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hope95

Accutane, Cystic Acne, Hirsutism?

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Hi,

I have been dealing with really bad cystic acne since I was a young teenager (I'm 20 now). I get it mostly on my lower cheeks/chin/jawline, chest, back, scalp.

I have been on many different type of antibiotics, topical creams, etc. None seem to work. I went on ortho tri cyclen lo when I was about 16 and it did clear me up a bit (I don't really remember if it helped with my body acne) but I went off of it in 6 months because I didn't like the feeling of being on it.

Lately, My skin has been out of control, especially on my face. I tried going on the same birth control again but it broke me out so badly.... Worst breakout of my life so I immediately stopped because I just couldn't deal with how bad it was. I've also noticed that my body and facial hair has increased a lot. I have black hairs on my chin and cheeks, something I've never experienced before. I also have more hair on my arms, hands, fingers, stomach and chest. I was convinced I have pcos so I've got blood work done twice to check my hormones and they came back completely normal both times. I am at a normal weight, I have very regular periods, I eat pretty healthy and exercise regularly and have no family history of pcos.

The only symptoms I do seem to have are the excess hair and cystic acne.

My dermatologist keeps telling me I should go on accutane. At first I said no because I was scared of all the side effects but after a year later when I went back to him he told me I should go on it again and now I actually want to. I regret not going on it sooner because my acne is just getting worse. But lately I can't stop focusing on my excess hair and I'm worried it might be getting worse too. I've also read that accutane can cause hirsutism... Which makes me even more worried. Is this true? I really want my acne to get better but I just can't deal with more hair, I am already so depressed because of it.

I am trying to stay away from birth control/Spiro because I feel like those don't have a chance at curing my acne. They may make things better while I'm on it but I know I'm eventually going to want to get off it and my acne/hairyness will probably come back, which is something I'm not looking forward to. Plus I hear that Spiro can mess up your periods and I don't want that to happen especially since mine are very regular.

I feel like if I take accutane and it still doesn't help my acne in the long run at least I can say I've tried it instead of always wondering if my acne would have gotten better if I went on it.

What do you guys suggest I do??? Should I just go on accutane even though it may increase my excessive hair?

Please help!!!

Edited by hope95

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Thanks for posting your story, certainly a difficult one, and very frustrating for you.

Firstly, there is an obvious underlying imbalance of some kind here. The presence of severe and persistent cystic acne in combination with the hirsutism really does point the finger towards a hormonal pathway.

I would be really interested to see those hormone results - LH FSH Testosterone (or androgens) Oestrogen and progesterone levels - and what day or your cycle. It is interesting that your cycles are so regular and that you are normal weight but this does not exclude these problems. I wonder also if adrenals need checking.

I would not encourage you to expect worsening hirsutism with accutane.... probably wont help or hurt it.... but everyone is different in this regard. I would imagine accutane will help substantially with the acne but it is obviously not addressing the underlying issue.

I would have thought spiranolactone would have been a good option for you... even though I am against medications generally.

Do you suffer from any other medical issues? Is there a family history?

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Thanks for posting your story, certainly a difficult one, and very frustrating for you.

Firstly, there is an obvious underlying imbalance of some kind here. The presence of severe and persistent cystic acne in combination with the hirsutism really does point the finger towards a hormonal pathway.

I would be really interested to see those hormone results - LH FSH Testosterone (or androgens) Oestrogen and progesterone levels - and what day or your cycle. It is interesting that your cycles are so regular and that you are normal weight but this does not exclude these problems. I wonder also if adrenals need checking.

I would not encourage you to expect worsening hirsutism with accutane.... probably wont help or hurt it.... but everyone is different in this regard. I would imagine accutane will help substantially with the acne but it is obviously not addressing the underlying issue.

I would have thought spiranolactone would have been a good option for you... even though I am against medications generally.

Do you suffer from any other medical issues? Is there a family history?

Thank you for responding!!

Yes, it has been a very frustrating journey and I feel like there is no end! It seems like one problem after another.

I did think there was an underlying hormonal imbalance but I'm not sure what it could be... I got blood work done twice, first time by my primary doctor and then by an endocrinologist. Both have said that there is no problem with testosterone levels/insulin/anything regarding this issue. I don't have the actual results but they just told me that everything is normal. I asked my endocrinologist if its normal to have more hair develop at my age and he said its not normal but he just doesn't have an answer for me as to why it's happening :(. He said that the hair could be due to stress? I am in college and do get stressed easily but it's nothing crazy. Also, he said that the areas could have just become more sensitive to androgens which causes the hair to grow more. But I never had this problem until about six months ago so I don't know why that would suddenly be the case. I don't remember the day I took my first blood test but for my second one, I took it during my mid cycle, 14 days after my period.

I have read online that hair growth could be a side effect of accutane so I got very worried but this seems to be a rare case, so I might just try it out.

