By: Bobbi
Email: bobbi@ev1.net
Website: http://users.ev1.net/~bobbi
Favorite1: http://
Favorite2: http://
Date: 22 Jun 2000
Time: 12:23:35
Remote Name: cache1.ev1.net
(Cut and pasted from my web site per Kat's request. Please forgive the lengthy explanations of the things that I'm sure most people reading here already know. My story was geared toward those who may not have been diagnosed.)
Summer '99 - I have recently been diagnosed with this syndrome, better known as PCOS, and I wanted to share some information for anyone who may be going undiagnosed. If one person reads the symptoms here and thinks, "That sounds like me," and seeks medical attention, then posting this information will all be worthwhile.
First, I'd like to share my own experience, personal and lengthy as it may be. Since puberty, I've had irregular, almost non-existant periods. Like many young women, I was put on the pill to regulate them. I stayed on them until I was married to my first husband and we wanted to have a child. When I went off the pill, nothing happened. I had no cycle at all. My doctor tried stimulating ovulation with progesterone (Provera). Nothing happened. He then put me on Clomiphene (Clomid) and still nothing was happening. After about a year on Clomid, my doctor was ready to give up on that idea and schedule me for laparoscopic surgery to find the problem. Miraculously, I conceived that month and now I have a wonderful daughter. The process of trying to conceive took about 2 years. Anyone who has infertility problems knows what hell it is wondering if you'll ever have a child. I feel I was blessed.
Pregnancy and breastfeeding had me surging with the right amounts of female hormones apparently, because that's the only time of my life when I can remember feeling fantastic and womanly.
After my daughter stopped breastfeeding, I didn't begin cycling again. We didn't want anymore children at that time, so my doctor suggested using birth control just in case. I tried the depo-provera shot. BIG mistake! Most women experience scanty periods or none at all, but not me. I ended up at the hospital thinking I was surely going to bleed to death. I bled for over a month. I went back on the pill shortly after this time.
My marriage ended when my daughter was 3. I remarried 2 years later. I stopped taking the pill shortly after with the mindset that if I got pregnant, we'd be happy about it so why bother with birth control. My cycles did not begin, but some other symptoms that I'd seen little bits of evidence of from time to time began taking over my life. These included mood swings, weight gain, mild depression, growth of hair on my chin, and judging from my shower drain, some hair loss from my head. (Luckily I have TONS of hair, so this hasn't been a problem.)
I had experienced these symptoms at different times in my life, and others such as adult acne, that I complained to my ob/gyn about. He never took it seriously or tried to actually diagnose WHY all these things were happening. I decided it was time to do something about it, so I went to my family doctor and explained my long gynecological history. They ordered a few blood tests and discovered some abnormalities including elevated testosterone. That alone is a big indicator of PCOS. I had a pelvic ultrasound, and though no cysts were seen, I was referred to an endocrinologist. She diagnosed me as definitely having PCOS and was able to explain so much to me.
It's not curable. It is related to obesity, diabetes, hirsutism, increased risk of heart attack and stroke, not to mention infertility. Women with this disorder often have family histories that include adult onset diabetes. (My grandfather and great-grandmother both did.) Women with this disorder often have problems in the area of insulin resistance. Regular low-fat, high carbohydrate diets DO NOT tend to work for us. Carbohydrates add to the problem of insulin resistance, creating more body fat, and the body fat creates more testosterone.
There is no cure, but there are treatments to increase fertility and to help lower testosterone levels. The best advice for someone with this syndrome is to seek medical attention from a reproductive endocrinologist. There are support groups in some cities and more treatments options are becoming available.
If any of these symptoms sound familiar to you, I urge you to follow some of the links below and INSIST that your doctor find out whether this is happening to you. I printed out information from some of the links below and took it to my doctor. Many of them don't know much about it or don't know the most recent ways to treat it, so I knew it was up to me to take charge of my own health. I urge other women to do the same! I have only recently started treatment which includes a different kind of birth control pill (Zovia) and a medication to lower testosterone called Aldactone (Spironolactone). It has been less than a month so I can't say I'm seeing results yet, but I'll post updates periodically. I can say that just knowing what is wrong with me...that it's not in my mind...has helped me tremendously. This treatment does not help with infertility obviously, so my course of treatment may be changing soon as we are thinking of trying to conceive.
Update: 6/22/2000 - It has been about a year since I created this page, so I figured it was time for an update. Unfortunately, my employers once again decided to drop my health insurance HMO and offer a different one. What this means is that the fantastic doctor I was seeing is no longer on my plan. At the time I started this page, I had just started taking Aldactone (Spironolactone). I only took it for a short time because of my insurance change, so I have to report that I didn't see any results.
I do, however have an appointment in about 4 weeks with a reproductive endocrinologist who is a member of my new HMO, and after speaking with them, I assume they will be trying the Aldactone again. One of the preferred outcomes of that medication is to slow down the unwanted hair growth that so many PCOSers suffer from.
I'm sure they have already labeled me as a pain in the neck, but I kept the doctor's office on the phone for a good twenty minutes asking questions about their methods and typical treatments, etc. to make sure they were going to treat me aggressively. I simply refuse to waste any more time with doctors who don't take this syndrome seriously.
Since I started this page, both my sister and one of my best friends have been diagnosed with PCOS. My sister had been trying to have a baby for a long time, but didn't have PCOS symptoms like mine, so I was surprised to find out that she was a fellow "cyster". She was diagnosed by her obstetrician when she became pregnant, who told her that while her case isn't too bad at this time, that's what was keeping her from conceiving. I'm happy to say that she was blessed with a beautiful baby girl just a few weeks ago.
My friend who was recently diagnosed had read this page and saw herself in the symptoms here. I wasn't aware of the similarity of our problems until then, but it was almost as if we'd led parallel lives as far as our health goes. I feel good that at least one person has sought medical attention as a result of this page. That same friend has been looking into a fairly new process, laser hair removal, for unwanted facial hair. I'm considering doing the same if the aldactone doesn't do enough to help me. It is an expensive procedure from what I have gathered. If anyone out there has tried this, I'd love to hear from you. I'm also considering trying to have another child. I'll try to be better about updating this page with my progress. Feel free to visit the other parts of my site, including my online journal.
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