Through Pain, Through Tears Over My Hair Loss – I’m Still Standing

by Y on February 25, 2008

Through Pain, Through Tears Over My Hair Loss - I'm Still StandingI’ve managed to catch a cold/flu buggy thing again. Lucky me. But I was doing a bit of pondering over this last week as I would take my dog for his early morning walk (which he is still waiting for today by the way) about life. I’d walk along the streets in the brisk morning and just think about how lucky I am to be here, to be healthy (for the most part) to have my hearing, my sight and my wits about me. I am alive. What a gift huh? It isn’t going to last forever, we only have this moment because the future is uncertain and not promised to any of us. How could I have let the last 8 (almost 9) years slip away. Not lived, but only existed. What a waste that has been. My hair loss has caused me more agony and devastation than anything. I’ve felt I’ve lost myself a little bit each time I watched tons of my hair fall out and my scalp showed a little more. I’ve felt depression so deep and never thought I’d have strength to get out of bed again.

But here I am, realizing more and more each day that while my hair is really so unimaginably thin, I have so much to be grateful for. I am so very lucky. I think that is so important to never lose sight of. Trust me when I say I know your pain and know it intimately, but while I can’t 100% say “I am not my hair” and move on completely, I am able to put things into a much better perspective and my coping skills have improved dramatically to where I can at least know that life is more than hair, I have a lot to offer this world as do you. This is our time, here and now. Don’t let you hair loss make you change yourself, who you are. The people who love you will love you no matter what, it’s not your hair they love, it’s YOU.

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Helpful Hair Loss Abbreviations For Newcomers

by Y on February 21, 2008

Helpful Hair Loss Abbreviations For NewcomersA Blog Post By Dottie

Hey y’all,

I noticed that we use a lot of abbreviations when we talk about our histories & diagnoses here. I thought a simple index might help alleviate some confusion for the newbies. I included some basic information because I know that it took me awhile to figure some of this out, and I’m an RN! So here it goes…

AGA – Androgenetic Alopecia (AKA Androgenic Alopecia) is a common form of hair loss in both men and women. In men, this condition is also known as male-pattern baldness. The pattern of hair loss in women differs from male-pattern baldness. In women, the hair becomes thinner all over the head, and the hairline does not recede. Androgenetic alopecia in women rarely leads to total baldness. A variety of genetic and environmental factors likely play a role in causing androgenetic alopecia. Although researchers are studying risk factors that may contribute to this condition, most of these factors remain unknown. Researchers have determined that this form of hair loss is related to hormones called androgens.

Spiro – Spironolactone is a diuretic commonly prescribed for treatment of high blood pressure, but due to its anti-androgen properties may also be prescribed for hair loss.

AA– Alopecia Areata is a form of hair loss from areas of the body, usually from the scalp. Because it causes bald spots on the head, especially in the first stages, it is sometimes called spot baldness. In 1%–2% of cases, the condition can spread to the entire scalp (AAT-Alopecia totalis) or to the entire body (AAU- Alopecia universalis). Alopecia Areata occurs more frequently in people who have affected family members, suggesting that heredity may be a factor. In addition, it is slightly more likely to occur in people who have relatives with autoimmune diseases.

TE– Telogen effluvium is characterized by sudden, diffuse hair loss caused by an interruption in the normal hair growth cycle. A typical example of telogen effluvium is seen after pregnancy. In this condition women lose a significant amount of hair a few months after delivery when the protective effect of estrogen is removed. This shedding usually stops spontaneously and these patients will (generally) re-grow hair after 3 months.

Basics of hair cycles: In a normal healthy person’s scalp about 85% of the hair follicles are actively growing hair (anagen hair) and 15% are resting hair (telogen hair). A hair follicle usually grows anagen hair for 4 years or so, then rests for about 4 months. The resting or telogen hair has a club or bulb at the tip. A new anagen hair begins to grow under the resting telogen hair and pushes it out. Thus, it is normal to lose up to about 100 hairs a day on one’s comb, brush, in the basin or on the pillow, as a result of the normal scalp hair cycle.

PCOS– Polycystic Ovarian Syndrome is an endocrine disorder that affects approximately one in ten women. It occurs amongst all races and nationalities, is the most common hormonal disorder among women of reproductive age, and is a leading cause of infertility. The principal features are weight problems, lack of regular ovulation and/or menstruation, and excessive amounts or effects of androgenic (masculinizing) hormones. The symptoms and severity of the syndrome vary greatly between women. While the causes are unknown, insulin resistance, diabetes and obesity are all strongly correlated with PCOS. Common symptoms of PCOS include irregular, few, or absent menstrual periods, infertility, unwanted body hair, acne, and androgenetic alopecia.

