Premature Ovarian Failure Determined to Get My Cycle Back

ColeyHay

Determined to Get my Cycle Back
Hi ladies. I am brand spanking new to the world of infertility forums and I'm needing a little support, inspiration and positivity. I'm 34 and my husband and I want a baby more than anything in this world. I have POF AND Diminished Ovarian Reserve Estrdiol 20; FSH 133; AMH 0.16 and blood tests confirmed the cause is unknown. Although the Dr. didn't seem to think so, I feel being on birth control for 17 years straight played a part in it. I got off of them Sept 2012 and haven't had a period since. I am healthy in every other way and am currently undergoing alternative therapies: TCM herbs and acupuncture; fertility massage; yoga; supplements royal jelly, maca, red clover, liquorice root, chaste berry, DHEA, CoQ10, Larganine, nettle leaf, black cohosh, milk thistle, Pregnitude to improve egg quality increase reproductive blood flow; castor oil packs. My goal right now is to get my menstrual cycle back. I am determined and willing to try anything and everything. My RE was very negative in saying I have a 1 in 10 million chance of conceiving and only option being DE but I have seen many posts all over the internet of people in similar situations ended up having a baby naturally so I am on a mission to do whatever it takes.

If anyone has or is going through the same and has had any success with anything, I would love to hear it. I am trying very hard to stay positive and sometimes I am, but other times I feel frustrated, sad, hopeless, anxious, angry, broken. It's a battle, as I am sure you can all relate. My husband is VERY supportive, but it would definitely be nice to have some dialogue with other women who have been through or are currently going through the same thing. Especially if you have had any success!

I'm considering trying a Naturopath, found one near me that is a board certified OBGYN who specializes in ovarian failure... It's expensive but wondering if it's worth a shot....


From my heart to yours,
Cole

Crystal120410

I'm sorry your struggling with IF. The only advice I have is get a RE and do IF treatments. Time is not on your side with your diagnosis, the sooner you start treatments the better off your chances. If you haven't gotten AF in 6 months you need provera more than likely to jump start it. You might find more women in your similar situation on TTTC or TTGP as most of us here are doing IVF. I wish you all the best and good luck!

Mrs.McIrish

Google the high FSH network 54 board and you will others in your situation. Dr. Check at Cooper Reproductive in Marlton NJ works with high FSHers and has brought back cycles when in POF. He deals with OOT patients all the time but you do have to got there for the consult.  

shewolf576

The diagnosis of POF is a hard one. May I ask is it primary or secondary. I am primary POF so I have never had a period of my own.  If you have had a period then you would be considered secondary.  I am 36 and have been dealing with i for a long time.  I know more about POF then I ever wanted to know.  Your FSH is high and that is a big problem.  The higher the FSH the lower the number of eggs.  Mine is unexplained as well.  Some tests I wonder if you have had that was not mentioned TSH. Also you may also look into a chromosomal panel to rule out any turner or fragile X.  NIH has proocals on POF and they do every test in the book.  I went the path of trying anything and everything when I was in my twentys but the chance of a primary spontaniously olvulating is pretty much nill. You also may want to have them look at your ovaries.  Make sure they are not streak ovaries.  The size of the ovaries will also tell you if there is any chance at all.  Mine are classified as streak ovaries meaning empty in plain english.   Your ovaries are the biggest thing to look at because eggs even if you bring down your FSH do not come back.  I don't want to hurt your feelings or upset you in any way, just being as honest as possible.  Medication wise the best bet for spontanious ovulaion would be Viville dot .1 and progesterone taken days 15-30. 

After trying everything available we have now turned to IVF with donor embryo.  Some POFers use donor egg but I just cant afford that and I just want a baby at this point. 

I do wish you luck.....

IBackBevo

Sig Warning

First, I think that you need to get a second opinion and make sure the problem is not that you have some sort of ovulatory disorder.  And FSH (even a crazy high one) should be on CD 3 and if you aren't cycling that obviously it wasn't CD 3. 

