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Readers Respond: What Symptoms Led to Your Diagnosis of PCOS?

Responses: 35

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Updated April 29, 2009

Summer of '09

I was diagnosed with PCOS this past summer, I am 14 years of age and am already aware that I probably won't be able to have children. I am currently taking Metformin. I do not get my period at all yet. I'm glad to know there are others out there with this problem. I just wish my friends could understand me more clearly but they just can't relate to me. If there's anyone here who is close to my age with this,I understand what you're going through and just know that you're not alone. And also, there are other ways to have children, so you can still have a family if that's what you want to do. Don't think your life is over because of this. Because you will not die...but it is a challenge. But I believe this will make me stronger and can do the same for all of you woman out there with the same struggle. Just remember to never give up and stay strong. :)
—Guest Alison.

wieght gain,no periods

I got married in dec 2008. I have always weighed between 70 to 72 kg. In Feb 2009 I realized I had moved up to 77kg. I had thought I was just being comfortable. In March, no periods and thought I was pregnant but found out I was not. I grew worried and also grew much darker. No periods in May and August. I am now 91kg! Really upsetting, but I am taking active steps to lose the weight. The docs found cysts on both ovaries.
—idiaeno

Irregular

I have always had irregular cycles-could go 6 or 8 months w/o a period. Doctors told me many women would be happy not to cycle and not to worry about it and my thyroid level was low but not too low. For over 15 years I have had depression, elevated testosterone, and low estrogen levels, a few dark hairs, some skin tags, terrible mood swings, head and back aches, low pulse and blood pressure, low cholesterol 9good and bad), severe fatigue, uncontrollable weight gain, sometimes I would think and speak slow for no apparent reason, vaginal pains, infertility, and a miscarriage. The last 2 years I started having severe pelvic pain. An ER doctor said I had a severe infection. When the pain return two times my doctor said they didn't think it was an infection. My gynecologist who I have seen for years then diagnosed me with PCOS and Hypothyroidism. All these years I believed something more was wrong but no doctor thought more about me.
—Guest Amanda

Infertility

My diagnosis came from a Reproductive Endocrinologist. I was having trouble getting pregnant and after a 40 day wait for my cycle with bleeding in between cycles. He asked a series of seemingly unrelated questions that in the previous three years were now a "yes" (Do you struggle with your weight? Do you have acne issues? Are your cycles lengthly and painful? Do you have high cholesterol? Do you have bouts of depression?). The questions, as I mentioned, seemed so unrelated and yet they were all pieces of the big puzzle. I had a few ultrasounds done, bloodwork and it was determined to be PCOS. Now it is treated with Metformin, a diet developed by the Reproductive Dr and a committment to good health. Through many treatments, a successful IVF was achieved and my son turns two in December!
—Guest Kristina

pcos

All my life, I had normal periods. When I got married, I got pregnant with no problems,but I had a miscarriage. I was 19 when I got pregnant the second time and I miscarried again. My doctor told me it could be PCOS. She told what the symptoms were. I was scared. For about 2 months, I didn't have a period, it was strange. I also gained weight, had black patches behind my neck. I had an ultrasound which said my right ovary is polycystic. I went to see my doctor he put me on Provera and Clomid for six months. It has been 6 years now and I am sill using Provera to regulate my cycle. I am still trying to get pregnant and am losing hope.
—Guest kareema

Having to Live with Pcos

I have just found out that I have PCOS. After being on the pill for 12 years, I was not aware of the problem until trying to get pregnant. I had an abortion when I was 17 so I thought that I would have no problems getting pregnant. After stopping the pill, I have had long waits between cycles and the pain before getting my period is horrible. Since I have stopped taking the pill, I have gained 10 kg so now I am starting the fight to change lifestyle totally and fight this! This will not beat me!!!
—Guest Rachel

