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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.

42 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.

21 Rita { 10.12.14 at 6:05 pm }

I am happy I found this site. I was dignosed in Feb 2014, POF, I am 37, and I started my cycle at 13. I alos have rhumatoid arthritis and hypothyroid, I take meds to balance my thyroid. I was told that I should start HRT, but I have not because I am very afraid to start HRT because od all the side effect. I recently started chinese holistic therapy to help balance my body enegery. so far so good. Has anyone else tried a holisitic approach instead of HRT? If so, please share your experience.

22 Lemon { 12.18.14 at 8:26 am }

It breaks my heart that so many of us have POF, are looking for support, and nothing is available except for random blog posts (thank you so much for posting about this, BTW, even if it was a while ago!). I had normal periods from age 11 to 34. Period went haphazard at that point and at age 36 my GYN diagnosed me with POF. I tried Combipatch, generic estradiol patch with oral
Progesterone, and finally find a combo that works for me: Climara patch with oral progesterone. I am married and we never wanted kids, so I am thankful that I deal mainly with the physical aspects of this disorder and not the psychological impacts. Much love to you all with this issue. I really wish there was more publicity/widespread knowledge about POF!

23 vicky { 01.23.15 at 12:49 pm }

I am 36 and was diagnosed last week with pof and struggling to accept the diagnosis and i will never have my own children, I have not had any issues other than my periods stopped which i was convinced was due to the pill but 5 months later i went to the doctors its taken 2 months for the diagnosis and i got my period 4 days before my appointment so it was a massive shock. I am now suffering cramps and sharp stabbing pain which i have had since i finished the period . I am worried there might be something else going on but its probably more like denial

24 Adrienne { 02.22.15 at 4:26 am }

I am 34 years old and after going 2 months without a period I started researching with my gynecologist was to what the problem was. I felt like a ball of emotions, was experiencing hot flashes throughout the day and night, bad enough to make me wake up about every hour, vaginal dryness and loss of a sex drive. All of my symptoms pointed towards pre menopause. I have never been pregnant although my husband and I would love to have children or at least a child. Last November my gynecologist did blood work on me and we found that my FSH level was an 75. I went back for more blood work a month later in hopes that I would have a different result and my FSH was still high and reading a 45. At that point my doctor stated that I have Premature Ovarian Failure and he recommended me to a Fertility Clinic. A month later and still no period, my husband and I went to the Fertility Clinic in hopes of a magical solution that we we would be repaired and would be able to have children of our own. After a very emotional day, the Fertility Clinic confirmed that I had no follicles at the time and unless my ovaries wake up and start operating again, I would have little to no hope for children. It has been 7 months and still no period. I can tell you that I am not giving up. I am a firm believer in God and that He will heal me and we will be blessed with children. I have always thought that I have been in control of my life and now that this has happened I have never felt so vulnerable. I was on a HRT for about a month but got off of it because I did not like the possible side effects. I have not had any hot flashes for several weeks now, and I feel like my sex drive is returning. I have been taking Evening Primrose Oil, vitamin D and Calcium slobg with my Prenatal Multi Vitamin. Im not loosing sight or faith of my heart’s desire. I know that God can heal all things.

25 Abap { 03.03.15 at 3:59 pm }

I’ll be 34 this week and was just diagnosed with POF. I started getting my period at 13 and ~2 years ago I started experiencing irregular cycles. Four months ago I stopped getting my period and I began experiencing severe hot flashes and dryness. I just got married 6 months ago and while thankfully my husband and I don’t want children, I still feel like I’ve been robbed of a choice. My OB said nothing about Turner’s syndrome nor any autoimmune disorders- all he said was get your bone density checked and get some exercise. I’m so hurt that he would be so callus about the delivery of this information. Although we didn’t want children- it was a choice. I’m going to get a second opinion and ensure that there isn’t anything else wrong. I am so glad to have found this blog which is nearly 6 years old. Thank you for sharing your stories- it’s good to know I am not alone.

