October 5, 2011 8:35 AM   Subscribe

I'm a 23-year-old female who suffers from a pretty extreme case of hirsutism (excess facial/body hair). I've been through the gauntlet as far as tests go, and no underlying cause has been determined. Help me figure out what's wrong with me.

So I'm 23 years old and I'm basically a bearded lady. I have hundreds of terminal hairs (the thick, dark, scratchy, beardy kind) on my jawline, chin, and neck, and it gets worse and worse all the time (over the past few months, the hairs have started to migrate up onto my cheeks). This is incredibly distressing to me, as I'd otherwise look reasonably attractive and feminine. I take care of the problem by spending about an hour a day plucking and shaving, but I still bristle if anyone touches my neck, and worry if anyone looks at my face/neck up close or from certain angles.

The problem started when I was about 18 with just a few hairs on my neck and gradually increased, but over the past few months, the rate of new hair growth has gotten so alarming that I sought medical attention for it. I'm now seeing an endocrinologist, who has ordered numerous blood tests and ruled out:
- PCOS, and other disorders caused by androgen excess (my testosterone levels aren't elevated at all)
- Cushing's disease (cortisol is normal)
- thyroid disorders

Basically, all of my blood work comes back normal, aside from the fact that my estrogen levels are sliiiightly low, but still within the range of normal (also, I'm apparently not ovulating). My endo has suggested that maybe I'm just genetically hairy, but NO ONE in my family suffers from this kind of problem. I have no other alarming symptoms, other than depression/anxiety.

I've purchased several laser hair removal sessions, but I can't afford anymore, and my health insurance won't pay for anything related to hair removal because they say it's not medically necessary. Plus, I feel like I'm fighting a losing battle anyway, as my ability to pay for hair removal sessions cannot keep up with the rate of new hair growth.

I know YANMD, but does anyone have any ideas as to what could be wrong with me, or thoughts on what I should do next as far as treatment goes? I'd also love to hear general advice on coping, from other women who suffer from hirsutism.

Throwaway email: hirsutehattie@gmail.com
posted by anonymous to Health & Fitness (25 answers total) 5 users marked this as a favorite
I'm so sorry you're going through this.

You might look for tips on online sites that cater to people who are transitioning from male to female. They may have some tips on hiding or restricting hair growth, spacing out payments for hair removal, what to do between sessions, etc.
posted by Madamina at 8:39 AM on October 5, 2011

Oh, sweetie, I'm so sorry. Where are you located? That might help us find a doctor and/or medical group who might be able to help. Also: for your removal needs, there ARE two at-home laser devices which were recently approved and apparently work fairly well... might be worth the investment. One of them is the Trio; I forget the other...
posted by julthumbscrew at 8:44 AM on October 5, 2011

This is not meant to be funny at all--only because you mentioned the bearded ladies. Some were very famous cases--have you researched their histories to see what was learned?

Another fact about bearded ladies, at least the notable ones--they all got married and had families. So if a remedy can't be found, do not by any means suppose that there is not someone, or someones out there for you.
posted by oneironaut at 8:58 AM on October 5, 2011

Basically, all of my blood work comes back normal, aside from the fact that my estrogen levels are sliiiightly low, but still within the range of normal (also, I'm apparently not ovulating)

Did they do an ultrasound of your ovaries? Because unfortunate hair growth + slightly low estrogen + not ovulating sounds a whole hell of a lot like PCOS, even if your testosterone isn't elevated. Are you taking the pill?

I've had PCOS for 20 years at this point and it's a never ending source of angst in my life. I have hair growth under my chin area and upper chest that I pluck religiously. The unwanted hair growth slowed once I started to take the pill/metformin/spironolactone combo that is now commonly prescribed for treating PCOS. Nothing has helped the even more unfortunate hair loss, unfortunately.

