Random header image... Refresh for more!

Premature Ovarian Failure

Diagnosis: Premature Ovarian Failure

by Hannah Wept, Sarah Laughed

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.

20 comments

1 ks { 12.18.09 at 12:49 pm }

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!

2 AMP { 11.07.10 at 9:49 pm }

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.

3 Heather Collins { 11.26.10 at 10:16 pm }

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.

4 Karen Sanders { 02.18.12 at 7:01 pm }

I wonder where you are now….
I was just diagnosed in October. I had two miscarriages early last year. My deep grief comes from the death of my only child four years ago. I’m remarried now and we want to have a family. I desperately want a child linked to my deceased daughter. A donor egg or adoption won’t give me that. I just turned 38 last month. It’s completely overwhelming.

5 Brooke Thomas { 04.02.12 at 9:30 am }

I am 33 and have been diagnosed with POF for two years now. I was devastated as we all are at hearing this news. I am so upset to find such little information about this affliction. I received such little support from my first OBGYN. I am looking for others and the treatment they have chosen. My new OBGYN has recommended Pellet therapy. I am a week in and feel much better. What have your physicians recommended?

6 Catherine -Emmanuelle Delisle { 06.17.12 at 2:00 am }

Since there is no web site in french about POF, I decided to write in french about my situation. I am sure people in french part of Canada are looking for support so I am taking the the initiative!
Depuis l’âge de 14 ans, je sais que je ne pourrai pas avoir d’enfant. J’ai commencé ma puberté très tard grâce à la prescription de la pilule. C’est à partir de la consommation de ce médicament, vers 17 ans que j’ai débuté ma puberté. En 6 mois, j’ai vécu une transformation physique éclair. Un peu traumatisant… Je ne me suis jamais identifiée aux femme autour de moi. Je n’ai pas de repère. Personne ne vit ce que je vis. Je me sens très seule dans cette situation. J’aimerais trouver des femme qui vivent la même situation que moi pour échanger, parler. Cela m’aiderais à faire mon deuil de cette situation qui m’empêche vraiment de m’épanouir en tant que femme. De plus, je travaille dans un milieu où je suis vraiment confrontée quotidiennement à ma situation: une école primaire remplie de mère de famille. Si vous vous identifiez à cette situation, n’hésitez pas à me contacter. J’aimerais beaucoup échanger avec vous toutes!

Catherine-Emmanuelle

7 Ashley { 09.28.12 at 10:47 pm }

I’m a bit different than the stories posted here as I was diagnosed with POF at age 14 after my period stopped for a year. (i got my period at 11 1/2 and it stopped around 12 1/2…My mother being a caring, loving nurse and mom brought me to one of the best reproductive endocrinologists in the tristate area…after several tests for autoimmune diseases came back negative and most of my hormone levels were normal except for estrogen, I was diagnosed with POF and osteoporosis by age 15…at that point it was devastating to hear that you are “abnormal” and wont be able to conceive children…since then i have continued to pray that a miracle pill or breakthrough in science would occur yet 12 years later, after being on viactivs 3 x a day, HRT for 5 years, 1 year off everything, and 6 years on birth control, no breakthrough has occurred..i experimented by going off everything to see if this idiosyncratic disease was a fluke but unfortunately it was not..driven by such an odd diagnosis and knowing that one day i would have to invest in several thousand dollars to have an egg donor (at this time i hope that my 8 yr younger sister) could be that angel, i am a driven business women with a masters degree in health administration. I pray everyday that at some point physicians and researchers will find a cure or even a cause as to why this mystery occurs within the female body…to all of you out there, have faith, God has a plan for each of us!

8 Emma { 10.23.12 at 10:59 pm }

I was diagnosed with POF at the age of 13. I started my period when I was 12 and they ended at 12 1/2. My mom is nurse and knew that this wasn’t right. I went through every test you can think of and every specialist. I have now been told that I have osteopenia at the age of 24. I am fighting this and due to still being in my peak bone building years I have a good chance. But, now that I am married and all my friends are having kids, it is becoming harder and harder to deal with. We have consisted donor egg IVF but are not financially able at this time. I work in a hospital that has a great infertility center but the company insurance policy does not cover infertility. I am hoping and praying that POF research will find a treatment that is affordable or insurance coverage will be added to plans.

9 Lola { 01.23.13 at 9:19 pm }

I started having irregular periods at the age of 36. seriously, i turned 36 at the end of the month and the next day started a period that was 15 days from the last one….that is how it went for two years. on and off with random amounts of days in between. by year 3, i stopped having a period. i was 38. my obgyn, whom i thought was a “cool” doctor informed me he didn’t know what was going on since my labs and ultrasounds were normal (aside from cysts). now, it’s been a year with no period, i know what this is menopause. but i’m 39. this cool doctor (who i won’t work with again) never even mentioned POF/POI. i had to google it to learn about it. another thing- i was worried that my symptoms might be a signal of ovarian cancer. he laughed at me and said stop reading the internet. didn’t appreciate his laugh or cold manner in how approached my concern.
i am single and didn’t really plan on having kids and now that i know i probably can’t/won’t, it sort of feels weird. i always wondered if i would have them, now i know i won’t. like someone posted above, i don’t have many friends because all the ones i have are married with kids. no one has time for this single girl. it’s tough. but like the post above mentioned, i cope alright. it’s a lonely life.
good luck!