Second, even if you do have POF, your RE is (IMO) is being very overly dramatic.  Are your chances good? No, they are not. But, they aren't 1 in 10 million. That is B.S.  I have heard of many, many success stories.  And the number one thing you have in your favor is youth.

Here is just one example: 

https://www.ncbi.nlm.nih.gov/pubmed/15672973?dopt=AbstractPlus

Further, my AMH is currently undetectable and I had a baby 6 months ago.

This website also has many success stories.

https://highfshinfo.com/

Also, search high fsh forum 54.  You might try that forum and the pregnant after high fsh forum. I know of at least two women on there who have gotten pregnant with crazy numbers (with their own eggs) and who either were not menstruating or only having menses like 1-2 times a year.  And one was like 42 or 44.  The other was late 30's and not even cycling anymore. 

Also, your FSH is not a CD 3 reading (because you aren't cycling) so really you can't even look at the typical scales because those are all based on cD 3 readings.

Also, I just this weekend read an article that in POF (as opposed to true menopause), some percentage of women with this disorder (can't remember if it was 1 percent or 2 percent or 5 percent but it was something in there) have natural pregnancies after diagnosis because their bodies still do occassionally release viable eggs.  POF is not menopause.  It does not work in the same way.  I am at work right now so I can't find the article, but I will try to look when I get home.

As far as I know, there is a doctor in New Jersey (I think Dr. Check) who takes really tough cases and has had some success even with women who aren't still having their menses.  Again, ask on the forum 54 high fsh board (search this on internet) and they will know who you are talking about.  From what I have read, he really believes in more natural methods and not trying to pump you full of meds and do IVF.

Also, I am going to see a doctor (he is an OB, RE, REI, and MFM--me thinks he had too much time on his hands) in April who specializes in POF and FX-POI (which is my problem).  Message me after April  5th and I will let you know what he tells me.  I am still having my menses, though.

IBackBevo

shewolf576:

 Also you may also look into a chromosomal panel to rule out any turner or fragile X. 

Sig Warning

OP - on the note of Fragile X-- This is my issue.  I think I now know more about it than any RE I have ever encountered (one reason I am trying to go to an expert in the field) because I have been pretty much reading every medical journal and research study out there over the past two years.  At any rate, what I wanted to tell you is that there is new research out there that even gray zone premutation carriers and even those with a higher than normal number of repeats (but not considered even a premutation carrier) have an increased chance of POF.  Therefore, if they do this test, ask to see the actual results and how many repeats you have.  If you are 29-30 or lower, probably not the issue.  However, the latest research is that even women with repeats as low as 35 on one X are considered at increased risk for developing POF. (You would not be at any risk for having a child with Fragile X, though.)  An RE may not even know this as this is literally research that JUST came out...it isn't even on the National Fragile X Foundation website yet.  This study found that those with repeates between 35-54 had a rate of about 15% of them experiencing POF. The rate in the regular population is like 1-2 percent.  If I was a betting woman, I bet alot of POFers are being told that they are "unexplained" when really they just have repeats below what the traditional cut off was thought to be.  55-100 repeats had the highest rates of POF.  You don't need to worry about having a child with Fragile X, though, unless you have 56 or more repeats.

IBackBevo

SIG WARNING 

Here is a spreadsheet that is several years old detailing success stories of women who were able to concieve, their age, fsh leve, and how the got pregnant:

https://spreadsheets.google.com/pub?key=peJpwrLxiXLQGnQE9_m9EYw

In this sheet, there is a 168, a 98, an 81, a 74, two 70's, and several 40's-60's.

Here are two more studies documenting pregnancies in women with FSH's of 143, 127 and 164:

 https://www.ncbi.nlm.nih.gov/pubmed/10920090?dopt=AbstractPlus

https://www.ncbi.nlm.nih.gov/pubmed/15672973?dopt=AbstractPlus

I am not trying to mislead you...there is no doubt that these are the exceptions (otherwise they would not be reported in medical journals), but I do want to give you some hope and let you know that it is not truly hopeless.

