Decoding the Mystery of Your Infertility Diagnosis
AMH Levels
One of the latest more confusing acronyms linked to infertility is AMH levels, which stands for Antimullerian Hormone. I have summarized my view of the low AMH diagnosis and my take on the current accepted treatment protocols prescribed by fertility specialists in a separate post, titled, Does a Low AMH Indicate “Infertility: Getting Pregnant with Low AMH, It’s a review of my findings after close to 20 years of research on the link between physical, emotional and spiritual challenges to fertility. Those of you who are wrestling with a low AMH diagnosis might find it a helpful source of guidance.
“The biggest hurdle I had to overcome after my own high FSH diagnosis almost 20 years ago, was the certainly of studies which “proved” that my childbearing years were over.”
In this post I’d like to use the latest confusion around low AMH levels as an invitation to that, which is central to the Fertile Heart™ Ovum Practice: the importance of doing our own thinking. It’s an invitation to use the Fertile Heart™ Ovum tools to conceive a most creative way to approach your diagnosis, whether it’s low AMH, high FSH, fibroids, elevated prolactin levels, the so called unexplained infertility, or anything in between.
The biggest hurdle
The biggest hurdle I had to overcome after my own high FSH diagnosis almost 20 years ago, was the certainly of studies which “proved” that my childbearing years were over. At the time I had no models to follow. Tthere were no holistic or mainstream protocols that proved helpful to others with high FSH levels which I could emulate; no research, no documented studies validating my growing suspicion that those FSH numbers were just a small part of my story. But some part of me was not quite ready to give up my search for more hopeful answers and began following a hunch. Slowly but steadily hope began to peek through the clouds of desperation.
But hope is an unstable state-of-heart.
If we don’t follow it with action, it fizzles out faster than a cluster of glistening soap bubbles. For me, it was a mixture of despair and desire that finally propelled me to validate my hunch by following through with action. Some of you may already know the rest of that story. (In case you don’t, I share it in my first book, Inconceivable)
And how does this relate to the latest “definitive” data on the link between low anti mullerian hormone levels and infertility? For that matter how does all this relate to your recent miscarriage, or your fibroids, or polycystic ovaries?
Plan on Fighting
In the late nineties, I was sitting in an auditorium in Washington DC listening to a key note by Dr. Laurence Nelson. The conference was focused on POF and Dr. Nelson was the head of the POF research at the National Institute of Health.
I was invited to teach a workshop sharing my story and the observations based on my counseling practice. I had only been teaching a few years but the research I had done throughout my own journey and the case histories of the clients who were able to conceive in spite of dire prognosis, were clues to a much more interesting story about POF than suggested by the medical dogma of the day. (the POF – Premature Ovarian Failure label was later replaced with a more politically correct POI Premature Ovarian Insufficiency label. Now you’re not a failure, you’re just insufficient. I still like POF. Except to me it stands for Plan on Fighting. )
The talk was followed by a Q & A. Inconceivable had been published a couple of years earlier, and some of the women in the audience read my story. Hands shot up and a few questions addressed the possibility of the link between food and reversal of symptoms, and herbal treatments that might make a difference. Dr. Nelson, answered pretty much every one of these questions with, “we have no studies showing a connection, more research is needed.”
I was sitting in the back of the auditorium burning to speak. No, I had no studies either, only the picture of my daughter and the pictures of my clients’babies to validate what for me was no longer a theory: Elevated FSH levels didn’t mean the end of childbearing years. I raised my hand several times but wasn’t given the opportunity to contribute to the discussion. Thankfully, I found a way to contribute to the discussion in the years that followed and with the support of the Fertile Heart™ community I hope to continue to do so.
A surprising discovery
Almost twenty years after my diagnosis, and twelve years after that memorable POF conference Dr Nelson, who is currently the head of the Integrative Reproductive Medicine Group of NIH, along with a team of researchers published a study citing what they called a “surprising discovery.”
This is a quote from an announcement of their findings on the NIH website. (The study was published in Fertility and Sterility) “When the scientists performed ultrasound examinations on the women with POI, they were surprised to discover that 73 percent of the women had ovarian follicles. Moreover, these follicles were capable of producing ovarian hormones.”
