Premature Ovarian Failure
Diagnosis: Premature Ovarian Failure
What Premature Ovarian Failure Means and Its Impact on Fertility
Premature Ovarian Failure (POF) is when ovarian function ceases before age 40. It has previously been referred to as premature menopause, and this cessation of function is not considered a natural, though premature, menopause because it is happening at such an early age. POF can occur as early as the teenage years, although the average age of onset is 27. POF may be caused by a number of factors, from autoimmune disease to surgical intervention; many times, the exact cause is undetermined. While POF is probably one of the least likely diagnoses of infertility, it is estimated that between 1-4% of the female population has POF. For whatever reason, the ovaries cease to function, whether that means a loss of eggs entirely, a dysfunction of the eggs or egg production, or as a result of surgical removal of one or both ovaries. With regard to infertility, a woman carries a statistically small chance (6-8%) that she may become pregnant using her own eggs, but there has been no definitive protocol or treatment to ensure who the 6-8% will be. A woman can be diagnosed with POF and not be able to utilize or conceive with her own eggs at all, but still be in fine health to carry a donor gamete pregnancy to term.
Diagnostic Process
POF can be a particularly tricky diagnosis to obtain, as many other factors can mask the actual problem. The first most obvious symptom of POF is a lack of periods (amenorrhea), as the ovaries are not ovulating and thus, not setting the menstrual cycle into motion. Women using birth control are not necessarily at an increased risk of POF; rather, it is more difficult for women on birth control to know there are any issues with their ovarian function since the birth control replaces and simulates naturally occurring ovarian hormones. Typically, a need for diagnostics occurs when a woman ceases birth control only to find that her periods are not returning. Other symptoms may include those found with naturally occurring menopause later in life: hot flashes, night sweats, insomnia, and/or vaginal dryness. The biggest challenge many women face in trying to obtain a diagnosis is being told that their symptoms are stress-related and may require persistent, informed advocacy on the part of the patient.
Blood work is often the first step, specifically measuring the following hormonal levels: estradiol (estrogen), FSH (follicle stimulating hormone), LH (lutenizing hormone). (A thyroid function workup may also be performed at the same time, depending on your prior thyroid function history.) Very high FSH values (above above 40 mlU/ml) usually indicate POF; most doctors will perform a second round testing these same hormones in one month to confirm that the initial tests were not a fluke. If FSH values remain the same or higher, a diagnosis of POF is usually confirmed at this point. Doctors will then try to determine the cause: autoimmune diseases producing anti-thyroid (Graves’, Hashimoto’s) or anti-adrenal (Addison’s) antibodies often result in creating anti-ovarian antibodies thus inducing POF. Other autoimmune diseases such as lupus and rheumatoid arthritis have also been linked to POF. Blood tests to measure the presence of these antibodies may be performed. Genetic testing (karyotyping) may also be performed to determine if there is a genetic cause to the disease.
Treatment Options
POF carries health risks beyond infertility, as the body is depleted of vital hormones that are normally present until age 40 or the onset of natural menopause. Younger women with POF often begin some kind of hormone replacement therapy (HRT) to supplement the hormones lost, although each woman should discuss and work with their doctor accordingly to determine what type of and if HRT is the safest choice for them. Increasing calcium intake and doing weight-bearing exercises on a regular basis help to prevent osteoporosis, as women with POF are at an increased risk for both osteoporosis and heart disease.
With regard to infertility, ovarian stimulating drugs have little effect on women with POF to encourage their ovaries to produce their own eggs. There is anecdotal evidence (less than 1%) to suggest that some women may be able to stim their ovaries using a round of recombinant FSH injections or even by taking birth control pills for 6 months and then stopping them suddenly. However, these are dicey gambles at best- expensive, emotional failures at worst (with particular regard to pricey Follistim or Gonal-F injections). Women diagnosed with POF are often told to seek the use of donor egg with IVF or to consider family building through adoption. As a diagnosis of POF essentially precludes the possibility being able to conceive one’s own genetic child, women and couples coping with this diagnosis often face extreme grief not unlike the death of a spouse or close loved one. Individual and couples’ counseling can thus be a vital compliment to the diagnostic and treatment process.
