MiaFlores
04-09-2010, 07:29 AM
I'm in my mid thirties and I lost about 50% of my hair in the five-six months I was off birthcontrol (second half of 2009...I wrote an emotional screed about my story/situation in the Rants forum).
I know some of the hardest things about going through hair loss is that feeling of being robbed by something out of your control, and the fear that it may not stop, may be hopeless. And, while it's helpful to know you're not alone and that others out there are supportive, these forums can in some ways be depressing. Afterall, everyone posts when she's suffering/losing, few post when things are improving (tentatively). Fewer yet post successes. Therefore, I'm sharing my "tentative hope" report and to be honest about the good AND bad news.
First, let me say what so many others have: Be your own advocate. Inform yourself, and if the first doctor you talk to won't take you seriously or won't address the cause of your issue, get a second opinion. And a third. My former gyno is a fine doctor in many senses, but if I'd taken her word alone, if I'd not gone out for a second opinion, I'd probably have barely any hair left by now. Since then I've worked with other doctors who have been great.
So...here's what's been going on:
Treatment
-----------
* In late December, my GP put me back on NuvaRing (I know some rail against Nuvaring vis a vis hairloss, but whether it's a plus or minus depends on your own body chemistry and hairloss cause. My hairloss is tied to low estrogen and fluctuations in estrogen, and possible premature ovarian failure.Your situation may differ.)
* In mid January, we added 200 mg (slowly ramped up from 50) daily and men's Rogaine once a day (I can't managed 2x, so we've started with one.)
* I continue to take Hair/Skin vitamins and Iron
In the Process...
----------------
* Shed continued through January. Then in February (about 3-4 weeks into the Spiro and Rogaine regimine), the shed *increased* for about a month. Horrible, painful, nailbiting time.
* During that same time, a few little stubbley hairs started to appear around the hairline and in the temple patches. At first I worried it was breakage, but no, it appeared to be the start of some new hairs!
* My GP and Gyno told me to use NuvaRing continuously unless I have breakthrough bleeding, then take it out for a minimal period. Since going back on, I have had breakthrough bleeding on one occasion (this month). I took the ring out for barely two days--long enough to start a moderate period--and returned to it. So far, that two day break doesn't seem to have had too bad an effect.
Where it stands now:
---------------------
* Positive: shedding has slowed WAY down--from about 200 a day at my worst to between 10 and 60 a day, probably averaging out to about 25-30 per day. (Hope this stays well!)
* Positive: Skin has improved considerably. Some light breakout around "cycle", but little.
* Positive: the hair around my hairline (front and back) and temples is filling in considerably--most of it is between 1/2" and 1-1/2" right now. I pulled my hair back off my face in a ponytail/bun for the first time in 8 months yesterday! (Sure, I had sort of a "halo" in the front where hairspray failed to keep those baby hairs slicked down, but beats the nearly-bald temples I had before!!!)
* Negative: The hair at the crown has been much slower to respond.
* Positive: ...but, in the last 2-3 weeks there finally does seem to be some darkening/filling at the crown (so I'm holding out hope that it'll fill in more in time--doc said it usually fills in from edges to crown--like a bulls eye!)
* Negative: I'm still wearing a partial wig anytime I wear my hair down. I cut my waist/hip length hair to bra strap length, but I'll probably be in the partial wig for a long time because even best case scenario, it'll be years before new hair is long enough to blend in.
* Positive: But my hair *is* getting a more dense at the root, even if I have an "AGA/TE mullet" for a few years. ;)
* Negative: still need Toppik almost daily and whenever I'm not wearing the partial
* Positive: needing a lot less Toppik than three months ago.
* Negative: My eyebrow hair is suddenly growing a lot faster. More grooming sigh. Also had to pluck my first-ever mustache hairs, but it was only a couple.
* Positive: I've lost the hormone crash weight.
* Positive: So far, I've been tolerating the spiro pretty well. I do have to be a little careful to monitor my fluid intake when I work out or exert myself (once or twice my BP dropped a little and I felt woozy until I drank a big bottle of water or some caffeine), but otherwise....