Manada

IBackBevo:

shewolf576:

 Also you may also look into a chromosomal panel to rule out any turner or fragile X. 

there is new research out there that even gray zone premutation carriers and even those with a higher than normal number of repeats (but not consi

 

I don't have anything to offer new to the OP - but I just wanted to say that I am one of those people who is in the "gray zone" of FX repeats but not premutation - with 49 repeats.  It's the only explanation my RE has for my DOR even if I'm not in the premutation zone.   

ceemonkey

Bevo & Manada - what do you mean by repeats? I haven't heard of any of this before. I am one of those "unexplained" cases and no RE except my last one has ever shown any interest in delving into WHY I have this. At 32 I tested with FSH of 20, and was told POF. Highest FSH of 64 on CD3.

My first priority is having a child, but afterwards I'd like to know the reason for my DOR/POF as it doesn't run in my family and it sounds like this might be the cause. 

ColeyHay

Unfortunately the RE said IVF is not an option for me because my ovaries wouldn't respond to the meds since I'm not getting AF. : That's why I'm seeking any and all alternative options to get my cycle back and ovulate, even if it's not every month...

IBackBevo

ceemonkey:

Bevo & Manada - what do you mean by repeats? I haven't heard of any of this before. I am one of those "unexplained" cases and no RE except my last one has ever shown any interest in delving into WHY I have this. At 32 I tested with FSH of 20, and was told POF. Highest FSH of 64 on CD3.

My first priority is having a child, but afterwards I'd like to know the reason for my DOR/POF as it doesn't run in my family and it sounds like this might be the cause. 

Have you had the Fragile X testing done?  I think it has to be done by a Quest Diagnostics as I think they are the only ones with the test or own the patent or something.  It is about $575, but my old insurance covered it.

Through some sort of testing that Quest has developed, they look at your DNA and determine how many repeates that you have on each of what are called "CGG" on your X chromosomes.  My understanding is that these repeats are basically a sort of hiccup in the DNA process. Everyone has a certain number of these repeats on the FMR1 gene.  Most people have 29 to 30 on a single chromosome.  Some people have less. 

This explains about the FMR1 Gene and the FMR Protein better than I can:

https://www.fragilex.org/fragile-x-associated-disorders/genetics-and-inheritance/fmr1-gene/

 https://www.fragilex.org/fragile-x-associated-disorders/genetics-and-inheritance/fmr1-gene/fmrp-the-fragile-x-protein/

A man is considered to have Fragile X Syndrome if he has over 200 repeats on his only X chormosome.  This is considered a full mutation. These repeats prevent the production of the FMR protein.  This usually results in mental retardation, autism, distinctive physical features, and a bunch of other symptoms.  Having full-blown Fragile X Syndrome means that you are probably pretty impaired in normal life functions.  It is number one cause of inherited mental retardation and Autism.   It is my understanding, that for a woman to have Fragile X Syndrome, she has to have both X's with over 200 mutations and this is pretty rare (I think about 1 in 8,000) so this is more commonly seen in men/boys.  A woman with over 200 repeats on one of her X's (but who has another X that is normal) may have milder forms of intellectual disability and other symptoms, but usually is not as severely impaired because she still has one normal X chromosome.

Then there is the pre-mutation range.  This is when a person has 55-200 repeats on one X. (I am guessing a woman could have premutations on both X's, too, but i have not heard or read much about this so I am guessing it not very common.)  And people with premutations can still be affected, but generally don't demonstrate the serious cognitive/intellectual disabilities that those with full mutations have.  However, things like ADD/ADHD, anxiety, etc. are common.  Fragile X Associated Ataxia Syndrome is also common in males with premutations over the age of 50. 

Another Fragile X Associated disorders is FX-POI (Fragile X-Primary Ovarian Insufficiency).  For whatever reason, women who have full mutations (over 200) do not usually experience this, but about 20-30 percent of women with "premutations" do have this.  In a study I recently read, it was reported that women with between 55-99 repeats experience the highest rates of POF.  (As an aside, the Canadian government site on Fragile X states that ALL women who have premutations have some form of ovarian dysfunction. This is different than what the NIH and US websites say.)

Being a Fragile X Pre-Mutation Carrier basically means that you have between 55 and 199 repeats on one of your X chromosomes. 