Personal Experience
When I was 18, I had my left ovary removed in an emergency surgery for a torsioned ovarian cyst that killed my ovary. I was on birth control pills from that point on, and experienced regular the periods that are associated with taking the pill. My periods suddenly stopped for 7 months when I was 25, but my doctor assured me it was stress and put me on a higher dosage of birth control pills. After stopping birth control pills for a neurological migraine contraindication when I was 26, my periods did not return for 3 months. I went to my doctor, who again told me it was stress, but referred me to the reproductive endocrinologist in their practice for follow up. I was diagnosed with POF at age 26 after two high FSH tests and almost no estrogen. My POF is caused by an autoimmune thyroid disorder (Hashimoto’s). At present, I have not begun HRT as my thyroid function needs to be stabilized before going on HRT (as my thryoid medication will have to be adjusted again once I begin the HRT). I have been informed that my best chances at children will be to pursue donor egg/IVF or adoption, as I have little hope to ever producing my own genetic children. Emotionally, this has been a rollercoaster for my husband and me. I have felt everything from a crisis of faith to panic, despair, and deep grieving. Essentially, I’m grieving for the genetic child of me and my husband that will never exist, and it’s a daily process to navigate emotionally, as every little thing can be its own landmine. For now, I’m working on getting my thyroid stabilized and keeping in general good health to prevent further health complications related to POF, and my husband and I are actively investigating the best options to build our family.





3 comments
Wow! I just felt like I read my own story. Diagnosed with hashi’s 2 years into ttc, after surgery to attempt to clear tubes. 9 months after getting my thyroid in order we discovered the POF. It is a horribly lonely diagnosis. No one I know in real life understands the grief you feel when your told your genetics will not carry on into your children. I hear you, I feel you, and I understand! Thanks for sharing!
I also have POF. Never had a period and was initially misdiagnosed was having been born without ovaries or uterus. Luckily, correct diagnosis was given less than a year later. Never developed breasts either. Luckily, found a great guy who loves me for me and not the promise of his offspring. It’s been a struggle, I won’t lie. I have a hard time finding friends my age I can relate to, most are fulltime Moms and aren’t interested in being friends because as they say I “can’t relate to their lives because I’m not a Mom”. This hurts, but I cope.
I too had been diagnosed with POF a few years ago; however, I have had 2 children, so I count myself fortunate. My son died a few weeks after he was born, so after that my periods stopped. My periods had been stopping before I got pregnant the second time, but my doctor told me it was stress. So the first few months I was pregnant I thought it was just my period stopping due to stress. To make a long story short, a year after our son died, we decided we wanted to try again, but I wasn’t having periods. At this time I had done quite a bit of research and thought I could have POF, but my doctor still thought it was stress due to my son’s death. After the POF diagnosis, they found a cyst on my thyroid and I had an elevated thyroglobulin level. I am now trying to get screened for a thyroid disorder and have changed doctors because my gyno knew very little about POF or any disease associated with it. He did do a karyotype and found it wasn’t genetic. I just wanted to say I am blessed because I have a daughter but I do understand the grief associated with POF, because it was like my son dying all over again. I was depressed and felt so sad that I couldn’t have another baby of my own again. No one really understood and some even said “Oh, it must be nice to not have periods anymore!” Idiots. Again, I am so sorry that you are going through this and I really can’t think of anything to say because my situation is different. I do know that having my daughter and husband helped me realize that I am fortunate. Good luck to you and I wish you luck. There is a specialist who specifically studies POF in Houston. His name is Michael Heard, MD, and he seems quite good. I have corresponded with him a few times so you might want to look him up. He has a website and I think it is comforting that he specializes in this and fertility. God bless you.
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