My endocrinologist told me that I could try spiro and I did think about it but I just hate the thought of having nice skin/no hair and then coming off of it and having it all come back again. Do you think its worth it? Because I obviously do not want to stay on it long term and it's not going to "cure" anything. But lately, I've just been so anti-social and depressed and I really don't want to spend my college years like this, so if spiro may help me for the time being then maybe I should just go on it....

I don't suffer from any other medical issues. I know that my aunt has hypothyroidism (but she never had problems with acne/facial hair) and my endocrinologist asked me a few questions regarding hypothyroidism and checked my neck and stuff but seemed to find no problems. I am generally a very healthy person. Everyone else from my family is pretty healthy too, I don't know of any other women who has similar hormonal issues. My dad had really bad acne in similar places as me when he was a teenager so I always thought that's why I have it too.

Edited by hope95

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Hey, hope95!

I am going through the exact same situation :)

I am starting my 4th month of accutane, and I suffer from excess facial hair as well. Both of them are due to PCOS :D

During my first appointment with my derm, I asked my her whether I should go on Spiro. She said that she could prescribe me that, but she would still recommend accutane, because acne caused by PCOS are very stubborn. Only accutane is strong enough to heal those hormonal acnes. It sounds like spiro isn't as powerful to heal existing cysts. She also said that I should go see a endocrinologist for treating my other PCOS symptoms like unwanted hair. I got prescribed spiro but I think I will start to take it after I finish my accutane course. About the irregular period problem you mentioned, my endocrinologist said that my period might be a little bit heavier but it wouldn't be much of a problem!

I am so glad to find someone who shares these experience, because no one in my life seem to have the same problem as I do! (even though 1 out 10 women has PCOS!)

and bad english, sorry :(

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Thanks for posting your story, certainly a difficult one, and very frustrating for you.

Firstly, there is an obvious underlying imbalance of some kind here. The presence of severe and persistent cystic acne in combination with the hirsutism really does point the finger towards a hormonal pathway.

I would be really interested to see those hormone results - LH FSH Testosterone (or androgens) Oestrogen and progesterone levels - and what day or your cycle. It is interesting that your cycles are so regular and that you are normal weight but this does not exclude these problems. I wonder also if adrenals need checking.

I would not encourage you to expect worsening hirsutism with accutane.... probably wont help or hurt it.... but everyone is different in this regard. I would imagine accutane will help substantially with the acne but it is obviously not addressing the underlying issue.

I would have thought spiranolactone would have been a good option for you... even though I am against medications generally.

Do you suffer from any other medical issues? Is there a family history?

Thank you for responding!!

Yes, it has been a very frustrating journey and I feel like there is no end! It seems like one problem after another.

I did think there was an underlying hormonal imbalance but I'm not sure what it could be... I got blood work done twice, first time by my primary doctor and then by an endocrinologist. Both have said that there is no problem with testosterone levels/insulin/anything regarding this issue. I don't have the actual results but they just told me that everything is normal. I asked my endocrinologist if its normal to have more hair develop at my age and he said its not normal but he just doesn't have an answer for me as to why it's happening :(. He said that the hair could be due to stress? I am in college and do get stressed easily but it's nothing crazy. Also, he said that the areas could have just become more sensitive to androgens which causes the hair to grow more. But I never had this problem until about six months ago so I don't know why that would suddenly be the case. I don't remember the day I took my first blood test but for my second one, I took it during my mid cycle, 14 days after my period.

I have read online that hair growth could be a side effect of accutane so I got very worried but this seems to be a rare case, so I might just try it out.

My endocrinologist told me that I could try spiro and I did think about it but I just hate the thought of having nice skin/no hair and then coming off of it and having it all come back again. Do you think its worth it? Because I obviously do not want to stay on it long term and it's not going to "cure" anything. But lately, I've just been so anti-social and depressed and I really don't want to spend my college years like this, so if spiro may help me for the time being then maybe I should just go on it....

I don't suffer from any other medical issues. I know that my aunt has hypothyroidism (but she never had problems with acne/facial hair) and my endocrinologist asked me a few questions regarding hypothyroidism and checked my neck and stuff but seemed to find no problems. I am generally a very healthy person. Everyone else from my family is pretty healthy too, I don't know of any other women who has similar hormonal issues. My dad had really bad acne in similar places as me when he was a teenager so I always thought that's why I have it too.

I would strongly encourage you NOT to accept a statement from a doctor that everything is ok becuase blood tests are ok, when there is obviously an issue at play here. Wether it is testosterone, other androgenic hormones, progesterone, cortisol or peripheral sensitization of androgen receptors (or even intracellular upregularation or hormonal pathways) none of these should be accepted as normal. (Sorry.. don't want you to feel abnormal I am sure you are a lovely and fantastic person... but I don't want you to accept a status quo that is pathological.

Get the results from the doctor and post them.

PS mid cycle blood results are useful in some setting but it depends what they tested!

Hey, hope95!