I am not a physician, nor do I claim to know everything about female hair loss… I just hope that someone might find this helpful! I wish that there had been an easy “one stop” place for me to look for answers 20 years ago when I started loosing my hair. Maybe this information can help someone out there find answers.

About the author: Dottie is a community member of the Women’s Hair loss Project. To learn more about her and read her other blog posts, visit her profile: http://community.womenshairlossproject.com/Dottie/

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Why Me? Why Not Me? ShanLaree’s Hair Loss Story

by Y on February 19, 2008

Why Me ? Why Not Me? ShanLaree's Hair Loss StoryI finally decided that I would go see Dr. Roberts, a dermatologist in Portland, Or. She specializes in hair loss for women. I Just wanted to make sure that there were no real issues. I was hoping that it was all in my head. You see, I have always had extra thick curly hair. Stylists would tell me how lucky I was to have such thick curly hair. I would always say, “I wish I had straight hair”. Anyway- I decided that the shedding was not normal and the thinning didn’t seem normal. So, I decided I would go get checked out. I got checked once before and that was/is a bad memory and did not want to go through that again. I was 9 months pregnant and a Kaiser dermatologist said “You have Male Pattern Baldness disorder and it is hereditary”. He just looked at me and not anything else, no special scope was used or hair strand tested. I was in his office for 10 min. I went home and cried. I told my OBGYN at my next appointment and she said it was from the hormones and since I was about to have a baby that this sometimes happens and I should expect my old hair back. I did accepted it and then my hair was fine again (my hair did go straight while I was pregnant). Well that was in 2001. Now it is happening again and I had my last and final son in 2003.

So, 2 years ago I noticed my hair starting to shed again or thin a bit. I was kinda glad that my extra thick hair decided to become a little less thick and much more manageble. Then it kept thinning and I thought. ” Hmmm- what if this doesn’t stop?” Then I thought that everything would be fine and not to think about it. Then this past summer it started to shed and just thin and my scalp itched. I didn’t want to think about it. Except for I did think about it, every time I had to try to style my hair or get ready to go meet a client or go meet with consultants.

Oh no- it was now much harder and harder to style my hair like I usually do. Oh S–t! What am I going to do if this does not stop? I thought, I am not my hair. I am not my hair …I am more. [click to continue…]

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Looking For Hair Loss Love

by Y on February 16, 2008

Looking For Hair Loss LoveRecently I received an email from a woman named Danielle who was writing on behalf of her friend James. She wrote “Hi. I know this is not what this site is to be used for, but I’m looking for a companion for my friend, James. He’s such a wonderful person and has an amazing heart, but has suffered with alopecia for over 10 years. This condition has held him back from so many experiences (mostly because of the rejection it has caused) and I am frightened he will never find that special someone he deserves. I’m not telling him that I’m looking into this (he would be very mad as he has no self confidence left), but I feel this is the only way I could help him meet someone. Please let me know if we could post this. I know him very well and can answer just about anything anyone wants to know. I appreciate your help. Thank you.”

I wrote Danielle back telling her I’d be happy to post her email and also wanted to find out a couple more details about him. So some more facts about James are:

He is 31 years old and an architect living in Nassau County, Long Island NY

I do realize this is not a typical thing I usually post, but I have friend who met her husband on Match.com and is so happy, so I know internet romances bloom and are sometimes successful. A lot of women have written on this site, asking where all the good men are, maybe James is one of them, a man that would accepting of his partner also losing her hair. Heck stranger things have happened right?

If you have any questions for Danielle you can write them here. Or email me privately and I will send Danielle your email address so you can correspond further.

Yesterday was Valentines Day so the timing is nearly perfect 🙂 Incidentally I drove myself into a chocolate stupor yesterday, hope everyone had a good Valentine’s Day!

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Help For Julie – Please Share Your Thoughts

by Y on February 12, 2008

A woman named Julie left this as a comment on this thread today:

https://www.womenshairlossproject.com/hair-loss/hair-loss-suicide/

I have moved it here so that it will be more visible to other women so they can offer some words of support and help.

