Seems like I am all about the personal posts this week. But this one has been a long time coming. Ever since I found out I had polycystic ovarian syndrome (PCOS) I’ve spent a lot of time researching and trying to read other’s experiences. It only seems fair now to share my own. Also, apparently 1 out of 10 women in the United States has PCOS so the odds are many of my readers also have PCOS and can relate.
This may be a long one with little to no pictures so grab a snack. Also, for those of you who aren’t familiar, PCOS is essentially a hormonal disorder in women due to elevated androgens. This results in a variety of symptoms such as excess hair, irregular periods, acne, thinning hair, weight gain/difficulty losing weight, darkening of skin, sleep apenea, etc. All can be summarized as:
In hindsight, there were a lot of symptoms. But I’ll start with what was most obvious at the time.
Months ago I started noticing acne around my jawline. Although I had occasional breakouts in the past, I’ve never had consistent acne in any particular spot. This wasn’t the tiny bumps that go away in a few days. It was painful, under the skin, here to stay forever type of acne. However, this all happened during an extremely busy time at work so I stupidly ignored it and thought it was stress or some sort of phase.
Lesson #1: If something weird starts happening with your health, it probably isn’t a phase. You know your body better than anyone else. Listen to your instinct.
After some time I started noticing a ton of other random symptoms. For instance, my husband told me I had been snoring (how cute), I kept gaining weight and I seemed to have really poor circulation around my knees. My hair also started thinning out.
At this stage I really started thinking perhaps something else was really going on. But, since I had been working extremely long hours at work, was eating very poorly and not working out I just assumed it was a lifestyle issue. I convinced myself that as soon as things slowed down at work everything would magically get better. Hint, it did not.
As if all that wasn’t enough, my body decided to really tell me something was wrong by taking the acne to another level. I had cystic acne all over my jawline & cheeks and even started breaking out on my forehead. The cystic acne was so painful that it literally hurt to touch my face while washing it.
Of course I ran to Sephora and spent a small fortune on all kinds of products. Face washes, toners, serums, spot treatment, creams – the works. Deep down I knew the cause probably wasn’t something I was applying, but I was desperate so I spent the money and tried all the items. Unfortunately, all the new products only seemed to aggravate the situation. I also decided to research vitamin supplements to help my skin and was taking over 7 supplements everyday.
After a few more weeks of no improvement with all the new products, I knew it was time to head to the doctor.
Initially we thought the cause may be a thyroid problem. But after we ruled that out I started doing my own research. As soon as I read about PCOS, I knew there was a high likelihood that I had it. So, the next time I went to the doctor I brought up PCOS and I specifically went through my own symptopms. Only after that did the doctor run the tests to confirm the diagnosis. In my case, given the acne & hairloss the only missing pieces were an ultrasound to check for cysts and blood tests to check insulin and glucose levels.
As soon as I they did the ultra sound I knew. There were 7 lovely little cysts.
I’d like to take this opportunity to name those original 7 cysts: Doc, Grumpy, Happy, Sleepy, Bashful, Sneezy & Dopey 🙂
Generally, you only need to have 2 of the symptoms to be diagnosed. But I seemed to have all of them.
Lesson #2: Take charge of your own health. Be your own advocate. I am convinced that if I hadn’t brought up the PCOS issue, the doctors wouldn’t have gone that route. They were more eager to get me on other medications to deal with the symptoms than to get to the root of the issue. I know googling symptoms can be scary & controversial. But again, no one knows your body as well as you. And no one will care about your own health more than you. So if you don’t feel like you are being heard, speak up! and get another doctor.
At this point in the process I had a minor meltdown. But after spending some more time with a few different doctors, doing my own research and just letting it sink in I felt better.
I felt so relieved to know what the problem was. If you have ever suffered from acne you may know that people can be mean. I can’t tell you how many times a stranger or a well-meaning acquaintance gave advice or product recommendations as if the issue could be solved with a freaking face wash. It was infuriating.
So getting confirmation that the acne was the result of a hormonal issue was a relief.
What is still a little troubling is that there is no true known cause for PCOS. The issue is most likely insulin resistance (your body does not process insulin efficiently causing excess insuling to hang out in your body) but it isn’t an exact science. In my case for instance, my insulin and glucose levels have always been normal.
After all the appointments and research I was finally put on Metformin (helps control blood sugar levels) and prescribed a topical retinol and Aczone gel for my skin. I also significantly modified my diet and started working out regularly.
