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A Skinny Woman with PCOS and Acne

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#1 bluekit

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Posted 14 August 2010 - 12:42 PM

I have scoured the message boards on acne.org trying to find situations that are similar to mine with the hope of providing me answers about my "hormonal adult acne." I know that we all take comfort in relating to people with similar experiences, which is why I wrote this incredibly lengthy post--perhaps it will help somebody out there.
I'm almost 32 and I've had acne off and on since puberty, ranging from mild-cystic, but predominantly cystic. I've ALWAYS had to use medication or herbs to keep my skin clear and I've been on every prescription medication out there. I did 3 courses of Accutane in my late teens and early 20's, and it wasn't until I switched from Ortho Tri Cyclen to Yasmin during my last Accutane course, when I was 21, that I noticed a huge difference in my skin staying clear for a prolonged period of time. Eventually minor tiny papules around my nose came creeping back so I started using Tazorac and Clindamycin gel, which gave me perfectly clear skin. When I moved to California from NYC two years ago I switched from Yasmin to Ocella (the generic), and my acne started coming back. It wasn't severe, but was still very bothersome. I just figured it was my body adjusting to the climate in CA, but now I realize that it was due to switching from brand to generic Yasmin. I ended up stopping the Taz and Clindamycin and used Chinese herbs instead, which gave me pretty good results. In January of 2010 I went off of Yasmin to give my body a break as I had been on BCP's for 16 years. This was a terrible idea because I soon started breaking out in places I never had before including my back and jawline. I cleared up my back through cupping (Chinese Medicine), but my face progressively got worse and exploded all over with cystic/nodular acne about 6 months after stopping the BCP. I spiraled into a deep depression because I couldn't believe I was dealing with cysts and nodules yet again at the age of 32. I had my hormones checked by my PCP and the only thing that came back abnormal was that my testosterone was slightly elevated. She said this shouldn't be affecting my skin because, in her opinion, it was such a minimal elevation. I went to numerous dermatologists trying to figure out what was going on with my skin and nobody would take the time to listen to me. Many people were saying "it's hormonal", and my response was OF COURSE it's hormonal, but what is the root cause of my hormones being whacked out? I had a gut feeing it was something more than simply stopping the BCP. I wasn't happy with the lack of answers and concern I was getting from any of the doctors and the acne started taking me back to an emotionally vulnerable and helpless place like the cyst-ridden teenager I once was. My intuition told me to keep searching until I found answers. Last week I went back to my PCP and asked, "Do you think there's any chance I have PCOS?" She said no. I decided to seek out an excellent OB/GYN, and going to her was one of the best decisions I have ever made in my life--in fact it was life changing. She immediately diagnosed me with PCOS based on my irregular, 38-day, menstrual cycle ( FYI--I get my period on the same day every cycle, so it didn't necessarily seem irregular to me, just lengthy), acne, and elevated testosterone. We confirmed the diagnosis with an ultrasound, which revealed numerous immature follicles on my ovaries. She also performed another hormone test that was more comprehensive than the one my PCP gave me.
One of the things I want to point out here is that I don't fit the classic stereotype of the PCOS woman. I am very thin (5'6"/110 lbs) and always have been. I don't have any out-of-control facial or body hair (just a few minor black hairs on my chin), and I don't have thinning hair on my head. What I do have is persistent acne and slightly elevated testosterone. My OB/GYN said there are many misconceptions about PCOS, the primary one being that if you don't fit the classic PCOS stereotype then you don't have PCOS. She said she has many patients with PCOS who are thin and have irregular periods and that is their ONLY symptom. Thus, many people with PCOS who are thin live their lives not knowing they have it until they try to conceive.
So, FINALLY, after 18 years of wondering why I have had such persistent acne I have an answer. I was overwhelmed by a variety of emotions ranging from joy in knowing what the cause of my acne is to anger that so many doctors would not listen to me and take my concerns seriously, as I was generically classified as just another woman with "hormonal acne" after stopping the BCP.
I feel so liberated and powerful knowing the root cause, and instead of hiding from my acne I am OWNING my acne. As soon as I got my diagnosis a couple days ago, I immediately went from being totally devastated and desperate by my acne situation to finding peace of mind from being informed about my condition. Yes, acne completely sucks, but I have found so much relief this past week and am looking at my acne from a completely different perspective now that it is no longer a great mystery as to why I frustratingly have dealt with it since puberty. I now know I have a disorder that causes my acne and there is nothing that *I* am doing that causes it. These are simply the cards I have been dealt in life. What I CAN do is take the appropriate steps to manage my PCOS and try to regain balance in my hormones. My OB/GYN put me in contact with a great dermatologist who thoroughly listened to my history and came up with a plan of action to try and get my acne back under control. I am hopeful that my skin will become acne free once again.

