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PCOS & feeling hopeless (long post)

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(@kleigh482)

Posted : 07/29/2017 6:59 pm

I am a 35-year old woman who has suffered with acne since the age of 17. I was a late-bloomer, an athlete, and an emotional basket-case. I was super skinny. I did well in school. Today, I am successful in my career as a counselor and behavior analyst. Anyone on the outside looking in might think my life is great. The only thing missing in most ppl's minds would be a husband/child/family.

What most people don't know is how miserable I am. I have fought to get rid of my acne and discover the source of my acne and the source of other issues (struggling to lose weight, deal with menstrual irregularities, etc.) for going on 2 decades. September 2 years ago, my periods stopped for 4 months. I was on birth control and terrified that I was pregnant. Doc ran a few tests, everything was normal, said oh it's no big deal. Finally had a period. No more worrying. September of this past year, I decided I was sick of birth control. I couldn't lose weight. It wasn't controlling my acne. I stopped taking it. Then I went 6 months without a cycle. Then my acne got worse. Then I started growing hair where hair isn't supposed to grow. I was mortified. Doc ran tests, (I've taken more pregnancy tests than most women who are TRYING to conceive), thyroid, LH/FSH, among some others. LH/FSH ratio is 2:1 but doc says it is still in normal range. I finally say send me to a gyno. I'm convinced at that time that I have PCOS. She says I don't. Fast-forward to a gyno who takes me seriously and agrees I probably do have it. He runs an anti-muellerian (sp?) hormone test. It was in the normal range but above 4.5, which he says in his decades of practice (he's old y'all) has been indicative of PCOS. He says birth control will help symptoms but sends me to an endocrinologist for further testing to rule out other endo-disorders. I got the nexplanon implant before seeing the endo because my symptoms were out of control, and I started dating someone seriously & needed birth control.

The endo was an a$$hat. He pretty much told me I was overweight, and there was nothing else wrong with me. He said that the AMH test my gyno did was normal, & that I did not have PCOS. He said he would test for that. He put me on metformin. He said lose weight. He was not helpful.

I am not extremely overweight. I'm 5'7" and roughly 175 pounds. I've always been somewhat athletic and have a lean body. I've had breast augmentation because literally had no boobs before or after puberty. (36-double A...smaller than an A cup). I generally wear a size 8-10-12 depending on the clothing.

Anyway, test results come back, and i have high DHEA-S. The letter from the endo says "based on this information and your menstrual irregularities, we can say you have PCOS." I wanted to punch the man in the face. Anyway, the metformin started making me sick. I had to stop taking it and got in to see the PA. I was 5 min late to that appointment (thank you acne that my makeup wouldnt hide), and they rescheduled me. I lost my cool and bawled my eyes out. My primary doc agreed to see me for the endocrine stuff now that I had a diagnosis. We talked about my options, trying metformin again, getting different birth control since my acne has gotten worse with nexplanon (it actually can raise androgens), trying supplements, ways to manage my diet, exercising, and getting a referral to the dermatologist.

This has been going on now since January when the gyno said I have PCOS. It is about to be August, and I have my derm appt. Monday. I haven't stopped researching everything I can find about hyperandrogenism and PCOS and acne and hirsutism. Last night, I did for the first time about the anti-androgen medication (flutamide). Now I have been on accutane twice, spironolactone, every antibiotic under the sun, and spent thousands of dollars on topicals. Along the way, I've discovered I am allergic to benzoyl peroxide & macrolide antibiotics (z-paks and their relatives). I have had good months and bad months and in-between months, and I'm so sick and tired of this. I'm tired of it taking me almost 2 hours to go anywhere because of my face and hair. I'm tired of the effort. I'm tired of feeling lonely, depressed, and like I'm just not good enough. I've got acne on my face, scalp, neck, chest and bad acne scars all over, including my legs, bikini line and butt.

Here is the thing that that upsets me most, why did it take so long (and take me advocating for myself) to get this diagnosis, why aren't my doctors talking to me about trying something a little more potent (like flutamide or its relatives in the antiandrogen world)? When will doctors realize that medical risks are sometimes necessary to ensure a person's emotional well-being?

I am exhausted. I've cried my eyes out today. I've also punched a wall. I'm currently resisting throwing my phone because of the typing lag it is experiencing. I needed to vent and see if there is anyone else out there who feels as desperate as I do right now.

Sorry for the long post.

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(@juwalker)

Posted : 08/03/2017 5:16 pm

Bless you, I agree it's so frustrating. Unfortunately I think you're not alone in struggling to get the right diagnosis and then treatment. I am in the UK and it's the same. The NHS is under so much pressure trying inadequately to serve too many people with too few resources. Everything I have achieved in the past medically for myself and family has been a battle. I often feel overwhelmed with it all and cried with frustration only yesterday trying to get second dermatology appointment for a family member. I did it in the end after much blood, sweat and tears!!! I have personally had the best results with Dianette (an anti-androgen / contraception). I have had 10s of years of antibiotics and lots of creams. I have been on dianette for 10years now and have had acne free skin for the whole time after the initial purge. As I am approaching menopause I am now being advised by one GP that I need to come off it. I am terrified at the thought of it!! I am going to fight it. The nurse said I am still ok for a few years as I am not over weight and have good blood pressure and am 48 at the moment. Average menopausal age is 51.
We mustn't give up. You can't rely on doctors alone. Everything has to be led by you. Research and ask questions. Learn from other people's experiences and keep battling on!!!!

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(@weidwoman)

Posted : 01/23/2018 6:26 pm

Did the Spironolactone not work for you? I have read countless articles and posts about how it has helped many women with adult acne, PCOS and hirsutism. How long were you on it? I am currently taking Spiro at 100 mg. It's only been about 2 months for me and I am still breaking out. I am trying to give it 6 months at least to work. I hope you have found something that is helping you. I understand the feeling of loneliness and isolation. Blessings to you!

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(@fraz_2010)

Posted : 01/24/2018 7:27 am

Avoid dairy, gluten and refined sugars in your diet. Get good quality pro biotic and zinc supplements. I don't care what any health practitioner says, acne is 100% connected to gut and liver function. When these aren't operating to their full capacity, much of the toxins are eliminated through the skin instead.

Do this and I can guarantee you that you'll have better skin within 4 week than you've had for many years.

Also, if you have any scarring issues, apply vitamin e oil to your skin each and every night. It will take a few months, but with the acne gone, the marks will get a chance to fade away.

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