Is anyone around??

[Steph22679]

I was diagnosed with POF about a week ago. Just looking for any support out there. I'll be 29 in a few weeks. How did this diagnosis progress for the rest of you? Have you noticed a change in symptoms? Steph

[iwillsurvive]

Hi - I am so sorry you are having to go through this! I know how hard it is to digest this info. I too had been diagnosed nearing POF and a very high FSH. Do you have high FSH too? I never noticed any change in symptoms, but my responses to stims had always been crappy even on max doses. This board is kind of quiet 'coz I think most of the ladies going through similar issues post on the High FSH board. There is amazing bunch of women there who are very know ledgable and supportive. You can check out that board too for support and info. Good luck!

[Steph22679]

Thank you for your response, Iwillsurvive! I have visited the High FSH board a few times and the ladies do seem very sweet. The reason why I tried to get response on this board is because I was not diagnosed with nearing POF because of high FSH. My doctor uses the Anti-Mullerian Hormone test to make this diagnosis. I have done a ton of research and while many think it is still in the experimental stage for this to be an accurate measure of ovarian reserve, I have found a plethora of research that indicates the absolute correlation because low AMH and POF or at least significantly diminished ovarian reserve. I believe from my research, conversations with docs, conversations with other ladies with low AMH... that this is a very accurate measure. Levels should be over 2.0 for normal ovarian reserve/function and mine is 0.9. Have you heard of this test before? I look forward to hearing from you !

[iwanababy]

Hi Steph,

I have also been diagnosed with POF. But, my diagnosis was due to the fact that I have high FSH. I probably am of no help since I have never heard of the Anti-Mullerian Hormone test. I only had bloodwork to test my FSH level and it was high. My RE said that it is due to ovarian failure. I am only 34 and never thought it would be this difficult when I decided to have a child. I am however currently taking the wheat grass which lowers FSH......have you also been told that you have high FSH or was that not tested? I have also started acupuncture once a week and am working hard to get off caffeine.

This site has been very helpful as far as getting support. I know I felt so alone, like now one understood what I was going through until I found this site. People here are very caring and understand exactly what I am dealing with and it helps me to see people that have had success after being diagnosed with POF. It definately gives me hope!! Look around different threads and I am sure there is someone who may be able to give you more insight as to what you are looking for. I have found that the doctors aren't always very helpful or compassionate...that is why I am looking for a new RE who is willing to help. If you are not completely satisfied with what your doctor has done or the doctor him/herself, GET A SECOND OPINION. From what I have read on this site, there are doctors out there that are willing to help su, we just have to find them. Keep searching and don't give up hope.

Good luck to you and God bless.

[iwillsurvive]

Yes, I have heard about the AMH test (I am a total junkie about IF tests, tx, etc. and keep reading all the scientific articles I can get my hands on ) and know that a low AMH level indicates diminished ovarian reserve. However, I think this test is commercially available in very few clinics, isn't that right?
I knew about my condition from very high FSH levels and crappy antral follicle count (ranging from 0 to 4 max ) Also, my response to even the highest doses of stims have always been pathetic. However, I do believe that even with POF, one can have success if one can find the right protocol. I do not want to paint a rosy picture and admit that it does not always work, but it can. Even with my super-crappy response, a cycle with my own eggs has worked for me (till now ) and believe me, I am one REALLY poor responder. Good luck and please know that it can happen. I will be interested to know what your next plans are.

[Steph22679]