Edited by bluekit, 14 August 2010 - 03:41 PM.


#2 })({amber

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Posted 14 August 2010 - 11:16 PM

I think I have PCOS, I am thin but I do have the acne problem irregular periods...sometimes they were consistently irregular other times they weren't (before birth control) and I do get a few little black hairs on my chin that bother me just because they are dark and I'm so white they stand out a lot even if its just one hair -_-

Hopefully I can find a doctor who will take me seriously when I say I believe I have PCOS and actually do SOME type of test for me....

#3 Aghaigh Dearg

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Posted 15 August 2010 - 05:58 AM

Thats great that you got a diagnosis bluekit. Thanks for sharing your story, it always good to hear of stories like this. I too am a skinny minny with PCOS and had to go through a bit before a gynie would call it as it is.
It seems too many docs think you have fit all the symptoms before when realistically even two should be worthy of investigation.

#4 bluekit

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Posted 16 August 2010 - 12:28 PM

Amber, I suggest you go to an OB/GYN and tell them that you want a comprehensive hormone test performed. My PCP never even recommended that I get one--instead I basically demanded one from her. Also, like I said, my PCP was actually useless in diagnosing me. It was the OB/GYN who was the life saver.

If anybody lives in LA and wants the name of my gyno or dermatologist in Beverly Hills, then PM me and I will gladly give you their names.

Aghaigh, would you mind sharing a little more about your experience with PCOS and how you're dealing with it, particularly the acne? Thanks!

Edited by bluekit, 16 August 2010 - 12:35 PM.


#5 })({amber

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Posted 16 August 2010 - 03:57 PM

QUOTE (bluekit @ Aug 16 2010, 01:28 PM) <{POST_SNAPBACK}>
Amber, I suggest you go to an OB/GYN and tell them that you want a comprehensive hormone test performed. My PCP never even recommended that I get one--instead I basically demanded one from her. Also, like I said, my PCP was actually useless in diagnosing me. It was the OB/GYN who was the life saver.

If anybody lives in LA and wants the name of my gyno or dermatologist in Beverly Hills, then PM me and I will gladly give you their names.

Aghaigh, would you mind sharing a little more about your experience with PCOS and how you're dealing with it, particularly the acne? Thanks!


Once I get some type of insurance I'll do that, but for now I can't afford to see one or have any test performed because of the price =[ but I'm working on getting insurance now so hopefully its soon

#6 Aghaigh Dearg

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Posted 23 August 2010 - 05:08 PM

QUOTE (bluekit @ Aug 16 2010, 07:28 PM) <{POST_SNAPBACK}>
Aghaigh, would you mind sharing a little more about your experience with PCOS and how you're dealing with it, particularly the acne? Thanks!


Not at all. I went the gynie for an unrelated matter and during the discussion mentioned irregular periods. She could see I had acne and that other PCOS joy, hirsutism. said its probably PCOS, still waiting on blood tests and ultrasound though (thank you GP!)

My acne was most definitely hormonal as it got really really bad whenever my period decided to turn up. Could cope with it in between but its moved from being little whiteheads to nastier more painful stuff in last year or so. That was getting me down a little. Especially when Neutrogena discontinued my facewash! I've always found SA to be a better fit than BP for my acne.

Started dianette a few weeks ago, nothing major to report on yet. Other than really sore boobs! Like you said looking forward to rebalancing the hormones and take it one step at a time from there. I eat healthy enough, Im relatively fit and active and not looking to concieve children just yet so if the acne and hirsutism could clear up Id be laughing!

It was nice to realise why Id always felt off kilter though. Id never knew much about PCOS before this and it explained a lot for me.

