Hello everybody!
Here I am 7 months off my first round of Acutane.
Although I had great success with this treatment, i feel that there needs to be a thread for people who may be suffering hormonal acne or acne caused by PCOS (poly-cystic ovarian syndrome).
I have had several concerned friends from acne.org write on my blog and pm me about their frustrations and struggles with acne and PCOS. Having struggled with acne since my early 20's I can relate!
So some history:
My acne began around 20 or 21. One or two pimples multiplied over 6 years until i found my face a wreck, and having tried every treatment under the sun. I was fed up dejected, and sick of acne.
So i decide to get serious and go on Accutane. This was after the failure of Minocyclene and horrible side effects and liver damage from that antibiotic.
Inbetween Accutane and Mino, I had a rest period of about 6 months. I decided to go off of Birth Control, and Just stop taking meds.
My skin was perfectly clear, and about one week after my last Mino pill, my face erupted in tons of cystic pimples.
Then truly weird symptoms began appearing:
My hair started shedding rapidly
I grew coarse "pubic" style hair in weird places, like legs/feet
My facial hair (little moustache) darkened
My period went Bizzaro. It got extremely irregular
Heavy Heavy menstrul cycle
Crazy, heavy, debilitating cramps with heavy bleeding.
Yet normal Paps and no endimetriosis
Extremely tender breasts/nipples. Like wearing a bra was painful
Rapid Weight Gain that would not shed despite good diet and regular exercise
Note: of course i had gone to the OBGYN when all of this started, and tons of hormone pannel labs and exams were done. Nothing popped up, and so we waited.
D- Day struck. The MOP.....mother of all periods.
I was riding around with a guy-pal around in his fast new BMW. We were having a great night. Then all of a sudden, I started getting really bad cramps. I had been spotting all day, and was wearing a tampon, and a pad. I asked him to take me home. He was a close friend, and I told him that i had been having bad lady-cramps and that i needed to get home. He dropped me off, and since it was dark, i didn't notice.
When i got into my bathroom, the cramps had subsided. I looked down, And my JEANS were SOAKED through with BLOOD! I was freaked! I was hysterical, and totally embarrassed. I called my friend to tell him to check the seats for blood, cause i was concerned about the BMW's interior (being an auto enthusiast myself).
I waited no further, and went into my OBGYN the next morning.
I told her what had happened and since we had already ran all the normal tests, and we knew i wasn't preggers from recent exams, She ordered an ultra sound.
The ultra sound was really kinda weird. I went to the office, and they inserted this wand and it just felt weird to get done. But the results were revelatory.
They found many tiny cysts on my left ovary.
Ah Ha!
So the cramps/bleeding episode i had my OBGYN told me that was a cyst that had popped.
Its normal for women to have small cysts, and every once in a while they pop.
But my symptoms over the previous 8 years revealed a festering problem I didn't even know existed! PCOS! That was why NOTHING cleared up my acne! And the Birth Control i was on kept the PCOS disguised and subdued it so that it was never diagnosed.
So my OBGYN immediately put me on YAZ. She said it was a mild case, and the cysts were small, so the BCP should help control the cysts.
YAZ is different from other BCPs because it contains an ingredient that blocks androgens called Drospirenone. Androgens are the hormones which cause acne. Drospirenone is similar to another drug called Spironolactone. "Spiro" is what is used to treat severe PCOS. (its also a diuretic some of your grandparents may be familiar with it)
2 months later I had a follow up ultra sound and I was free of cysts. I followed up a year later, and I remained cyst free.
But the Acne was unrelenting. I had to get rid of the Acne. SO i took a 6 month course of Accutane. (see my accutane blog)
It cleared up the acne, and the whole time i took YAZ. So now, my cysts are gone, and the acne is gone.
About 2 months ago i began getting breast pain from the estrogen in YAZ. Sometimes people get estrogen sensitive according to my OBGYN. She prescribed me a new BCP with lower amounts of estrogen. But it did not have the Drospirenone in it.
So every month, one week before my period, I have had a few cystic zits pop onto the previous pristine canvass that is now my face!
One of this zits was so bad, that I had to go to my derm and have him excise it and inject it with cortisol. Because it broke the skin, It cause a huge, Ice-Pick scar right next to my lip.
