Endless POFibilities -- December 2000

Editorial: My POF Path
by Roxanne Russell

My reason for writing this article is because I have received so many emails. Emails from new pofers inquiring about POF and my experience with it. They also want to know the steps I took after learning about my POF. So I decided to write an article on what I learned about POF, about what I think women who are diagnosed with it should do. This is strictly my opinion, and my perspective of what I have learned over the years. This article is divided into steps.

First step:
Make sure you have gotten a correct diagnosis. (even expert researchers in the field of premature ovarian failure can find an explanation for the condition in only 5% of their patients. In 95% of the cases, no explanation will be found, but you don't want to miss out on finding what the cause is in your situation if you can help it. More research is needed to uncomver the causes of premature ovarian failure.) Some research involves the use of an ovarian biopsy. However, you should not have this done unless you are participating in an approved research protocol. When they did my biopsy, they found that my body's immune system had been attacking my ovaries, and the eggs that were in them (autoimmune POF). This is one cause of POF. About a month after that, I found out I waspregnant, but miscarried at 10 weeks. Doctors blame my miscarriage on a statistical first pregnancy, not on POF.

Second step:
Find a health care provider that will listen to you, one you feel comfortable with, and one who will work well with the various specialists that you may need to see. You need a caring health care provider that can see you as an entire person and work with you. This could be a women's health nurse practitioner working with a doctor, it could be a family practice physician, a gynecologist, an internist, or an endocrinologist.

Shortly after my miscarriage, my doctor told me he wasn't able to give me any insight on POF. So he referred me to a Research Hospital in Bethesda, Maryland called The National Institutes of Health. My doctor told me that NIH had been doing extensive research for many years on POF. I went, and my doctors at home and I have been coordinating my care with the NIH team ever since.

I have really become at peace with my disorder, and my loss, with the help of my local doctors, the NIH doctors, and their team of NIH researchers.

Here are some things I learned from the team at NIH:

1. Women with POF do sometimes spontaneously ovulate; but they have no way of telling when.

2. Women with POF have a higher risk of osteoporosis, (I had low bone density discovered at my first visit to NIH). Women with POF should ask their doctor about how to best keep their bones healthy.

3. Women with POF do need estrogen, or some form of HRT, to protect their bones, and to help with other issues.

My reason for telling all of this is because I want you to know how important it is to get a correct diagnosis, and get on some type of therapy soon. Especially with autoimmune POF, there could be other issues you will need to deal with. So now I am on a good program with HRT and medications, and I have gotten a better understanding of POF. The Doctors have been able to get my bone loss under control and were able to make me physically and emotionally feel better.

If you are interested in contacting the research team at the National Institutes of Health, call toll free at 1-800-206-0911.

To all new POFers, your diagnosis is going to be a learning experience for you. Research as much as you can, learn as much as you can about your body. Knowledge is power. The way I see it, I am in great hope that they will be able to restore our ovaries, and we will all be able to conceive.

Third and Final step:
Don't worry, get on a good program, stick to it, and have peace in knowing that if it is meant to be, it will. I hope I have helped at least one of you. My purpose was to share my story and inform you of the steps I took in my battle against POF. Thank you! --Roxanne

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