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Thinning/hair Loss Update (long)

Blu217

Well-Known Member
For those of you who have been following my occasional posts about my hairloss saga, I thought I'd post the latest.

I've concluded this is an unwinnable battle. Despite the doctors, the topical and oral meds, the cortisone shots, the full blood workup (came back a-OK) and the prayer, my hair continues to do nothing but shed and thin.

Since this started in late 05' I've lost at least 50% of the hair from the top of my head; probably more. The last few months have been the worst, with my hair coming out in plugs when I wash it.

I didn't relax for more than a year, hoping that would help stop the shedding, if it didn't reverse it. In that time I lost more hair than ever and my hair has been its most unhealthy, with breakage and thinning even tho I followed protocol for transitioning. I tried flat-ironing, but I noticed my ends didn't like it. I tried braid-outs, but my hair had become so thin they didn't look nice like they once did. I gave up rollersetting because I'd lost so much hair that a fresh set only highlighted all my bald spots. It took 20 or 30 minutes to pull my hair into a ragged-looking ponytail, because I had to push and shove and arrange just to look halfway OK. I could see my scalp thru my new growth along my hairline when the sun shone on it. It has been humiliating.

And I HATED transitioning. Discovering my hair texture was fun, but it was unacceptably difficult to manage and, because I was wearing my hair with many inches of new growth, I looked a HAM even when I tried the tricks I've read here. I left the house embarrassed every day and avoided mirrors.

Finally I decided that all I'm doing is choosing between evils because there is no good answer. I relaxed last week after thinking about it for months. It's falling out no matter what I do and I've never felt my loss was caused by relaxers in the first place. I had no idea whether it would all come out after the process, or if I'd be fine. But I could no longer stand hating my appearance day after day and making excuses for how I looked when once I'd felt attractive and confident.

I haven't lost my hair from the relaxer, but it's early. In fact, it looks better than ever, almost like my old head of hair. I was able to achieve my first smooth post-loss ponytail and I've felt the best I've felt in a long time, because I again feel presentable and generally attractive. The bad: I knew the relaxer would reveal just how thin my hair was, and sure enough, I still spend time in the mirror combing and brushing to hide my scalp. I avoid touching or dealing with my hair now because it alarms and sickens me to feel how much I've lost. For now, my days of styling my hair are behind me. I can hide and control things only with a plain, tucked ponytail so that's all I wear now.

I bought a Newhair wig, the Cheri. I hate wearing it, because I don't wear it for convenience. I wear it because I am forced to if I want to conceal what's happening. I only wear it when I'm going out, and people have been complimenting me on how great my hair is looking. It's a great wig. It's also a lie; people want to touch my hair and I can't let them. I'm scared for someone to feel or see that I'm wearing a piece. It's not the same as when you just wear one to take a break or cause you didn't feel like doing your hair. I'm wearing hair because I'm balding and I'm ashamed of that. I love the momentary break I get from feeling unattractive, but I hate that the only way I can do that is to fake it. And how long can I keep this up before someone figures it out? I miss my own hair; I never used to worry when the wind would blow. Now I'm paranoid of wind.

I have always been considered attractive, and get complimented on my looks. My vanity has taken a beating; will men still find me physically attractive now that I'm losing hair? What's hot about bald? I've been thinking about returning to the dating scene, but then I remember my hair; I can't bring myself to do it because of the shame I feel about my hair and what it suggests about my health. It's not socially acceptable to go bald as a woman and I'm not at peace with this yet. I may never be.

I'm continuing with my Rogaine/oral Spironolactone/biotin recipe. All I've seen so far is so much shed you'd think my follicles had received an evacuation notice. Doctors don't know, I don't know. I've thought of just shaving it to take back some control, but with the spotty bald patches I'd have to shave to the skin--definitely not comfortable with that. So I'm soldiering on. I saw my derm a few weeks ago, after she'd prescribed some topical steroid. Her first question was "So! Is your hair growing back yet?" as if it just magically would. I've felt terrible that, if that was supposed to make it come back, it didn't--and what does that mean?

