I am writing this with the hopes that it will help someone else identify what's going on with their body. For around 8 months now, I have had a rash on the outer part of my vulva and extending back to my buttocks at times that never seems to go away. It didn't seem to fit the symptoms of any other common condition and it stumped every OBGYN I visited. The only thing it did seem to cause was incredibly intense itching that was so bad at times that I longed to claw my skin off. Have you ever had poison ivy? Imagine an itch that bad, but on your genitals, and you'll have some idea of that this feels like. Thankfully the severe itchiness only flares up during the times when I'm sweaty due to stress, heat or exercise - but I digress.
I had just started becoming sexually active with my first partner after both of us had been tested for STIs and came up negative, when a couple of benign-looking bumps appeared on the outer part of my vulva, towards where the outer labia meet my pubic hair. I didn't think much of it but since I was overdue for a pap smear anyway, I decided to book an appointment with my OBGYN. The examination came up normal and the doctor wrote off my bumps as a heat rash and prescribed me a clobetasol, a class-1 (the most potent kinda available) topical steroid cream to use and said that I should "come back in two months if the rash was still there". Within a few days of using the clobetasol my vulva felt like it was burning and swelled up so much that it was difficult for me to walk, sit or even urinate at times. I was in agony and when I called the doctor back my concerns were dismissed. I was furious and that little incident put me off from seeing any more doctors about my problem for another three months.
After a week of stopping the use of the clobetasol, along with a steady dose of benadryl and epsom salt soaks, the swelling and burning finally abided - but the rash persisted and started to spread. A few months later I finally booked an appointment with another OBGYN, at my wit's end, and this time they were a lot more helpful. She took a biopsy of the rash and sent it off and also confirmed my suspicions that I had indeed experienced a severe allergic reaction to the clobetasol. This time she prescribed me a much milder cream in a different base that was much less likely to cause a reaction. The cream helped a little and although it still irritated my skin, I was able to tolerate using it most of the time. Unfortunately, the results of the biopsy came back and were basically inconclusive - all they could tell me was that I didn't have herpes (although based on my symptoms, the doctor said it was highly unlikely) and that I had "chronic swelling". After getting hit with a couple hundred dollar bill for that visit (since my insurance only covers ONE visit to a gynecologist per year, even if it is medically necessary…) I had no choice but to resign myself to living with this condition.
Finally, months later, I had quit my job in a commercial kitchen (where I was constantly so hot and sweaty that I had to change my underwear in the middle of my shift to avoid aggravating my rash) and moved into a building that had central air, and was working at a place where I never had to break a sweat. This helped my symptoms enormously, although they still hadn't completely gone away and I would still have extremely itchy flare-ups at times. I finally remembered something the doctor had told me when I first went in - that my rash looked like "clogged sweat glands". On a whim, I googled "chronic blocked sweat glands" and finally the name "Fox-Fordyce Disease" came up. I read the symptoms - extremely itchy rash that persists but does not pus or blister - aggravated by heat, sweat and stress - causes hair loss - and finally knew what was causing me all of this misery. I called around and found a dermtologist willing to see me and my diagnosis was finally confirmed. I had also unknowingly been suffering from this in my axillary area (armpits) as well, although it was so mild that I hadn't given it any thought. I felt relieved to finally have a diagnosis after so much searching, stress and misery.
What Fox Fordyce Disease/Syndrome IS:
- A rare condition, though maybe not as uncommon as is thought since if it is hard for most people to be diagnosed properly as it was for me, I am certain cases go under-reported.
- A chronic infection of the apocrine sweat glands that involves a persistent rash, extreme itchiness and hair loss that is aggravated by sweating and stress.
What Fox Fordyce Disease/Syndrome is NOT:
- It is NOT contagious and you cannot spread it to your partner.
- It is NOT an STI/STD. However, you should still practice safe sex and always use body-safe toys that can be sterilized after every use, body-safe lubricants and the necessary forms of protection.
