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Hi everybody, 

I'm looking for advice on what I could try next because I just don't know what to do anymore and my acne took a bad turn this summer.  
I'm a 30 y o female with PCOS and skin that tends to scar really bad. I've been on Yasmin since 2014, Diane for 6 months before that. 2015 added Spironolactone, first 50mg then stepped down to 20. Took it for two years and those were the best years for my skin since I got acne at age 13. But for some reason I freaked out about staying on Spiro for too long, went on 10mg and then quit. 
After that I've only been on Yasmin and experimented with different supplements on the side. I mostly take Omega 3 and vit D, but lately added Inositol, vit B complex (maybe not good for acne?), maca, zinc and chromium. A week ago I started collagen supplements (fish) with added chondroitine, msm and vit C. I had bad past experiences with msm so I don't know if it's a good idea having it in my supplements. But the amount isn't big. 
I also tried treating my acne as fungal which is when it took a change for the worse. A regime with niacinamide serum and clotrimazole cream made my skin dry and dull. Adding polysporin for the supposed gram negative bacteria clogged my pores and caused inflammation. I quit those things now but it's not getting better. From other topicals, my face has built tolerance to benzoyl peroxide so I'm using salycilic acid, but it doesn't do much for me either. Went back to washing my face with aleppo soap which I quit while on anti-fungal regime, to not "feed the fungus with oils". However aleppo soap had been so much better for my face than the anti-fungals. 
About the diet - I'm not convinced it affects my acne. I've tried excluding gluten, nightshades, dairy, but I get acne while eating healthy and no acne while eating junk so I don't think there's much to it. I however drink peppermint tea and it seems to have a slight positive effect on my chin pustules. However I went from being vegetarian to eating meat in spring so maybe it affected it somehow? 
Another thing I've started doing lately - got a job that makes me wake up at 6 am. I do get 8 hours sleep but I'm tired all the time. I 

What to try next? Accutane? Go back to Spiro? Maybe switch Yasmin to something more modern? Should I keep taking supplements? Any effective topicals that doesn't aid scarring? 
I'm scared of going on accutane due to all my health issues - PCOS, IBS, skin that scars, severely low blood pressure (below 90/60) and possible adrenal fatigue. 
I'm really really lost. And I miss my skin from a few years ago when I was on combo yasmin/spiro, but I'm kinda scared of Spiro too, due to it lowering blood pressure :(  
 

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I have PCOS and take yaz and Spiro. Started breaking out after getting off but went back on and it’s definitely better. I’m more prone now to acne than ever before even being back on it.  Diet definitely causes my acne but it doesn’t mean it’s just unhealthy food. I also have IBS and those triggers cause it (avocado for example). Anything with vegetable oil/canola oil. Bread and pasta really break me out too. I take Berberine before meals when I’m eating things like white rice/potatoes etc. I still break out but more like closed comedones when I don’t follow the diet.

My skin always feels/looks better after micro needling so I think part of it is also cleansing all the gunk/cell turnover, so maybe look into regular facials or peels. 

 I really wish I didn’t listen to people when they said birth control/medication is bad for you. That’s not true for every one, as some of us really benefit from it, so I wouldn’t worry too much about the Spiro. As long as you’re getting regular blood work since your doctor has to ok it to keep prescribing it anyway. My doctor told me salt helps with low blood pressure so I’d ask yours about that.

 

What type of breakouts are you getting? What do they look like and are they tender/painful?

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13 minutes ago, hlp334 said:

I have PCOS and take yaz and Spiro. Started breaking out after getting off but went back on and it’s definitely better. I’m more prone now to acne than ever before even being back on it.  Diet definitely causes my acne but it doesn’t mean it’s just unhealthy food. I also have IBS and those triggers cause it (avocado for example). Anything with vegetable oil/canola oil. Bread and pasta really break me out too. I take Berberine before meals when I’m eating things like white rice/potatoes etc. I still break out but more like closed comedones when I don’t follow the diet.

My skin always feels/looks better after micro needling so I think part of it is also cleansing all the gunk/cell turnover, so maybe look into regular facials or peels. 

 I really wish I didn’t listen to people when they said birth control/medication is bad for you. That’s not true for every one, as some of us really benefit from it, so I wouldn’t worry too much about the Spiro. As long as you’re getting regular blood work since your doctor has to ok it to keep prescribing it anyway. My doctor told me salt helps with low blood pressure so I’d ask yours about that.

 

What type of breakouts are you getting? What do they look like and are they tender/painful?

