I just stumbled onto this website and, being an acne sufferer for many years with a misdiagnosis, I wanted to put my message up in the hopes this info might help someone that might have what I had: HIRSUTISM.
From an early age (12ish) I noticed that I had more hair on my arms and legs than my friends. By 14 I began to have moderate acne. It got progressively worse through the years. I began my period at 15 and they were usually painful. Sometimes I would even feel like I was going to pass out. My mother took me to a dermatologist after dermatologist about my acne. I would get the usual treatment of being given ointments, antibiotics, and the doctors would tell me not to pick or touch my face and back. Nothing helped. Throughout the years my complexion didn't help my self esteem at all.
Even though it seemed like a losing battle, I continued to buy water based foundations, used acne medications, and ate a well-balanced diet.
I moved to the big city of Houston when I was 21 and thought that those things called facials might somehow help. I made an appt. and had a nice facial. The lady that gave me my facial commented on how clean my skin was and I told her I usually gave myself at home facials several times a week. At the conclusion of my session she asked me to sit up so that she could massage my shoulders and back. I told her I didn't want her to do that because I was embarrassed about the acne on my back. She asked if she could look at it and I agreed. She asked to look at my toes and belly button. I reluctantly showed her. Not saying anything more to me, she said to get dressed and she'd meet me out front. I was out in the waiting area for a while before she came and had a chance to look at some of the products they had to sell. I had decided one or two might work well for me and had them in my hands ready to pay for. She came out and said "I'd love to sell you that but you don't need it." Although she was not a medical doctor, she said that she thought that the cause of my acne was medical, something called Hirsutism, which basically meant I had too many male hormones. I was embarrassed to listen to what she was telling me. I told her I had been to at least a dozen dermatologists over the last 8-9 years...why had no one mentioned this to me or bothered to test me. She did not know but she said that I needed to go to an Endocrinologist. I did. She was right.
Not only does Hirsutism affect your skin, but it can also prevent you from being able to conceive. I also lost 20 pounds and my friends said I looked like a new person. I was not moody anymore and laughed alot. I felt like a new person and had unbelievable energy. By day four I thought that my doctor must have prescribed some type of upper or narcotic and called my doctor. He said that it was not an upper but that my body was becoming accustomed to working and functioning like a normal person. That for the first time I was actually experiencing what it felt like to feel good. I believe that a normal woman's testosterone level is up to 200. (I'm not sure what the unit of measure is.) Mine was in the 800 range.
Within 2 weeks or so I had no more acne and within six months my blood tests were normal and he took me off all medication. I did not have not one single pimple for over a year. That was about 14 years ago.
I guess what I wanted to pass along to the ladies here if you have the symptoms of acne, hair on toes and around belly button, possibly bad cramps, and moodiness, you might have what I had. My doctor said he feels around 80% of the women that have Hirsutism never get treatment or know that they have it. The only thing I don't understand is why I was not diagnosed sooner.
[This message has been edited by Janet in Texas (edited 05-14-2003).]
[This message has been edited by Janet in Texas (edited 05-30-2003).]
i too deal with excessive hair and acne. i was put on spirnolactone 6 months ago and it has been a miracle. although it can take up to a year to help hair, my cystic acne is totally under control, with minor flairups during my period. what treatment are you on? i too was on every medicine since the age of 13 (except accutance) and nothing worked. it took me to the age of 32 to find something that works. please let me know what type of treatment you use. it's nice to know i'm not alone out there
The following user gives a hug of support to cherilyn: enuff4all (01-29-2011)
I was on deltasone. I think my treatment only lasted about 6 months and my testosterone and DHEA sulfate were back to normal. That is so nice to hear that you got the proper diagnosis.
Originally posted by cherilyn: i too deal with excessive hair and acne. i was put on spirnolactone 6 months ago and it has been a miracle. although it can take up to a year to help hair, my cystic acne is totally under control, with minor flairups during my period. what treatment are you on? i too was on every medicine since the age of 13 (except accutance) and nothing worked. it took me to the age of 32 to find something that works. please let me know what type of treatment you use. it's nice to know i'm not alone out there
What was your diagnosis? My doctor had told me that even though my hair would kinda slow up, it would never stop because once a hair folicle gets a taste of male hormone, it never stops growing (unless you have electrolosis or something).
Anyway, I just turned 36 and do have a little acne but it is what I would consider normal. Maybe a pimple once a week or something.
I've been on Obaji Nu Derm for about four years now. It is a facial care system that includes Retin-A. It does help the acne but I got on it to improve skin tone and erase those little wrinkles you start to see soon after you turn 30. I get a chemical peel called an Obaji blue peel every 14-20 months and it does wonders at improving pores and such.
I had replied to you on the other forum re: endocrinology & acne- i am making an appt with an endocrinolgist tomorrow! I have a weird background- never had acne growing up - just had 1 pimple after waxing my lip for the first time. Turns out after I turned 20, I was breaking out every day. I have had some excess hair most of my life, but so do my parents - so no big deal - till just recently - I've had hair just thicken & grow faster- I am now 30 and still have acne- it's really an emotional drain- not sure if that contributes to my mood swings - Chicken or egg?- What was hormonally wrong? Any particular education that the endocrinologist had or do all endocrinolists treat similarly? Any info you have would help me and others so tremendously- it was a little funny that I was responding to the other forum with only the original posting and when I hit submit, your response was there also. Not to say it's an omen, but thank you.