- It is NOT heat rash (miliaria). If you are suffering from heat-rash like symptoms for months at a time and cold compresses or cooling the area provide no relief, and if you start to experience extreme itchiness and hair loss in the area of your genitals, armpits and/or areola you may have this condition.
- Most unfortunately, it is NOT curable.
The only known cures seem to be estrogen therapy (which I am currently not comfortable with due to the side effects) or a round of topical creams, which I am not too keen on trying again due to my past reaction to them.
I personally try and avoid becoming sweaty as much as possible, and if you are working in an environment that causes you discomfort from sweating so much that it aggravates your symptoms you may want to consider a different profession. I know that this helped me LOADS since I am a very sweaty person, but your mileage may vary. I also use a diva cup during my period (since the symptoms typically flare up during that time) and only use homemade menstrual pads made from soft, breathable cotton. When my symptoms are very severe I soak in a small plastic tub full of warm water, epsom salts, and sometimes a little bit of white vinegar. According to my doctor, this practice is not harmful, but you may want to consult with your own physician before trying anything like this out. I am also considering experimenting with tea tree oil since any creams or powders that I've tried (cortisone-10, gold bond, desitin, diaper rash curatives) have either made my symptoms worsen or have lost their effectiveness over time. I think I am going to ask santa for a bidet this year since I think it would really help me stay as clean and sweat-free as possible and would at least help with the symptoms.
On another note, just because you have Fox Fordyce Disease/Syndrome, it does NOT mean that you can no longer be sexually active. I personally avoid sex right before my period, when the itchiness is at its worst, but otherwise you can continue having sex as you wish. At times the swelling may tighten your vaginal opening so that penetrative sex will become uncomfortable, but this does not happen to me very often and it usually subsides after a day or two. Remember that it is important to listen to your body and that if you feel any discomfort or pain you should stop.
Fox Fordyce Disease/Syndrome is a rare condition and thus, it is very hard to find any information about it - especially from a gynecological perspective. The internet is a lousy doctor and for a long time I was convinced that i had herpes because everyone and everything I read or talked to thinks that a genital rash MUST be herpes. I am not in any way against STI awareness but I think a lot of doctors assume anything involving the genitals must be an STI, and I think that's pretty terrible of them. I had to endure a LOT of suffering because of these assumptions and frankly, I'm sick of them. Fox Fordyce Disease/Syndrome is indeed a SKIN CONDITION and thus, I would recommend that you see a dermatologist if you have already been to an OBGYN (or two) and have already been tested for STIs and ruled everything else out. You will probably have to call around because it took me a while to find a derm that didn't just redirect me to another OBGYN that would have had no idea what they were looking at.
So in summary, if you:
- Have ruled all other STIs and common skin conditions like yeast infections (which can also cause a rash)
- Are experiencing an extremely itchy "heat rash" that persists for months without going away and does not blister, scab or drain fluid or pus that is in the area of your apocrine sweat glands in the genital, areola and/or axillary (armpit) area(s)
- Are experiencing hair loss in these areas
- Are experiencing swelling or discomort from your other symptoms
- Have had a biopsy/pap smear with normal or inconclusive results
- Have symptoms like these that do not involve the inner part of your urogenital tract (vagina, UTIs, etc.)
- Have been to an OBGYN(s) who are still unable to help you
Then it may be worth a visit to your dermatologist to get yourself examined to find out if you are suffering from this condition.
I hope what I have written here will help anyone who is at their wit's end and is looking for answers, and who may have Fox Fordyce Disease/Syndrome. I apologize if my personal viewpoints or accounts offend anyone. Again, this article is not intended to diagnose, treat or cure any disease and I urge you to make an appointment with your doctor or local health clinic if you are experiencing any abnormal symptoms.
TAGS: Fox Fordyce Disease, Fox Fordyce Syndrome, Fox Fordyce Disease/Syndrome, skin, skin conditions, rare disease, rash, heat rash, miliaria, prickly heat, itchy rash, itching, not herpes, dermatological, sweat, sweat glands, blocked sweat glands