I constantly hear scary tales about hormonal medication as well, that in some years I might have serious health issues. I tried asking a new obgyn to prescribe me Spiro last week, but he knew nothing about it, and said why would I want a drug that might forever ruin my health... But is it that bad really? Listening to that made me get off Spiro and now I'm stuck with horrible skin again unable to proceed with any scar treatments (scars really are ruining my life) due to constantly ongoing acne - why spending all that money on fixing scars when new acne will damage it again. Too afraid to try microneedling - impaired healing at the moment. 
Did you ever get any negative effects from Spiro - seen through blood tests? Too low blood pressure? That's the one I'm worried about as someone with hypotensia. Before I didn't have that effect, but I didn't blood pressure this low. Guess it's due to worsening adrenal fatigue. Salt might help, but it also adds to water retention and bloating so it might be problematic 

My breakouts are painful, often big and pusfilled, or just red and angry and doesn't go away for a few weeks. Not really like the closed comedones you described 
 

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i would get back on the spiro and get regular bloodwork and monitor your blood pressure (you can buy one of those kits at the local drug store) weekly and go from there. i've been on spiro for 6 1/2 years and have low blood pressure normally and it hasn't made it any lower or anything. i never thought about going off it well at least until i hit menopause or something. 

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Posted (edited)

Honestly, I would give in and try Accutane.

I also have PCOS and after years of trying diets, topicals, herbs, supplements and everything else I am on Accutane and you can't imagine the peace of mind...

It's true that us with PCOS have a slightly higher chance of relapsing but it doesn't mean Accutane can't be the cure to our acne.

 

I decided to go on Accutane also because I prefer to be on a strong drug for ~ 6-months and be over with it rather than taking something long term knowing I have to deal with the same symptoms or worse ones when going off the medication.

 

Edited by Jck17

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19 hours ago, tracy521 said:

i would get back on the spiro and get regular bloodwork and monitor your blood pressure (you can buy one of those kits at the local drug store) weekly and go from there. i've been on spiro for 6 1/2 years and have low blood pressure normally and it hasn't made it any lower or anything. i never thought about going off it well at least until i hit menopause or something. 

It did make mine lower and I had crazy leg cramps while on Spiro. Eventually I freaked myself out and stopped using it. Used it in combo with Yasmin and that was the time my skin was at it's best and I was able to move on to repairing the scarring instead of focusing on acne.. I think I might get on Spiro again, maybe the side effects are worth having a normal self-esteem... 

4 hours ago, Jck17 said:

Honestly, I would give in and try Accutane.

I also have PCOS and after years of trying diets, topicals, herbs, supplements and everything else I am on Accutane and you can't imagine the peace of mind...

It's true that us with PCOS have a slightly higher chance of relapsing but it doesn't mean Accutane can't be the cure to our acne.

 

I decided to go on Accutane also because I prefer to be on a strong drug for ~ 6-months and be over with it rather than taking something long term knowing I have to deal with the same symptoms or worse ones when going off the medication.

 

I'm way too scared of Accutane due to many other health issues that I have. Also my skin is dry as it is and lips are naturally as if I'm on Accutane already, lol. Chronically chapped and bleeding. Hair is kinda thin, not like it was when I was younger. Can't imagine what Accutane would do to all that... 

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4 hours ago, Pianina said:

It did make mine lower and I had crazy leg cramps while on Spiro. Eventually I freaked myself out and stopped using it. Used it in combo with Yasmin and that was the time my skin was at it's best and I was able to move on to repairing the scarring instead of focusing on acne.. I think I might get on Spiro again, maybe the side effects are worth having a normal self-esteem... 

 

That's crazy about the leg cramps. I don't get those as long as I eat a banana everyday and take a good multi vitamin. I would talk to your doc and see what foods and vitamins can help with the leg cramps while on spiro and go from there. Totally agree about Accutane its just not worth putting your body though all of that. Maybe start with a low dose of spiro and see if it helps before you would increase to a higher dose. Also I know for me being on birth control made my skin so much worse. I think that stuff just permanently altered my hormones or something but thank god for spiro. I hope you find something that works for you soon. Hugs

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On 8/7/2019 at 9:59 PM, tracy521 said:

That's crazy about the leg cramps. I don't get those as long as I eat a banana everyday and take a good multi vitamin. I would talk to your doc and see what foods and vitamins can help with the leg cramps while on spiro and go from there. Totally agree about Accutane its just not worth putting your body though all of that. Maybe start with a low dose of spiro and see if it helps before you would increase to a higher dose. Also I know for me being on birth control made my skin so much worse. I think that stuff just permanently altered my hormones or something but thank god for spiro. I hope you find something that works for you soon. Hugs

The problem is I can't find any doctor who will prescribe me Spiro :( the doctor who used to do that doesn't work at the same clinic and I don't know where she is now. I've seen two obgyns and both refused to prescribe it to me claiming its "dangerous" and "does nothing for acne". The last one I left crying, my skin is getting out of control and I want to start is asap but nobody knows anything about Spiro here in Stockholm. 