“omg i have contemplated suicide for 3 yrs now as i’ve begun to lose my hair and been to dr after dr after dr, they have given me dx’s only to retract them and say no its this… no its this.. so i dont know to this day what is wrong… pls can someone help me.. i would rather die than shave it all off and wear a wig but its coming to that day soon when i will be bald.. i dont know how to handle it and i’m scared.. pls soemone help me.  I’m in Charlotte NC and am literally about to die.. i cant take it anymore and have sought remedies for these past 3 yrs and when people see me coming they dodge the other way as i’m always upset about it but i cant help it, are women supposed to deal with this and look like this.. i should be in the prime of my life and all i want to do is die…pls can someone email me if theres help or a group in Charlotte I can go to”

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Dear Julie,

I first want to say, and you must believe I know what you are going through. I know the pain, the sadness, despair, depression and confusion that comes from suffering with hair loss as a woman. My hair loss began at 21, I am now 29. Over the years I’ve found myself so buried in sadness I never felt I could recover. I don’t know the particulars of your hair loss, I of course am not a doctor, but please share what you have been told and a little history about your hair loss and how it first began, and what treatments you have tried. I will do my best to help you in any way I can. For myself I hold in reserve that option to know I can always wear hair if I needed to. I’ve seen enough women with no hair actually wear hair to know how beautiful and undetectable it can be. True it isn’t our own hair growing out of our heads, but we can still look beautiful, feel good and live great lives filled with a lot of happiness. Hair loss isn’t the end. It is so easy to allow it to take over, to consume us, to change us and leave us feeling like a hollow shell of our former selves. But there is so much more. We are so much more than the sum of hairs on our head. Our lives are worth so much more than that. It is so important to think about how fortunate we are in so many other ways. When I feel weak and sad I look for strength in others who have conquered so much more, and are our out there living.

Please read Taylor’s Story, she is so inspirational. Here is the link:
https://www.womenshairlossproject.com/hair-loss/taylor-hair-loss-story/

Also here is a link to the story of a girl named Jordana
https://www.womenshairlossproject.com/hair-loss/schoolgirl-with-alopecia/

You are stronger than you imagine. You can get through this, please do not even consider suicide because of your hair loss. I get so sad when I read those words. Life is more than hair. I cry as I write this to you because I know the feeling intimately, I really do. I know what it is like to feel you cannot possibly live another day with the pain of seeing your hair get thinner and the worry of what the future will bring. But I have to tell you while I still have my insecurities I’m stronger today than I was 8 years ago when this all first started for me. You can get through this.

Please let me know more about your hair loss, the diagnosis you’ve received, treatments you’ve tried, when it first started, other medications you are taking and your age etc. I really want to help you the best I can.

~Y

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Sometimes Socializing Just Isn’t Fun When You Have Hair Loss

by Y on February 8, 2008

Sometimes Socializing Just Isn't Fun With Hair LossHi Everyone, It’s been awhile since I’ve written. I’ve been so busy with my job and my new nephew and of course my hair, what else. I definitely have enhanced coping skills but there is no denying the impact hair loss has on my life today. Tonight I have a get together with some friends I have not seen in a year, I was actually suppose to have this dinner weeks ago! But I managed to wiggle out of it with an excuse to only delay the inevitable. It sounds awful I know. I mean I going to be spending time with my fiance and a great wonderful couple, but all I think about it my hair. I’d wiggle my way out one more time if I could, but I just can’t. I actually cried about it days ago when the final plans were made. I was so upset after my fiance hung up the phone finalizing the time, making reservations and everything. I felt angry and sad. I had a major meltdown and was crying, and all at once I was flooded with all my hair loss devastation emotions. Each day since I’ve been looking at today like some kind of punishment. I hate feeling this way. But I know better, I know how I regret looking back on the last 8 years of life and missing out on so many things, fun, laughter… living. I’ll do my best to make myself feel good. I’ll start getting reading extra like 4 hours early because I have to prepare for my possible hair frustrations. Nothing is worse that have a hair tantrum and being late at the same time. So if I start early I’ll have plenty of time to prepare myself physically and emotionally 🙂 Who knows, I may even end up having a good time. I’ll keep everyone posted about how it goes.

In general my hair loss does seem to being doing better. The loss seems to have definitely slowed, but I am not really seeing any regrowth. I’m not hoping for miracles only to get back perhaps what I lost in the last year (since that deadly shed that never seemed to end) . Hopefully in time things will thicken up a bit. Just enough to get by, thats all I need.