See my post on the other thread. I saw an endocrinologist over 20 years ago, who tested me extensively and determined my testosterone level was very abnormal. Since he didn't feel this was a "disease," he just sent me on my way with no treatment. Doesn't say much for the medical profession in my estimation when you have an abnormality that falls within their specialty, and then they just brush you off. He was looking for lupus, and since it was "just" excessive testosterone, he trivialized it.
i have acne , oily skin,
hairs on my belly, on my toes and on my fingers
i´ve always hated the hairs on my fingers.
I have the same skin as my mom does unfortunately
and she also has hairs on her chin.
I´m very sure my doctor won´t give me something
for it, he´ll just say that the diane 35 is good enough
but i suspect that there is something wrong with my hormonelevel as well.
i agree with pore they trivialize this.
Poreoilyme, are you a guy? If so, that's probably why you were blown off. Over and over I hear how men don't get treated for excess testosterone levels out of fear of chemical castration or feeling less masculine. Those men who decide to take Saw Palmetto (similar to spiro) have felt less "alive" and saw variable results in improving their skin. Then again, they tended to overdose on it, whereas us women can take 3-5x the amount and still not see a postive effect. Although, there are some women who see a postive effect while taking less than 200mg...
I will say that for any of you, I'm surprised you aren't taking an anti-androgen such as Spironolactone, or similar drug. Not only is it for cystic acne/oilies, but it helps with hirsuitism, and in the prevention of cystic ovaries (if that's a concern). That's what's rather odd, why they won't put men on this drug for acne, since it's used as a blood pressure medication to begin with??? The dosage that you would take wouldn't be that of the above, so "certain" side effects (I certainly never got them), may be less likely to occur, if at all.
I know that Diane 35 contains cyproterone (right?), but I'm aware of others that also take Spiro in addtion to this BC or others brands and have seen positive effects. While, taking Prednisone (deltasone) or Dexamethose glucocortocoids have helped to decrease hair loss and acne in women and men (LOCCAH dx), that would also explain the boosts inenergy. So it's very surprising Janet, that your doctor took you off of this drug. Then again, it takes a couple of tries before you hit the GOLD or PLATINUM of doctors. Heck, it took me 8 years of seeing doctors, specialists, before I found a good endocrinologist =)
Understandly you don't want to be on that drug for the next 30 years and while I've heard that the adrenal glands can rebalance itself, I'm surprised that it would happen in 6 months time. I'm even more suprised that he didn't give you anything for you excess hair. The drugs work, but usually ONLY while taking them and enough time off of them and your problems will come back. While Prednisone isn't prescribed to specifically to eliminate current body hair, the only thing that is supposed to do that would be Spiro or Flutamide etc. Of course there's other drugs and alternative treatments out there that have had varied success with acne/hair issues too.
So I guess the bottom line for those intersted, is that it just depends on your particular hormonal imbalance. The only way you'll ever know is to keep trying to see a specialist. The more time you have wasted by them, the more crazy your hormones will get, the more excess hair you'll get, etc. Yes, once you get it, it's not as easy to lose (you have to wait for the follicles to die, some do some don't). Depending on your age at the time of proper diagnosis & treatment (puberty vs. adult), somethings can be reversed and other things...can't
Say Janet, did you lose any body hair? How is your hair growth and acne now? How's your energy?
Poreoilyme, I'm sorry about that ;-) It's just that I know that men do get looked over. Hey it took me 8 years before I got dx as PCOS/IR so I understand how you feel. Except, why didn't you go to another endocrinologist? I hit the jackpot after my 3rd attempt 2 years ago. I'll say that it was only because I was complaining of depression due to the BC pills and excess acne breakouts thanks to Minocycline. It's unfortunate that sometimes we must get our "miracles" unintentionally.