But hundreds of women in the last two decades have already not only known the facts validated by this scientific discovery but gave birth to healthy babies after following a variety of treatment protocols. Sadly for NIH, our findings are merely anecdotal evidence. So the NIH research team tells us we need to wait for more reliable data. Here is what the team of the NIH scientists recommend as they contemplate the implication of their study on elevated FSH levels:
“The discovery that most women with primary ovarian insufficiency have immature eggs remaining in their ovaries raises the possibility of developing treatments for the infertility that accompanies the condition,” said Alan E. Guttmacher, M.D., acting director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the NIH institute at which the study was conducted.
Do we wait or do we act?
We are told that now there is “a possibility of treatment!” It shouldn’t take much longer than another decade or so. How should those of us who are wrestling with “premature ovarian insufficiency” respond to the recommendations of the research team?
Do we ignore studies? Are low AMH, and high FSH numbers meaningless? Not to me. The findings of reproductive endocrinology and fertility related research can be eminently useful. But only if we don’t stop to do our own thinking, feeling, pondering, learning and experimenting (in a way that doesn’t harm us) and choose a most life-enhancing path to our child.
I’m coming to this blog late and am incredibly moved by what I have read in the blog and all the responses.
Over the last 6 weeks or so I have discovered that my body has the memory of my parents deciding the morning after I was conceived that they did not want a baby after all.
I have also discovered how my body has longed for a protective father who was not there, or if he was he was not the protective father I needed. Even he himself has realised this very recently and I am blessed as he has apologized, without direct prompting, for not being the protective father I needed and deserved (his very words).
And these are just the latest releases, revelations, healings… so little by little I really am healing: my past, my family line, my disease called endometriosis, my life.
I am living and loving life in a way I can scarcely recognise, what a joy and and a gift! I only hope that my future children feel the same way and will choose to join us soon.
A consultant persuaded me to check my AMH levels again a few weeks ago, I still don’t have the result, I just haven’t made that call… And you know what, I might just not bother!
My body suffered with a disease that came about from years of pleasing others and hiding the truth, and made everything on the inside a toxic, hostile place.
Now we are just waiting – and I have learnt that to wait is not passive, but active and a gift. In it your Dad and I are blessed with more time and space to discover each other and make ourselves stronger before you come to join us.
I am learning to listen to my body, and to my yet-to-be-born and what it is you want too, and discover the strength needed to speak those truths. Most importantly I have learnt to be grateful for every little, and big thing that life has to offer us, there are blessings hidden in everything.
Like in the ugly duckling story, I’ve always believed I was a different type of animal and lived a life that was not mine. That required more energy than I had to spent, but most of all made me feel unprepared, clumsy and ill-suited for the job of being a woman and a mother. I was struggling with no aim and no rewards. At a certain point I realized it was OK to be a different species and found other animals like me. But “too late” they are saying, you wasted too much time and now you can no longer be the mother you’d like to be.
I believe my story is not fully written yet and I am learning that by listening to myself – fully and unconditionally – I can find my way home. My intuition is that the road to motherhood for me implies the liberation of the creativity and energy I kept captive for so long. Once they will be freed and vital, I will have the instruments to reach my longing. So I am studying to do exactly that.
I stopped checking my levels several months ago. It was very liberating for me. I never had my AMH checked (thank God) but the doctors’ speech about donor eggs based on my elevated FSH debilitated me for a couple of years. Now I’m not concerned with these numbers. Here is my explanation to my once-10-year-old daughter (who is now a young woman herself):
Because Mom is older now, the doctors have told her that the chances are not good for having a baby. But your Mom stopped listening to those doctors and began to think for herself. She learned that many women her age have given birth to healthy babies. It’s very possible. It takes good flowing energy in your body. To create energy, your mom changed the way she eats and started taking good care of her body. It’s definitely working because her metabolism has increased tremendously. She also is taking care of her mind and soul through imagery and body truth which are reflective tools a little like meditation and yoga. And of course she prays. She has realized that there is a rhythm to the universe and moving to it is what will help bring us a baby.
Thanks for this topic Julia – it is a great homeplay opportunity.
I do not focus or look much for a diagnosis as to why I have not conceived. THe one time my RE and I talked of it he said age – old eggs. His reasoning is based on that it has not happened. He volunteered he does not know why it does or does not. I hold onto that I have generally regular cycles, ovulate, sufficient lining and that I have an extremely healthy 4 year old and that I believe it is possible for me. Where I have found fear is that I have PTSD – Post Traumatic Stress Disorder and in my difficult moments I feel that is what is preventing me from conceiving again. I believe if I did not have this or the past I do that I would have already conceived. So whether that is true or not no one will know but my heart is operating with that truth so I must heal it.
