Will this be permanent??? Here's my story:

[ANN1]

I'm 34 years old, married and have two children who are now 4 and 1 1/2. In the last several months, my life has gone from happy and care free to stressful and upredictable.

Six months after the birth of my youngest child (July '08) I noticed a change to the texture of my hair however, never really thought anything of it other than the usual post pregnancy oddities that occur after your child is born. Oh how I wish this was the case!

This past March I noticed a bald spot towards the front of my hair. I visited the dermatologist and was told I have Alopecia Areata which she treated with cortisone shots and Rogaine. The treatments seemed to be working, my hair was growing back and the loss seemed to stop. A month later (April '09) a new spot appeared and it has not stopped since. I feel totally out of control and afraid for what the weeks ahead will hold. I cry daily and think about this nonstop. It's easy to think and try to say to yourself, "well at least it's not cancer and I'm not dying" and it's not, but I think in a weird way it's what makes this so difficult. I don't want people to feel sorry for me or feel pity upon me, I just want to be able to live a normal life and not "become my hair disease." I worry about how I'm going to be able to do the things I love to do - run, swim, boating - if I am wearing a wig or trying to hide the thinness. I worry about the effect on my children as they grow up and have to explain why their mom doesn't have hair. There are so many things going through my mind!

I am currently waiting for blood results to come back from my doctor. He is very thorough, digging deeper and checking EVERYTHING. Initial rounds of testing, everything came back within normal ranges. The only oddity was a positive ANA test which I have been told can be false many times.

I initially thought that stress was the cause but I don't feel that my life is any more stressful than anyone else's. I am convinced that this was started by some type of hormonal imbalance. I don't believe I can go 34 years with no symptom whatsoever and then suddenly it happens. 2 months after the birth of my youngest I had the Mirena IUD put in. Looking back I have an intuition that this has had something to do with the hair loss. I am having it removed tomorrow just in case it does have something to do with it. Has anyone else out there had this experience with Mirena? Maybe I am reaching for a cause and there is simply not one there.

I am confused! Once you are diagnosed with this, do you have it permanently? Is it possible to successfully grow your hair back and not have another relapse or is this a constant battle that cannot necessarily be "won" but simply coped with? I am so glad to have found this site!

[Angela]

Hi Ann,
I'm sorry you are going through this. I know hair loss is a devastating thing. I have both scarring and non-scarring alopecia, and I have had bouts of remission. Right now I seem to be in remission and my hair is growing in thicker than it has in six years. When my hair got really thin, I shaved it all off and got a wig. I made several attempts to grow my hair back, and last year I had enough of shaving and wearing a wig, so we shaved it off (after a two year remission) when my hair started falling out in clumps again. AA is extremely elusive and you never know when it will fall out or go into remission. My hair could start falling out tomorrow again. I have also had one bout with Alopecia Universalis and lost almost all my hair everywhere. Some of that hair never grew back, but since being out here in NM, I have seen a lot more body hair too. There is one woman I know of that has AA (she's no longer on the Network) that used to have major sheds of hair during her period. She believed it was tied to her hormones.
If you have a positive ANA and you have the distinct circle patches of AA, then most likely you have been diagnosed correctly.
Its a scary thing going through this, but please know that you aren't alone. There are so many beautiful women on the Network and Forum who will listen and be a source of support to you, regardless of the type of hair loss they have or how much they have lost. We all know the affect that this has on us emotionally.

There is no cure for AA. That is the bad news. There are treatments, but I guess you have to assess for yourself if they are right for you, and there is no guarentee that they will work 100%. I don't like to bear the bad news about it, but the more informed you are about your options, the more in control you will feel about the best course of action to take. It's also good to take note of different things that could trigger your hair loss. For myself, I'm allergic to mold and that triggers it for me. Also hair dyes and chemicals. I could have other triggers, but those are the only ones that were blazingly clear to me and easy to see.

My question to you is what do you want to do in the event your hair loss continues? If you end up losing a good majority of it, what are you thinking you would like to do? Wear a wig or topper, headwraps, go out completely bald? Even though you can't control if your hair will fall out or grow in, you can control what you do about it.

Children...
I have four children and one grand child. For years I hid my hair loss under a wig, only taking it off briefly and then reattach it. I didn't like anyone in my immediate family to see me with a shaved head, even though my children and husband said I looked good bald. It took till last year to really look at myself and determine that I did look good bald. I am an Alopecian, and I was tired of hiding it. So I took the chance and went out bald. My children had no problem with it, their friends (my younger children's) thought I was the coolest mom ever, and my older girls' friends thought I looked hot. What 16-19 year old boys think bald fat women are hot? LOL I was very surpised. It took me accepting my hair loss and myself to realize that everyone around me (including strangers) accepted my new look too.