This month I have more break outs.
So it's a delicate balance. I can either bear the zits, or have breast pain and other side effects.
Right now It's hard for me to decide what to do.
So if you think you may suffer from PCOS, here is the place to meet others who may suffer from PCOS.
Gather information, help each other out, distribute resources, and get rid of ACNE FOREVER!!!!
hi sunnicalli -
i can totally really relate to your frustrations about PCOS and acne!!!
i have just been diagnosed with "thin" pcos while trying to conceive. i never knew i had it.
all this time - 10 years i have been struggling with acne!!!
i didn't have any of the typical symptoms of PCOS (weight issues, increased hair growth) so i was not diagnosed.
i have strugged with acne on my chin my whole adult life from age 19 (i am 29 now).
my doctor put me on Yaz and I have been on it for around 7 years or so. And i agree, it just masked the problem! It controlled my acne but when I got off it for trying to conceive, the acne came back worse than ever!
it was only during this time while I was trying, I found I had PCOS and it was causing my acne, and I was not ovulating (i found out i have cysts on my ovaries after having an ultrasound) . Luckily, my acne has cleared with my hormones balancing out after coming off the pill (took 9 months), and my acne was always non inflammatory, so it wasn't as bad as inflammatory acne. I have heard about a drug called metformin which is used in PCOS to combat insulin resistance (which is the main issue with PCOS) and restore hormonal balance. This drug helps with weight loss, acne, and all the other side effects. Not sure if anyone has used it?
It's so frustrating battling acne for sooo long and not knowing. I just wish I had known about PCOS earlier. Goodluck with your journey! And I agree there should be a thread for hormonal acne and PCOS!!
hi sunnicalli -
i can totally really relate to your frustrations about PCOS and acne!!!
i have just been diagnosed with "thin" pcos while trying to conceive. i never knew i had it.
all this time - 10 years i have been struggling with acne!!!
i didn't have any of the typical symptoms of PCOS (weight issues, increased hair growth) so i was not diagnosed.
@ STAR: Hello and welcome!
Your writing struck a cord within me! I wonder if a lot of women have similar experiences, and if PCOS underlies a LOT more acne or PMDD cases than it is given credit?
I think going on BCP at a young age helps stop ovulation, and if you stop ovulation, it mitagates the symptoms of PCOS?
I really don't know. I received little to no information from my OBGYN because mine was such a "mild" case. UGH
I Thought about YAZ this way, there are worse drugs (side effects-wise) that I could take when compared to birth control. If I can solve most of my PCOS issues with just YAZ or other birth control, and my symptoms are not so bad, than I would do it!
I hope more people join this thread and share their knowledge, thoughts, or ideas 
PCOS causes horribly insidious cases of acne. I think it would be worth it to look at ways to treat or prevent the root cause of the acne, and ways to make current acne cases less severe!
Hi Sunnicali
Nearly the exact same thing happened to me. I started getting acne when I was 20 (now 22), started with a couple of zits, rapidly turned to cysts and uncontrollable acne.
Then there was the hair shedding, my hair is long and I do seem to shed more hair than most people, but all of a sudden, my hair brush was FULL of lost hair after my usual morning tidy up. When I was washing my hair, I'd stroke water through it and find that clumps came out in my hands. Pretty shocking.
Since I was 16 I had been on microgynon so I never noticed irregular periods. I came off the pill when I was 19 and noticed that my periods would sometimes skip or be late/early. They weren't unbareably heavy but they were EXTREMELY painful. Cause me to double over when they struck. Nausea inducing cramps...
About 7 months ago I decided that I wanted a method of birth control that put absolutely no hormones into my body so I got the copper coil. My doctor warned me that my periods might get worse but they didn't, same horrible cramps.
Then one day about 5 months in, I woke up in the night with THE WORST CRAMPS EVER. They came every 5 minutes on the dot and lasted about a minute. I went to the toilet and literally had to sit there for hours because I was bleeding uncontrollably. The cramps and heavy bleeding lasted for... 6 hours, then I had to call my mum to pick me up and take me to hospital because I was in too much pain to drive.
I had the coil out the next day and the hospital ordered blood tests. They came back and showed that I had probably got polycyctic ovaries - needed another blood test to confirm (I'm so impatient for an answer!)
