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December 04, 2014

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Karen

OMG.. Im thinking the same! Why WHy why... thanks for this post.

Don't Count Your Eggs

Thanks for sharing Jen and I totally agree on early testing and intervention. It seems like a no brainer that could save many of us a lot of heartbreak!

Jen

At age 34, I had a day 3 FSH of 15.6 and an AMH of 0.4. I had no reason to think anything was off. I had been on the pill for years, when I went off, my periods were normal. No family history. I was healthy.

I am an RN, and I immediately went down the path of science and research when I was diagnosed. Now, almost four years later, I still don't have a good answer. It frustrates me that this is something that could be easily discovered via bloodwork (AMH specificially as it's a better indicator of reserve/response to treatement).

I did get lucky - I had a child. However, I always saw my family as two children, maybe even three. I wish I had been tested years earlier, maybe we would have tried sooner, maybe we would of had more children.

I am lucky that I pushed for testing after only trying for five cycles. I knew something was "off".

Lisa

Just remembered this...I read a study, somewhere, don't remember where, that mentioned that women with O- blood (that's me) have a harder time getting pregnant. When I previously asked my RE about this he said blood type makes no difference...but still, I can't help but wonder. And the fact that my husband is A+, I just wonder if something is not clicking with my eggs (I do have DOR) and his sperm. Guess we'll find out in our first IVF cycle in 3 months.

Don't Count Your Eggs

I totally agree Deb and Candace. A simple blood test should be offered-- like a fertility screening test for anyone interested. That would help many of us plan ahead, especially as egg freezing is become more popular. Or at the very least OBGYNs should know what these tests are. Mine had no idea and yet his business card said he was also an "infertility specialist."

Deb

Amen, Candace! It was so awful to have my OB go from being all blithe and encouraging ("you're 34! So young! You'll be pregnant in a few months") to being like "your numbers are not awesome." (that's literally how she put it). I wish they would just test everyone. In fact, I kind of wish they'd test young women as a part of their regular GYN visits, but that might be controversial. I can see how in my late 20s I would have resented having to confront my fertility when I was nowhere near ready to begin to deal with it.

Candace

I also have DOR, although it's not too bad yet (but quickly getting worse). I can only laugh when I told me OBGYN at my regular checkup a year and a half ago that my fiance (now husband) were getting ready to start trying, and she told me I still had some time at the age of 34, almost 35. The blood tests for AMH and FSH are so simple! It seems like it should be offered to women when they start trying, especially if they're over 30.

Don't Count Your Eggs

Thanks Jojo. I'm glad to hear :)

Jojo

Maya- just FYI-- I went through IVF to have my baby and had zero problems with breastfeeding. Xo

Don't Count Your Eggs

Thanks for all these great comments! Sounds like I'm not the only one shaking my head at why DOR. I was just working on editing footage from our very first meeting with out RE (in May 2012!) and I was talking about trying for a year under the care of my OBGYN (did ovulation testing etc) and I was talking about doing a round of clomid and having four follicles with one "viable contender" according to my OBGYN. I was all pleased with this because I had no idea. The RE was like-- you should have 15 eggs in each ovary. Ummm...what? Why wouldn't my OBGYN say anything? I spent MONTHS with this information about my few follicles not knowing it was information at all! Early detection, YES! And educated OBGYNs! They are the first line of defense and they often have no idea about this stuff. I had no idea about the breastfeeding link! I'm a little scared because I hoped to breastfeed but I guess many of us hoped for one thing but ended up with another. So I'll manage. Thanks so much for sharing everyone. Oh, and I did read It Starts With the Egg-- I wrote a post on it a while ago. It had good info but I must say I did EVERYTHING the author Rebecca Fett did and I did not have the results she had. But others do so it's a great book to recommend. Oh, and Lauren, I did the karyotype and it came back without any issue. I was hopping that might explain something but it gave us no answers. Hmm. Maybe years from now there will be new studies and information but for now the mystery appears to continue.

Samantha

Just responding to the Breastfeeding after IVF comment, I was able to BF for eight months but always had low supply and had to supplement. I did Fenugreek, Brewers Yeast, Lactation Cookies, drank 4 Liters of water per days and prescription meds to keep some milk supply going. I'd never heard of a correlation between IF and BF, I was able to do some but not exclusively BF as I'd hoped. Wishing everyone lots of success on their endeavors. Xx

Deb

I have DOR with AMH in the 'undetectable' range and an AFC of around 5, discovered at age 35. I got the 'maybe some people are just born with fewer eggs' story from one RE. Another put together the fact that I have hypothyroid and slightly low platelets as well. The thought is that I might have an underlying auto-immune issue that causes my immune system to attack my thyroid, my blood platelets and my ovaries. Lucky me. But it's interesting to hear others' stories of other possible causes people have been told of.

Anita

Dear Maya, indeed diagnosis of unexplained fertility is immensely frustrating. I always had my FSH in the 3-7 range, follicles in the 10-14 range, AMH 1-1.76 range, at least 5-6 fertilized eggs, at least 4 looked pretty, was told that I've good egg quality for my age, but 5 failed IVFs so far. I wish there were more concrete answers. Could be late for me now, but I hope that for future generations there are significant scientific and medical advancements to grant answers. And REDUCED COSTS...And the understanding in the community that its a condition that causes immense stress to us.
Well that said, I'm still grateful for the options medical science has afforded now. In spite of the struggles several couples are able to realize their dream of a family and is encouraging.

lauren

In response to Katie above: I was told that IVF (which I never did) including DEIVF (which I did do) was a major factor in ability to breastfeed. I don't think it's DOR per se?

lauren

My AMH is in the "barely detectable" range and my AFC is 6. I consider myself fortunate in that I have an explanation for mine: an unstable 8th chromosome. It was a horrifying diagnosis (perhaps you've read about it on my blog?) but I am now so grateful to have an explanation. It certainly made the decision to proceed with DEIVF a no-brainer.