Having between 45 and 54 repeats on one of your X Chromosomes makes you a Gray Zone Fragile X Carrier.    

Also important about all of the above is that repeats can expand over time so if you have a premutation, it could potentially mean that your children or grandchildren (or somewhere down the line) could end up with full-blown Fragile X Syndrome.  The lower your repeat, the less chance that it will expand to over 200 repeats in one generation.  Plus, lower repeats tend to be more stable and less likely to expand from one generation to the next.  The lowest number of repeats reported in medical literature that has ever expanded into a full mutation in one generation has been 56.  (I think that is why they call under 55 or 56 or whatever to be the gray zone...basically it means that your kids probably won't have full-blown Fragile X Syndrome, but it is something to consider for future generations.)

The "popular" theory until recently has been that gray zone carriers were unaffected. I do not believe this to be true.  A recent study found that 15 percent of women with between 35-54 repeats experienced pre-mature ovarian failure.  Only about 1 percent of the normal population goes through POF.  This is too big of a coincidence in my view.

Here is the article

https://www.rbmojournal.com/medline/record/ivp_03406717_117_376

Also, while I cannot remember my specific repeat number off the top of my head, mine was low because the geneticist was not concerned about me having a child with full-blown Fragile X...I think I was right on the gray zone/premutation border.

However, I can tell you that I have sooo many symptoms that are considered "pre-mutation" symptoms that it is uncanny.  I had a lazy eye as a child. I have flat feet. I have ADD.  I have mild anxiety (although I don't take any meds for it).  I even have hyper flexible finger joints.  And, of course, I have my nice little UNDETECTABLE AMH level. 

I absolutely believe that my Fragile X premutation is what has caused my ovarin dysfunction. I think it is probably the reason that alof of women experience ovarian dysfunction even when they are only in a gray zone or in the high normal area...and RE's (due to lack of knowledge) probably just dismiss these results as being normal and never have any clue that the two could be associated. The problem I have run into is that medical professional (and even RE's and geneticists) seem to know very little about this. I usually end up educating THEM.  Even worse, there does not seem to be consensus in the medical community about what causes the problems...whether it is some dysfunction with the Messenger RNA, whether premutation carriers are just born with a smaller ovarian reserve or whether it is a recruitment issue or whether it is an ovarian environment issue.  There are alot of "theories," but no one seems to have any definate answers. 

Here is a website on FX-POI:

https://www.fragilex.org/fragile-x-associated-disorders/fxpoi/

IBackBevo

ColeyHay:

Unfortunately the RE said IVF is not an option for me because my ovaries wouldn't respond to the meds since I'm not getting AF. : That's why I'm seeking any and all alternative options to get my cycle back and ovulate, even if it's not every month...

First, I don't think this is true. They can induce AF.  Personally, I would get a second opinion.  I don't know what your budget is or where you live, but a consult with dr. check might be worthwhile. 

Also, have you been checked for adrenal disorders, ovarian tumors, pituatary disorders/tumors and thyroid disorders?  All of these can mimic POF - absent menses and high FSH.

IBackBevo

Manada:

IBackBevo:

shewolf576:

 Also you may also look into a chromosomal panel to rule out any turner or fragile X. 

there is new research out there that even gray zone premutation carriers and even those with a higher than normal number of repeats (but not consi

I don't have anything to offer new to the OP - but I just wanted to say that I am one of those people who is in the "gray zone" of FX repeats but not premutation - with 49 repeats.  It's the only explanation my RE has for my DOR even if I'm not in the premutation zone.   

I would put money on the fact that that is your problem.

Here is the article I was discussing:

https://www.rbmojournal.com/medline/record/ivp_03406717_117_376

I do not find many Fragile X people around here.  I would love to discuss your stats with you, your cycle history, symptoms, etc.  Because I have been researching this since my diagnosis like 1.5 to 2 years ago, I have come to believe that DOR caused by a fragile x premutation (really FX-POI) behaves differently than typical "DOR" or "POF."  This is based not only on research,but also on my own experiences and the other experiences of those who I have talked to. 