The kenalog steroid injection I got in my backside almost a year ago burned away the tissue, as Kenalog is wont to do; I am a bit deformed now, with a somewhat deep trough of dented skin along my backside as if someone skimmed the length of my buttock at an angle with an ice cream scoop. Docs say it'll probably never fill in; at least you can't see it thru my clothes. All this and still no regrowth. Brutal, but I've tried. I really have tried my best.

Oh well--on the bright side the spiro has made my skin FLAWLESS. Birth control pills have nothing on this stuff! It even turns back the clock a bit; I look like caramel-colored china. I do love that. I've read that it takes as long as a year or two before spiro can work, and many months with rogaine. I'm in for the long haul. I guess another bright side is everything I've learned along the way; I know SO much more now than I ever knew before. And the hair I have is thriving, growing (even tho I'm still achieving length goals, they seem pointless now too)... I just wish I could have it all back. I wish every day for that.

ALLLL that said, I won't post about this again until and unless I see a drastic development or make a major decision. My loss continues to worsen at this point, and that's that. To anyone else who's experiencing hair loss of any sort, I wish you all the luck with your journey.
 
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tiffers

Whisper "bleep boop" to yourself when you're sad.
Oh my goodness, I'm so sorry you're going through this. I can't even imagine how you feel, it must be devastating. I honestly don't know what to say other than I hope things get better for you and your hair. I know it's easier said than done, but try to stay positive and keep your head up. I wish you the best of luck, and I'm sending prayers and good vibes your way :hug2:
 

missty1029

New Member
I too am so sorry that this is happening to you. It must be so difficult. I hope that things turn around for you and all the while I pray that your spirits remain positive and this in no way is a health issue.
 

LynnieB

Well-Known Member
Hey blu - you know i was just thinking about you the other day, wondering how you were making out...........

i'm so so sorry things haven't gotten any better for you hairwise but i'm also relieved that healthwise, you're ok.

{{{{{hugs}}}}} to you sweetie, stay optimistic....... best you can and i'll keep you in my prayers for some kind of recovery.
 

Precious_1

Well-Known Member
Blu, you know i admire our honesty and how open you are to discussing this. Good luck to you, sending you another pm
 

WomanlyCharm

New Member
Oh Blu...your post has me teary-eyed. I've been thinking about you lately and had hoped things were getting better.

I wish there was something I could do to help. You are in my prayers.
And as someone else said, you are still a beautiful, talented woman, no matter what.
 

JensOG

Member
Oh my goodness, I'm so sorry you're going through this. I can't even imagine how you feel, it must be devastating. I honestly don't know what to say other than I hope things get better for you and your hair. I know it's easier said than done, but try to stay positive and keep your head up. I wish you the best of luck, and I'm sending prayers and good vibes your way :hug2:

Ditto here.:hug2:
 

Blu217

Well-Known Member
Thanks to everyone!

I've commited myself to that year-long wait to see if my new therapies will work. Long time just to find out something doesn't work, eh? But that's the way I'll know, so I'm hunkering down. It's weird to be going thru this; three years ago I had all my hair and... me, go BALD? What a bizarre thought! Talk about something that never even crossed my mind.

Heh. And here I am now. Life is funny like that. I'm p*ssed that I was so cautious and well hair-behaved and this happened to me anyway, but I'm still fighting. Keep wishing me luck ya'll. One way or another, I'll get it all sorted.
 

Snuckles

Active Member
I've read your entire post . . . I can imagine how you must feel. I'm so sorry that you have to go through this.

As far as dating, I'd say go for it. So what if you're losing your hair, it's you and someone out there will love you for you! Trust me. If they can't handle it then that person isn't for you. All of our good looks will fade with time, so if someone is only interested in how you look, move on.

Sounds like this may be a time of growth for you. Something good can/will come out of this.
 

Blu217

Well-Known Member
Thanks, Snuckles. That's what my mama says too :grin:!

May I ask what is scarring alopecia?

Scarring alopecia is a form of hair loss caused when scar tissue forms beneath the scalp. Hair can't grow through scar tissue, so there ya go.