My period that month lasted 6 weeks, not just spotting, actual 6 week menstruation!
I've been on yasmin for 3 months now, my acne isn't clearing but my periods are way less painful and don't last as long.
Have you experienced weight gain as a cause of the PCOS?
I've experienced A LOT of what you guys have!
I'm not currently diagnosed with PCOS but Im in the processes of being tested and such, and my doctor thinks it's highly likely.
Have any of you tried the calcium vitamin d3 method? A friend of mine with PCOS tried it and it actually helped her concieve.
I've only been taking vitamin d3 (because Im unsure of what calcium supps to take right now...if any), and I'm only two weeks in, but I'm one of those girls who can actually FEEL myself ovulating (when I do! lol) and I felt it exactly 2 weeks from the date of my last period. Which has never happened for me. I'm anywhere from 20 days apart to 4 months apart, so this was pretty much dang on.
Just wondering if any of you have tried it? I'd rather do something naturally then take lots of medication for it personally.
I have a bottle of Calcium + Vit D in my cupboard but I'm very wary to take it because of all the medical warnings (not sure what they are but will google it later)... I think vitamin D sources (other than the sun - which I see little of in the UK 
) are oily fishes and eggs.
I'm not trying to conceive but is it true that PCOS can cause infertility if not treated?
My doctor said that he wouldn't treat mine other than with Yasmin which seemed strange? I never trust doctors though, I spend so much time on forums and symptom checkers (and watching House MD) that I have developed a strange sense of being a secret medical genius...
Well if you have PCOS you're not ovulating regularly, meaning you have a difficult time concieving.
I was put on yasmin too, and it just made it that much worse when I came off the pill last September. It was like my symptoms exploded 10 times worse!
We dont get much sun here either, but once I started taking the vitamin d3 I noticed it helped a lot with my acne too. I guess time will tell for the other stuff!
These are some links I found:
http://www.worldwidehealthcenter.net/articles-239.html- this just says pcos has been corrected with it, but there's other info.
http://askcassyfirst.com/healthinfo/what-i...alcium-success/
Im not a doctor, but in my opinion birth control just hides the symptoms. It gives you a fake period. It doesn't actually treat anything at all.
I agree, I think chicks need to be made more aware of PCOS and its symptoms so that they can be managed.
Also, thank you Greeneyes, as soon as I leave the office I'm off to Holland & Barrats to stock up on Vitamin D supplements (I'm also going to get some flax seed oil, B5 and vitamin E)
Oh, any one know of any warnings that say you shouldn't take too many supplements at once? x
I havent got much of a clue about the other ones, but I currently take 4000 IU of vit d3 without any problems! It just depends on how much sun you get. I started on 2000 and worked my way up but if I felt weird I would have stopped.
Just make sure you get vitamin d3 and not d2 or just d! And make sure it's a softgel or liquid. That way it'll absorb the best.
Let us know how you get on!
I havent got much of a clue about the other ones, but I currently take 4000 IU of vit d3 without any problems! It just depends on how much sun you get. I started on 2000 and worked my way up but if I felt weird I would have stopped.
Just make sure you get vitamin d3 and not d2 or just d! And make sure it's a softgel or liquid. That way it'll absorb the best.
Even though it's getting to summer, I work in an office and drive to work so I get very little time in the sun. I was recommended occasional sun beds but I am already VERY nervous about my skin ageing as a result of acne treatments that I avoid them. http://www.acne.org/messageboard/treating-...in-t297741.html
I really hope H & B sell D3! The UK is pretty rubbish for supplements at the moment
i can totally really relate to your frustrations about PCOS and acne!!!i have just been diagnosed with "thin" pcos while trying to conceive. i never knew i had it.
all this time - 10 years i have been struggling with acne!!!
I know this was directed to the OP but I had to respond. I also have thin PCOS and while I was officially diagnosed with it back in 2008, I always knew that something wasn't right with me because I had acne since I was 10 and I still struggled with it as an adult whereas it cleared up for others once they past the teen years. That and BC pills that contained anti-androgens were the only BC pills that actually helped my skin whereas the others made it worse. I had it all that time yet I only found out about it just a few years ago.