By way of example, I swear that I have been having menopausal (or peri-menopausal) symtpoms since I was about 20.  Hot flashes, night sweats, irregular menses, etc.  My OB decided ten years ago that I had "PMDD" and put me on the pill...which actually did help my symptoms.  When I went off the pill, they came back.  Yet, I am now 32 and still cycling and appear to be ovulating. WTF?  If I was entering menopause at 20, I would have been through it by now. 

I also read an article written by another woman who had FX-POI and she had the exact same symptoms...effectively, she described living in a peri-menopausal type state starting when she was 17 and continuing indefinately, but she never went into menopause.  She ended up finally going on HRT due to the symptoms.

ceemonkey

IBackBevo:

ColeyHay:

Unfortunately the RE said IVF is not an option for me because my ovaries wouldn't respond to the meds since I'm not getting AF. : That's why I'm seeking any and all alternative options to get my cycle back and ovulate, even if it's not every month...

First, I don't think this is true. They can induce AF.  Personally, I would get a second opinion.  I don't know what your budget is or where you live, but a consult with dr. check might be worthwhile. 

Also, have you been checked for adrenal disorders, ovarian tumors, pituatary disorders/tumors and thyroid disorders?  All of these can mimic POF - absent menses and high FSH.

Ditto Bevo - not to be harsh, but it sounds to me like your RE doesn't want to deal with you because he feels like you'd be too much work. Unfortunately, those of us with high FSH/low AMH and the distinction of DOR or POF are discriminated against in fertility practices. Like others have said, check into Cooper Institute in NJ and specifically Dr. Check. I went to him and even though I wasn't successful, feel like he is one of the more experienced REs out there in terms of our diagnosis. 

ceemonkey

IBackBevo:

ceemonkey:

Bevo & Manada - what do you mean by repeats? I haven't heard of any of this before. I am one of those "unexplained" cases and no RE except my last one has ever shown any interest in delving into WHY I have this. At 32 I tested with FSH of 20, and was told POF. Highest FSH of 64 on CD3.

My first priority is having a child, but afterwards I'd like to know the reason for my DOR/POF as it doesn't run in my family and it sounds like this might be the cause. 

Have you had the Fragile X testing done?  I think it has to be done by a Quest Diagnostics as I think they are the only ones with the test or own the patent or something.  It is about $575, but my old insurance covered it.

Through some sort of testing that Quest has developed, they look at your DNA and determine how many repeates that you have on each of what are called "CGG" on your X chromosomes.  My understanding is that these repeats are basically a sort of hiccup in the DNA process. Everyone has a certain number of these repeats on the FMR1 gene.  Most people have 29 to 30 on a single chromosome.  Some people have less. 

This explains about the FMR1 Gene and the FMR Protein better than I can:

https://www.fragilex.org/fragile-x-associated-disorders/genetics-and-inheritance/fmr1-gene/

 https://www.fragilex.org/fragile-x-associated-disorders/genetics-and-inheritance/fmr1-gene/fmrp-the-fragile-x-protein/

A man is considered to have Fragile X Syndrome if he has over 200 repeats on his only X chormosome.  This is considered a full mutation. These repeats prevent the production of the FMR protein.  This usually results in mental retardation, autism, distinctive physical features, and a bunch of other symptoms.  Having full-blown Fragile X Syndrome means that you are probably pretty impaired in normal life functions.  It is number one cause of inherited mental retardation and Autism.   It is my understanding, that for a woman to have Fragile X Syndrome, she has to have both X's with over 200 mutations and this is pretty rare (I think about 1 in 8,000) so this is more commonly seen in men/boys.  A woman with over 200 repeats on one of her X's (but who has another X that is normal) may have milder forms of intellectual disability and other symptoms, but usually is not as severely impaired because she still has one normal X chromosome.

Then there is the pre-mutation range.  This is when a person has 55-200 repeats on one X. (I am guessing a woman could have premutations on both X's, too, but i have not heard or read much about this so I am guessing it not very common.)  And people with premutations can still be affected, but generally don't demonstrate the serious cognitive/intellectual disabilities that those with full mutations have.  However, things like ADD/ADHD, anxiety, etc. are common.  Fragile X Associated Ataxia Syndrome is also common in males with premutations over the age of 50. 