#7 kontra

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Posted 28 August 2010 - 03:56 PM

Thanks for your post! I recently turned 30 and realized that I had been dealing with hormonal acne for more than half my life, I finally decided to take a stand, see a new dermatologist and beg for something other than another cream / gel or antibiotic.

My dermatologist was really amazing, she immediately asked me if I had ever been tested for PCOS due to the hormonal breakouts and mild weird hair growth. After doing some research of my own, I went into my gyno's office armed with knowledge. She immediately gave me a diagnosis of PCOS. I did do a complete blood workup but since I have been on BC for so long, my hormone levels wouldn't be out of whack, they are already being controlled. She told me that the treatment for PCOS symptoms is to go on birth control. Since I was already doing this, following a healthy diet, and exercising regularly there wasnt a lot she could offer to me. We noticed in my workup that my blood pressure levels were high and she said that could also be caused by PCOS. She recommended a visit to my PCP to follow up on the high blood pressure.

By this point I just felt like a ping pong ball, eusa_shifty.gif everyone is telling me the same thing, that I have PCOS, but not giving me any real answers. My next visit to my PCP was ok. She recommended that I take a blood pressure medication which I did not want to do but I had already talked to my dermatologist about possibly trying a medication called Spironolactone for my Acne. Its actually a blood pressure medication but is supposed to work wonders on hormonal acne. I brought it up to my PCP and asked if maybe it would kill 2 birds with one stone?

She wrote out the prescription and now its just hurry up and wait. I am so hoping that this helps. Ive read both good and bad reviews for it and so I guess its just up to my body. In the meantime, Im also maintaining my 1250 calorie diet and exercising regularly. I went off using Pro-Active for about a year (what a joke) and now I use Cetaphil cleanser morning and night, my derm. also prescribed Aczone gel for day and Differin lotion for night. I use Purpose Moisturizer at night as well.

My fingers are crossed.

#8 *ShiningStar*

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Posted 30 August 2010 - 09:44 PM

You know, it seems like common sense, but I never thought to ask my gyn for a derm recommendation. It would encourage a collective and collaborative approach, which is missing from my treatment of care at the moment.

#9 Jerichoa

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Posted 05 September 2010 - 11:35 AM

I'm 18, and I believe that I have PCOS. I have a field of fine hair on my face, as well as some dark, curly hair that likes to grow along my jawline and under my chin (I pluck and shave it). I just finished a course of Accutane two months ago, and about a week before my period started this month, my face started breaking out. It's not terrible. They're uninflammed and small. However, I obviously DON'T appreciate it.

I went back to my dermatologist and she wrote me a prescription for Epiduo and told me that I might want to consider birth control if that doesn't work. Well, I'm not giving the Epiduo any time. I've got an appointment on Thursday to get birth control. I'm considering Yaz since it's like Spiro and BC combined.

I can relate so much to your story. I'm 18, and until my Accutane treatment I had severe, cystic acne. I definitely have some hormonal issues, and I don't know why I never thought of it before. The question has been raised of whether or not I have PCOS as well. Your post has been very insightful, bluekit, and I can't wait to follow your progress.

#10 DarkJewel

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Posted 12 September 2010 - 05:29 AM

I can really relate to this post,except that I'am rather hairy (constantly waxing and shaving!)
but have always been thin and had acne since about age 25 (now 33).

I've been going to a dermatologist for 7 years! If it wasn't the acne bothering me,it was the oily skin!!
Some doctors are so "by the book",but the truth is,even if if testosterone levels ARENT elevated,it doesn't mean lab results "within range" are the right number for everyone.Some people are sensitive to even small amounts of testosterone.
I found a wonderful GP who allowed me to try Spironolactone just because my symptoms are PCOS,even though I have not had a sonogram.Spironolactone is often used as a treatment for women with PCOS.

What treatments do you think your doctor will put you on?

#11 bluekit

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Posted 12 September 2010 - 06:22 PM

Here’s a little update. I’ve been on Spiro for 55 days and I’m on the first week of my second pack of Yasmin. I started off on 100 mg of Spiro, but my body couldn’t tolerate that amount so I dropped down to 75 mg three weeks in. (When I started the Yasmin I dropped to 50 mg of Spiro since the BCP contains 25 mg of drospirenone.) About 4 weeks into taking the Spiro I started noticing significant improvement in that my giant cysts and nodules started resolving, however, I’ve continued to break out consistently with smaller acne as well a few smaller nodules every now and then that resolve relatively quickly compared to before I started the Spiro. I’m still oily, but not quite as oily as before. This past week, though, I noticed a surge in oil and got a few new nodules around my eyebrows and the bridge of my nose and one deep inside my ear. I actually feel as if I'm experiencing a plateau in improvement right now.

