but could even normal levels of dht give you Androgenetic Alopecia? is it simply just a f'd up gene we cannot do **** about?

Men don't necessarily need high levels of DHT to destroy follicles, even those with relatively low levels can still experience Androgenetic Alopecia. I would *NOT* recommend you taking Finasteride, god knows what effects it could have on your hormones and body. If youre going to try something potentially THAT dangerous, you should have no problem considering CB-03-01 as it is more effective than Finasteride. Its a topical treatment WITHOUT the side effects. Its a steroid that penetrates the skin, binds to the receptor at the follicle and blocks DHT. Once it enters the bloodstream it goes benign (ineffective). Its currently going through clinical trials for both acne and hair loss by a company called Cosmo Pharmaceuticals, but you'll be surprised that they actually are releasing it for acne first within 2 years when theres heaps of sh*t out there for acne but pretty much NOTHING for hair loss. In any case, the only potential side effect that could be with it is skin atrophy, but since its a corticosteroid, its milder than even the mildest steroid and at such a low dosage (10mg per 1ml) its not likely to do anything, and since Cosmo reported no side effects in either of their safety clinical trials for acne or hair loss, it should be completely fine to use (I dont think Cosmo would overlook something like skin atrophy).

What it is though right now (as some people like my self are using it), is a raw powder which you can buy off the black market. You'll then need a small digital scale that can weigh down to 0.001g. You'll then need to buy Everclear (an ethanol alcohol you buy at a liqueur store) at a concentration of 95% (190 proof) as well as propylene glycol (this you can buy at any pharmacy). You then take 0.5ml of Everclear and 0.5ml of Propylene Glycol (1ml total) and dissolve the powder in both liquids, make a complete application of it thats mixed everything together. The liquid is then used as a 'vehicle' to penetrate the skin carrying the dissolved CB substance which will bind to your follicles and protect your hair from DHT. The Everlceal/PG mix is actually the same for many Rogaine (minoxidil) knockoffs. Its very simple. You'll need to apply the CB daily, but if you multiply everything by ten, so 100mg of CB, 5ml of everclear, and 5ml of PG, you'll have a 10 day batch.

Once cosmo releases it it will be sold as a cream or liquid.
 

DoneWithIt

Established Member
Reaction score
4
Men don't necessarily need high levels of DHT to destroy follicles, even those with relatively low levels can still experience Androgenetic Alopecia.

i don't understand, i thought dht is what is killing the follicles? and even if you had a relatively low level, wouldn't finasteride help blocking that?

about sides, i really DON'T care. if i can't have my hair than i have nothing. besides i talked with a woman who experienced male pattern loss and is now reversing it with finasteride. so for me it's worth a shot. but still, i'm going to be careful and talk with a doctor before i decide to try either finasteride or avodart. right now im on spironolactone and rogaine and my hair loss keeps on going accompanied by this horrible scalp pain that i have to live with 24/7. so if i sound a bit insensitive or something it is cause i'm going through something literally NO freakin 21 year old girl is, male pattern hair loss and 24/7 pain and my life is hell. i'll take the risks of sides over not doing anything any day.
 

hellouser

Senior Member
My Regimen
Reaction score
2,634
i don't understand, i thought dht is what is killing the follicles? and even if you had a relatively low level, wouldn't finasteride help blocking that?

about sides, i really DON'T care. if i can't have my hair than i have nothing. besides i talked with a woman who experienced male pattern loss and is now reversing it with finasteride. so for me it's worth a shot. but still, i'm going to be careful and talk with a doctor before i decide to try either finasteride or avodart. right now im on spironolactone and rogaine and my hair loss keeps on going accompanied by this horrible scalp pain that i have to live with 24/7. so if i sound a bit insensitive or something it is cause i'm going through something literally NO freakin 21 year old girl is, male pattern hair loss and 24/7 pain and my life is hell. i'll take the risks of sides over not doing anything any day.

Read into as many studies and solutions as humanly possible before jumping the gun. You need to make a wise decision about hair loss before throwing the kitchen sink at your scalp.

CB should do a LOT better for you than finasteride. Just look at this chart with Cosmo's results:

2qa1ld4.jpg



Look at those numbers: Hair count increased from 71 to 109 per square centimetre (a 54% improvment!) and hair THICKNESS improved from 0.41 to 0.88mm, more than DOUBLE the thickness. Those kinds of figures are almost NEVER seen with Finasteride, the only case I've seen this good was with the guy from hairlossfromsteroids.com.

- - - Updated - - -

Also, if you don't care about side effects, you would probably be my first candidate to replicate Follica's treatment LOL. Just dermabrade your scalp (deep wounding) and inject yourself with a synthetic form of FGF-9. Thats basically what Follica is doing to create hair follicle neogenesis courtesy of Dr. George Cotsarelis. They're in Phase II clinical trials and if all goes well its possible they could have a treatment within a few years should the trials go smooth without interruption, with funding and with a speedy FDA clearance. Our goal, as a hair loss society, should be to make sure ALL of those things happen. But as I've mentioned before, WE have all failed MISERABLY to ensure a proper treatment is or was made available to us.
 

IDW2BB

Established Member
Reaction score
19
You should take multiple pictures of your condition right now. They don't have to be the best, a phone pc would due. Next time you go to a doctor, show the pictures. Because 3 Derms. have said you do not have alopecia means nothing. They didn't know you before. Take some pictures and go back to a doctor. If you find a Doctor you like, have him/her take some photos. Most will. then go back to see him/her regularly.
 

hellouser

Senior Member
My Regimen
Reaction score
2,634
Also, one other thing to keep an eye out for (this could be a big game changer).

PILOFOCUS.