One last thing I’d like to mention, for those women who haven’t yet check out the Women’s Hair Loss Project Network
http://community.womenshairlossproject.com

I encourage you to make a visit. It is a real unique way to connect with other women suffering with hair loss as well and there are so many wonderful supportive women on there. Well that time is nearing when I’ll have to start getting ready for my night out. I remember when this used to be such an easy process, shower, blow dry and go in 30 minutes. *Sigh*

P.S. I’m really really sorry for the duplicate email that got sent out yesterday to the subscribers that contained several of the previous posts in it. I switched the site over to a new server and it seems feedburner (the subscriber service) recognized some of those posts as new even though they were not. So apologies for any inconvenience that caused.

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Dee’s Hair Loss Story – Hair Replacement Buyer Beware!

by Y on January 29, 2008

Dee's Hair Loss Story - Hair Replacement Buyer Beware I guess I started noticing my hair loss after the birth of my daughter, 21 yrs ago. I have always had fine beautiful naturally golden blonde hair. But, when it started thinning, I resorted to perms. Most of the time I just looked fuzzy..Then I pulled it all back in a pony tail and clipped it up in the back… that seemed to be the last way I remember wearing it. before I made the LEAP..and it was a big one into hair systems. I guess it took me about 8 yrs to get to this point where I felt complete desperation.My hairdresser and long time friend, talked me into going to a salon out of town where she had heard about this guy who did hair weaves. I finally got brave enough to go. After his ‘thourough’ examination of my hair, he told me what I was not prepared to hear. The only thing that I could do at this point in my hair loss was to go to a track and glue hair system. He said it would be no big deal, just cut my hair a little bit in this track around the top of my head, then adhere the piece to it. No biggie…I told him I’d have to think about it for a while. I remember crying and crying over the fact that it was my only option, I had to do something… I felt as if this were some sort of social death sentence.So, I went back to his salon where, by the way, he did his hairpiece business upstairs away from his other clients. This I was happy with. I had had enough stares and rude comments from co-workers and even some family members to last a lifetime. I was ready for the humiliations I had suffered to stop. Well, he begins to cut my hair on top, then without warning begins to shave the entire top of my head. I was in shock and began crying …”what are you doing?” He said this is what he had explained to me the week before. I’m telling you…I don’t remember ever hearing about the shaving the head part. But at that point, it was too late…there was no turning back. He then proceeded to place on my head the most horrible thing I’d ever seen in my entire life…It was ashey grey in color..not even blonde. The hair was so thick you could barely get your hands through it. I sobbed and sobbed in that chair as he tried to thin it out and give me a totally different hair style than I was wearing before. He said “no one will even notice, they’ll think you’ve just got a new hairstyle”. He cut it in a “Florence Henderson” style (from the Brady Bunch)…said it would look more natural that way. Well it looked anything but natural, it looked like a little old ladies wig. I was completely devastated…I did not leave my house the entire weekend. But, I had to return to work on Monday and I dreaded it like nothing I’d ever dreaded before. [click to continue…]

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Conditioned To Feel Pain and Sadness – Hair Loss Has Done This To ME

by Y on January 24, 2008

Yesterday I woke up with pain on my scalp, a soreness I hadn’t felt for quite sometime. I know what it’s called, Trichodyia. I dread it because in my experience it always seems to correlate with a impending hair shed. I’ve been doing okay so far, since I’ve reduced my synthyroid dosage and my hair loss has improved and seems more stable. But now this, why now? I certainly don’t tie my hair tight in a ponytail, it always fairly loose because if it’s tight I can feel every single follicle tugging. Why now? Even though nothing has changed today and yesterday, I just feel a great sadness. The thought of the possibility of enduring yet another shed brings me to tears. I’ve been in hazy lack luster state since this began, paralyzed by fear thinking I won’t be strong enough to take anymore… my hair can’t take anymore. I feel like I’m one shed away from being entirely bald. Eight years of dealing with this, I know that isn’t true, I know even with all the shedding I somehow manage to make it through and get by, but I still feel the sadness and the pain. I type this though tear obscured eyes. The possible impending shed isn’t even here and may never come yet the pain on the scalp was enough to made me incredibly sad. Like any other conditioned response, my hair loss as conditioned me to feel pain and sadness.~Y