I’ve also had two TCA peels from a dermatologist (that I no longer go to) since starting the Spiro and started getting a lot of comedonal acne afterwards. My facialist said that TCA peels can trigger comedonal acne, so I won’t be doing that anymore.

Two weeks ago I decided to incorporate weekly facials into my routine to try to help heal the numerous red marks I have as well as the comedonal acne. The facials are alternating between a light facial w/ extractions one week and a facial with microdermabrasion, extractions, and pumpkin peel the next. I’ve started using a Jan Marini skincare regimen too.

Also, interestingly, three weeks into taking the Spiro I had my hormones tested again and the results indicated my testosterone was really low (compared to slightly high before I started the Spiro). At this point I was not back on BCP, so the only thing that could have affected the testosterone level was the Spiro. I did some research and found a couple of scientific articles stating that Spiro not only blocks androgen receptors but it also decreases the production of testosterone too, which explains why my testosterone level was so low after being on the Spiro for three weeks. (The decrease in testosterone production also explains why some women lose their sex drive when they’re on Spiro). So anyway, now I’m wondering why I’m still continuing to break out if my testosterone levels are so low.

What’s the bottom line? Yes, I’ve noticed a major improvement with my acne compared to where I was before I started the Spiro, but it is not improving in a linear fashion. It’s more like two steps forward and one step back. I have no idea if Spiro is going to be the ultimate answer for me. I’m giving it more time to do its thing, and if it doesn’t give me the results I want then I’m going to try another round of Accutane. One thing I do know for sure is that patience is key when dealing with acne, as frustrating as it may be. I also know this: If you obsess about how shitty your skin looks it is incredibly unhealthy and completely disrupts the delicate balance of your life. Acne sucks because we all want to look like the ideal image we have of ourselves. The thing about acne is that it forces you to find solace in the great wisdom of the soul that knows that your life is much deeper than your appearance.



#12 DarkJewel

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Posted 13 September 2010 - 06:19 AM

Bluekit,thanks for sharing your progress.Mine has been somewhat similar.I have heard it can take like 4 months for some to see results and in other people even longer.

What's weird with me was that when I started on just 25mg of Spiro,my oil dried right away.It seems like after about a month and a half though it came back.
Every time I change my dose in the slightest way I get a break out.I guess it takes time to regulate hormones...

Question,how did you know your body didn't tolerate 100mg of the Spiro? Like,what were the signs?
I've had terrible insomnia since I went up to 100mgs.


The whole hormone thing with acne is so confusing,because if you look up ESTROGEN on the internet,it says too much of that cause acne too.I think it's called Estrogen dominance or something.
It's so frustrating being on the acne roller coaster!

I've been using 10% Bp wash twice a day and Differin XP too to try to combat it.

#13 bluekit

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Posted 13 September 2010 - 08:21 PM

I knew 100 mg was too much for me because it lowered my blood pressure to the point where I was feeling dizzy and fatigued even though I drink at least 2 L of water a day.



#14 happyagain

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Posted 15 September 2010 - 08:29 AM

I am 39 skinny no weird hair growth but irregular periods tons of acne cysts and getting around 10 -15 injections in my cysts every month.
Been on Spirolactone for 5 mos and have gone from 25mg to now at 75mg twice a day and I am cleared up!!!
It took forever but just kept increasing dose each month and doing lab work. My Dr wanted me to just go on accutane but I insisted that I give this time first because I heard hormonal acne doesnt respond well to Accutane and my free testosterone was elevated. He is shocked that this worked because he said usually it works right away and if it doesnt they stop. However, I think you need a strong dose to see a difference because It took 4 months for me.
Spirolactone makes you tired and dehydrated so drink up.. it gets better I do nothing else just a little proactiv wash and good oilfree moisturizer and thats it!


