I have been speaking to women who are struggling with infertility for what feels like a life time. From my time as the President and then Executive Director of RESOLVE NYC to my time as the founder and first Executive Director of The American Fertility Association.

Now, I am hearing again from woman through this blog. The stories are all different and they are all the same. It is the regret that always gets me - that rips my heart. The level of self punishment that many of the women are putting themselves through because they blame themselves, even while they tell me that nobody ever offered them education about their fertility. And the pain that vibrates through the phone or an email is palpable. Often the woman makes apologies for the life that she had lived. There might have been an abortion. There was waiting too long to start trying once she was married….If only she had been better…if only she had been “a good girl”.

What I want to say here - is that the system has failed so many women. They have not failed themselves. Where were they supposed to get this information? From the air? When I was in school - I was taught about sex, STDs’ and birth control. That was it. Sex Education was about pregnancy prevention. That was it. Woman need to be given all the facts about reproduction starting from a young age. We need the complete story and that does include safer safe, information about STD’s, birth control and information about our reproductive potential as women. Yesterday I was in a ob/gyn office in NYC, with Dr. Drew Tortoriello the Medical Director of SIRM’s NYC Office. We have been outreaching to area GYN practices to introduce our concept of The Fertility Evaluation. And as always, in the beginning the gynecologists agreed with us that the woman that they see have no idea of their biological clock - and they understood why giving them this information is important. And then, as it sometimes happens - this lovely female gynecologist got nervous about getting her patients nervous about their biological clocks. I told her that I really get nervous going for my mammograms and my pap smears - but that I go - because the information obtained from those tests can change my life. Dr. Tortoriello suggested that she would be able to pick up patient with Premature Ovarian Failure - perhaps in time for them to bank their eggs - and still be able to have children later on. We talked to her about the importance of women getting this information so that they could plan their own reproductive lives and perhaps stay out of reproductive endocrinologist’s offices. We talked to her about the possibilities that women now have - that if they learn that they are in a borderline place when it comes to their fertility - and they are not ready to start their families that they can freeze their eggs.

Dr. Tortoriello explained how egg freezing has changed with newer freezing techniques and CGH. By the time that we left that office - I knew that we had created change. We had brought this office more than bagels and coffee - we had brought them information and a point of view that this office had not heard before - and it was a big office. We had perhaps changed the course of the reproductive lives of some women. I know that this sounds dramatic - but it is dramatic. This one practice with several gynecologists literally sees hundreds of women. We enrolled these doctors into our quest for better education for women around their fertility. I feel like we are building an army of educators one office at a time. We even talked about ways to introduce this information. And before the coffee and bagels were finished - they got it.

When I got home there was a letter from a woman waiting for me. She was full of regret. She was sure that how she had lived her life was the reason for her struggles to conceive. I wrote to her and I told her about all of the possibilities that still awaited her…for there were still many possibilities…the world still had much to offer up. That this was not about some notion that she had not lived a good life. That the infertility that she was now struggling with was not some kind of punishment. Why do we always go there? Why do we as women always blame ourselves? I wish that she had gotten information earlier - but that was my only regret for her - but that was it. And then I sent her this poem by Mary Oliver - perhaps this poem will touch you too…perhaps it is for all of us…no matter where you are in your life….

Wild Geese
by Mary Oliver

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting –
over and over announcing your place
in the family of things

Posted under Advocacy, CGH, Comparative Genomic Hybridization, Drew Tortoriello, Egg Freezing, Fertility, Fertility Preservation, Fertility Support, Infertility, MD, Mary Oliver, Premature Ovarian Failure, Reproductive Choice, SIRM, The Sher Institute, Wild Geese, eggs, fertility evaluations, sexual health, sexuality

The holidays are coming even earlier this year.  The reason I am told by the talking heads on television is because of the economy. So if we start putting Santa out now - way before I have even begun to shop for my Thanksgiving Turkey - we will all have more time to shop for the holidays. This can be a rough time of the year for folks who were hoping to have a pregnancy bump to show off to their family and friends - or who dreamed of sharing the holidays this year finally with a baby. The extension of the season may not be welcome to everybody.

When I was going through infertility - the holiday blues started for me on Halloween…when those cute little trick or treaters started ringing my door bell. For me it was bitter sweet.