Axcell, so glad you are here. We should definately spread the word. Alot of people and doctors think that PCOS has a set # of symptoms when it really doesn't, hence the word "syndrome". I for one, only have the excess testosterone, mild hirusitism, oily skin, acne, cystic acne, hair growth problems, and terrible menstrual cramps. Well actually, through various treatments, I've found that the Spiro and my diet (gluten free..Low carb) have GREATLY improved the lot of it. Yet, it took me soo many attempts and wasted years before I got a dx. Some of my symptoms could have been prevented and that's what kinda hurts the most. So most definately the SOONER one sees a specialist, the sooner they can be dx and treated and MAYBE they can stop some of those hormonal imbalance "symptoms" from occurring. =)
I just wanted to add something...I was on spiro for 5 years at 125mg and was perfectly clear. One day it stopped working (5 years ago) and all of a sudden I was breaking out, had an increase in facial hair (although it is so light, I'm not sure when I actually realized that I had anything more than I should), and I became moody and irritable. THEN, I had a hysterectomy. ... Well, this "took" the little bit of estrogen I had to counter act the male hormones....all of a sudden, the acne got worse and so did the moodiness, plus then I was going through menopause, so I was dealing with hot flashes, etc. I tried HRT but the estrogen was so minimal, that it did nothing for me. I've spent 5 years and tons of money and Now I'm on yasmin birth control..and Ladies, The menopausal symptoms are gone and it has helped my skin. I'm not 100% clear, but after 4 months on this pill, I feel ssssssooooo different than I did for the past 5 years. With the menopausal hot flashes and night sweats gone and my skin under "some" control at least, I feel more like a women than I have in 5 years. For me menopuase has been a nightmare!! I never knew going into that surgery how much worse Off I would be. I remember the dr. saying I would feel like a new woman........Well, I guess I did, but I didn't like her very much ! LOL
I only mentioned this because I always thought after the periods and the menopause, we are on the other side of all of this........Boy was I wrong. !!! Hirsutism is hard to get diagnoses, and so is pcos, but after menopause if you complain, they tell you you're crazy and get over it. Do the research on your own and go to the dr armed with information. Otherwise, a lot of times we are just "brushed off"
I think you had better go to another doctor. I, too, had an experience with a doctor ( a dermatologist) that noticed the signs but did nothing and said nothing. I had gone to this dermatologist many times before the facial lady's advice to go to an endo. Over the next year or two this dermatologist and I became personal friends (we ran with the same crowd). I had no reason to go to see him since I got treatment for Hirsutism, so he only saw me in social gatherings after that. One time he finally said how amazing I looked. I told him my transformation was due to being treated for Hirsutism. He said that it was more than the skin, it was everything about me had changed...wait lose, new hair do, smile on my face.
I really tore into that dermatologist! I asked him if he'd ever thought I might have Hirsutism. I was shocked that he replied "YES...." I asked him why he didn't say anything?! He said because some of those treatments can cause cancer. I replied that I was well aware of that but that those cancers are only in rare cases and alot of the times it is due to excessive use of drug. I told him that Hirsutism has many other side effects than acne, which I guess he thought was a vanity issue or something (crazy coming from a dermatologist). It can also cause infertility (that was not the case with me), extremely painful periods, excessive hair growth, mood swings, sluggishness all the time, and just plain old not feeling good. All of these things together can take one heck of a toll on your personality, self esteem, and life in general.
Do you remember what your testosterone count was? Mine was around 800 (which is extremely high). I think anything above 200s is considered abnormal.
Please get your tests done again by another doctor.
yes, I think you are very right about how important it is to get a good doctor (and one that knows what the heck to look for) and I did hit a goldmine when I found Dr. Petak. When I was first tested my testosterone level was over 800. I cannot remember what my DHEA Sulfate was. But in around 6 months my count was down to around 100. He said that some people are treated and released from the program while others have to be on it for life. I was lucky. There was no reason to keep me on the deltasone since I was in normal range and I looked and felt absolutely awesome!
As far as hair growth, the drugs can slow the growth but never alleviate it all together. Dr. Petak told me that once a hair folicle gets a taste of male hormone, the hair is there to stay. However, it can be treated successfully with electrolosis and the lasers. I have elected not to do either of those. I just have to shave my legs everyday and I get my arms and hands waxed. ...and just pluck the ones on my chin. I tan also and so people cannot see it when my stubble starts coming back between arm waxes
Yes, I am taking yasmin 21 day cycle for HRT. And I do agree about stress and trauma worsening male hormones and increasing the problems associated with them. After my hysterectomy....which in itself was a big shock to my body...things just went downhill. I was having odd symptoms and generally not feeling well most of the time. My skin was a mess and nothing helped, which depressed me even more......Then My grandma suddenly passed away and through that stress, my symptoms got worse and I began going to dr. after dr. only to have most of them tell me I was fine. I had full body rashes, I became sun sensitive, I was achy all of the time, I started to have chest pains and developed mitral valve prolapse etc....To make a long story short, After about 5 or 6 months of being told there was nothing wrong with me, I was finally diagnosed with lupus. My hormones were all out of whack and I've been trying ever since to get everything under control. Although it was nice to be "right" about actually being sick, I was in for a LONG road. Now since taking the yasmin 4 months ago, it has helped not only with my menopausal symptoms , but also with some lupus symptoms. I think it is helping my body regulate itself again. The extra estrogen has helped me immensely and I am terrified I will develop a problem and have to stop taking it. I do believe that stress and underlying illness can effect every aspect of the body and mind. I know my case is different than some of the original topic in this post, but I wanted to make the point that it took a long time and MY OWN research to get me to where I am today. Sometimes we find out more by sharing on these boards than going to the dr. I hope you get to the bottom of your problem and find a better solution. I will no say that yasmin is my MIRACLE at this point, but I will say that it has helped make some things "right" that have been "wrong" in my body for 5 years. Best to all of you.....I like that we can support each other. 5 years ago I didn't have a computer or the support that I have now through these boards.
PS after my hysterectomy, my testosterone level was rising and I had no estrogen......But the dr didn't think that was a problem !!
[This message has been edited by laur (edited 05-15-2003).]