#15 jessi T

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Posted 06 June 2011 - 04:13 PM

QUOTE (bluekit @ Aug 14 2010, 01:42 PM) <{POST_SNAPBACK}>
I have scoured the message boards on acne.org trying to find situations that are similar to mine with the hope of providing me answers about my "hormonal adult acne." I know that we all take comfort in relating to people with similar experiences, which is why I wrote this incredibly lengthy post--perhaps it will help somebody out there.
I'm almost 32 and I've had acne off and on since puberty, ranging from mild-cystic, but predominantly cystic. I've ALWAYS had to use medication or herbs to keep my skin clear and I've been on every prescription medication out there. I did 3 courses of Accutane in my late teens and early 20's, and it wasn't until I switched from Ortho Tri Cyclen to Yasmin during my last Accutane course, when I was 21, that I noticed a huge difference in my skin staying clear for a prolonged period of time. Eventually minor tiny papules around my nose came creeping back so I started using Tazorac and Clindamycin gel, which gave me perfectly clear skin. When I moved to California from NYC two years ago I switched from Yasmin to Ocella (the generic), and my acne started coming back. It wasn't severe, but was still very bothersome. I just figured it was my body adjusting to the climate in CA, but now I realize that it was due to switching from brand to generic Yasmin. I ended up stopping the Taz and Clindamycin and used Chinese herbs instead, which gave me pretty good results. In January of 2010 I went off of Yasmin to give my body a break as I had been on BCP's for 16 years. This was a terrible idea because I soon started breaking out in places I never had before including my back and jawline. I cleared up my back through cupping (Chinese Medicine), but my face progressively got worse and exploded all over with cystic/nodular acne about 6 months after stopping the BCP. I spiraled into a deep depression because I couldn't believe I was dealing with cysts and nodules yet again at the age of 32. I had my hormones checked by my PCP and the only thing that came back abnormal was that my testosterone was slightly elevated. She said this shouldn't be affecting my skin because, in her opinion, it was such a minimal elevation. I went to numerous dermatologists trying to figure out what was going on with my skin and nobody would take the time to listen to me. Many people were saying "it's hormonal", and my response was OF COURSE it's hormonal, but what is the root cause of my hormones being whacked out? I had a gut feeing it was something more than simply stopping the BCP. I wasn't happy with the lack of answers and concern I was getting from any of the doctors and the acne started taking me back to an emotionally vulnerable and helpless place like the cyst-ridden teenager I once was. My intuition told me to keep searching until I found answers. Last week I went back to my PCP and asked, "Do you think there's any chance I have PCOS?" She said no. I decided to seek out an excellent OB/GYN, and going to her was one of the best decisions I have ever made in my life--in fact it was life changing. She immediately diagnosed me with PCOS based on my irregular, 38-day, menstrual cycle ( FYI--I get my period on the same day every cycle, so it didn't necessarily seem irregular to me, just lengthy), acne, and elevated testosterone. We confirmed the diagnosis with an ultrasound, which revealed numerous immature follicles on my ovaries. She also performed another hormone test that was more comprehensive than the one my PCP gave me.
One of the things I want to point out here is that I don't fit the classic stereotype of the PCOS woman. I am very thin (5'6"/110 lbs) and always have been. I don't have any out-of-control facial or body hair (just a few minor black hairs on my chin), and I don't have thinning hair on my head. What I do have is persistent acne and slightly elevated testosterone. My OB/GYN said there are many misconceptions about PCOS, the primary one being that if you don't fit the classic PCOS stereotype then you don't have PCOS. She said she has many patients with PCOS who are thin and have irregular periods and that is their ONLY symptom. Thus, many people with PCOS who are thin live their lives not knowing they have it until they try to conceive.
So, FINALLY, after 18 years of wondering why I have had such persistent acne I have an answer. I was overwhelmed by a variety of emotions ranging from joy in knowing what the cause of my acne is to anger that so many doctors would not listen to me and take my concerns seriously, as I was generically classified as just another woman with "hormonal acne" after stopping the BCP.
I feel so liberated and powerful knowing the root cause, and instead of hiding from my acne I am OWNING my acne. As soon as I got my diagnosis a couple days ago, I immediately went from being totally devastated and desperate by my acne situation to finding peace of mind from being informed about my condition. Yes, acne completely sucks, but I have found so much relief this past week and am looking at my acne from a completely different perspective now that it is no longer a great mystery as to why I frustratingly have dealt with it since puberty. I now know I have a disorder that causes my acne and there is nothing that *I* am doing that causes it. These are simply the cards I have been dealt in life. What I CAN do is take the appropriate steps to manage my PCOS and try to regain balance in my hormones. My OB/GYN put me in contact with a great dermatologist who thoroughly listened to my history and came up with a plan of action to try and get my acne back under control. I am hopeful that my skin will become acne free once again.