10 erin { 01.30.13 at 10:38 pm }

I was dx with pof 11 yrs ago. although I pushed, no further testing was done. 2 yrs later, dx with celiac (genetic autoimmune disease) & yet still no further testing. I recently switched Drs after moving. my TSH is 0.03… I suffered severe menstrual pain for 15 yrs & not 1 of the many Drs checked for anything. i’m 38 now, & want to be a mom so bad it hurts. hubby isn’t as open to adoption as he was when we got married & Im not emotionally strong enough to go ivf/egg donation. it just sucks that some can have kids (& shouldnt) yet we have to get some strangers permission. idk if i’ll get to be a mom. .I truly hope you do

11 Jean { 02.05.13 at 11:05 am }

I had my first period at 12 and then never again. I had my left ovary removed for a mass and my right one never worked. I was diagnosed with POF at age 13 and have been on HRT since then, I am now 33. I have osteopenia. None of my GYNs have been good about trying to figure out how and why. I finally am having a blood genotype done for chromosomal Karyotype. I am curious to see if it is genetic or structural. I always wanted to be a mom but have decided long ago that it was not in the cards for me. Yes, God has a plan!

12 Pom { 03.26.13 at 12:50 pm }

I have had POF since I was 12. I received a bone marrow transplant which meant radiation and chemotherapy that resulted in POF. I knew back then that I was not normal, but didn’t realize it was POF. My doctors told my parents, but they never explained this to me. I never had a period. Was on the pill since the age of 16, I am 32 now. Only recently did I stop taking the pill, for other reasons, and started to have menopausal symptoms. After seeing my RE last year, I finally realized what this was all about. I never really mourned not being able to have a child, because I have known for so long. I always thought I would be childless. But now DH and I do want to try. I feel it is unfair for him not to have a biological child, when I am the one who is at fault. We are going to try DE in the next little while. Perhaps, if we are lucky, with my younger sister as a donor. But I still am not sure. It is a lot of emotional and financial cost for something that is not guaranteed…

13 Jamie { 05.16.13 at 2:05 am }

I was diagnosed with POF about a year ago. I started my period when I was 15 and they stopped when I turned 20. I am now 21 years old.

I read the posts on here and I find myself envious. Not just of those who were able to have children before their diagnosis, but for those who were diagnosed late in life at a time when they were already married. I envy these women their partner. I envy the fact that they experience the loss and feelings of inadequacy alongside another person. I wish I had that and the fact that I am experiencing this alone makes it that much more difficult.

14 MiMi { 05.17.13 at 8:33 pm }

I was diagnosed with POF due to chromosomal micro-deletion of the X. My periods have just about stopped at age 29. I have no idea what to do now. I have no children, miscarried at age 18, more than likely due to chromosomal development of the follicle. Also they are going to have to determine if I’d be able to carry a donor egg through a EKG for my heart due to microdeletion of the X in my genetic coding. Now, pre-menopausal symptoms have started and everyday is a struggle through hot flashes or mood swings.

15 Yonda { 06.12.13 at 8:48 pm }

I was diagnosed back in 1990 with pituitary adenoma, and prolactin levels that were high and out of range. My endocrinologist put me on Parlodel for a few months/year, and it would help to regulate my periods, but my system got used to the medication and my levels rose once again. He then put me on Dostinex and they too regulated my periods, and the same thing happened. I am 49 years old and I was told that I was in early menopause, and it may have been well over 23 years since my last menstrual cycle. Now that my 50th birthday is in 3 months, last month (May 2013) is the first period I have had since 2000. I feel that I have never skipped a beat, because my nipples always became sore, and my lower back when my cycle started like that when I was younger (I started at 14 yrs old)I don’t know what is wrong. I can’t afford to go to the doctor’s office, so I just try and stay healthy. My husband has never wanted children, and I knew that even before we got married (childhood sweethearts) but what does/could this bleeding be. I am in no pain, just wondering if anyone else has or had these issues/symptoms

16 Ellessia { 01.26.14 at 9:09 am }

I was diagnosed with POF 07/2013. My periods started when I was 10 and became so irregular after that, I was lucky to get it once a year and that’s how it stayed until age 23. I first told my pediatrician about this when it first started and she said it was due to my weight. I was overweight, but I knew that wasn’t the issue. Last year my body went through so many changes and funding out I had POF was the icing on the cake. I’ve been tested for autoimmune diseases as well as genetic disorders which have all came back negative so they just started me on HRT. I will not settle with a diagnosis that doctors don’t fully understand. I believe in God and that what He says is more powerful than what a doctor thinks. I will have my child and it will not be by adoption or IVF. I want a creation of mine and my husband’s genes only (when I marry of course). God can restore anything back to its originality so that it will fulfill his purpose through you. I’m believing God no matter what the reports say, because His Word says…

God bless all of you ladies. Your stories have touched my heart and you will be in my prayers. I declare that you will walk into those doctors offices that told you “you couldn’t” while holding God’s precious promised work and tell them that “He could!” In Jesus name, Amen.

