I’m new to the site and thank you so much for all your hard work in creating and maintaining this site. It’s been incredibly valuable to me and I’m sure to everyone affected by PCOS.
Also, I’m sorry I missed your appearance on Oprah – I would’ve loved to have seen it.
My biggest issue with PCOS is what someone else said in the previous thread – the doctor diagnosing you and then giving you no information because they “just don’t know enough about it.” It’s incredibly frustrating. How can so many people be afflicted with this disease and there be so little known?
Here’s my story.
I hit puberty at age 10, in 1976. Because it was the year of the bicenntenial, we had our regular school picture taken that fall and then we had another special school picture taken near the end of the year. The contrast in those pictures is unbelievable. I had a thin, oval face for the first picture. The second picture shows a chubby, very round looking face.
The minute I hit puberty I got what one boyfriend I had later on called “the woman pouch” – my lower abdomen was no longer flat and it continues to be the strongest point of resistance when I do lose weight. My induction into puberty was the beginning of a life that has featured constant criticism and ridicule. My mother had her own issues, “fatism” being one of them. She despised people who were fat and I was treated with very little regard because of my weight and constantly reminded that I was fat.
I got my first period at age 14 and didn’t get another one until I went to the gynecologist and he induced it at age 17. I continued to be irregular until I began taking birth control pills.
Apparently this isn’t the case with everyone who has PCOS, but I happen to have a very bad reaction to estrogen – whether it’s my own or it’s supplemented via BCP. I only learned this after I got off the pill a few years ago. From the time I began taking BCP until the time I got off of them a few years ago (17-32), I suffered horrible mood swings, debilitating depression, and survived a very serious suicide attempt.
It wasn’t until I quit taking the pill that I was able to see this link. I still suffer the horrible mood swings and depression, but it’s basically limited to the time that I’m premenstrual. It seems to get worse the older I get.
Though my weight continues to be a problem, I have a lot of other symptoms of PCOS as well. My hair began thinning in college and continues to come out in larger than average amounts. At that time I also began growing dark hairs under my chin that I have to continually pluck (though I feel fortunate that it’s only a few).
At one point I had an ultrasound done by a gynecologist (though I can’t remember what prompted it) and I was told that I had pearl-like cysts all over my ovaries – but that was all I was told – no one mentioned PCOS and I wasn’t aware of its existence to be able to ask about it.
A few years ago I began having really awful cysts on my inner thighs. My dermatologist diagnosed it as hidradenitis supurtiva and I was told that it would be best if I waxed or had electrolysis done instead of shaving that area. I’ve had to have two removed surgically thus far. Again, no mention of PCOS as a possibile cause even though this is a symptom.
I finally realized that I had a hormone problem once I got off the BCP and starting attempting to get answers from doctors. Another significant factor in prompting me to believe I had a hormone problem, in addition to my experience with BCP, was when I began taking phentermine (rx speed) for weight loss.
Although I didn’t really lose a substantial amount of weight at first, my periods became regular almost immediately, I no longer felt exhausted all the time, my metabolism acted like a “normal” person’s in that I didn’t gain 5 lbs just from eating a cheeseburger at McDonald’s, etc… I went to one endocrinologist who mentioned PCOS to me – I told him that I did have an ultrasound done and that I’d had pearl-like cysts on my ovaries.
He said that those with the “syndrome” are rare and just put me on a diet – he didn’t think I had the syndrome. I went to another endocrinologist who thought I might have Cushing’s – but he was also not aggressive enough in pursuing testing. So I went to yet another endocrinologist who finally pursued testing and after several tests including FSH and LH levels, androgen levels, and a glucose tolerance test – I was diagnosed with PCOS. She prescribed me Glucophage but again, couldn’t explain what PCOS was, what caused it, or how it works. I couldn’t tolerate the Glucophage because of it’s side-effects (diarrhea) and have not continued taking it.
Another interesting thing, I had another ultrasound done of my ovaries because of some pain and it revealed an endometrial cyst inside my ovary, in addition to the pearl-like cysts on top of my ovaries. After taking the glucopahge for the short amount of time I did, my gynecologist performed a follow-up to the ultrasound that revealed the endometrial cyst, and much to my surprise those pearl-like cysts on my ovaries were no longer there.
I have been trying to manage my PCOS through diet and exercise. That’s really all I’ve done. I also began taking phentermine again which has assisted me in this process, but I realize that it’s not an answer for the long-term. I’m 36 and single so the odds that I’ll ever try to conceive are diminishing rapidly as I approach 40. As far as the mood swings during PMS, I am hesitant to take a psychotropic drug for something that is hormone-related, which is the common course of action in treating that particular symptom. I’m looking forward to the day when all hormone-disorders are treated by balancing hormone levels.
I think my story provides a good example of the emotional problems one suffers as a result of PCOS. The ridicule I experienced because of my weight, coupled with my mood reactions to estrogen, were things that have had a very large impact on my life and continue to affect me in certain ways.
Doctors from all specialty areas, with special attention to dermatology, gynecology, endocrinology, and psychiatry, really need to be educated on the existence of PCOS, how it works, and the various manifestations of the disease. If any one of those doctors I saw decided to investigate the cause of the problem instead of treating one particular problem without looking at the big picture, years of my life spent wasted on useless therapies would have been salvaged. Psychiatry in particular needs to look into physical causes for mood disorders before assigning it as a “mental” problem. To not investigate the potential causes of any symptom or problem, in my opinion, is highly irresponsible.
I tried to get a book on PCOS from Barnes & Noble after I was first diagnosed – they didn’t have one book in stock on the subject and only had one book in their total inventory on it which had to be special ordered – “PCOS – A Woman’s Guide to Dealing with Polycystic Ovary Syndrome” by Collette Harris with Dr. Adam Carey.
I wish you luck with compiling data for the PCOS show. Whether you are interested in using my story or not, if you’d like me to provide you with a copy of the pictures from my 4th grade year, pre-pubesent and pubesent, please let me know and I’ll be happy to have scanned or duplicated.
Also, I have a question for anyone reading this – does anyone else suffer from kidney stones? I’m wondering if my propensity for making kidney stones is related to my PCOS. I’ve just had my second surgery for a kidney stone, and it’s been about my 11th occurrence.
Thank you again for giving us this forum to share stories and learn more about PCOS.
Want to connect with me? My name is DebbieinSC on the SoulCysters Message Board.