To explain PTSD to a 10 year old. Mama had things happen as a child that really really scared her. Her mom and dad did the stuff and told her everything that was happening was her fault. Mama didn’t know what to do but at some point her soul came out of her body and learned to live in a closet or somewhere safer because it was just too scary. When Mama got older and could finally leave these terrible people she thought she would be free. She found though her soul was still not totally with her and she didn’t feel like other people and she didn’t feel she could tell anyone what happened because she was so ashamed. So now Mama wants to have another baby and parts of her are still afraid thinking she is not right and that maybe the bad people were right that she is a terrible person and they are still in her hurting her and smashing the baby before he or she even has a chance. Mama does not know exactly how to make the bad people go away from her body and bring her soul back.
Mama has read books and talked to people and listened and prayed and hoped and she thinks the cure is she needs lots and lots of love and she needs herself to welcome her soul back into her and to assure it that nothing like that will ever ever happen again. She needs to really hear it and believe it when you and Daddy and so many others tell her they love her. Mama feels love too by being loving towards others. Mama also shows herself and convinces her soul to stay by really listening to her souls wants – like foods that are most nourishing, and activities like playing with you or painting or drawing or sleeping when she needs too. When Mama does these things her soul returns to her heart where it belonged and it heals and her heart can send her womb the love it needs so when there is an opportunity for a baby to grow he or she will feel all that love and safety and know it is safe to sprout and grow. When Mama feels old memories of the bad people she can turn to a friend or you or daddy or anything that helps her remember where she is today and that the bad people are long gone and they were so wrong and knew nothing of who she really was and would grow to be. Above all Mama must be very good to herself and she tries her hardest to treat you.
Galina
My description about what is happening in my Holy Human Loaf would likely be something like this:
Our bodies and pretty much everything we see and touch, like flour, roses, rocks are all made of something called chemicals. In my body are special combinations of chemicals that help to make a baby. Whatever people eat is made of chemicals. Some are very harmful and some are very good for our bodies. Our bodies also make chemicals when we have emotions. If the emotions are really strong they can make it harder for the body to make good chemicals for making babies. Some of the chemicals in my body need to change in order for this baby to be possible. When I take the time to eat carefully and choose wonderfully nourishing food that helps my body. Also my body can make better chemicals when I am resting more. Comforting parts of my emotions that need extra attention is also very good for my Holy Human Loaf.
Julia, I read your blog on this subject as per your suggestion to me from the European phone circle. Thank-you, it is so easy to get caught up in the “medical jargon” and the despair of the numbers of “less than 0.1 AMH”, where the doctor says “no treatment (e.g. IVF) if viable for you, and in my 20 years experience, no women with your AMH & FSH levels has EVER had a baby.
So here’s my attempt at explaining my situation to a 10 year old:
Different parts of your body get older quicker than others, like Daddy’s knees. The part of my body that makes babies has aged quicker than the rest of my body. When it gets too old, then it cannot make any more babies.
I have a plan to help that part of my body make another baby. I will use the parts of my body that are young and strong, like my heart, my soul and my mind. They will help nurture, support and heal that ageing part of my body. I will pay attention to it, look after it, listen to it, love it, and believe in it.
I LOVE your saying that we have to start thinking for ourselves! The combination of my existing distrust of the extent of doctors’ knowledge along with reading testimonies of success, such as your book “inconceivable,” are what led me to take action after being diagnosed with POF last year.
Soon after my diagnosis, I educated myself on the benefits of Eastern medicine as well as dietary and lifestyle changes. I changed everything and became extremely disciplined. I spent eight cycles under Chinese medicine and was successful. I have now conceived and am about 6 weeks pregnant. It has been quite a ride and I learned more in the last year than I think I have learned my entire life.
I have always believed that I am in control of my own destiny and that belief is stronger than ever now. I know it is still early and I am not delusional. But, when all is said and done, I will know that it is, and was, possible. Never give up hope and ALWAYS do your own thinking no matter what your doctors are telling you.
Thanks Julia for your story, it was an invaluable resource for me during my time of need.
I am 38. While that’s not too old to have a baby, the hormone that is responsible for stimulating my eggs is working too hard to do it’s job properly. I am working hard now to give my body a break and nourish it with things that will make creating a baby an easier process. This elevated hormone indicates that my whole body is not in balance. Everything that we put in out bodies make up who we are. It all counts. Every bite of food, positive or negative thought, every medication, vitamin or herb counts.
Answering to Julia’s invitation:
I am 45 years old and have been trying to conceive again since I was 43, started 20 months ago, when my daughter was 1 year old.