* Positive: Since going back on the estrogen (ring), the depression problem has gone away. I get the blues still, absolute, but not all the thoughts of killing myself.
* New Information: Two weeks at my annual gyno exam, my new OB/GYN tested me for vitamin D deficiency and discovered I also have that. Am now on a mega dose of D until it recovers.
What's Next
-------------
* For now sticking with the program. Trying to be hopeful that it will continue to improve and that one day I won't have to pepper my crown or part with toppik, and that one day further down the road, I can get rid of that wig.
* Once hair growth reaches an acceptable point (if it does), GP says we'll look into things such as lessening the spiro dose or Rogaine frequency/dose.
* My new Ob/Gyn is advising and helping me think through what to do (if anything) in terms of checking for the possible fertility issues I have (which would likely be tied to the same issues that caused the hairloss), and she seems sensitive to my hairloss issue/concerns: willing to address how we could minimize hormone shock and hairloss if I do explore these options.
So that's the report from the front. Emotionally...this remains difficult. I'm trying to be positive, and most days I am. But, even though I'm seeing improvement (for which I am grateful), it's been such an ordeal, that I'm not always able to be upbeat and I'm not confident yet about the final outcome--I keep hoping there's not another shoe waiting to drop. Also, I still feel very ugly all the time--like people are staring at me, that they'll figure it out. Even when I know I look good (when I'm wearing the partial, for example), I feel self-concious. I don't feel "free" like I used to--my hair is so much shorter than it used to be, and a lot of it isn't rooted on my own head, so it moves differently etc. I'm less minute-to-minute obsessed than I was three months ago, but I still worry daily/every time I walk out of the house about covering my thin hair, and I'm not comfortable telling even close friends. I realize a lot of this has to do with the trauma of the past 9 months--these feelings of ugliness and fear and loss will linger for a while--but I hope in time I'll be able to feel a little bit pretty sometimes again.
So...there itis. My epic tome of the good, bad and ugly. I hope someone finds it helpful to read. Thanks for listening!
I know some of the hardest things about going through hair loss is that feeling of being robbed by something out of your control, and the fear that it may not stop, may be hopeless. And, while it's helpful to know you're not alone and that others out there are supportive, these forums can in some ways be depressing. Afterall, everyone posts when she's suffering/losing, few post when things are improving (tentatively). Fewer yet post successes. Therefore, I'm sharing my "tentative hope" report and to be honest about the good AND bad news.
First, let me say what so many others have: Be your own advocate. Inform yourself, and if the first doctor you talk to won't take you seriously or won't address the cause of your issue, get a second opinion. And a third. My former gyno is a fine doctor in many senses, but if I'd taken her word alone, if I'd not gone out for a second opinion, I'd probably have barely any hair left by now. Since then I've worked with other doctors who have been great.
So...here's what's been going on:
Treatment
-----------
* In late December, my GP put me back on NuvaRing (I know some rail against Nuvaring vis a vis hairloss, but whether it's a plus or minus depends on your own body chemistry and hairloss cause. My hairloss is tied to low estrogen and fluctuations in estrogen, and possible premature ovarian failure.Your situation may differ.)
* In mid January, we added 200 mg (slowly ramped up from 50) daily and men's Rogaine once a day (I can't managed 2x, so we've started with one.)
* I continue to take Hair/Skin vitamins and Iron
In the Process...
----------------
* Shed continued through January. Then in February (about 3-4 weeks into the Spiro and Rogaine regimine), the shed *increased* for about a month. Horrible, painful, nailbiting time.
* During that same time, a few little stubbley hairs started to appear around the hairline and in the temple patches. At first I worried it was breakage, but no, it appeared to be the start of some new hairs!
* My GP and Gyno told me to use NuvaRing continuously unless I have breakthrough bleeding, then take it out for a minimal period. Since going back on, I have had breakthrough bleeding on one occasion (this month). I took the ring out for barely two days--long enough to start a moderate period--and returned to it. So far, that two day break doesn't seem to have had too bad an effect.