Hi! It was good to hear from you again. I was also glad you had heard of the AMH test being used to measure ovarian reserve. From what I understand, you are correct in that not all doctors have access to order this test. I had never heard of it until I got my levels back and she told me what it meant. I then went on a hunt and researched until my head was spinning. I'm very eager, as well as nervous, to see how I respond to all the meds. I appreciate your words of encouragement. I need all I can get at this point! I'll also look forward to being in touch with you through this journey. To answer your question about what comes next for me... I have laparoscopic surgery on Feb 28 to clean out my Stage IV endometriosis, clean out all my cysts (I have at least 2-3), remove my tubes (I have a hydrosalpinx and severely contricted tube), a hysteroscopy to remove a uterine polyp and do a D&C. Following healing, I will start stimming. I will be fertilizing any eggs that we get and embryo bank everything that is good. I will do this for several cycles until I am comfortable with the amount I have banked. I need as many as possible in the bank because I do want more than one child and with having never achieved pregnancy at all, I have no idea how many cycles it wil take for a sticky baby or how many times (god forbid) I miscarry. What is up in the air right now is where the sperm will come from. I am in a relationship, and as my posts on Fertile Thoughts bounce back and forth... I am just not ready yet to make the decision whether I will be doing this with my S.O.'s sperm or donor. It's a big decision which will take more time, thought and counseling. I look forward to hearing from you again!

[iwillsurvive]

Hi Steph - Wow! Your dx sounds somewhat like mine!! I too have endo (stage III), cysts (I get chocolate cysts and LUFs all the time!) and one blocked tube. I had 2 laps done in the previous couple years which was like annual spring-cleaning for my endo. However, I don't have hydro or polyps. Sounds like you have a good action plan in place to kickstart the roller-coaster ride! Good luck for the surgery. Hope you heal soon and can get started on the stimming in no time. I will be glad to support you on your journey. Do keep in touch. Sending lots of luck and healing vibes your way

[charlotte67]

Hi Girls,

I usually post on the Over 40 and Trying for First Baby thread but this thread caught my attention. I have been diagnosed as a poor responder, low antral follicle count/low ovarian reserve (I just hate typing that). It is SO depressing seeing women who are 45 and are still getting 15 eggs! I will tell you that during my 1st IVF cycle (had one that was canceled prior to this one) they only retrieved 2 eggs, both fertilized and both made it to 5 day blasts. I did achieve a pregnancy but it was quite the roller coaster of beta's and it ultimately ended in miscarriage at 5 weeks. Probably due to egg quality. So, not the end result we were wanting, but a pregnancy was achieved and I cycled with girls 10-12 years younger who got multitudes of eggs and did not get a BFP. I go to SIRM-St. Louis and they truly believe in going after one or two eggs. Other centers will just shut you down and give you the donor egg speech. They are also big on the egg freezing for later use. They have a special vitrification process that yields high success in thawing. We will begin another cycle in March and I am hoping for the best!

[iwillsurvive]

Hi Charlotte - I really know how you feel by all this crap! It sucks to put your everything on a cycle only to be cancelled or deal with horribly low response to stims! In my last cycle I had 4 antral follicles at my baseline u/s and I was so happy (my antral count generally ranges from 0 to 2 ) when all the ladies cycling with me had at least 12. But I am proof that it can still work even for a very poor responder, and I really hope that your upcoming cycle gives you the miracle that you so deserve. Sending lots of luck and positive thoughts your way.

[mamamolly]

Hi-- I'm glad I've found this thread. I'm worried that I'm starting to have diminished ovarian reserve (I'm 33)-- and yet I don't have high FSH. In fact, I have next to no FSH. I have an existing fertility problem-- Hypothalamic Amenorrhea (HA)-- which means that my hypothalamus doesn't send the signals out to release FSH, etc. (so my FSH and my estradiol levels are generally next to nothing) and I don't ovulate at all on my own. (This is the form of IF associated with anorexia, etc. though my personal history is a bit different). Anyway, When I first started treatment (injections/IUI) I had a lot of antral follicles. So, it was a relief that though I have big problems, ovarian type issues aren't one of them. But a few cycles didn't work, and now this time I have only 2 antral follicles on each side. My FSH hasn't gone up-- but given my situation I'm not sure that I'd even start the feedback loop that leads to high FSH. My RE hasn't been very helpful on this front. She's said both that she doesn't think that POF/DOR is the cause, but she also doesn't know what's going on with this-- low antral counts is not a symptom of HA and she did say, yes, this could start at any time, etc. So, I'm a bit freaked out right now. HA was bad enough-- but HA with DOR seems almost untreatable.