Yes…the holidays can be tough stuff when you are trying to conceive. After all, they are about celebration and we may not feel like celebrating. Holiday’s can be about giving thanks and we may not be feeling very thankful at the moment. Holidays are markers of time and remind us that once again we are not sharing these potentially joyous celebrations with a little one or a swelling belly. Holidays are about gatherings and seeing family. Our extended families may be growing around us, and we may feel like the flawed couple in the midst of toddlers and pregnancy announcements. Our families may be looking for “updates” if we have been open about our struggles, or may ask subtle inquiries about our plans for family building. Holidays that have the expectations of being filled with joy, can for those of us experiencing infertility, be a conundrum. One big problem.

How do you cope? There are many theories and suggestions by mental health experts who specialize in caring for the emotional health of the couple experiencing infertility. Everyone acknowledges that this is a toughie.

Suggestions often center around taking yourself into as many “kid free” zones as possible. Try to attend adult only parties. Permission is given for you to skip family functions or situations that are just too painful, explaining to family and friends that you just can’t handle it right now. Suggestions are given for gift giving, such as using catalogs instead of dealing with stores that could be filled with painful reminders and situations. Coming to celebrations late after the part of the tradition that causes you the most pain is over, or leaving early before they begin.

These can be good suggestions, and if they fit with your coping style, you may want to test one or more of them out and see if they ease the sadness. I also need to bring into the picture another point of view.

Reproductive difficulties or infertility is a robber. A thief that is trying to steal your dreams of a family. A burglar of joy. If you loved decorating your door with orange pumpkins and spooky witches…should you allow infertility to take that joy away too?

Perhaps, thought should be given into taking charge of the holidays the way you are encouraged to take charge of your infertility!

Maybe you should be the one to host and coordinate Thanksgiving dinner. You tell everyone what to bring. When to come. When to go! Being a host and hostess takes effort and planning. If you enjoy cooking, you can experiment with new recipes and really out do yourself! You can pick the music and your favorite traditions. You are in charge of the guest list. You might want to include some friends that are also experiencing infertility. You and your spouse will be very busy during the festivities making sure the soup is just right and you will be the boss, not the guest which puts you in a different role for the evening. One of my friends who has experienced infertility told me that she always made Mother’s Day! She was able to be in control, a part of a family day, and have an important role that she was able to receive praise and satisfaction for. Infertility is isolating enough, and your family want to see you and include you.

Being the hostess is a good way to be a important part of the celebration and having a focus other than your private pain.

Another way to take charge of the holidays is to volunteer. Please don’t groan! But maybe you REALLY REALLY can’t stand seeing your pregnant cousin this year, but you want to be with people and enjoy the holidays. Volunteering to serve dinner at a soup kitchen or visiting the lonely at nursing homes or hospitals can really lift the spirits. You can be a part of the holiday season and do a good deed by helping people who are in a different kind of pain. Sometimes, as awful as it sounds, seeing and helping people who for example, don’t have enough food to eat, may help you feel blessed with all that is good with your life.

Take charge of the holidays and hopefully next year, someone else will be in charge!

Posted under Coping with the holidays, Fertility, Fertility Support, Infertility

So yesterday I went on my morning blog troll around the Internet - to see who was talking about what. The 17 year old boy on The AFA site was talking about the economy. You have got to give that kid credit - he has been the most consistent public voice at The AFA lately - and he really gives it his all.  Then I checked out  Surrogacy 101 where Sharon was talking about a study that linked low body weight and infertility. I have to admit that I always like it when studies talk about the hazards of being too skinny!!!!  My third stop - well - that stopped me because I saw my name - and I loved that my fellow bloggers, and fertility educators are looking at the sociological issues that are raised by the advances in reproductive science.  At How to Make a Baby - The Fertility Industry From Every Conceivable Angle - Tracy Morris was talking about egg freezing and my thoughts about how egg freezing allows women to have a more complete ability to have reproductive choice.  Specifically, I was saying that egg freezing would allow women the possibility of having children when they were ready. At “How to Make a Baby” , Tracy pondered if anyone was ever really ready to have children - and what exactly does being ready to have kids mean?  At “How to Make a Baby” - Tracy asked us to ponder a world where frozen gametes was the standard - and everyone choose when they would conceive  - and what that world would look like.  Would the world be filled with middle aged first time Mom’s?