17 Kristine { 02.22.14 at 5:52 am }

I’m 39 and was diagnosed last year with POF. I am fortunate enough to have a 6 year old daughter. My husband and I weren’t planning on having anymore children but it was still tough to take. i had gone back on birth control immediately after giving birth and only went off it because my husband had a vasectomy. My periods were all over the map so i was sent to a reproductive endocrinologist and confirmed it. My doctor never did any of the testing to determine the cause and I’m thinking that I should find out. It has been 1 year now since I had a period. I’m not on HRT, but again thinking I should be. it’s nice to read all of your stories and know I’m not alone. I’m very thankful my husband and I were able to have our daughter.

18 Mel { 03.04.14 at 7:02 pm }

Thank goodness I finally found others who know what Ai am going through! Info about POF is really lacking on the web. I was diagnosed with POF 2 months ago at age 37. My husband and I did not plan on having children, so luckily infertility isn’t a game changer for me. I am on HRT, specifically Combipatch. My GYN conferred with a reproductive endocrinologist and they think this is the best path forward. After much research, I agree. If anyone wants any more info on HRT feel free to email me at ih8ham at gmail.com

19 Elizabeth { 04.19.14 at 10:58 am }

Hi, my name is Elizabeth. Both my mother and I went thru premature menopause at age 37. A few days ago, I found the term POF, when looking into my daughter’s new thyroid readings. She has hashimotos, is 16, and all of a sudden, has hyperthyroid TSH as well as hyPOthyroidism with positive antithyroid antibodies. We are waiting for a recheck of the labs at the 4-week mark.
Anyway,to get to the point. I found “premature ovarian failure” recently, and No one, NO ONE, told me about this when I was 36 and stopped getting my periods on a dime. I had had six years of irregular periods, usually skipping every other month. Treatment was The Pill for six months, then six months off for “ovarian cysts” they thought. Then from the day I was supposed to get a period, I didnt and instead got severe hot flashes. The gyne said, “Call me in six months if you don’t get your period.” I did, six months later. He said it was stress-related, knew I wanted more children, and spelled the words to me, “You will never have another child, are you getting me? You’re in early Menopause.” I switched dr’s, and the second one told me the same thing, but with a whole lot nicer words. They said my FSH was that of an 80-y-o woman. I went through deep grief. My little girl kept asking for a baby brother. It took three years to get pregnant with her. My mother had nine pregnancies, and three of us survived, the others were mainly all miscarriages. She stopped getting her periods at 38, just a bit older than when I did at 36.5 yrs old. My mom took no supplements, lived into her mid 80s, ran a horse farm and did weight bearing activities (hauling water and hay, and wheelbarrel loads of manure!) and she had no bone troubles or broken bones. One thing to consider in this is that city water has flouride in it, and flouride makes bones become osteopenic. Mom always lived rurally with a private well. Me? Well, I took birth control pills, low dose, until age 48. My two hospital consults at age 37 recommended this over HRT. I then took each low dose pill, after age 40, and cut it in half, so that I got half the low dose rate per day. Two bone scans thru age 48 showed minimal bone loss, so ladies, I recommend experimenting. And my daughter? I’m going to read everything I can on this, see if genetic testing can be done for this, and advocate for her to get ovarian tissue or eggs frozen for future use. If you have another other ideas, let me know! And wow, to think almost all of us had our doctors just say it was stress related, and for me thirteen yrs ago, no referrals for endocrinology or anything. I grieve for my grief and will advocate as an alpha-mom much for my daughter so she doesnt go thru what we have experienced. Thanks for sharing.

20 Tir { 04.23.14 at 5:04 am }

I was diagnose with POF today (04-23-2014) I am a 30 years old, single women. My period started when I was 13 and always been very irregular. I would get my period every other month or every few moths. Seen a few Dr. and most/all says it can be from stress, dieting or me just being petite. I always thought in the back of my head this doesn’t set right. One of the Dr. put me on birth control for 6 months to regulate my period. When I got off of birth control my period stop completely. Its been over a year since I had a period. Now, today Im am so devastated and lonelier than ever knowing that I cant have my own biological child. I was told that my ovaries and uterus are abnormally small as well and currently testing for turner syndrome. A syndrome where one of your X chromosome is structurally altered or missing which can also cause POF or development, which maybe explain why I’m so petite. I’ve been doing a lot of research and reading a lot of testimonials hoping that I come across someone who has a miracle. Im glad I’m not the only one who’s going through this. I am hopeful and praying for answers and solutions as to a cure for this. God Bless each and everyone of you ladies.

Leave a Comment

(c) 2006 Melissa S. Ford
The contents of this website are protected by applicable copyright laws. All rights are reserved by the author