The only pill that cleared my skin so well was Diane 35. How I would love to be back on that again!
One thing I didn't know about PCOS until I did some research on it is that it actually begins when you start puberty! It is something that is genetic so you are born with it but it doesn't make an appearance until you reach puberty yet many people think that it only starts when you are in your adult years but it doesn't and I'm proof of that. Not only was my skin horrible while growing up but my periods were always irregular. They still are to this day.
To sunnicali,
YAZ or Yasmin isn't the only BC pill that contains androgen blockers. Diane 35 contains cyproterone acetate which is used to treat prostate cancer because it blocks excessive androgens and it acts as a natural progesterone. It too helps to regulate hormones and get rid of acne. I've been on both Diane and Yasmin but Diane was the only that worked for me. Yasmin, I believe is the main reason why I suffer from migraines now because it gave me killer headaches when I tried it for the three month period.
I havent got much of a clue about the other ones, but I currently take 4000 IU of vit d3 without any problems! It just depends on how much sun you get. I started on 2000 and worked my way up but if I felt weird I would have stopped.
Just make sure you get vitamin d3 and not d2 or just d! And make sure it's a softgel or liquid. That way it'll absorb the best.
Even though it's getting to summer, I work in an office and drive to work so I get very little time in the sun. I was recommended occasional sun beds but I am already VERY nervous about my skin ageing as a result of acne treatments that I avoid them. http://www.acne.org/messageboard/treating-...in-t297741.html
I really hope H & B sell D3! The UK is pretty rubbish for supplements at the moment
I live in the UK and had to get my Vit D3 off of Amazon.co.uk because the strength in Holland&Barratts is pathetic. I got HealthyOrigins Vitamin D3 5000IU... It was about £16 for a years supply. Hope that helps!
wow all this time I never knew there was a thread especially for women with pcos. I am 29 and have been diagnosed with pcos for about 9 yrs, and have had hormonal acne since I was 13. I am currently trying out the regimen, but I know since my hormones are all out of wack i may never be 100% clear on the regimen. Metformin worked wonders for me, but I haven't been back to the doctor. I was wondering if anyone has had any luck with natural supplements and vitamins? I am not only trying to get rid of my acne but I'm trying to conceive. Thanks ladies. I'm so glad to have found this thread.
I live in the UK and had to get my Vit D3 off of Amazon.co.uk because the strength in Holland&Barratts is pathetic. I got HealthyOrigins Vitamin D3 5000IU... It was about 16 for a years supply. Hope that helps!
Cheers buddy! I have had supplements from Amazon before, my Holland and Barrats are over priced with lazy clueless staff.
Did Vit D work and how quickly? x
I've been taking a combo of saw palmetto and vit d3 and I don't seem to have any cystic spots...just some small pimples, which I now have some cream for. Im not 100% but it's not troubling me so much now... Just the red marks left over!
I think things that work tend to start working immediately for me... So I noticed my acne subsiding straight away
WELL HEY THERE STRANGER!!!
How's it going? So glad to hear that Accutane worked out well for ya!
I HEAR YOU!! I'm over a year post-tane and while my results have been impressive and long lasting... the combination of stress and my monthly is causing me to break out again 
It's nothing worth complaining about but it doesn't make it any less frustrating with what I put myself through to free myself from feeling this way. I'm so sad.
I'm currently sporting a massive one on the chin and some tiny ones on my cheek. Not to mention I broke out pretty bad last month and my need to pick and pop scarred nicely.
I don't know what to do, I feel like crying. Stupid job.
What cleansers/moisturizers/topicals etc. have you been using?
Glad to see that all is well with you!!!! 
I have PCOS and it seem to take the Drs YEARS to figure that out.....I also have endometriosis, so let me tell you FUN FUN, you would think maybe having these 2 my periods might actually equal out and be normal NOPE,Im on my period 25 days out of a month, I swear we spend more money on tampoons,pads and toilet paper then we do gas a month! Anyways My acne along with my facial hair is so bad and i use to have PERFECT skin, it started slowy about 12 years ago and just slowy got worse, and it stared at my chin with one maybe 2 hairs and 1 pimple now its all the way to my check bones! Along with thick happy trail, dark hair around my nipples which at times can get ingrown,my upper theighs hair is darker and thick and grows every direction but the right way! My Dr has me on Spironolactone 25mg 2xs a day with metformin 500mg 2xs a day.