Have any of the doctors mentioned Vaniqa? It's a cream that you use daily that reduces the amount of hair growth on the treated areas. I never had my prescription filled because it's like 70 bucks a tube, but that's got to be cheaper than laser removal.
posted by crankylex at 9:03 AM on October 5, 2011 [7 favorites]

I also have problems with excess hair (though I do have elevated androgen/testosterone) and wish you the best of luck in figuring out the root cause of your issue.

I would advise against laser hair removal, simply because it doesn't actually permanently remove the hair. Instead, try doing a round of electrolysis; if you can stand the pain, it's a permanent solution. Laser will diminish, but not fully remove, hair. Because it's a slower treatment, you also can space out the paying a little more evenly—I pay about $60 an hour, ymmv.
posted by Hot Like Your 12V Wire at 9:03 AM on October 5, 2011

If it were me, I would get a second opinion on the PCOS, especially since you aren't ovulating.
posted by peep at 9:04 AM on October 5, 2011 [2 favorites]

The very first thing to do is double or triple check for PCOS, because it's very likely still possible. If your personal "normal" estrogen level is way high, then being "slightly below the normal" is a big aberration. (Different systems, but I know my cholesterol is naturally below the normal range, so I know that I need to be worried if I get up into the middle of the range.) Blood test alone is not sufficient to diagnose. Get an ultrasound.

This isn't something that might be "wrong," but have your doctors checked your genetic makeup? You might have some variety of XX plus a Y or minus and X combination that is not typical.

Some folks who study The Biology of Gender (that link actually goes to Anne Fausto-Sterling, possibly the most famous biologist in this bunch, here's her page at Brown) are fond of saying that there is more variety among men and among women than there is difference between men and women. Dimorphism is helpful for lots of "average" folks, but it's not so helpful if you're an outlier. In fact, as you're experiencing, it can be quite emotional and painful.

Remember also, that lots of men don't get beards or full beards of any sort until they reach their very late teens/early twenties. Some men never do. Some women do, without any apparent medical cause. So while this may seem sudden or late to you, for the development of this condition, it's not like there's a solid cut off for "you get a beard or you don't.

I totally understand that this is something you want to fix, and that the answer of "there are just some really healthy and normal hairy ladies out there" is also likely unsatisfying, but hopefully it gives you some more stuff to read up on, and some more questions to ask.
posted by bilabial at 9:06 AM on October 5, 2011

How normal was your thyroid and how many of the thyroid function tests did they do? A lot of places will just do a TSH, see that it's under X, and call it good. Unfortunately the upper limit is still set a bit high and people with hypothyroidism can still have a TSH under X.
posted by elsietheeel at 9:48 AM on October 5, 2011 [1 favorite]

Laser hair removal is supposedly not as effective if the hair growth is due to hormonal issues. It sounds like you've had several treatments. If the hair has grown back but there is a lot or even little less of it (and it might take 3+ treatments before you can really tell that there is less), then it might be worth it to try a few more treatments. On the other hand, if there hasn't been any noticeable lasting difference, then that plus the fact that you're not ovulating does seem to possibly indicate that there is some hormonal thing going on.

I agree with maybe trying electrolysis, which is supposed to work regardless of the cause, while you continue to try to figure out if there is something going on medically.
posted by under satellites at 10:17 AM on October 5, 2011

Are you on the Pill? I have the occasional Man Hair on my chin/under my chin thanks to a mild form of PCOS (I ovulate pretty normally, but my estrogen is a wee low) and the Pill totally stops it.

You should still get another opinion as to what is up -- maybe see an endocrinologist if you haven't? -- but if you're not on the Pill, it may help.
posted by Countess Sandwich at 10:20 AM on October 5, 2011 [1 favorite]

I second the comments about exploring the PCOS issue further. I have it, and it's been a long while since I've had the hormones checked, but I wasn't ovulating and had the hair growth and weight gain related to Insulin Resistance. I was referred to a Reproductive Endocrinologist (don't freak out like me if they send you to a fertility clinic...that's where they work even if you aren't trying to have kids!) who did a vaginal ultrasound to see how many cysts and what size they were. He explained to me that the cysts were created when my ovaries made an egg but never released it (ovulated) so it just stayed there as a cyst. Each one puts out a bit of testosterone which eventually screws up the rest of your hormones. So...you may not have enough to have high testosterone levels, but they may be there throwing everything else off.