26 Laura { 03.05.15 at 11:37 pm }

I am 35 years old and was diagnosed with POF at age 33. I started my period at 11 and was as regular as the clock. I got on the pill at 28 and married at 31. Imagine my surprise when I got off the pill to have a baby, only to find that my ship had sailed with an FSH of 77 and AMH of 0.03. My OBGYN at the time stated “don’t worry. It’s no big deal. You can still have children through donor eggs or adoption.” No big deal?!?!? I started HRT 2 months later and immediately started ovulating again to everyone’s surprise and I have since. Still no little one. I have also undergone IUIs and IVF. We are currently contemplating donor eggs. Most importantly I have done lots of counseling and have found a support group. As a healthcare provider, I cannot recommend this enough. I also highly recommend HRT. At ages below natural menopause, it helps prevent osteoporosis but more importantly, early heart disease, which we are very prone to and studies show that it increases your chances of natural conception. My heart breaks to see so many of us with this dumb syndrome but I am thankful for you and your beautiful hearts for sharing. It feels good to not be alone! I pray for all of us for both physical and emotional healing.

27 Rachael { 04.03.15 at 4:35 pm }

I can’t say I have POF, but I have been informed that I am a low responder to fertility drugs, like only 3 folloicles with 2 embryos resulting, and then 7 follicles with ONE embryo surviving for implantation the 2nd ivf attempt. I have been battling infertility for 4 years, and it is REALLY wearing me down. I wonder if I am going to be told at my next appointment (since my 2nd IVF attempt failed) that POF is where my body is headed. Currently I am 34. When I got off the pill at age 28, I went a year without a period. We found all sorts of problems, that I am now being treated for. However, I was told the reason for no periods was that I had hyperprolactinemia (pituitary tumor). An MRI never revealed a tumor, but my endo. says that it must be too small to see on a scan. So, as long as I take cabergoline once a week, I continue to have monthly periods and, I THINK, ovulate. I have been pregnant 3 times and have had miscarriages in the past, but ever since I have been with the fertility specialist, nothing is working, not a single pregnancy. He just told me that if this attempt doesn’t work (and it didn’t wth ivf) that we will need to discuss further options, meaning donor eggs or embryo adoption. However, if I don’t truly have POF, I feel like there should still be some hope. Like someone else had mentioned, I never developed breast tissue as I was growing, either. I just wonder if it’s ever going to be possible. And you know, I will accept embryo adoption, if that’s what it comes down to. But you know…..I married a man that I love, and I’ve always held that dream of creating a little being with him……what will he/she look like, personality……etc…Everyone dreams of their own biological child. Right now, I am mourning the loss of children I will never meet. It really does feel like a death, and this has all been going on for SO LONG. I have faith in God, but I just keep praying for all of this to end and for God to show me his will for my life.

28 Jessica { 04.04.15 at 11:46 pm }

I was diagnosed with POF in July of 2014. Before that I was a completely normal 24 year old. I had dreams of having my own children and have always wanted alot of kids! I was so blindsided by the diagnosis that I think I cried almost daily for 3 months. I had completely normal periods since I had gotten my period at age 12. I remember I used to joke with my friends that I was ‘fertile myrtle’ because my cycles were so normal. I never in a million years thought I’d have this. When I found out I felt like I was living a nightmare that I knew I’d never wake up from. Since then I’ve come to terms with the diagnosis but it’s hard some days, but I think about it everyday. I’m fortunate enough to be married and have a partner who supports me and my bum body. He is hoping to have the opportunity to get donor eggs. I feel so selfish about feeling like even though I’d technically be carrying the baby, I would feel like the odd (wo)man out. It’s incredibly selfish to think this way. Emotionally, I’m just not ready for adoption of donor eggs just yet. I hope one day I get there. I wish all of us POF girls could see each other to help each of us to feel less alone, because it is lonely. Hardly anyone understands how it feels like you’re grieving about something they’ll never know about or understand. I hope you all know you’re not alone and if you just found out, it gets easier with time. I no longer cry daily or feel sorry for myself. It’s a long process and I’m far from perfect about dealing with it. Just know you’re allowed to grieve the loss of your ‘unknown child’ and none of this is your fault.

29 Rachael { 04.06.15 at 2:33 pm }

Jessica, have you ever thought about embryo adoption? For me, it is my only consideration if I can’t conceive on my own. My husband’s sperm combined with another woman’s egg REALLY bothers me.

30 Jessica { 04.06.15 at 4:47 pm }

Rachael, I’ve thought about it but my husband is wanting the baby to be part him. I am still ambivalent and I may change my mind in the future.. But I’m just not ready to try that option. I’m not sure why it bugs me so much. We discussed waiting a few years to see if my mind changes.