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yeah definitely ask your derm. my derm was the one that suggested it to me years ago and i still get it from her. ugh i remember the feeling of having bad skin its the absolute worst. 

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I managed to get Spiro through personal connections while visiting my home country! Any ideas how much to take? I remember starting with 50 mg and then going gradually down, maybe 50 mg is too little? 

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My derm started me at 100mg and said that’s usually what’s needed to see more effect but it can vary person to person. I’ve never had any side effects though besides the diuretic part. If you want to gradually increase I would do so while monitoring your blood work with a doctor since you said you’ve had previous worries. My doctor makes me get bloodwork every now and then to make sure my levels are good. 

Edited by hlp334

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3 hours ago, Pianina said:

I managed to get Spiro through personal connections while visiting my home country! Any ideas how much to take? I remember starting with 50 mg and then going gradually down, maybe 50 mg is too little? 

start with the 50mg and see if it helps and if not then go up to 100mg. it will take time to do it's thing so if the skin is really freaking out i would get on keflex or some type of antibiotic for a while to calm things down. i always have the best luck with keflex that stuff really works. so glad you got the spiro i pray it works soon for you.

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Alright, I think I will do 50 mg as for now. Does any of you have experience of quitting birth control and taking spiro instead? Can it cope with the backlash that quitting bcp causes? 

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I went on doxy and spironolactone after getting off BC and it completely cleared my cystic acne that I got from getting off. After a stressful week/eating too high of glycemic foods I started uncontrollably breaking out in white heads (not cystic but id get a new one everyday). The doxy and Spiro did nothing for those. Took forever to make the diet correlation. I also didn’t get my period for 8 months/got diagnosed with PCOS so I decided to get back on birth control. It’s helped a lot for me. I avoid bread and pasta but I’m now able to at least eat potatoes and rice without getting these breakouts.

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I did an extensive blood test today and found out that my testosterone wasn't so high actually. But the rest was pretty bad, estrogen, progesterone, follicle stimulating hormone and luteinizing hormones are waaaay too low. I don't know what that means for my acne and it's so difficult to navigate all that without having a good doctor to help. I'll be back to Sweden soon and there they don't treat pcos, other than prescribing the pill. But I've taken the pill for years now and my blood test isn't anywhere near good. :(

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Oh no I’m sorry that’s so frustrating. Are you able to travel via plane or train to any PCOS specialists or endocrinologist?  If you don’t have one near you can you go to a regular doctor and tell them which tests you want to run? As for how it affects acne a dermatologist should help with that.

I know how frustrating it is, most doctors don’t care much when the main physical symptom is acne. All of my hormone levels were normal but my doctor said that even if my testosterone was in the “normal” range it was actually still higher than it should be so it’s very confusing.

Have you tested your insulin level as well? I’ve seen a lot of people with PCOS say their fasting glucose is normal but it wasn’t until they did the 3hr oral glucose test that they found they were insulin resistance. Don’t know if that could cause it but hang in there and keep looking for a doctor till you find one that you like!

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8 hours ago, hlp334 said:

Oh no I’m sorry that’s so frustrating. Are you able to travel via plane or train to any PCOS specialists or endocrinologist?  If you don’t have one near you can you go to a regular doctor and tell them which tests you want to run? As for how it affects acne a dermatologist should help with that.

I know how frustrating it is, most doctors don’t care much when the main physical symptom is acne. All of my hormone levels were normal but my doctor said that even if my testosterone was in the “normal” range it was actually still higher than it should be so it’s very confusing.

Have you tested your insulin level as well? I’ve seen a lot of people with PCOS say their fasting glucose is normal but it wasn’t until they did the 3hr oral glucose test that they found they were insulin resistance. Don’t know if that could cause it but hang in there and keep looking for a doctor till you find one that you like!