This occurs a lot in black women and doctors have traditionally thought it's caused by tight hairstyles (braids, weaves, ponytails) or relaxers. But this also happens to white people who don't style or chemically process their hair like this. Doctors now say they don't know for sure what causes it. It's not typically reversible and is usually permanent. It's also painful; it burns and itches when it flares up. The surface of the scalp looks normal tho--often a bit red tho from the inflammation. The formal name is central centrifugal cicatricial alopecia.

There's a national research foundation for it (I keep my eye on this); more info is available there:
http://www.carfintl.org/faq.html
 
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TinyT

New Member
For those of you who have been following my occasional posts about my hairloss saga, I thought I'd post the latest.

I've concluded this is an unwinnable battle. Despite the doctors, the topical and oral meds, the cortisone shots, the full blood workup (came back a-OK) and the prayer, my hair continues to do nothing but shed and thin.

Since this started in late 05' I've lost at least 50% of the hair from the top of my head; probably more. The last few months have been the worst, with my hair coming out in plugs when I wash it.

I didn't relax for more than a year, hoping that would help stop the shedding, if it didn't reverse it. In that time I lost more hair than ever and my hair has been its most unhealthy, with breakage and thinning even tho I followed protocol for transitioning. I tried flat-ironing, but I noticed my ends didn't like it. I tried braid-outs, but my hair had become so thin they didn't look nice like they once did. I gave up rollersetting because I'd lost so much hair that a fresh set only highlighted all my bald spots. It took 20 or 30 minutes to pull my hair into a ragged-looking ponytail, because I had to push and shove and arrange just to look halfway OK. I could see my scalp thru my new growth along my hairline when the sun shone on it. It has been humiliating.

And I HATED transitioning. Discovering my hair texture was fun, but it was unacceptably difficult to manage and, because I was wearing my hair with many inches of new growth, I looked a HAM even when I tried the tricks I've read here. I left the house embarrassed every day and avoided mirrors.

Finally I decided that all I'm doing is choosing between evils because there is no good answer. I relaxed last week after thinking about it for months. It's falling out no matter what I do and I've never felt my loss was caused by relaxers in the first place. I had no idea whether it would all come out after the process, or if I'd be fine. But I could no longer stand hating my appearance day after day and making excuses for how I looked when once I'd felt attractive and confident.

I haven't lost my hair from the relaxer, but it's early. In fact, it looks better than ever, almost like my old head of hair. I was able to achieve my first smooth post-loss ponytail and I've felt the best I've felt in a long time, because I again feel presentable and generally attractive. The bad: I knew the relaxer would reveal just how thin my hair was, and sure enough, I still spend time in the mirror combing and brushing to hide my scalp. I avoid touching or dealing with my hair now because it alarms and sickens me to feel how much I've lost. For now, my days of styling my hair are behind me. I can hide and control things only with a plain, tucked ponytail so that's all I wear now.

I bought a Newhair wig, the Cheri. I hate wearing it, because I don't wear it for convenience. I wear it because I am forced to if I want to conceal what's happening. I only wear it when I'm going out, and people have been complimenting me on how great my hair is looking. It's a great wig. It's also a lie; people want to touch my hair and I can't let them. I'm scared for someone to feel or see that I'm wearing a piece. It's not the same as when you just wear one to take a break or cause you didn't feel like doing your hair. I'm wearing hair because I'm balding and I'm ashamed of that. I love the momentary break I get from feeling unattractive, but I hate that the only way I can do that is to fake it. And how long can I keep this up before someone figures it out? I miss my own hair; I never used to worry when the wind would blow. Now I'm paranoid of wind.

I have always been considered attractive, and get complimented on my looks. My vanity has taken a beating; will men still find me physically attractive now that I'm losing hair? What's hot about bald? I've been thinking about returning to the dating scene, but then I remember my hair; I can't bring myself to do it because of the shame I feel about my hair and what it suggests about my health. It's not socially acceptable to go bald as a woman and I'm not at peace with this yet. I may never be.