31 Rachael { 04.06.15 at 6:39 pm }

I have a feeling I may be giving this issue time as well. Then, I’ll know if I’m ready to move on, TRULY, without regrets, even if the baby is not my biological child. It is good to know we all have options:)

32 Jolene { 04.13.15 at 1:27 pm }

Just wanted to add my experience to the mix as well…32 and always regular. I was diagnosed with Hashimoto and got levels adjusted on levoxyl in July 2014, then period totally stopped in Nov 2014. After 2 months missed went for bloodwork and was diagnosed POF with FSH of 140! They say the thyroid didn’t cause the POF but that both could be result of autoimmune condition.

I am extremely fortunate that I have a 2yo son–so I’m considered to have secondary infertility. It is a very real thing though bc we had just decided to try for another child and I am devastated. I’ve been trying a lot of diet changes and going to acupuncture for about a month. Still no period and still feeling very sad. I will have to make decisions soon regarding HRT and probably stop the acupuncture as it is getting very pricey.

33 Heeda { 05.01.15 at 10:27 pm }

I was diagnosed with premature ovarian failure when I was 16 years old. My mother took me to the doctor because she found it weird that I did not have my period as yet. I am now 23… still suffering with POF with no probable cause. At 16 I had started taking estrogen then birth control. After being on birth control for a few months I did have my period but I am more of a natural person. I felt that the birth control made me into someone I did not want to be — I became depressed and VERY moody and gained an extra 45 pounds at it was NOT a good time ESPECIALLY at that age dealing with high school and college and what not. (and yes ive tried multiple ones… im just not a fan of it) Eventually after 2,3 years I stopped the birth control and have been off of them since. 23 now… hot flashes here and there. Insomnia almost EVERY SINGLE NIGHT. Depressed but not necessarily clinically depressed. I actually think I will start my own blog/youtube account soon because I feel that the world lacks IF/POF awareness. Lets try our best to make a difference for us all. And PLEASE PLEASE stay in touch — please reach out to me. My email: shaheeda.anif@gmail.com THANK YOU!! XOXO many blessings

34 Caron { 06.03.15 at 2:04 am }

Hi, I was diagnosed with pof/poi at the age of 22. I started my period at the age of 11, and shortly after that I experienced irregular cycles. By the age of 13 I was on birth control to regulate it. After a while I decided to stop birth control, because I got tired of taking them after so many yrs. …but when I stopped my period never came back at 22. So I went and saw my GYN about my missing period after about 3 mths. It was the most devastating news I had ever had at the time. I felt such loss that I suffered depression. It was such a lonely road. …because its so rare. I am now 32 and after some counseling I have come to terms with the diagnosis and I am doing good. I have been on numerous HRT’s. The one that I feel worked well for me was the combipatch, even though I would have spotting sometimes 2x a mth. But every once in a while…like 2-3x out of the yr I would see the mucus discharge, that is the sign of ovulation. I’m on the nuva ring now and think I will convert back to the combipatch. Anyone else here had been on the combipatch and experience anything similar?

35 Valerie { 06.04.15 at 1:52 pm }

Hello! I would like to share my story in hopes for some support and suggestions. I started my first period at the age of 15 which turned out to be irregular from the get go. i saw an OBGYN at the which did a sonogram (did not run any lab work). The Dr told my mother i would not be able to conceive without giving us the diagnosis. We didn’t want to believe what she had said so went on to another doctor and at that time they put me on BC which i took for several years to regulate my cyle. I stopped taking BC at 18 as i had enough of it. After i stopped taking it my periods became irregular again and this time almost non-existant. They would come every few months lasting 1-3 days and very very light almsot as if it was spotting. I ignored the issue until I became married at 27. My husband and i both wanted a child, we tried for a solid year and realized that i needed to seek a specialist. At this time of age i was already having high anxiety, depression, no cycles at all, hot flashes and insomnia. My bloodwork was drawn along with an internal sonogram, the results were shocking. The Dr told me, looking at the bloodwork he would have thought i was in my 50’s and was DX with POF. I lost it!! The next day i went to an IVF specialist in hopes of making my dream possible. I got great news, i could carry a child. We started the process which included more bloodwork and other tests until we reached the financial part. We were denied for assistance.I have never taken any HRT and have no other issues relating to the female body. I am now 32 and still fighting with this battle. 2014 i had a little surprise, my period started out of no where, this time it was normal which lasted 5 days. I got very excited and optimistic. Nothing happend and no period again, until 2 weeks ago (which was regular and lasted 8 days) almost an exact year from the last one. Today is 10 days from the end of my cycle and im spotting. Very odd to me! I have yet to see a dr to find out whats going on. For the past 15 years i have experienced, sore nipples and nausea, which i assume is when my cycle is supossed to be taking place. This time around i feel it for longer periods of time. Im trying to look at this as maybe my body is doing a 180 in hopes to possibly fall into that 10% bracket of “miracles”. Does anyone have similar side effects? Any suggestions? You can also private message me at valeriebetancourt75@yahoo.com if you wish. Good luck and keep an optimistic mind set!