I have tried EVERY and I mean ALMOST EVERY face wash,face bar,scrub,mask,everything from 2%,5%,8% & 10% to clean my face and NOTHING is working
I use mineral make up
i wash my brushes
I dont use toner that has alcohol,but I cant find one that doesnt break me out
I cant find a moisturizer that doesnt flare me up
I seems like I will clear up for 2 days and then BAM my whole face is red, and its half pimples,and half ingrown hairs which are pimples.....so I have pluck
AT 1st I did start off with 10% when I washed so I figured maybe Im drying my face out and I know that can make it worse
So Ive heard of paula Choices, I was thinks of giving that a try
or Acne.org
Spectro Jel
or Carley's Clear and smooth products (which i have heard and read great reviews about and have a friend who uses)
I just wish they had makeup,hair product,face product ect for females with PCOS
uuugggghhh, i'm SO GLAD this exists!
i always feel so weird and dejected because of my pcos!
maybe you guys can help me...
my periods have always been irregular. i've always been a bit heavier and weight loss was really hard for me. all my sisters have bigger breasts than mine, like, by a lot, and i never knew why. anyway, around 21 or so i started getting hair (just a few random ones) on my chin and neck and i didn't know what it was.
then i started getting bad acne and my derma said i might have PCOS.
go to obgyn, long story short, i DO have it!
BUT....
i also have a blood clotting condition. meaning... i can't take birth control! at least for now. i'm working with literally 4 doctors right now to try and see how we're going to handle my accutane (that i'm currently on) and to see how we can handle my need for birth control (to help regulate my periods, to shrink my cysts, etc.)
right now i'm supposed to be taking metformin to regulate my periods but i HATE taking it because it makes me bloated and feel sick!
ugh, i'm not sure if anyone can help me with any of this or has heard anything about this, but let me know! also, feel free to sprinkle me with words of encouragement because i always felt like such a freak on this disease...
also, i had a ruptured cyst late last year... most painful thing ever. i didn't bleed a ton... i don't think, but the pain was almost unbearable.
good luck, everyone!
sigh.
I understand the feeling weird part....I never heard of PCOS, and when I tell someone they look at me like I fell out of a tree,but then some people have heard of it and actually when i did lot of searching there is LOTS of people who have it, so i started to feel better!
My periods since i was younger have always been irregular and i was also told i couldnt have child due to having a split/double uterus,and that if I did i wouldnt be able to carry the child full term....well 15 yrs later I have know it all hormonal teenage boy,and no i didnt carry him full term had him at 32 weeks c-section, and my periods were still irregular,and never knew when i would have them and they never lasted long. The hair and acne started 12 years ago but started slow....the heavy bleeding and blood clots due to endometriosis started about 4-5 yrs ago but slowy got worst and yes i should have seen red flags but in all honsety with my history I figured it was normal, but it was getting to where i was off of it a day or two and then my husband and i could have sex and it was painful then I was bleeding bad and couldnt get out of bed for a few days.
my weight has always been thin I only gained weight 2x's and and 1st time nothing was ever said about PCOS actually a yr b4 that my dr said I had a thyriod problem and I would always thin...uh well a yr later I had gained 10lbs and another yr another 10lbs prolly cuz i wasnt working and got a little lazy, but i did lose it I wasnt as skinny as I was b4 but b4 my husband was also in iraq for 2 yrs so i was kinda depressed. i went to the dr in Oct of last yr when I couldnt take the bleeding anymore,the acne,facial hair ect....and my migraines, thats when she started me on the metf. and i havent had any problems on them at all,she just up my dosage to taking the 500 2xs a day, and the Spironolactone 25 milg 2xs a day is for acne and facial hair and it also helps if you are losing hair from your head, it does take about 2 months to see results, and you might need a higher milg,she started me on 25 1x a day and 2 1/2 months went by and i saw nothing so she up it,she actually thinks she will have to up it some more but wants to slowy do it,along with me going to the Derm.The Spironolactone is also a water pill so it helps with water weight. Since Oct i have lost 26lbs....which i am very happy i was weighing 153 which is the heaviest i have ever weighed, alot of my weight lost has to do with my migraine meds,she also put me on a diet pill by I stop taking it a few months back and told her I would start back up later cause after awhile your body gets use to it and it doesnt work. I think my migraine pill does just fine, I cant even drink pop with it! My Obgyn did put on any BC, I take that back,he did for 10,and called it the restart pill, he gave it to me for my endometriosis and i had to take it for 10 days and i bleed for 10 days and bleed for about 8 days heavier then I have ever bleed after that, then I had to wait and see if it "restarted" me and made my periods normal which he said could take up to 2-3 months to notice well its been 3 months and they are not normal...not as bad...but on a scale they are 70% the same so that means its laparoscopy time!