Lesson #3: Again, do your research. I ended up seeing 4 different doctors through this ordeal and most of them wanted to get me on birth control, androgen blockers, Accutane, Metformin, etc. ost of these medications have serious and long term side effects. If I had not been informed before hand I probably would have said yes to all of them. My philosophy is that I want to help my body heal itself. I don’t want to get on 300 medications with horrible side effects to deal with the symptoms.
After about 3 months of the Metformin & lifestyle change my acne still hadn’t improved. I did lose some weight & thankfully I stopped snoring. But every day that went by I grew more and more frustrated with my skin.
I think the breaking point was when I realized that the scarring left behind from each breakout wasn’t just hyperpigmentation. There were areas of my face that started getting indentations from where a breakout had been. Ultimately, the inflammation from acne (especially the type the persists for weeks) can cause the collagen in your skin to collapse causing pits in your skin.
The hyperpigmentation I could live with. You can always cover that with makeup. But actual indentations?
In my desperation I started looking for alternative treatments for PCOS and acne. I decided that it couldn’t hurt to go to an alternative medicine specialist. Again… I was desperate. If you would have told me a year ago that I would even consider this I would have laughed in your face.
So, I found someone on Yelp and went on my merry way. During my appointment we spent at least 30 min talking about my diet, my sleep patterns, my stress levels, etc. Do you know how many of the doctors I went to asked me about what I ate? ZERO. Not one of them asked me my about diet or exercise regime. All any of them did was try to get me on all kinds of medications.
Amy (The Doctor in Oriental Medicine) spent almost the entire appointment on all these topics. She gave me so many recommendations on my diet and provided comprehensive information on how different foods affect glucose levels. After our conversation and review of various blood tests she also recommended very specific herbal supplements. One supports hormonal balance and the other helps my liver and gall bladder. Her theory on my skin was that after years of taking birth control, all the synthetic estrogen had accumulated in my liver preventing it from functioning properly. This can ultimately lead to your skin acting as the “back-up” purification system for your body.
Lastly, she wanted to do a session of acupuncture on me.
I had never done acupuncture. In fact, I had barely read about it. But I remind you again, I was desperate so I said yes.
Amy put needles in various points on my legs, arms and abdomen. She told me she was targeting points to stimulate my liver, gall bladder function and my skin. I’m not terribly afraid of needles, but I am not a big fan either. So I closed my eyes through the entire application process.
Turns out I was overreacting. You can barely feel each needle going in. It’s only a small prick that is tender for two seconds and then you can’t feel it. Once the needles were all in she left for about 20 min while I relaxed. When she came back in, she moved the needles about a milimeter and then left me another 20 min.
I left the appointment feeling like a cloud had been lifted. After going to so many doctors, I never felt like any of them were truly invested in whether I got better or not. I also never felt like any of them were trying to get to the root cause of the issue. It seemed like all they wanted was to get me on as many medications as possible. My appointment with Amy was completely different. I figured even if my acne didn’t improve immediately, I wanted to give this a chance.
Lesson #4: Don’t be afraid to search for alternatives. Again, if you would have told me a year ago I would be seeking alternative medicine or getting acupuncture I would have bet my money it would never happen. Yet here I am.
About 3 days after my appointment my skin started getting better. I couldn’t even believe it.
In fact, I started thinking back about everything I did around the time of my appointment and considered whether it was something I ate…
But then, for about 10 days after my appointment my skin got slowly better. Two weeks later I went back for another session of acupuncture and my skin continued to improve. To the point where I only had a few active breakouts at a time (instead of 25).
Because I am so cynical I thought maybe it was the medication that finally started working. So I skipped an appointment and went almost 4 weeks without acupuncture. I started breaking out again. Naturally, I went to my appointment and again 3 days later my skin was so much better.
Although my skin isn’t completely clear, it is now almost back normal. I am still taking my medication (although I don’t really think its doing anything), my supplements and going to acupuncture every 2-3 weeks.
I still have hyperpigmentation and some indentations in my skin. But everything is slowly starting to fade. I’ve also been getting regular facials to help my skin regenerate.
About 8 months after my original diagnosis I am free of almost all my symptoms.
If you are still reading at this point, good for you. And thank you! I hope this helps any of you who also suffer from PCOS, or from any other disorder. I hope my journey can inspire you to take charge of your health and perhaps consider other alternatives. If any of you have any questions, comments or just want to talk, feel free to leave a comment or email me. I would love to hear about your experiences or what has worked for you.