PCOS

My periods were irregular since I was 14. There were times I would go without it for 10 months. My gynecologist assured me that this will go away with time. I was too skinny (so no obesety or diabetes problems), no excessive hair or any other symptoms... the doctors said atypical pcos. My hormones were terrible - low progesterone, low estrogen, high testosterone and microcystic ovaries. I didn't get put on any medication as my doctor believes they might make things worse for the time being. Lately, I have gotten my period more often, like every 3 to 4 months. Sometimes every 2, it depends . So my body did make some improvements. I will be 30 this year and I am getting worried thinking of getting pregnant (when I find the right person). It scares me ...knowing it will be hard.
—Guest m

misdiagnosis

I began in my teens getting horribly painful cysts and my periods became further and further apart. Finally 75+ days became the norm and even taking progesterone wouldn't bring on a period. I also had excessive hair growth and acne. I tried for 2 years to conceive unsuccessfully and was told there was a chance of PCOS. I was put on birth control to regulate my periods and after deciding to try again to conceive I got pregnant without ever having a period immediately after stopping birth control. As soon as my daughter was born we started trying again and this time couldn't get pregnant for 4 years. I was given fertility meds and had 3 miscarriages in a row. After a lot of persistence, I had lab work done to discover I had PCOS. Since I had gestational diabetes, I was given Glucophage, lost 28 lbs and am currently pregnant and due in October! There is hope after PCOS diagnosis but you must be persistent with your doctor.
—Guest Missy

Lack Of Periods

I noticed from the time I was 16 that my periods were tapering off. My doctor told me not to worry. I've been obese all my life so she just chalked it up to weight fluctuation. She never gave PCOS a thought. Then I noticed chin hair, excessive dandruff, dark patchy skin, and finally in June 2008 I had the period from hell. It was my second period of the year. I bled for 14 days straight and I was gushing blood with thick clots. I couldn't walk or eat and I was scared to death. I had no insurance so when it stopped I didn't give it another thought. Finally I went on BC in October 2008, but the mood swings made me stop. On May 29, 2009 I went to the gyn because I haven't had a period since November 2008. She looked at me after 20 minutes of going over my symptoms and said, "you have PCOS." I'm still very sad about it, but I know if I continue my exercise regimen that everything will be ok. I just hope to one day have children.
—Guest Martina

PCOS

I have irregular periods that are 6 months apart, acne, excessive hair growth, hair on my chin, skin tags, weight gain, and infertility with some dark patches on my neck. It's horrible!
—Guest alicia nichols

Overweight

I am overweight, and my periods stopped. I also get migraines. When I went to a endocrinologist about my weight (because I was eating well and exercising and still gaining weight) they did some tests and told me that I had PCOS.
—Guest Tracy

My Experience

Hi. My symptoms were: no period for quite sometime, skin patches, bad skin and oily hair. I am finally seeing a specialist next week. My GP's only suggestion was for me to use the contraception pill. However, I had been using that for 10 years and had decided to have a break which lead me to discover my symptoms. I have been back on the pill for 1 year but hope to have some better suggestions from the specialist next week.
—Guest Kim

Didn't Know

For years I've had irregular periods. Ive also had very intense pain. I had to go to the ER before I was diagnosed. I saw multiple doctors who all gave different treatments. Until finally, they said I need surgery, which helped for a few years. But now my other ovary is giving me trouble. So we shall see what happens from here. I remain faithful and hopeful.
—Guest Monica

Infertility workup

I had no idea that I had PCOS until my husband and I were having difficulty getting pregnant. The doctor took one look at my ovaries and said I had PCOS - I was stunned! I didn't know anything about it (and he could have done a much better job of educating me on the disease). My history is pretty suggestive - difficulties with my menstrual cycles from when I was a young teen, cystic acne, obesity, depression, irregular period, high triglycerides. I never tracked my periods because they more or less came every month, but once I tried to get pregnant I found they were 40 or more days apart. My testing never showed insulin resistance but my testosterone is slightly high and I also had high prolactin. I would never have put all of the pieces together if I didn't need the infertility workup.
—Guest Anne W.

infertility

My diagnosis came from infertility and repeated miscarriages. After two miscarriages, and a year of trying, my doctor tested me. However, there were symptoms always lurking, which I just never noticed, like irregular cycles and acne that never totally cleared up after puberty. Looking back, it's easy to say, "Oh, I obviously had PCOS." But until the infertility and miscarriages, no one had mentioned it.
—RachelGurevich

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