Your story is JUST like mine! (except add in infertility to the list of frustrations) I just found out I have PCOS today. It has been so hard...but at least I know there is a reason for the acne. Thanks for sharing.

#16 frustrated27

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Posted 28 December 2012 - 05:42 PM

Dear bluekit,

I also have PCOS and wanted to know what skin care routine you follow to control your acne.

Thanks!

#17 Green Gables

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Posted 04 January 2013 - 06:02 PM

Your body takes time to adjust to spiro.

For acne: 4 months on 100mg before I saw ANY improvement. I may have had a bad IB, but it was hard to tell because my skin was already so bad that it really couldn't get worse.

For other symptoms: I had a general feeling of malaise (unwellness) after my skin started clearing up. I thought maybe my dose was too high. I felt like I was retaining water. I took it down to 75mg, and my acne came back. Not acceptable, so I went back up to 100mg but made sure to really stay hydrated and watch my potassium intake. Second time around I felt great. Since I eat a lot of fresh fruit and veggies, I think my potassium intake may have just been too high.

I never had my hormones tested while on spiro, so I can't offer any advice on that. I go purely by symptoms and how I feel.

#18 AuguriesofInnocence

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Posted 03 May 2013 - 09:19 AM

hi,

Well here I am, I am a thin woman who has PCOS and was also blown off by doctors because I do not fit the "stereotype"...which is being overweight and insulin resistant. PCOS is a misnomer becaus most of us dont have cystic ovaries. Its also called Stein-Levanthal syndrome.

 

Ive never had normal periods, Id get a "regular" period than two weeks later, spotting. My acne has always been mild until last year, in 2012 it got cystic and my skin seemd ridiculously oily. I also noticed some hair growth on my face where it doesnt belong I am blonde so I shouldnt have dark hairs on  my face. I was immediately diagnosed as PCOS by a different gyno, who did all the tests same here normal everything but I dont ovulate and my androgens go up and down.(I believe its not necessarily high androgens which cause acne but that some individuals are more sensitive to it than others--like insulin resistance if you wil. Anyway this gyno put me on Ortho-Cyclen and spiro which was a mess--it didnt help my skin at all and the spiro made me extremely weak and Ihad very low blood pressure. I want to an endocrinologist who had me try yaz--within 4 months I had totally clear skin. Proves hormones=acne.

I started taking anti-DHT herbs, the one I take is called Hairomega 3-in-1, its formulated for hair loss but it helps with other symptoms of androgens like acne and hirsutism. basically saw palmetto, green tea and viamins. I also take spearmint every day same effect.

 

I wish I had an answer for you, but me I plan to take birth conrtol as long as I can . I know its a quick fix but life is too hsort to suffer trhough acne and I dont care if I have to take hormones, compared to accutane its practically candy. Im not telling you what to do, if you want to take bc again do it if not, try some herbals.  I do electrolysis for the hairs on my face its totally worthit to be rid of them.

 

I am so much happier on yaz not just with the no acne but with the normal periods and just feeling like myself. If I develop some odd complication or bloodclot or something I will have to go off but I dont think that far ahead I am enjoying clear skin.

having a good diet is important no matter who you are, of course but dont go crazy with it. I did that, it didnt help acne nor anything else it just stressed me out.

 

Good luck nice to meet another thin PCOS lady.



#19 AuguriesofInnocence

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Posted 03 May 2013 - 10:42 AM

I also could not tolerate spiro. maybe once Im too old for birth control Ill give it a try maybe I will weigh more when Im 50 lol.

I knew 100 mg was too much for me because it lowered my blood pressure to the point where I was feeling dizzy and fatigued even though I drink at least 2 L of water a day.