You may also want to check to see if you have Insulin Resistance...it can be connected with PCOS and cause hormone issues and hair growth. That's my driving factor in mine...yay.

I don't want to overwhelm you with links, but if you are overweight at all, think about the Insulin Resistance or check out Metabolic Syndrome as a possible issue.

As far as dealing with it, I have 4 patches (2 chin, 2 upper lip) that I basically shave every morning. I know that's probably not the best way to deal with it, but it's easy and cheap. I have noticed that it is not as prominent now that I've lost some weight but I've still got more weight to lose.
posted by MultiFaceted at 10:47 AM on October 5, 2011

Oh yeah...forgot to add that I'm on the Pill to keep my ovaries from trying to ovulate and therefore making more cysts and making the whole situation worse. Over the past couple of years of being on the Pill we have noticed that the cysts have shrunk, which is helping my hormones creep closer to normal. So the Pill might help you out as well on that end.
posted by MultiFaceted at 10:49 AM on October 5, 2011

Nthing what everyone says about PCOS, and just chiming in to say that a useful blood test to ask for is Sex Hormone Binding Globulin (SHBG). A low SHBG level means that even with a normal testosterone reading, more of the testosterone is "roaming free," as it were, and wreaking havoc with your hair follicles, ovulation, etc.
posted by Gamel at 10:54 AM on October 5, 2011

Have you tried just... going on the pill? Maybe try starting on a slightly higher dose one, rather than the newer low-dose ones. Trying a generic pill for three months would be a cheap experiment to see if this is something that can help you. If your hair growth responds to the pill, it might also be evidence that you have PCOS and encourage your endocrinologist or gynecologist to do more testing.

Also, and forgive me for this, but do other people notice the hair as much as you do? Like, is your doctor in full agreement that this is abnormal? I ask because I have a friend who thinks she's waaay hairier than she actually is. She spends a lot of time on hair removal, but when she says "Ahh I'm so hairy, I need to shave!" and shows me her leg or whatever, my response is frequently "Uhh... sure, if it's bothering you" because the hair is just not that obvious to an outside observer. Women tend not to talk about hair removal, but I think a certain level of baseline hairiness is normal. Mustaches, nipple hairs, pubes well outside the pubic region, the whole deal. We're mammals, not monsters! You might be hairier than average, but you definitely aren't a monster.
posted by MadamM at 11:10 AM on October 5, 2011

Oh Sweetie - you are SO NOT a Monster. Please don't believe that . Please.

I can't tell you why your were "blessed" with the excessive hair but I can tell you what you can do to eliminate the problem. I was born male but transitioned to female in my 20's. As god's little joke I was a hairy little beast (think Robin Williams' younger days).

What works is electrolysis. Not laser. Electrolysis. Laser is not permanent for most people nor as effective. Electrolysis is rather painful, results will vary depending on the operator (be prepared to shop around) and is expensive. But trust me on this - it really really works and is permanent. Stop using the laser and pay wherever it takes to get the electro done. You can spend years fooling around trying to guess at what is causing the hair growth and maybe your diminish it or maybe you won't and you'll probably end up spending a chunk of time and money that you could have used for electro in any case. In my opinion worry less about the why's and attack the actual problem - permanently. They won't grow back after electro and if it works on someone like me you better believe that it will work on someone like you. I completely understand the self-esteem issues that this issue causes . You will feel so very much better about yourself after you get rid of the problem.

