Polycystic Ovarian Syndrome (PCOS) Support Group

Polycythemia is a condition in which there is a net increase in the total circulating erythrocyte (red blood cell) mass of the body. Primary polycythemia occurs when excess erythrocytes are produced as a result of a proliferative abnormality of the bone marrow. Secondary polycythemia is caused by increases of erythropoietin that result in an increased production of erythrocytes.

0 Online

Ammenorrhea (No Periods)

I was just wondering how many of us were completely void of periods before receiving our diagnosis?

I had one natural period at 16 and that was it until SEVERAL years after I went on Metformin 500mg BID (twice a day). There were 'signs' now looking back that I had this. On a 2 week trip (the week Elvis died.. dating myself), I came home and my Father Exclaimed --KATHLEEN! I had gained 20lbs (couldn't button my jeans) in 2 weeks at the age of 12. My Mother got concerned and made me go to a Gyne when I was 18, and they wanted to put me on BCP to start, and I didn't want to do that. In my early 20's I did finally receive my Diagnosis of PCOS, and it wasn't until about 5 years ago that I started Metformin. I guess according to what you all are taking, I am on a low dose.. that's all she had me on and never adjusted it higher. I will speak to her this year at my Annual.

Anyway, I want to know how many were totally without periods, and also if you were without, and then later started (I started OCCASIONALLY having periods at like 38?!).. if you guys felt like me.. hormonal, out of place (because I should be able to handle this - women have been doing this since early teens etc..), cramps that put you in bed (could be Fibromyalgia complicated) etc.. I just feel out of sorts.. when I do have one that is still not 'regular' enough to predict and I feel stupid for not knowing I'm PMS'ing!

Sorry for the ramble, I am just wondering if there are those out there like me. I have only met ONE other woman in my lifetime that has not had periods until recently, she is also in her 30's and we both felt very similar. Thanks in advance for your feedback on this :) I appreciate it!

God Bless!




P.S. I am concerned about the Metformin as well. My Cousin Diane (NatG's Mom) just passed away and she ended up on dialysis and she blamed Metformin in part anyway, for ripping up her kidney's.. so I am worried about increasing that dosage.

Hey Kathy,
I can't believe it took your doctors so long to discover you have PCOS! If I understood correctly, you did not get your period naturally for 15 years?!?!

It started for me in May 2005. That was my last "normal" period. Then, after that, I don't know what happened but I would not get my period. My doctor just kept giving me prescriptions of Provera. I knew this couldn't be normal, but he said I had to make sure I got my period at least every 3 months to prevent cancer. So, with the help of Provera I was getting my period.
I have been doing my research on Metformin and have found that it helps people with PCOS to regulate our insulin levels. I can understand your concern about kidney damage, but I think once PCOS is under control (regular exercise and dieting), you can be put off of Metformin. If you are still concerned, I would try dieting and excersing alone to see if that can help and avoid using Metformin.
Sorry I can't relate on ammenorrhea for such an extensive amount of time, but I hope I have helped! ;o)

I understand how you feel. The stres and the strain that it puts on you. I also did not have periods. I was diagnoised when I was 15yrs old. At that time I did have periods but at 18yrs old they just decreased and then stopped. Last year I started provera so that i would have a period every 3months but other than that I hardly have one and when I do its like I want to curl up in a small ball and cry because sometimes the pain is all I can stand. Its not natural and i'm not sure how an woman back in the old days handled it.

I am so hormonal all the time and it's hard to figure out if you are PMSing or not. I thought for a long time that I was crazy or bipolar.

Hi everyone, thanks for the replies!

Josephine, they knew in my early 20's what it was, but they just wanted me on BCP's or Provera, and the BCP's were unlucky in my family, as both my Mom and Sis got preggars on em, so I just didn't want to go there. Provera made me err Hell on feet! I couldn't stand myself or even had a friend say, don't ever call me again when you are on that stuff LOL! How terrible! They just didn't start treatment with the Metformin until I was 36.. and while I OCCASIONALLY had a medically induced one, I just couldn't do provera. I really do wonder if I could ever 'get off' the metformin and do some of this naturally. That's my goal, get MED FREE .. and only do natural from now on.. these drugs are just too toxic, and I'm on far too many for my age.

Melody: It sure sounds like you do! Thanks for sharing your story with me too. I personally think PCOS is a direct result of our bodies being allergic to some of our processed foods or something. Nothing scientific, just hunches. I haven't figured out where to start on the natural things, as I have many issues -- Fibromyalgia, Hypothyroid, Heart Disease, but as soon as I figure it out, I'll let ya all know how I worked it out!

Cnickel, now you sound like a GF that I have.. the only one I know that didn't have periods. They have had her on some stuff that has made her feel a bit crazy..so just listening to you, it made me think of both her and myself. Thanks for sharing guys :) Be well!

I haven't ever gotten regular periods.. I started early, then just stopped. I went 6 years w/o one. Then finally went to a gyn. I still don't have them regularly... but hopefully that will change soon! I may sound excited... but I'm really not. I feel horrible when I get them. They are so heavy and painful!

I didn't get my period for the first time till I was 16.
I had them pretty regularly till around the time my dad was diagnosed with cancer. I was 18. I figured it was stress. But it didn't come back for YEARS. But during that time our family lost many family members, and close friends...

When it did come back, another good friend was diagnosed with a terminal illness. I had it one month, then it was gone again.

When I first became sexually active (at 30... yup I know late.) I went to a gyn. (I had been to one earlier, and had a bad experience... so I really wasn't interested in going again... Immature I know.)

At that time I was tested for thyroid, and had an inernal sonaram done to look at my varies. The Doc said I did not have PCOS.
I was put on the pill to kick start your period... can't remember the name. After that period finished I started BCP. The whole time I was on the pill, about 2 years, I had regular periods.

I have been off the BCP since April of 2003. Since then I have had maybe 2 or 3 periods.

The last one was when I was first put on Metaformin for my Diabetes II last January when I was first diagnosed.

Since then NOTHING...
Once I get insurance again... very soon, I will be heading to a Doc.

my pediatritian thought that i was just growing and getting used to my body when i was younger based on my mom's history of irregular periods. I'd bleed probly once every three or four months and then finaly they stopped all togeather. She gave me progesterone to bring one on but after that it stopped again. It wasn't until 6 or 8 months later my mom finally got really worried and took me to a specialist who diagnosed me. I don't remember my last period without any medication. They've been from BC for the past couple months...
Posts You May Be Interested In:
  • nana012

    I have cancer

    I had to have a lung biopsy, and I have cancer. A very rare form that doesn't have any standard treatment. There just isn't a lot of case history for this. It is epithelioid hemangio endothelioma. The cancer support group doesn't talk every day. I can understand why. I'm waiting for the oncologist to call back for an appointment, and will hear in the next few days. Who knew. Ha!
  • ainteasybeineazy

    It's my Birthday and no one cares

    Today is my 25th birthday, to my somewhat lack of surprise I can see already no one really seems to care. I've always been the kinda person to make sure that everyone I Care about feels appreciated and knew somebody had their back. I can count 4 times this year when I Went out of my way to make sure a "friend" felt good on their birthday, especially if they got left hanging. Its early in the...