One of the things my genetic counselor shared was that there is a correlation between infertility and people with problems on their 8th chromosome. If someone had DOR, now I wonder if they've been karyotyped and, if so, what the results were.

Katie

I also have very low AMH and wish I knew why. I just know that something is messed up with my hormones. This is a bit off topic, but here's something else I wish I knew: that women who get P after infertility can have issues with breastfeeding. I had observed DOR women having issues with milk supply on various IF discussion boards I followed but always assumed that since BF was the natural thing it would not be a problem for me. So it was traumatic for me to observe in my infant's first days of life that my milk was not coming in. After speaking with several lactation consultants about my lack of milk one finally asked me if I had infertility, and it then clicked that they could be related. Plenty of former IF islanders don't have issues BF, but enough seem to that it seems like it would be worth the heads up. And of course it would be nice to know why.

Valerie

Amen from me too. AMH "practically undetectable." One RE, my favorite of them, told me I was just born this way and that IVF might have worked for me 10 years ago after several tries. No answer to why. One rather dubious RE I spoke to said something about flying in airplanes too much (?!). In a strange way, I took comfort knowing that I had a serious physical problem, and it wasn't just "my fault" that I waited too long to start trying, etc. If I had known 10-15 years ago about this diagnosis, I actually think my life and choices would have been much better. It would have given me clarity about what I had to do to have a family. Now I overhear my co-workers talk about how they are waiting to have kids so they can have "alone time" with their new husbands, and I just so want to tell them they should get their numbers tested....how empowering that would have been for me.

Britney

I also have DOR with an AMH of .16 at age 34. The first RE I saw told me the amount of eggs I had for my lifetime was determined when my mother was 5 months pregnant with me. The 4th RE I consulted informed me that my DOR was caused by a genetic blood disorder I inherited from my father's side called Hemochromatosis. It's when the body stores too much ferritin, a type of iron, in your vital organs such as your heart, kidneys, and liver. A blood test at age 27 showed this diagnosis but that Hematologist never mentioned anything about it affecting my fertility. The RE told me the ferritin also stored in my pituitary gland which regulates the entire reproductive system. It sends signals to produce FSH to grow follicles, the LH surge to ovulate, and progesterone to support implantation. All of these hormones my body does not produce at normal levels. The RE told me my fertility was most likely compromised in my early 20's. While I was glad to have the answers to why my body wasn't cooperating, I was upset with the Hematologist for not informing me about the affects on my fertility. But then I realized it didn't matter because I wasn't in the place to have children in my 20's. And as hard as our fertility struggle has been, I know my husband and I will be stronger, more grateful, and more present parents when our little miracle comes in June.

Jojo

Amen!! I warn anyone and everyone about getting tested early so you know what you are dealing with. My RE thinks that as an identical twin, we split our eggs at conception ( both have DOR. I kind of like that theory because she is my best friend in the world and if that is the only downside of being a twin-- I would still choose it. Also- I can say that because we both have miracle IVF babies.

M

Dear Maya, IMO, AMH, a recent approach to ovarian reserve, remains a controversial tool. It surely declines with age as seen on group averages, but how it changes over time in a single person (if it only decreases monotonically, or if it can fluctuate, and how widely so) seems to remain poorly understood. There are a few people raising flags in the scientific literature regarding the depth of our understanding of AMH. Re. DOR, there are a few answers in this: http://humupd.oxfordjournals.org/content/20/3/353.abstract and elsewhere in the scientific literature (put your queries -e.g. diminished ovarian reserve- in scholar.google.com rather than the normal web-based google for the most recent scientific answers). Pregnancy is also a way to slow ovarian ageing. As it stands, Momoko is slowing down your DOR decline! A baby also changes a mother's physiology quite a lot. As a DOR myself, I wonder of natural fertility after delivery of this ongoing baby of mine, although I am very clear that natural baby was impossible before this pregnnacy. I guess some people never give up hope :-)

A Few Good Eggs

Maya, I couldn't agree more. There are NO answers. And it is such a hopeless and frustrating diagnosis. Even if they why doesn't matter now, it would be nice to know. When I found out we were having another girl, my first thought was that I hope I don't pass on DOR to her. And I remember the day one of those pregnancy weekly updates mentioned that this was the week when female babies get all of the eggs they will ever have and it terrified me. Please let our daughter have more than I do. Anyway... good post.

Separately, did you read "It Starts with the Egg." I really liked that book on this topic.

Lisa

Amen Maya! Why?!??! I have a scientific background myself and always need an answer. You hit the nail on the head - that's what makes this so frustrating!!! Had an amazing yoga session last night though and had this incredible "dream" (Vision??) where my RE gave me a big hug and the hug lasted for minutes and minutes. It was so comforting and reassuring. And you know what? - I woke up this morning very at peace.

Also got some encouraging news from a friend yesterday. She is 40 and was in her first IVF cycle. During retrieval they only got one egg. Well, that egg didn't fertilize so they tried one last effort with ICSI, and they got their miracle! It fertilized and was a healthy 6-cell embryo and got up to a 8-cell embryo within an hour and a half...she had the transfer yesterday and that was so encouraging!

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