Another Fragile X Associated disorders is FX-POI (Fragile X-Primary Ovarian Insufficiency).  For whatever reason, women who have full mutations (over 200) do not usually experience this, but about 20-30 percent of women with "premutations" do have this.  In a study I recently read, it was reported that women with between 55-99 repeats experience the highest rates of POF.  (As an aside, the Canadian government site on Fragile X states that ALL women who have premutations have some form of ovarian dysfunction. This is different than what the NIH and US websites say.)

Being a Fragile X Pre-Mutation Carrier basically means that you have between 55 and 199 repeats on one of your X chromosomes. 

Having between 45 and 54 repeats on one of your X Chromosomes makes you a Gray Zone Fragile X Carrier.    

Also important about all of the above is that repeats can expand over time so if you have a premutation, it could potentially mean that your children or grandchildren (or somewhere down the line) could end up with full-blown Fragile X Syndrome.  The lower your repeat, the less chance that it will expand to over 200 repeats in one generation.  Plus, lower repeats tend to be more stable and less likely to expand from one generation to the next.  The lowest number of repeats reported in medical literature that has ever expanded into a full mutation in one generation has been 56.  (I think that is why they call under 55 or 56 or whatever to be the gray zone...basically it means that your kids probably won't have full-blown Fragile X Syndrome, but it is something to consider for future generations.)

The "popular" theory until recently has been that gray zone carriers were unaffected. I do not believe this to be true.  A recent study found that 15 percent of women with between 35-54 repeats experienced pre-mature ovarian failure.  Only about 1 percent of the normal population goes through POF.  This is too big of a coincidence in my view.

Here is the article

https://www.rbmojournal.com/medline/record/ivp_03406717_117_376

Also, while I cannot remember my specific repeat number off the top of my head, mine was low because the geneticist was not concerned about me having a child with full-blown Fragile X...I think I was right on the gray zone/premutation border.

However, I can tell you that I have sooo many symptoms that are considered "pre-mutation" symptoms that it is uncanny.  I had a lazy eye as a child. I have flat feet. I have ADD.  I have mild anxiety (although I don't take any meds for it).  I even have hyper flexible finger joints.  And, of course, I have my nice little UNDETECTABLE AMH level. 

I absolutely believe that my Fragile X premutation is what has caused my ovarin dysfunction. I think it is probably the reason that alof of women experience ovarian dysfunction even when they are only in a gray zone or in the high normal area...and RE's (due to lack of knowledge) probably just dismiss these results as being normal and never have any clue that the two could be associated. The problem I have run into is that medical professional (and even RE's and geneticists) seem to know very little about this. I usually end up educating THEM.  Even worse, there does not seem to be consensus in the medical community about what causes the problems...whether it is some dysfunction with the Messenger RNA, whether premutation carriers are just born with a smaller ovarian reserve or whether it is a recruitment issue or whether it is an ovarian environment issue.  There are alot of "theories," but no one seems to have any definate answers. 

Here is a website on FX-POI:

https://www.fragilex.org/fragile-x-associated-disorders/fxpoi/

Wow!! What a wealth of information. I have a feeling I will be on the internet a lot looking into this.

I was tested for Fragile X and only told that it was negative. There was no further elaboration on it...

Manada

IBackBevo:

My OB decided ten years ago that I had "PMDD" and put me on the pill...which actually did help my symptoms.

I also had a PMDD dx when I was about 26 or 27! It was around or about a year or so after my cycle started to change dramatically and I got some serious PMS symptoms and irregular bleeding, or so I thought.

Looking back I suspect this is the time my DOR really kicked in. I never thought to link the PMDD stuff with the FX exploration as well. Interesting... I haven't been able to find much from other women in the "Gray zone", this conversation has been very interesting.

IBackBevo

Manada:

IBackBevo:

My OB decided ten years ago that I had "PMDD" and put me on the pill...which actually did help my symptoms.