I'm still waiting for my insulin results, but I did it fasting so it might not show anything abnormal... I'm thinking to ask for another after eating some carbs just to see if it spikes up. Other than insulin resistance, there could be something wrong with my pituitary gland since my luteinizing hormone is incredibly low (in luteal phase it should be in the range of 0.50 - 16.90 and mine is 0.07) but it's hard to increase luteinizing hormones without decreasing folicule stimulating hormone and that one is low too... I'm pretty sure they won't send me for any pituitary gland tests.. but I won't give up until they do... acne is just one symptom, I also almost have no period, have hot flushes, water retention - basically signs of menopause, while only being 30 years old...

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Hello,

Would suggest possibly dropping all the supplements except a strong Omega 3 (Nordic Oil) and a quality multi... Taking different things could put your body out of whack!

For topics, try washing your face with Dermol (non-soap and anti-microbial) as well as using it as a moisturiser. For topicals, three main options if avoiding Roacc.

1. Duac for 12 weeks, which has BP & an antibiotic
2. Differin - A retinoid to keep skin turning over well longer term. Good for maintenance after other treatments
3. If very sensitive skin, Skinoren, Azelaic Acid 20% (won't be back in stock until October so Finacea, which is 15% until then) - twice a day, an antimicrobial instead. 

Many studies conducted on the above!

Internally: Ramp up antioxidants: Berries, amla powder, 2 Brazil nuts a day. Dark green veg smoothies and the above high Omega 3.

Hope this helps :)

P.s. When I was comparing BCP, Yaz seemed to gain more favourable reviews for acne than Yazmin?

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14 minutes ago, Foodforthought said:

Hello,

Would suggest possibly dropping all the supplements except a strong Omega 3 (Nordic Oil) and a quality multi... Taking different things could put your body out of whack!

For topics, try washing your face with Dermol (non-soap and anti-microbial) as well as using it as a moisturiser. For topicals, three main options if avoiding Roacc.

1. Duac for 12 weeks, which has BP & an antibiotic
2. Differin - A retinoid to keep skin turning over well longer term. Good for maintenance after other treatments
3. If very sensitive skin, Skinoren, Azelaic Acid 20% (won't be back in stock until October so Finacea, which is 15% until then) - twice a day, an antimicrobial instead. 

Many studies conducted on the above!

Internally: Ramp up antioxidants: Berries, amla powder, 2 Brazil nuts a day. Dark green veg smoothies and the above high Omega 3.

Hope this helps :)

P.s. When I was comparing BCP, Yaz seemed to gain more favourable reviews for acne than Yazmin?

I've used Duac for about 2-3 years in my early 20's with very shallow results, similar to BP which I've used extensively also. Later switched from Duac to some prescription cream with retinoids, forgot the name, but it was similar to Diffiren. But as I'm getting older my skin gets less and less tolerant to retinoids - was using granactive retinoid from the ordinary in spring and realised retinoids aren't for my skin anymore. To be honest I can be using only an Aleppo soap and a simple moisturizer for months and not get any acne, but then my hormones get messed and no topicals make any difference. 

 

Just now, Pianina said:

I've used Duac for about 2-3 years in my early 20's with very shallow results, similar to BP which I've used extensively also. Later switched from Duac to some prescription cream with retinoids, forgot the name, but it was similar to Diffiren. But as I'm getting older my skin gets less and less tolerant to retinoids - was using granactive retinoid from the ordinary in spring and realised retinoids aren't for my skin anymore. To be honest I can be using only an Aleppo soap and a simple moisturizer for months and not get any acne, but then my hormones get messed and no topicals make any difference. 

 

Yaz has less estradiol, so maybe it's not a good idea to step down when I have too low estradiol already :/ it's very confusing 

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7 hours ago, Pianina said:

I've used Duac for about 2-3 years in my early 20's with very shallow results, similar to BP which I've used extensively also. Later switched from Duac to some prescription cream with retinoids, forgot the name, but it was similar to Diffiren. But as I'm getting older my skin gets less and less tolerant to retinoids - was using granactive retinoid from the ordinary in spring and realised retinoids aren't for my skin anymore. To be honest I can be using only an Aleppo soap and a simple moisturizer for months and not get any acne, but then my hormones get messed and no topicals make any difference. 

 

Yaz has less estradiol, so maybe it's not a good idea to step down when I have too low estradiol already :/ it's very confusing 

You might have more luck with Azelaic Acid with very sensitive skin? It's second line treatment recommendation for those whose skin won't tolerate first line treatments, but is just as effective as retinoids in studies if applied twice daily (research should pop up on Google). I've just started using Dermol 500 as a facewash and moisturiser as it's a super gentle emolient for people with skin issues and won't strip the skin.