Dr. Carlos Wesley has a new method for hair restoration via surgery that is completely scarless and there is anecdotal evidence of donor regeneration. If regeneration happens, I'm going in for a procedure. We'll know more about Pilofocus on October 23rd when he makes his presentation to the public. Thats going to be an exciting day :)
 

VarunS

New Member
Reaction score
0
Consider other options besides getting on drugs. I have a family member (lady) who was suffering from major thinning maybe from when she was 30 years of age. She recently got hair weaving done, I have no idea how practical or feasible this is but aesthetically looks good.
 

DoneWithIt

Established Member
Reaction score
4
Consider other options besides getting on drugs. I have a family member (lady) who was suffering from major thinning maybe from when she was 30 years of age. She recently got hair weaving done, I have no idea how practical or feasible this is but aesthetically looks good.

She is probably having an hair integration system which is a mesh/net they pull your own hair through and attach more hair where you need it. This will probably be my option if treatment fails.
But the thing is if I chose something like that I give up the fight, and I don't wanna give up using Rogaine and trying to treat my hair loss before I've been on it a sufficient amount of time to be able to tell wether or not it is actually working or not.

OH, and those kind of "solutions" are often very expensive, require maintenance every 5 weeks (which also costs a lot of money) and can do damage do your own hair from traction alopecia. so it's not somewhere i wanna go unless i absolutely have to.

there is also the bonding option with glue but to me that seems super uncomfortable and unhealthy since the scalp cannot breath underneath the system, and also requires maintenance probably even more often than the mesh system, and is just as expensive.
 

Ephemeral-Kitten

Established Member
My Regimen
Reaction score
151
She is probably having an hair integration system which is a mesh/net they pull your own hair through and attach more hair where you need it. This will probably be my option if treatment fails.
But the thing is if I chose something like that I give up the fight, and I don't wanna give up using Rogaine and trying to treat my hair loss before I've been on it a sufficient amount of time to be able to tell wether or not it is actually working or not.

OH, and those kind of "solutions" are often very expensive, require maintenance every 5 weeks (which also costs a lot of money) and can do damage do your own hair from traction alopecia. so it's not somewhere i wanna go unless i absolutely have to.

there is also the bonding option with glue but to me that seems super uncomfortable and unhealthy since the scalp cannot breath underneath the system, and also requires maintenance probably even more often than the mesh system, and is just as expensive.
Efficacy was evaluated as a secondary objective in the 138 patients who had taken bicalutamide for >6 months. In this cohort, concomitant minoxidil was used in 135 patients and spironolactone in 100 patients. Three patients received bicalutamide monotherapy. Clinical photographs taken at 3-month intervals were reviewed by 2 dermatologists to assess the Sinclair stage,5 a 5-point scale for grading the severity of FPHL. The mean Sinclair Table I. Patient demographics and doses of bicalutamide Variable Patients, No. Result Age, mean (range), y 316 48.96(15-85) Starting dose 1 10 mg weekly 1 5 mg daily 295 10 mg daily 10 12.5 mg daily 7 20 mg daily 1 25 mg daily 1 50 mg daily Highest dose 220 10 mg daily 8 12.5 mg daily 79 20 mg daily 3 25 mg daily 5 30 mg daily 1 50 mg daily Table II. Adverse effects and other reasons for discontinuation of bicalutamide Adverse effects Patients, No. (%) Discontinuation, No. Mildly elevated transaminases (\23 upper limit of normal) 9 (2.85) 3 Peripheral edema 8 (2.53) 0 Gastrointestinal complaints 6 (1.90) 4 Breast tenderness 3 (0.95) 0 Acneiform eruption 2 (0.63) 0 Dizziness 2 (0.63) 1 Myalgias 2 (0.63) 1 Reduced libido 1 (0.32) 0 Low mood 1 (0.32) 1 Menstrual irregularity 1 (0.32) 1 Palpitations and dyspnea 1 (0.32) 1 Photosensitivity 1 (0.32) 1 Other reasons for discontinuation of bicalutamide Patient preference 14 Perceived lack of efficacy 21 Patient did not start medication 14 J AM ACAD DERMATOL NOVEMBER 2020 1478 Research Letters stage at baseline was 2.77. The mean reduction in Sinclair stage was 0.18 (6.5%) at 3 months, 0.47 (17.0%) at 6 months, 0.56 (20.2%) at 9 months, 0.68 (24.5%) at 12 months, and 0.80 (28.9%) at 2 years. The results of this study support that oral bicalutamide has a favorable safety profile when used to treat FPHL. More than 95% of patients who started treatment with bicalutamide adhered to treatment. Thirteen patients discontinued the medication due to adverse effects, some of which may have been related to minoxidil rather than bicalutamide. In contrast to flutamide, the elevation in liver transaminases was mild in all cases. Bicalutamide can be considered as an antiandrogen in the treatment of FPHL. The use of concomitant medications and the retrospective design of this study limit the evaluation of efficacy.
If you truly have Androgenetic Alopecia, I think that you have quite a few options other than minoxidil, the strongest probably would be bicalutamide since it works much better in women than men for treating hair loss.

Ref: DOI: 10.1016/j.jaad.2020.03.034
 

BurningCoals

Senior Member
My Regimen
Reaction score
1,177
If you truly have Androgenetic Alopecia, I think that you have quite a few options other than minoxidil, the strongest probably would be bicalutamide since it works much better in women than men for treating hair loss.

Ref: DOI: 10.1016/j.jaad.2020.03.034
The posts are like 8 years old and I think she resorted to a hairpiece (I'm pretty sure it's the user EvilLocks).
 

Willoway

Banned
My Regimen
Reaction score
57
The important thing is to notice how she was determined not to give up; with that Spirit Goddess can forge golden mysteries.
 
Top