I'm continuing with my Rogaine/oral Spironolactone/biotin recipe. All I've seen so far is so much shed you'd think my follicles had received an evacuation notice. Doctors don't know, I don't know. I've thought of just shaving it to take back some control, but with the spotty bald patches I'd have to shave to the skin--definitely not comfortable with that. So I'm soldiering on. I saw my derm a few weeks ago, after she'd prescribed some topical steroid. Her first question was "So! Is your hair growing back yet?" as if it just magically would. I've felt terrible that, if that was supposed to make it come back, it didn't--and what does that mean?

The kenalog steroid injection I got in my backside almost a year ago burned away the tissue, as Kenalog is wont to do; I am a bit deformed now, with a somewhat deep trough of dented skin along my backside as if someone skimmed the length of my buttock at an angle with an ice cream scoop. Docs say it'll probably never fill in; at least you can't see it thru my clothes. All this and still no regrowth. Brutal, but I've tried. I really have tried my best.

Oh well--on the bright side the spiro has made my skin FLAWLESS. Birth control pills have nothing on this stuff! It even turns back the clock a bit; I look like caramel-colored china. I do love that. I've read that it takes as long as a year or two before spiro can work, and many months with rogaine. I'm in for the long haul. I guess another bright side is everything I've learned along the way; I know SO much more now than I ever knew before. And the hair I have is thriving, growing (even tho I'm still achieving length goals, they seem pointless now too)... I just wish I could have it all back. I wish every day for that.

ALLLL that said, I won't post about this again until and unless I see a drastic development or make a major decision. My loss continues to worsen at this point, and that's that. To anyone else who's experiencing hair loss of any sort, I wish you all the luck with your journey.

Blu217,

Just checking in to see how you are doing. The crazy thing is your story is word for word everything I am experiencing, from the physical signs, to being forced to wearing buns or my hair out in an afro to cover the bald areas.

You also covered my concerns about the social acceptance of hair loss. I am just sitting here with red eyes contemplating cutting all my hair off because I am frustrated with the baldness, but I am also afraid about not being able to hide it with the hair I do have. Regardless of all the warm fuzzy things people say, most men aren't searching for a girl with baldness.

I know that people say ( and especially my Mom does), that there is someone out there for me. I do believe this, but I will be honest and say that it takes a lot of courage to make your baldness visible to the free world (espcially to men who don't really understand female hair loss). In most areas I have all the confidence in the world, but as a woman, this hits me hard very often. I have to pray so much because once I pray myself out of depression, I fall back into it. I am hoping for the best, but this is not easy.

I hope that anyone else that finds themselves diagnosed with central centrifugal cicatricial alopecia, will know that they aren't alone. It's normal to be frustrated at having to be on steroids indefinitely and hating but needing wigs. Some days I don't even think about it, but when I do it makes me feel sad. Being able to ask how Blu217 is doing and sharing my similar story helps.
 

Hair Iam

Well-Known Member
I pray the Lord makes a way even when there appears to be no way.
You sound like your handling it well ..proud of you
 

Blu217

Well-Known Member
Hey Tracyannette and everyone else -

((HUGS)) Tracyannette (and anyone else who is dealing with this). Thanks for checking in. I'm so sorry to hear you're going thru this too--but on a positive note, your natural hair in your siggy looks gorgeous! It's a tough journey and at least for me it's like walking blindfolded in an unfamiliar pitch-black room; I had no idea what was helping, nor what was causing or exacerbating the problem. Pretty hard to treat something no one seems to understand. I've kept at it over the months with trial, error and a lot of prayer and hope.

It's gotten better and has been filling in some. I finally gave in and started using Rogaine 5% mixed with a little pure emu oil once a day, as I mentioned. I am also still taking the spiro, plus 5mgs of biotin. When I posted this thread I was going thru the terrible Rogaine-induced dread shed, but that ended soon after and my hair actually started filling in. I have enough coverage now that I no longer think about pulling it back. I remain thin on top altho it's gotten better too; I am just now starting to feel some fuzz covering some of the formerly shiny spots. I don't know how long this recovery will continue and I really have no idea which of the things I'm using/doing is causing it. I just kept at it until something happened.