Here is the best and most factual website that I know of regarding hair removal.
posted by Poet_Lariat at 11:26 AM on October 5, 2011 [7 favorites]

P.S. I hear that you say you can not afford the hair removal sessions. Neither could I really. But my self image and self esteem could not afford otherwise so I worked a second job and charged up the cards and took years to pay them off. Just do it Sweetie. Find a way. Seriously you can not afford to do otherwise.
posted by Poet_Lariat at 11:28 AM on October 5, 2011 [1 favorite]

Also: for your removal needs, there ARE two at-home laser devices which were recently approved and apparently work fairly well

FYI - all, and I mean all, at home "laser", photo or electric hair removal devices are scams, do not work and are completely worthless. See the above website link I gave for much more information on such scams. Just because they have been approved by some agency as being "safe" doesn't mean that they actually work :) . They don't
posted by Poet_Lariat at 12:42 PM on October 5, 2011

Wow, you are so brave to be dealing with this so honestly, and to keep some sense of humor. Find a new doctor, get a referral to an endocrinologist. This is a health issue, and if your doctor won't take it seriously, find one who will. Talk to a laser or electrolysis clinic, explain your situation, and ask if they will give you a better price; it's amazing how many things are negotiable.

You aren't a monster; you have a medical problem that is obvious and embarrassing, and I'm so sorry you have to go through this.
posted by theora55 at 3:15 PM on October 5, 2011

Couldn't agree more about needing an excellent endo and a thorough thyroid check. Stop the Thyroid madness can help with a complete list of tests and reasonable reference ranges, and may be able to suggest a doc.

the paleo diet helps with PCOS, so might be worth a try. Also consider checking for gluten intolerance; which is also sometimes associated with PCOS. There's no harm in simply trying the diet unless you feel you should be checked for celiac. Here's a checklist:

posted by egk at 4:38 PM on October 5, 2011

Chipping in on the PCOS. When mine was diagnosed, my hormone levels were not that crazy. Hormones, actual polycystic ovaries, and amenorrhoea (ie, not ovulating and not having periods): it only takes two, not three! Get a second opinion!
posted by equivocator at 6:15 PM on October 5, 2011

nth'ing that it could definitely be PCOS.

Slightly off topic, but seriously, keep your head up. I have more fur than the average bear and have always been extremely self conscious. I recently started working with a woman who has hair on her neck and chin like you've described. As far as I can tell she doesn't make any effort to remove or hide it. And, seriously, men go crazy over her. I don't think it's related, but she owns it and no one seems to care about the dark hair on her neck and chin. It's awesome.
posted by telegraph at 8:57 PM on October 5, 2011

I'm going to second what Gamel said above. Get a second opinion. This may be genetic or it may be PCOS but you need to talk to someone who do another battery of tests. I've heard it is far more helpful to know what specifically you should be looking for on those tests when you go into the Doc to request them, so you might want to study up a bit on differences in what shows up on those tests.
posted by P.o.B. at 12:49 PM on October 6, 2011

You could try an epilator while you save up for electrolysis. They're pretty cheap (mine's a $50 Braun from Target.com) and at least make the plucking much faster. And it makes everything less prickly compared to shaving. Google for a recipe for homemade Tend Skin, too, if your skin gets irritated.
posted by artychoke at 9:23 PM on October 6, 2011

Nthing possibility of PCOS. The Rotterdam criteria for diagnosis allow you to have 2 out of the 3 and be diagnosed with PCOS:
1. Irregular periods
2. Androgen excess (clinical/lab)
3. Number of antral follicles (cysts) on ultrasound

So you could have only 1 and 3 and still have PCOS. And also, sometimes different labs use different cutoffs for high. did you get the other androgen levels check (DHEAS, androstenedione)? Did you get anti-Mullerian hormone checked? Even if the numbers are normal in some ranges they may actually be high enough to be diagnostic. Anyway hope you get it resolved! Best of luck! (p.s. IANYD/IANAEndocrinologist)
posted by treehorn+bunny at 12:02 AM on October 7, 2011

There are deals all. the. time. on groupon-style sites for laser hair removal: I know that stuff is costly, but that can take a major chunk out of the price too.
posted by R a c h e l at 6:35 PM on October 9, 2011

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