I am going through the exact same situation :)

I am starting my 4th month of accutane, and I suffer from excess facial hair as well. Both of them are due to PCOS :D

During my first appointment with my derm, I asked my her whether I should go on Spiro. She said that she could prescribe me that, but she would still recommend accutane, because acne caused by PCOS are very stubborn. Only accutane is strong enough to heal those hormonal acnes. It sounds like spiro isn't as powerful to heal existing cysts. She also said that I should go see a endocrinologist for treating my other PCOS symptoms like unwanted hair. I got prescribed spiro but I think I will start to take it after I finish my accutane course. About the irregular period problem you mentioned, my endocrinologist said that my period might be a little bit heavier but it wouldn't be much of a problem!

I am so glad to find someone who shares these experience, because no one in my life seem to have the same problem as I do! (even though 1 out 10 women has PCOS!)

and bad english, sorry :(

THis is a really common problem. PCOS is really an issue with insulin (it is sort of like metabolic syndrome in young fertile aged women). Accutane does not address the CAUSE of this problem at all.

Very low carbohydrate diet, possibly treatment with metformin (one of the safest medications around, and certainly the safest in this class as long as you dont have kidney disease), supplementation with CoQ10, Alpha Lipoic Acid, L-Carnetine are all helpful for the underlying issue I would also consider the high dose B5 in this case. Info available here www.clearskinalternatives.com

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Hello,

I started getting acne in 3rd grade. I got my period in 7th grade. Had 4 day long periods with regular flow. And I had hair on my stomach. More than I thought was normal, but my mother told me it was normal and everyone has it, and that it was also because I was Italian.

Well I did cheerleading for many years and have seen many girls bodies and none looked like mine. I knew it was not normal. But I blew it off and thought maybe I was just hairy cause of my genes.

As I got older my acne kept getting worse and my hair on my stomach did too.

When I got to college my acne spread to my neck, arms, back, and chest. And my hair growth increased and I stared get hair more in other places like my arms, chest, hands, pubic region, etc. Also, my periods became longer and heavier. So I stared doing some research and diagnosed myself with PCOS. I went to the obgyn at my college and told him I that I thought I had PCOS and I told him why and he laughed at me. I was so mad and embarrassed. I know my body better than anyone else and m knew it wasn't normal.

So I made an appointment with another obgyn and told him the same thing. He checked my ovaries and said I had no cysts. And said that my hair on my stalk her was probably normal for my ethnicity. But nonetheless he checked my hormones because I asked him to. Even though he said I didn't have PCOS. The results came back and I had high levels of testosterone and DHEAS. He then sent me to an endocrinologist.

This endocrinologist said that he seen higher levels in younger girls and that it isn't nothing to be worried about. Even though my DHEAS levels were more than 100 limits higher than what they should be! And he Said to come back in a few months to have my hormones checked again, after I was completely off of my vyvanse meds that I stopped taking cause it caused my hair to fall out.

Well I couldn't go back to see him after a few months because I didn't have health insurance anymore and I didn't have that kid of money.

Since this my acne has gotten worse and my hair and now I have cystic acne.

And then I got my health insurance back and cousins decide whether o should go to a dermatologist or my obgyn again for this.

I decided to go to my obgyn and he prescribed my Yasmin for my acne and hair growth. I decided to not even go get the prescription filled for this because I read that it was recalled and it could cause increased hair growth.

I then decided to go to a dermatology instead. I told her my situation and that she should look at my blood work. She said she would, but ever did. And she prescribed me spirnoaldactone for my acne. I took it for 3 months and my acne was worse while on it, but I know this is a side effect of when first taking it. But I had to stop using it anyways because my potassium was too high. So I stopped going to her because she wasn't helpful either. She honestly barely even looked at my acne, just prescribed me creams.

So then I went back to my obgyn for more blood results and he said that they came back normal.

I am now going to a different endocrinologist praying he can help me!:(

It's so difficult to fix your problems when no one really is trying to help you that much.

I am convinced that I have PCOS and hirsutism, even though I was never clinically diagnosed. Honestly I feel like there are many doctors who really don't care about patients or are just really stubborn and thinking they know everything.

If you have to, go to a million doctors ! One is bound to help you right.

Did you ever take accutane? Can you tell me your results with your acne and hirsutism please??

-Scotty

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i took a full cycle of accutane and it pretty much cured my cystic acne. while on it I did have the following side effects: dry skin, depression, body aches(mainly one of my hips). I hadn't gotten anymore acne for over a year after i was done. I did however start noticing what I figured out to the best of my knowledge from google was hirsutism. It started out with only hairs in places that my cystic acne had very bad popups, but now it's just getting worse and worse. From this board it sounds like alot are in the same boat.
Any results within the last year I should know about from everyone above?

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If I were you, I wouldn't do it. Acne is normal for a woman, facial hair NOT. My point is: I know there is not a 100% chance of getting facial hair, but I'm sure it will make you more depressed than acne.

Think twice before you regret something.
Have you tried minocycline and differin together? Worked wonders for me.

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