36 Valerie { 06.09.15 at 2:21 pm }

Has anyone tried pre-seed?

37 Vic { 07.16.15 at 9:58 am }

I got diagnosed at 17, so i was put on the pill. I stayed on the pill until April last year (2014) so I was on it for 7 years – I’m now 25.

I decided to come off the pill last April because I wanted to see if my body could work ‘normally’ on its own. (Not because I want to get pregnant right now but just to see if my body was working). During the year I did some research on supplements that can help POF, so I ordered some DHEA. I started taking the DHEA in October 2014 and then in about Feb/March 2015 I bought some Maca.

I started taking the DHEA and maca together, and during March I got some pretty big symptoms…cramp, sore nipples (all the symptoms of ovulating). At the beginning of April I got my period! I couldn’t really believe it! I really believe that the DHEA and maca helped jump started my ovaries/cycle.

I stopped taking the DHEA for a few days whilst I was on my period, and then started again after that. Since April I haven’t had another period, or any symptoms. I’ve also started taking Vitex now as that’s meant to be good.

During the year of being off the pill I went to see the doctor to have a blood test. They came back showing high FSH etc (POF) so I was referred to a gyno. I went to the gyno in May and they said they want to put me on HRT. I then told them I’d actually had a period the month before, so that confused them and they sent me to get my blood checked again.

I’m going back to the gyno in August to get the results and see if I’ve had another period. At the moment there’s no signs I’m going to get one, even though I’m still taking the DHEA and maca. Has anyone else tried this and been in a similar situation? I have now decided to try some TCM and acupuncture as this is meant to be good.

I would recommend anyone to try DHEA and maca, and if anyone has any results please let me know!

Vic

38 Jessica H { 07.17.15 at 12:54 am }

I tried taking DHEA while I was seeing an RE but ultimately didn’t help much in the time I was TTC. I’ve never heard of or tried maca? I’ll have to research it.

I was on HRT for a couple months when I was first diagnosed and it brought my levels from really high (FSH approximately in the low hundreds) to 8.3. HRT worked miracles but I did notice it made me feel loopy and people probably thought I needed to be exercised. but it was worth it to regulate again.

39 Vic { 07.24.15 at 8:10 am }

Hi Jessica,

Are you still on HRT now? And have you ovulated since being on it?

I have heard that sometimes when people go on it they can still ovulate spontaneously – which is better than being on the pill which basically stops the ovaries from working anyway.

I missed my gyno appointment yesterday so have to reschedule, but I’m quite sure they are going to put me on HRT.

Vic

40 Jessica H { 07.24.15 at 10:09 am }

I’m not sure if I ovulated on it. I feel like if I did ovulate, it would be on that. BUT it got me so regulated that I had normal periods even after not taking it for almost a year. The only reason my period stopped again is because I was taking Femara. The RE told me I ovulated with the first round of Femara (I don’t think I did) and so I did the second round with high hopes and it ended up kicking me back into menopause. I’m waiting for my doctors appointment this month in hopes of getting back on HRT. Hope it works as well for you as it did me!

41 Vic { 07.24.15 at 10:48 am }

Oh wow that’s great that it got you regulated even when you stopped taking it. If you weren’t on HRT and you were getting regular periods then surely you were ovulating?

I hope you can get back to that. Do you mind me asking how old you were when you started HRT and what HRT it was?

Thanks for sharing your experience! When I start the HRT I will post on here again to let you know how I get on with it.

If you don’t go back on HRT it might be worth you trying DHEA and maca together, it made me ovulate..but just the once so far.

42 Jessica H { 07.24.15 at 7:00 pm }

Well my doc told me I could have regular periods without ovulating. I wasn’t charting back then so I’m not entirely sure if I did or not but I was trying to conceive in those months and never got pregnant.

I started HRT at 24 when I was diagnosed and took it for two months until my levels went to normal. I was taking progesterone and Estradiol (cream). I would suggest using the cream over the pill form of the estrogen. I was told by my doctor that the pill goes through the liver and is pretty much useless, while the cream goes straight into your system. I would like an update about your results! Good luck!!

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