Endless POFibilities -- June 1999

POF Questionnaire Comments

The March newsletter included a POF questionnaire. 376 were mailed. 4 were returned as "address unknown." We’ve received 69 or 18.5%. We’ll publish the results in a future newsletter. Below are some of the comments we received.

From PA

I was very surprised about the lack of knowledge that the general OB/GYN has about this condition. From my reading it is not that rare. However, my primary care gynecologist was not aware of proper HRT dosage for my age. He was not aware of any possible genetic problems and only suggested a work-up after speaking to a reproductive endocrinologist. He was not aware of any associated medical conditions. I see a reproductive endocrinologist, not for infertility treatment, but for proper dosage of HRT and my primary doctor does an excellent job of evaluating me for associated medical conditions. Diagnosis was delayed because my gynecologist ignored my symptoms of hot flashes and focused on my missed periods. He was convinced I was pregnant. He did 2 or 3 pregnancy tests. This is inexcusable. Doctors should be more informed. He only ordered an FSH level when I told him that I was sure it was menopause.

From CA

Besides having to deal with nurses and doctors (some that were good while others were not so good) the reaction of other medical professionals was frustrating. When I would pick up HRT prescriptions they would question it thinking it was a mistake. It seems I would have to explain my story to every pharmacist, ultrasound technician, etc. Then there were other people who said it was all stress, doctors are always wrong. It seems no one had ever heard of POF and everyone had a foolproof way to get pregnant.

From TN

I went to the doctor, having missed a period, hoping for a positive pregnancy test, but knowing in my heart and mind there was something else going on. I had been having night sweats for months, mood swings, sleep problems – all the classic symptoms. I asked the doctor if I could be menopausal. He said NO, but I insisted on an FSH test. I went to the doctors’ office in a few days to get the results but my doctor was off so another doctor gave me the results, as if it were no big deal. I think I was in shock. I don’t remember much. I felt ashamed. This was not supposed to happen to me. My doctor called me the next day and wanted to see me and refer me to a Reproductive Endocrinologist. It seemed to me that when I saw my doctor he found the office visit to be a very casual one. I will never forget his comment: "Good thing you had the two kids you had!" It seemed so cold. I wanted more children! This is not what I wanted to hear! I have since changed doctors, but I don’t know if I’m better off. I often wonder if there are any doctors that can relate to the feelings of a woman with POF. Now I am fighting the battle of HRT. My doctor does not approve of natural herbs and vitamins. She is a believer in pills. I have stood my ground and am presently using an estrogen patch with micronized progesterone.

From Colorado

I think the world of female fertility is horrible. There are no good answers for anything! No one is willing to try anything unless they’ve had proven success in the past. Donor egg is a huge dilemma that doctors seem to take lightly because they think women automatically "need" to have children. I resent how light-heartedly it was proposed to me in the same conversation that my eggs could never work (<5% chance).

Why isn’t there more education available that women at age 32 and even younger can’t have children because their ovaries can stop working?

From MA

I would be interest in obtaining data about any other individuals diagnosed as early as I was (16 years old). I never experienced a menstrual cycle without HRT. This has been a part of my life as long as I can remember but certainly has not made dealing with the loss of not bearing a child any easier.

Please share information gathered. I am concerned about health ramifications particularly osteoporosis and heart disease of this disease?, condition?

What would be the risks if one chose to stop HRT? I am 36 years old and do not relish a lifetime of HRT and its side effects. I feel like I have the body of a 50-year-old!

Kathleen in Ohio also completed a questionnaire and was willing to write more about being a "long term survivor." This is an email correspondence from her:

At age 51, I certainly would be delighted to speak as a "long term survivor" of POF, if that is, indeed, what I am. To have been diagnosed at age 29 (more or less) and to have gone from a traditional mom-at-home (college graduate, decision by choice) with one child, adopting a second, to a single (divorced) mother forced to go to work, married a second time, and transgressing a career that has gone from secretary to talk-show producer to legal writer to United Way director to county commissioner.

Well, I guess I have a lot to say. Today I am more energetic, happier, more positive now than ever before. I do step aerobics, walk 4 miles a day and study nutrition. But, boy did I feel isolated 20+ years ago when the doctor told me of my diagnosis and that there was "nobody" to whom I could talk who had this condition because it was "extremely rare."

Incidentally, you are the first person to whom I have ever directly communicated about this subject. My life has progressed well on my own, but it is so free-ing to finally talk with someone who understands and relates to POF!!!!! The condition has not dominated my life, but the reality of it has never been far from my mind. I have no aspirations to investigate further the conditions that gave rise to my own POF, but if I can help in research in some way, I'd be delighted.

Also, if I could help or reassure someone I would be be delighted. Kathleen