Long story short...I have a double uterus,PCOS,& endometriosis,and im 33 yrs old...oh and migraines!
I did want another child at one time,but that doesnt look like its going to happen!
Julia....what milg of metf are you on? have you tried maybe taking half in the moring and half later in the day? i havent had any problems, but everyone is idff on meds. Maybe your Dr needs to lower your milg are you eating when you are taking them?
I too have PCOS, and it's probably the reason nothing works for me -- not even Accutane as I've been on it twice (my skin is great for a year then goes back to horrific). My derm has recommended a third time on Accutane but I'm scared because we are thinking about kids in the next year or so, and I don't know how hard it will be for me to get pregnant with PCOS. Don't really feel like spending nine months on Accutane and THEN worrying about it being out of my system before trying for a baby (assuming I'm even ovulating...with PCOS you never know).
My skin rules my life and I have tried absolutely everything. I feel like I've been forced to choose between waiting two years to start our family...and having my life back with clear skin. It doesn't seem worth it, but meanwhile knowing I will never clear up unless I'm on Accutane again is the worst feeling ever.
Sorry for the rant. Anyone who'd been in this situation...your advice would be greatly appreciated!
Sarah
((**My math: Assuming I start Accutane in six weeks (after tests and gov't clearance, call it Sept. 1) + eight months on it (my norm, which puts us to April 2012) + try for baby (May 2012, earliest). So if I can get pregnant right away, which is highly unlikely due to PCOS, we're looking at a Feb 2013 baby at the absolute soonest. I'll be 32 by then!))
Hello!!
So I am 30 years old and just found out I have PCOS =(. I cannot believe all of these doctors and all this time and no one ever cared to tell me this before. I had acne since I was 12. I am so depressed about this. Between the acne and the hair in all of these weird places I have just had it. And my dad is dying so now with all of this I am even more depressed. If someone has any advice, please let me know cause I had it.
My acne always went in stages from really bad to not at all. I was on birth control for 6 years so I guess that is why I never had as bad of problems with it. But I decided to go off of birth control pills to get pregnat and I didnt get my period for over a year. Thisw is what sparked finding out this problem. I have appointments now to go to the doctore to talk about treatments for PCOS. I was curious to know what treatment has worked the best for everyone with PCO as far as treating acne, slowing down hair growth and getting pregnat?? Please if anyone has something that doc put them on that worked please share cause I want to go in there knowing what has good success rather than just taking the doctors word for it?? Any help/advice will be so appreciated. Did anything doc ever put u on totally clear u?
On another not, I have noticed that some of you just finished a round of accutane. I do wish you the best of luck. But I have been on accutane twice and it did clear me for a couple of years but always came back and came back bad. My opinion of accutane is for people like us it is a short term solution and with all the side effects it is a short term solution that can lead to long term problems. I swear that accutane was the cause of my GERD. No saying I would have never taken it but just dont think of it as a long term solution.
Also I have extremely oily skin lately, so bad that i can wipe off the oil and it is back in 5 min, does this happen to anyone else??? Also my worst area is my back, it is full of acne lately and I am so embarrased to go out with it. I wont wear a tank top or bathing suite. Anyone know of anything I can use?
Thanks for your time!! And hopefully we can compare together to find a fix for our problems =)
There's a lot of good info here! I'm glad to find that I'm not alone on this website. I posted yesterday hoping to get some advice/info on gals with PCOS and accutane experience. I should be going off soon and want advice on what regime to use post-accutane to control the hormonal acne... no one is replying to my post 