Where it stands now:
---------------------
* Positive: shedding has slowed WAY down--from about 200 a day at my worst to between 10 and 60 a day, probably averaging out to about 25-30 per day. (Hope this stays well!)
* Positive: Skin has improved considerably. Some light breakout around "cycle", but little.
* Positive: the hair around my hairline (front and back) and temples is filling in considerably--most of it is between 1/2" and 1-1/2" right now. I pulled my hair back off my face in a ponytail/bun for the first time in 8 months yesterday! (Sure, I had sort of a "halo" in the front where hairspray failed to keep those baby hairs slicked down, but beats the nearly-bald temples I had before!!!)
* Negative: The hair at the crown has been much slower to respond.
* Positive: ...but, in the last 2-3 weeks there finally does seem to be some darkening/filling at the crown (so I'm holding out hope that it'll fill in more in time--doc said it usually fills in from edges to crown--like a bulls eye!)
* Negative: I'm still wearing a partial wig anytime I wear my hair down. I cut my waist/hip length hair to bra strap length, but I'll probably be in the partial wig for a long time because even best case scenario, it'll be years before new hair is long enough to blend in.
* Positive: But my hair *is* getting a more dense at the root, even if I have an "AGA/TE mullet" for a few years. ;)
* Negative: still need Toppik almost daily and whenever I'm not wearing the partial
* Positive: needing a lot less Toppik than three months ago.
* Negative: My eyebrow hair is suddenly growing a lot faster. More grooming sigh. Also had to pluck my first-ever mustache hairs, but it was only a couple.
* Positive: I've lost the hormone crash weight.
* Positive: So far, I've been tolerating the spiro pretty well. I do have to be a little careful to monitor my fluid intake when I work out or exert myself (once or twice my BP dropped a little and I felt woozy until I drank a big bottle of water or some caffeine), but otherwise....
* Positive: Since going back on the estrogen (ring), the depression problem has gone away. I get the blues still, absolute, but not all the thoughts of killing myself.
* New Information: Two weeks at my annual gyno exam, my new OB/GYN tested me for vitamin D deficiency and discovered I also have that. Am now on a mega dose of D until it recovers.
What's Next
-------------
* For now sticking with the program. Trying to be hopeful that it will continue to improve and that one day I won't have to pepper my crown or part with toppik, and that one day further down the road, I can get rid of that wig.
* Once hair growth reaches an acceptable point (if it does), GP says we'll look into things such as lessening the spiro dose or Rogaine frequency/dose.
* My new Ob/Gyn is advising and helping me think through what to do (if anything) in terms of checking for the possible fertility issues I have (which would likely be tied to the same issues that caused the hairloss), and she seems sensitive to my hairloss issue/concerns: willing to address how we could minimize hormone shock and hairloss if I do explore these options.
So that's the report from the front. Emotionally...this remains difficult. I'm trying to be positive, and most days I am. But, even though I'm seeing improvement (for which I am grateful), it's been such an ordeal, that I'm not always able to be upbeat and I'm not confident yet about the final outcome--I keep hoping there's not another shoe waiting to drop. Also, I still feel very ugly all the time--like people are staring at me, that they'll figure it out. Even when I know I look good (when I'm wearing the partial, for example), I feel self-concious. I don't feel "free" like I used to--my hair is so much shorter than it used to be, and a lot of it isn't rooted on my own head, so it moves differently etc. I'm less minute-to-minute obsessed than I was three months ago, but I still worry daily/every time I walk out of the house about covering my thin hair, and I'm not comfortable telling even close friends. I realize a lot of this has to do with the trauma of the past 9 months--these feelings of ugliness and fear and loss will linger for a while--but I hope in time I'll be able to feel a little bit pretty sometimes again.
So...there itis. My epic tome of the good, bad and ugly. I hope someone finds it helpful to read. Thanks for listening!