If you doc told you your hair won't come back, TRY TO GET IT TO COME IN ANYWAY. That's what I was told, but because I knew this could spontaneously reverse itself at any time, I had nothing to lose by trying, so I tried like hell with the stuff I'd read would work. I didn't spend anymore time on natural remedies because they just didn't produce. The drugs seem to do the trick tho, and at this point I'll take it. I don't have all my hair back, but I got enough that I can comfortably style again as normal.

I am where you are, trying to work thru it and learning to live with it too. I do believe men can and will love us whether we have a full head of hair or not... I believe that intellectually, because I've seen guys with women who had all sorts of imperfections; they didn't care. But emotionally I think we care so much more, as women, because we need and want to feel beautiful. And to be honest, I think the criticism we fear most is from other women. I've often been reminded that these days wigs are totally socially acceptable and seen as just another fashion accessory--that's how many other people view them. I don't know that I've wondered about a woman's hair health when I noticed her wearing a wig. I just figured she didn't want to do her hair. When I've asked men about it, I can honestly say I've never heard one say they'd disqualify a woman because her hair was thin--it was really heartening. Please keep that in mind--you really ARE beautiful, and as I've learned, the fellas aren't deterred! In fact, most people didn't believe I was losing hair because they said they couldn't tell until I showed them (I did style as best I could to camoflage, but to me there was no way you could miss it--yet people did).

I've attached my progress pics below. CCA CAN improve... please just keep at it!

Spring/Summer '07:




Spring '08:
 
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vestaluv1

Well-Known Member
:bighug:I'd just like to stop by and say that I know how you feel. I am trying to recover from MAJOR hair loss from the back, front and sides and I feel like nothing is working. (I am too depressed about it to post pics just yet)
But I really really hope everything works out for you.:bighug:
 

vickid

Well-Known Member
Two Dr's diagnosed me with alopecia. One said it was male pattern baldness and the other said scarring alopecia. Both told me to give up and just go bald gracefully. Thankfully, I didn't. I've read your posts and the only thing that I did that you haven't is try either Retin A gel or at least a 15% glycolic acid on your scalp to reduce the amount of thick, dead skin and to increase circulation to the area. Either of those two products seem to make the Rogaine work faster.

I also got Kenalog shots. The lost fat will fill back in; just give it time. Did you ever get steroid shots directly in your scalp? Did the derm prescribe Clobetesol to put on your scalp? It works but will thin skin with prolonged usage.

Please don't give up! It took 2 years for all my hair to finally return but it finally did. GOOD LUCK!
 

Nonie

Well-Known Member
Blu, your strength is such an inspiration, and while I can't think of any words that a hug couldn't convey much better :)hug2:), I do want to let you know that I will continue to pray for you. I am thrilled VickiD--another of my inspirations, just like you--chimed in because just like you, she is a fighter and she won this battle--a story I feel deep inside you will one day echo. I don't know why, but I truly feel that a miracle is in the works for you. Keep that positive mental attitude and see the law of attraction come true for you.
 

jaiku

Well-Known Member
Wow Blu I have been following your story and that such a dramatic improvement. Congrats.
 

Marsha16uk

New Member
Hi Blu
This is my first post, I have been lurking for a looong while and have been following your plight, I am glad I popped in today. it’s a triumph to read how you are conquering this dreaded problem. There is definitely a vast improvement and this gives me hope. I too have gone bald in the crown (approx 11 years) and around the edges, my hair loss was about the size of my palm and like you and the others, I refuse to give up and determined to prove the doctors wrong. With the help of a member on another forum, Nonie and VickiD your success stories, my scalp is gradually beginning to fill in. Blu, I hope to one day regain the length and thickness in my crown like you.

Vestaluv – I know how you feel, when you have tried everything and felt like nothing is working and depression sets in and you think what have I done to deserve this. You know, it has taken me a long time to discover that pray and consistency with your growth-aid really helps (essential oils, emu oil and mn). Don’t give up!
 
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