My diagnoses: my age; I might be too old and my eggs may not be good enough anymore; my hormone levels are slightly lower than desirable according to my doctor and may be insufficient due to age and emotional stress. Apart from this my doctor says everything is even better than before I had my daughter: my ovaries are in better shape, my mucus is clear and beautiful, my uterus is perfectly shaped, the ultrasounds are good and I am ovulating, so she thinks I need to have more faith and relax.
State of my human loaf: very little sleep going to bed late and waking during the night to tend to my daughter plus waking up early to take her to school; less time to take care of myself now that I have a young daughter, have/want to work as an architect, and have this mega consuming plan to have another baby which not being yet successful drains a lot of emotional energy, brings worries, etc.; me and my husband get frequently stressed with each other due to tiredness, overwork and overload of responsibilities; my libido is sometimes reduced; we have little time for sex and intimacy although we make sure to squeeze it in on the fertile days – we enjoy it but leave it for too late in the evening when we are already tired; our financial situation is not so smooth with the two of us working on a freelance basis and not always having a regular income; emotional fears of being too old for when my kids grow up, of having a difficult pregnancy or miscarriage due to age; finally a part of me believing that it is still very much possible, that I am not that old, that I can recover my energy, that I can be a good mother one more time and find a new arriving soul to find a decent home in this planet and help another human being to grow up and develop, to learn about values and discover his or her path.
What needs to happen for a pregnancy to be possible: we need to believe; we need to be more positive; we need to sleep more and take better care of ourselves; we need to organize ourselves better so we can find a better balance between rest, family, intimacy, work; me and my husband need to increase trust at each other and in what we can build and create together and not panic so often; we need to breath more largely; we need not to intoxicate ourselves with DVD’s and chocolates every single night in order to avoid the difficult things we have to deal with; we need to address the difficult things, look at them, talk; we need not to fear other people’s opinions like our parent’s fears of us conceiving again, or some people thinking we are crazy since we already have one kid – it is not their decision and we shouldn’t let this influence us; we need to enjoy this dream and believe we deserve it; we need to not sabotage ourselves with bad foods and habits; we need to make a lot of love!
I really enjoyed your post Julia, it was interesting for me because recently I have had to try and explain to my now 11 year old daughter, why I ‘just’ couldn’t get pregnant….
I was about to talk about low ovarian reserves, the role of the and Pituitary glands etc., it was what was explained to me when I was first given my 0.6 AMH result.
But I stopped myself, because I realised that it didn’t seem truthful to me anymore. This is, more or less what I said to her instead….
It takes a lot of energy, and will, to create a Baby, to create another amazing human being.
When you are young your body easily heals and adapts. It is energetic and forgiving. It can absorb the bad things that you feed it, the emotions that you feel though it and the incidents that you experience with it. It’s easy to understand that if you don’t feed your body the right stuff then it suffers a little bit. But you need to also think about the other stuff that the body takes in.
If you think when you see or hear something really scarey or gory you shudder or shiver, that is your body taking the experience ‘in’. So when you are frightened, your body feels it, when you feed your body junk it weakens.
These things mount up through you life, your body stores them, the bad food and the bad experiences and emotions until it doesn’t feel energetic any more and it decides not put the effort into the really hard stuff – like making a baby.
My body has been weary – but with patience and understanding – I am beging to open up my body to let go of the ‘experiences’ that harm my body and ‘liven’ it up! I try to feed my body with food it can cope with and above all I try and be compassionate with myself and let those voices that tell me that I can’t do something or don’t deserve something have a big hug from me and say ‘there, there, there’s nothing to fear in trying’…
Just like a cake needs the right ingredients and preparation, so do our bodies. Some things are things in my body are too high or too low, the body gets confused. So my mix is a little off and I need to pay attention, see what my body is needing, or maybe it has too much of something.
I don’t think I listened to my body for many years, so I don’t think it can heal overnight, but in time it really can heal. I think when I was younger I didn’t respect myself enough and so I didn’t take good care of myself. But I am often reminded – the body is amazing, and the actions we take can be powerful in turning things around into a healing pattern. It’s not just the food we eat that makes us healthy, but it’s how we deal with our feelings, the good and bad. Feelings are there to show us or tell us something, they are here to guide us. So I want to listen to them and learn.
Right now, my body is my baby, and I need to give it my attention. I want this child with all my heart, I want a healthy belly for him/her to grow in, and I want us to be healthy as we can be.