I found that there is no room for pity or people feeling sorry for me when I was happy in my own skin. My hair loss was just kept quiet in the family and I was mortified at the thought that someone might figure out that I was wearing a wig. But once I made it clear that I was an Alopecian and I may have hair today, bald tomorrow or a wig next week, I gave myself permission to be what ever I wanted to be physically.
It takes time to come to the place of acceptance. First we have to grieve the loss. It isn't petty nor is it vain for thinking or caring about your hair. Hair actually serves a vital purpose beyond asthetics. I never knew how important hair was until I lost all my nose hairs once...eyelashes too! God, we think about mascara and how pretty eyelashes are, but eyelashes keep particles out of the eyes and when they aren't there, everything gets in the eyes.

Its ok to cry about, get pissed off, rant and rave. The important thing is to get it all out.

I'm glad you've joined us :>

[kawawa]

Hi Welcome to the Forum. My hair loss started at about 29ish 30ish right after a C-section. I am 44 now and wear a topper, my hair never grew back, but I did have some years where it was better and some where it wasn't. I never cried, but boy was I embarrassed by my balding head! I felt shame and it kept me from doing some things. I just sucks but we are all here with the same problem for support.

All my best
KAWAWA
kicking ass with a wig attached

[finaleofseem]

I wish I could tell you whether this will be permanent or not, but (as usual) Angela and KAWAWA said things much better thank I could have.

Either way, I'd like to second Angela's parting words: this is a process, and not only is it OK to cry and get pissed off, I found that it was necessary to do so to get to the point of acceptance that I'm at right now. So, girlie, let it all out. It takes time, but it really does help. Of course I'd love to have my hair back, but if it doesn't happen (and it seems in my case it won't), I now know I'll be just fine.

[Shania]

I noticed you mention you have the Mirena Coil if you google Mirena Coil and hair loss just see how many women of all ages have lost hair because of this. One of the side effects is alopecia I didn't know this until I had lost 50% of the thickness of my hair and it didn't help when Doctors deny that this is the cause even though they know it is listed in the manufacturers leaflet.

On a plus side a lot of women have contacted me and told me their hair grew back but it will take a while. Mine has been out 5 weeks now and I have noticed a wispy fringe growing so I feel so much more positive.

I am also taking biotin which I have been told encourages hair growth.

Don't give up there is light at the end of the tunnel.

Shania x

[ANN1]

Thank you all so much for your words! I am hoping that with each day I can come to accept this as a part of my life. I think I am still in disbelief, like I'm having an out of body experience!

Angela, interesting what you said about the lady who had major sheds of hair around her period...mine seems to occur in monthly cycles.

Shania, I am getting my Mirena taken out today. Did you notice the shedding stopped once you had it removed? This may have nothing to do with my hair loss but at this point, I'm not willing to take a chance. Thanks for sharing your story.

finaleeofseem, how long have you had this and how long did it take you to finally come to accept it?

For those of you that have wigs or toppers, have you found a type that you would recommend? Do they stay on when exercising, swimming, walking, etc? Do you tell friends and family that you have one? I don't even know where to start but I think I need to get a plan in place just in case this escalates.

Thanks for reaching out!!! :)

[Angela]

Thank you all so much for your words! I am hoping that with each day I can come to accept this as a part of my life. I think I am still in disbelief, like I'm having an out of body experience!

Angela, interesting what you said about the lady who had major sheds of hair around her period...mine seems to occur in monthly cycles.

Shania, I am getting my Mirena taken out today. Did you notice the shedding stopped once you had it removed? This may have nothing to do with my hair loss but at this point, I'm not willing to take a chance. Thanks for sharing your story.

finaleeofseem, how long have you had this and how long did it take you to finally come to accept it?

For those of you that have wigs or toppers, have you found a type that you would recommend? Do they stay on when exercising, swimming, walking, etc? Do you tell friends and family that you have one? I don't even know where to start but I think I need to get a plan in place just in case this escalates.

Thanks for reaching out!!! :)

I had a lace hand tied human hair wig. I used the super strong adhesive tape and only removed it every three days. I took a shower in it and did all my regular things in it. The adhesive is very strong so even on a really windy day there is no way that sucker is coming off.
Only my children and husband (and maybe a few closer friends) knew it was a wig. Part of my own torment was hiding the fact that I was losing my hair. No one ever knew it was a wig. Here is a link to my photo album with the wig I used to have:

http://community.womenshairlossproject.com/Angela/albums/232/1133

In those pictures I put it on straight out of the box after not using it for a few years. It was very good to me. LOL

There are other ladies on the Forum and Network that have photos of their wigs or toppers also.

I would recommend finding a wig salon in your area. Not an old lady salon where the majority of wigs look like something for 85 year old woman. Find a good wig stylist that knows what she is talking about and knows how to cut wigs. She should be able to help you explore the different options concerning what you would like. There are so many different types of wigs, toppers and integrated hair systems so that you are never left feeling like nothing will work. Of course the better the quality the heavier the price tag, but if you find something that works for you, why not. My wig cost close to $1,000.00 and online right now it's selling for $1,200.00
There are synthetic wigs that look really great also and they are usually less expensive.