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So Sorry That I Took My Hair For Granted – Amber’s Hair Loss Story

by Y on January 21, 2008

So Sorry That I Took My Hair For Granted - Amber's Hair Loss StoryHello Everyone. I am so happy to know that I am not alone in my hair loss devastation. I am a 28 year old mother of four. I’ve been experiencing heavy hair loss and extreme changes in the texture of my hair since the pregnancy with my daughter 5 years ago. Much to my dismay, my doctors were telling me that I was pulling my hair back too often or that my hormones just needed to get back to normal or that the straightening process I had done had caused the loss. So for five years I have watched my very thick, very curly hair become thin and straight thinking that one day it would magically reappear. It was two weeks ago that I had a scalp biopsy and was diagnosed with andogenetic alopecia. To boot, I am losing it from all over my head, not just the top. My dermatologist is pretty cruel and just chuckled and said “There’s nothing you can really do. Use Rogaine.” I am devastated. My daughter has hair just like mine used to be and I’m actually jealous of her. I’m debating whether to have the fifth child that my husband and I wanted but I don’t want to spark any excess shedding episodes. I have started Rogaine as it is the only FDA approved medication for women but I am feeling very lightheaded and somewhat dizzy so I’ll probably have to stop. I realize like many of you that this has quickly become an obsession. I know that I am not my hair. But let me tell you, after four children, my body is beat. My hair is the only attribute I have left and I’m losing that now too. I’m at an incredible loss. I can’t imagine what it will look like when I’m 40. Please give me any feedback you can and I hope this post helps someone feel not so alone as this site has helped me tremendously.
Thank you,
Amber

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Dear Amber,

You are not alone in your feelings and struggles. I wish I knew why most doctors are so insensitive and callus toward the women who seek out help for their hair loss. I can’t explain why they do it, but it is an unfortunate very common occurrence. Was your dermatologist by any chance a man? They seem to be the least understanding.Just like the birth control pills can somethings kick in the onset of androgenetic alopecia early so can the hormone shift of having children, sometimes there is just no rhyme or reason, but undoubtedly we are never prepared. There are other “treatments” used to treat women’s hair loss such as low androgen index birth control pills and aldactone (spironolactone). All hair loss treatments carry the risk of possibly igniting some extra shedding at first. It’s the whole, “has to get worse better it gets better type thing.” It’s all a very personal decision what a woman chooses to use to treat herself, and she has to fully understand the postives vs. the negatives. Hopefully in time there will be more studies done to figure out what exactly causes women’s hair loss and then with any luck a real solution for women’s hair loss will follow. [click to continue…]

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Desire To Be Bald – Gosia’s Hair Loss Story

by Y on January 19, 2008

Desire To Be Bald - Gosia's Hair Loss StoryThe title may seem to be surprising.. but, actually, when analyzed accurately.. it is not. I have been an AGA sufferer for a few years now. and I AM SICK OF THIS SITUACION. What I want now is only “to have this situation solved one way or another. Either grow back or fall out completely. So that I can resolve it and move forward.” Based on my prior experience I know that grow back is impossible. You may say I gave up. Yes, I did. Because there is no point trying to fight with anenemy you don’t understand and one you are blind and deaf against. You will only go through better and worse times, being moody so that people around will not stand you anymore. Curing uncurable puts you in a perpetual state of false hope. You neither have decent hair nor a good replacement; You’re betwixt and between.I have had enough. Finished medical treatment and wait for so little hair to shave it off. Be beautiful for myself when totally bald. I can accept it. And being beautiful to people around who have no idea, when wearing the best available vacuum wig. Just hard times for me when the final hair loss comes. Wish me strength. I hope I manage.”I am literally a shell of my old self and I am quite frightened. Sometimes I just want to shave my head and get a full best quality undetectable wig so I don’t have to see anymore hair in the shower drain, sink, bathroom floor, back of my shirt, etc. I don’t want to have a partial replacement system on a clip, as it is just inconvenient.I don’t want to have a partial replacement system based on adhesives as I would never accept my looks with severe typical men’s baldness. I want to shave my head and become beautiful again. And I will.Nobody can understand me. But I do not care. This is only my life and my best times (I am 24)

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Dear Gosia,

Thank you so much for writing your story. Your thoughts are my thoughts. Your feelings are my feelings. On more occasions than I can count I have wished for there to be some finality to this never ending hair loss nightmare. Some closure…anything. I’ve felt the torture, the decline and slow death of my self esteem tear away minute by minute, day by day and year after year. You reach a point where you throw your hands up in the air and say “if I’m going to be bald then fine let it happen all now and let me get on with my life, because this strand by strand thing is eating me alive.” [click to continue…]

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