I actually wonder if taking the pill long term stops the body from producing those hormones naturally (in a similar way to ingesting drugs that affect neurotransmitter levels and receptors in the brain over time). I don't know the answer to that though!

Are you a slim person? Increasing your BMI also increases oestrogen levels - I have a low BMI and have a similar problem (testosterone level ratios to oestrogen due to low body weight), but as I eat very healthily, am vegetarian, don't limit my food intake and can't seem to put on weight, I don't want to switch to junk...

Edited by Foodforthought

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1 hour ago, Foodforthought said:

You might have more luck with Azelaic Acid with very sensitive skin? It's second line treatment recommendation for those whose skin won't tolerate first line treatments, but is just as effective as retinoids in studies if applied twice daily (research should pop up on Google). I've just started using Dermol 500 as a facewash and moisturiser as it's a super gentle emolient for people with skin issues and won't strip the skin.

I actually wonder if taking the pill long term stops the body from producing those hormones naturally (in a similar way to ingesting drugs that affect neurotransmitter levels and receptors in the brain over time). I don't know the answer to that though!

Are you a slim person? Increasing your BMI also increases oestrogen levels - I have a low BMI and have a similar problem (testosterone level ratios to oestrogen due to low body weight), but as I eat very healthily, am vegetarian, don't limit my food intake and can't seem to put on weight, I don't want to switch to junk...

Hmm I should give azelaic acid a try, that's actually something I haven't tried as I'm always avoiding acids. Thanks for the idea. 

I'm slim but not skinny, with a pretty good figure and BMI, but my weigh tends to gather around my mid section and I have more and more cellulite the older I get. If I'd try to gain weigh to increase estrogens, these would probably worsen. I was sure I have estrogen dominance from the look of it... my estrogen is lower than progesterone, but both lower than the norm and lower than my testosterone

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On 8/17/2019 at 1:42 AM, Pianina said:

Alright, I think I will do 50 mg as for now. Does any of you have experience of quitting birth control and taking spiro instead? Can it cope with the backlash that quitting bcp causes? 

i hope it kicks in soon for you. i do not take bcp i stopped taking it years ago because it was only making my acne worse and i got a phlebitis in my arm so that was the end of that. i personally think that bcp caused all of my acne and screwed up my hormones forever because i never had acne in my life until i started birth control.  what i did though 2 months after starting spiro was get on the keflex and it cleared me up in 5 days. i've never had an antibiotic work so well and i've been on them all. my only wish is that i started the keflex with the spiro because i could have avoided some scarring that i got during that time. as far as skin products i cant say enough about glycolic acid that stuff is the best. i use it in a toner after i wash my face and it works so well to remove those dead skin cells. best stuff ever. i never had success with azelaic acid but i do love mandelic acid it's another aha like glycolic acid but i think glycolic works better for acne. 

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I read this again and noticed the link between possible adrenal fatigue, low pituitary activity, low oestrogen and your symptoms similar to menopause that you described. Might be worth focusing on what you can do to support your kidneys specifically?

Studies have actually shown that Azelaic acid (15%+) twice a day is as effective as Differin for acne and is prescribed by Derms if your skin is too sensitive for BP or Retinol-based topicals. Personally I did have success with stronger acids, but they seemed to disrupt my skin mantle, causing more acne after a couple of months when in a polluted environment as skin seemed to lose protection. When I had clear skin the strong AHAs made it baby soft, but when it was outbreak-vulnerable they made it much worse!

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21 hours ago, Foodforthought said:

I read this again and noticed the link between possible adrenal fatigue, low pituitary activity, low oestrogen and your symptoms similar to menopause that you described. Might be worth focusing on what you can do to support your kidneys specifically?

Studies have actually shown that Azelaic acid (15%+) twice a day is as effective as Differin for acne and is prescribed by Derms if your skin is too sensitive for BP or Retinol-based topicals. Personally I did have success with stronger acids, but they seemed to disrupt my skin mantle, causing more acne after a couple of months when in a polluted environment as skin seemed to lose protection. When I had clear skin the strong AHAs made it baby soft, but when it was outbreak-vulnerable they made it much worse!

Do you mean that kidneys could be behind those problems? That I should get some kidney supporting supplements or something like that? 
I ended up buying some glycolic acid as I found an affordable option, from the Ordinary. Kinda the same for me with acids - when my skin is at it's best, acids might suit well, but any other time it's a disaster. I think there are some issues with my skin's moisture barrier 

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