You don't have to tell others that you are wearing a wig. Some prefer to keep that private...kind of like telling others what color underwear you're wearing today. Its nobody's business. You don't necessarily have to lie about it either. When women would approach me about my hair, they never asked if it was real or not...they just wanted to know who cut and colored my hair. I would always tell them where to go, but never said it was a wig salon. They do cut hair at the wig salon as well and they do a fabulous job. So why not send business their way. I'm sure if any of the ladies that asked me where I got it cut and colored went there, they would have been confused and thought they got the information wrong.

You have lots of choices, and in that comes your control. You can get excited to have the hair you've always wanted and its always the perfect color and cut. Want something different? Change it up and get a whole new look. Its a great excuse to do a make over. Wig shopping can be a really fun experience too. Its all about how you approach this. You can go in terrified and fearful, or you can go in excited for a brand new look and enjoy trying things you would never wear. Pink hair, blue hair, blonde, short, long, curly, straight, frizzy, old lady look...the world is your oyster. Take someone you trust with you and make sure they try them on too. :D

[Shania]

When I had the Mirena removed my shedding didn't stop and I did feel lots of tingling all over my scalp which did alarm me but that feeling has stopped now. I think it takes a while for the hormone to leave your system from what other ladies have told me. This last week I don't seem to be losing as many hairs so I think it is now slowing down and I can definitely see small hairs sprouting around my hairline.

It will take time for my hair to grow back because I had the Mirena for over a year and I was losing handfuls of hair every day and it got to the stage that I was frightened to even brush it.

I know the Mirena was to blame in my case and I think Doctors should make their patients aware of this known side effect because mine laughed and told me it was my age which is complete rubbish because there are women in there 20s who have lost hair because of this.

Shania x

[finaleofseem]

Ann,

I'm turning 24 next month, and I'd say I've been losing my hair since I was around 14. I finally bit the bullet and had a PCOS test (results in a week), but from what I can tell, it's hormonal for me, even if it's not PCOS.

It took me ... well, it took me a long time to come to terms. For a few years I thought I was just crazy. My mother, while well-meaning, didn't even listen to me about my hair. It took me sitting her down and showing her pictures for her to listen, when I was 19. So, I went to a dermatologist, and went on some meds, and was still in denial.

I would say I didn't even think about ever needing to wear supplemental hair or anything until this past fall, and then I had a breakdown. I finally told my friends and my boyfriend, and cried pretty much constantly. I was grieving for all the years of denial.

Then, in January, I just ... got over it. I mean, I'm still sad. I still have bad days where I cry. I still get a little panicked when thinking about looking for wigs or toppers. But I don't look at myself and hate what I see anymore. I know my boyfriend will love me regardless. I know I will love me regardless, and that I can go the lace wig route when I'm ready.

Everyone is different, but for me, researching cosmetic options and focusing positive energy in other areas of my life have really helped me change the way I think of myself and my hair. Since February I've lost 25 lbs, and I'm committed to not using my hormonal issues and hair loss as an excuse for being fat and unhappy anymore. I work out, and I do yoga. Through both I've learned to love my body more, and accept that it will never be perfect. I just have to do the best with what I have. So, I apply that philosophy to my hair.

Or at least I try. Ask me again tomorrow. :)

Sorry for the rant!

[kas09]

Are U waring a wig?

[ANN1]

Wow Angela! You look amazing! Thanks for linking your pics!
I'm not wearing a wig currently but it definately eases my anxiety to at least know what's out there if I do end up needing one. This is been very helpful for me in my process to come to terms with all this. In fact, anyone I talk to to about my issue thinks I'm crazy because you really can't even tell unless I expose my round bald patches.

I had my Mirena removed a few days ago and saw the dermatologist also. I took some bloodwork which came back with a Ferritin level of 47 which she said anything below 80 is too low to actually grow hair. I feel in good hands with her as she has also been suffering from hair loss (she is 36). I'm using Rogaine all over my scalp and possibly going to start Plaquenil. Has anyone had a low ferritin level, taken iron and it's actually helped the problem? I'm finding a lot of posts on different things people have done or tried but not many follow ups on what has worked (maybe I'm not looking in the right threads?)

One thing I have learned is that for anyone who "thinks" they are having hair loss, it probably means you are! I first thought my hair was falling out about 18months ago and it took getting bald patches to finally quit denying it.

No crying this weekend though! It's sunny, 86 degrees and I'm relaxing with a pool and beautiful lake view!

One day at a time! Thank you for all your responses!!! :)

[gale]

I tried Rogaine and discovered for some reason it did not work for me, but know some one else that it worked great for. (told the whole thing so no need to look for follow ups).:)