I also had a PMDD dx when I was about 26 or 27! It was around or about a year or so after my cycle started to change dramatically and I got some serious PMS symptoms and irregular bleeding, or so I thought. Looking back I suspect this is the time my DOR really kicked in. I never thought to link the PMDD stuff with the FX exploration as well. Interesting... I haven't been able to find much from other women in the "Gray zone", this conversation has been very interesting.

ColeyHay

IBackBevo:

ColeyHay:

Unfortunately the RE said IVF is not an option for me because my ovaries wouldn't respond to the meds since I'm not getting AF. : That's why I'm seeking any and all alternative options to get my cycle back and ovulate, even if it's not every month...

First, I don't think this is true. They can induce AF.  Personally, I would get a second opinion.  I don't know what your budget is or where you live, but a consult with dr. check might be worthwhile. 

Also, have you been checked for adrenal disorders, ovarian tumors, pituatary disorders/tumors and thyroid disorders?  All of these can mimic POF - absent menses and high FSH.

Yes, They tested my adrenal, fragileX, cortisol, thyroid, karyotype... All came back negative! So frustrating... I'm not okay with my ovaries just not working for reasons "unknown." That's why I feel like 17 years being on BCP has something to do with it...

IBackBevo

ColeyHay:

IBackBevo:

ColeyHay:

Unfortunately the RE said IVF is not an option for me because my ovaries wouldn't respond to the meds since I'm not getting AF. : That's why I'm seeking any and all alternative options to get my cycle back and ovulate, even if it's not every month...

First, I don't think this is true. They can induce AF.  Personally, I would get a second opinion.  I don't know what your budget is or where you live, but a consult with dr. check might be worthwhile. 

Also, have you been checked for adrenal disorders, ovarian tumors, pituatary disorders/tumors and thyroid disorders?  All of these can mimic POF - absent menses and high FSH.

Yes, They tested my adrenal, fragileX, cortisol, thyroid, karyotype... All came back negative! So frustrating... I'm not okay with my ovaries just not working for reasons "unknown." That's why I feel like 17 years being on BCP has something to do with it...

What were your DHEA-S levels like? I know center for human reproduction is big into giving ladies DHEA has really reported some great success with DOR/POF patients. I normally tell ladies not to take it unless they have had their DHEA-S levels checked because if you are high or high normal and take it, it can really screw with your cycle...but you may be to the point that it may at least be worth trying...I know there are some brands better than others.

There are alot of other supps some people take - Royal Jelly, CoQ10, wheat grass, etc.  You may ask on the high fsh forum 54 (search on the internet) what people take and how much.  If you are looking to do this completely naturally, you ight look into trying to go that route. I know some people have had success...

You might also try accupuncture.

I doubt the birth control caused your problem. It probably just masked the symptoms so you didn't know there was a problem until you went off of them.

ColeyHay

I've actually been taking DHEA for the past month. The 75mg a day that was used in the clinical trials. Waiting to get my numbers rechecked in about 2 more months to give all the stuff I'm taking time to work. As for supplements I'm also taking LArganine, Wheat Grass, evening primrose oil, vitex, pregnitude, liquorice root, CoQ10, royal jelly, black cohosh, nettle leaf, red clover, maca, milk thistle and the Chinese herbs the TCM Dr gives me. I do acupuncture once a week, fertility massage, yoga and castor oil packs. I also eat very healthy which I did anyway and exercise, although I could definitely get more sleep!

I'm willing to try anything and I am all about natural. But I def think I also need to find a high FSH RE...

LittleLady77

Hi there, I'm another high FSH and undetectable AMH lady. It's horrible, like scrap the bottom of the barrel desperately horrible. I'm sorry you're going through this. After a few years of infertility we are jumping right to donor eggs, so I'm no help. 

This has been one of the most educational posts I have ever read.

Best of luck OP.  

allkndsofcute

COLE EMAIL ME!!!

Hi Cole. We are going through something very similar. I think we can help eachother!

:
Marrissa
Marrissawhitleyhotmail.com