Well, the world is currently filled with many middle aged first time Mothers through the miracle of egg donation.  The fact is that (don’t you love it when people say “the fact is”!!!) as women our biological lives have not kept up with our sociological lives.  Mother nature is not a feminist. There is a reason why the best egg donors are college kids!!! But do you want your college kid to have a baby? Or be an egg donor? That thought crossed Angie Best-Boss’s mind this morning also at ”How to Make a Baby” this morning - where she pondered how she would feel about her daughter becoming an egg donor.  Does that give you pause? It’s complicated, right?

Is college kids being recruited as egg donors for women who didn’t know about their biological clock really a  better idea than teaching college kids about their own fertility window and offering them egg freezing so that they could be their own egg donor when the time was right for them to parent? I think so….

The evolution of egg freezing is not going to change the fact that many women want and need to have children later in life than their biological clocks allow. In my tour around the country even the nurses at ob/gyn offices think that fertility BEGINS to decline after age 37! They are only off by ten very important years!!! How women view themselves and age is very different than our realities. And often the choices that women are making fit much better with their lack of understanding about their fertility than with raw facts about ovarian reserve. That is one of the reason’s that I want all women to get Fertility Evaluations as routinely as they get pap smears!

So….back to the core question! Are you ever really ready to have a baby? I guess that would mean that you really, really understand what it is to parent. And as a parent - I would say that no one is ever completely ready for the challenges of parenthood!!! Kids certainly know how to throw those curve balls! But I certainly wanted certain things in place before I jumped off that particular ledge - even if I didn’t totally understand that parenting meant more than the fantasy of a beautiful, chubby baby to hold.

Many women want a life partner in their lives before they start building their families. And sometimes finding that person takes time - even if that person does not always work out! Many of us want to start out in the world of parenting with that certain special someone. With egg freezing - women would not have to feel that biological pressure to run that partner down with a truck and drag them home by the hair to procreate. Many women in today’s world have careers - and often they don’t feel like they are in a place to take a break for child bearing until they are older than what mother nature had planned. Egg freezing would also help these women out tremendously.  Egg donation is a wonderful family building option - but if I had the choice to use my own previously frozen eggs over donor eggs - I would be my own egg donor. I think that many women would feel the same way as I do.

We have already changed the land scape of age and parenting through egg donation, surrogacy  and expanding the ages that people can adopt. That particular change has already happened - and I prefer the idea that women bank their own eggs when they are younger - rather than recruiting young women for fees - to donate for them later.

The right time to have a baby? Well, that is a very personal choice - just like using birth control - or abortion. The right time means many different things to many different people. For some folks there will never be a right time - and for the mother of 16 kids on a reality TV show that I some times flip by - the right time seems to be all the time!!!

I love the idea of women having reproductive choice. I love the idea that reproductive technology is helping mother nature along in giving women the ability to be able to make better choices for their lives. Will it all be perfect? No - it will probably not be. The technology may in the end not work for them. The eggs may remain frozen until they decide to discard them….because for some - the right time may end up being never. And those pesky kids - I for one may never have been ready - if I knew the full scope on parent hood!  

But I will continue to advocate for women to get the facts about safer sex, birth control, issues of choice, fertility evaluations, egg freezing, and biological clock education.  I don’t have daughters - I have sons. And one day - they will each hopefully meet a beautiful woman and give me grand children!!!  This will only happen if my future daugher in laws have had the education and opportunities to make informed decisions about their reproductive lives. And if they decide that it is the right time for them to have a baby!!!

Posted under Advocacy, Angie Best-Boss, Biological Clock, Egg Banking, Egg Donation, Egg Freezing, Embryo Adoption, Embryo Donation, Fertility, Fertility Consultants, Fertility Education, Fertility Preservation, Infertility, Ovarian Reserve, Reproductive Choice, Sharon LaMothe, Surrogacy, The American Fertility Association, Tracy Morris, egg donors, eggs, embryos, fertility evaluations, sexual health

Yesterday my sister in law had surgery for cancer. The surgeons cut her from her chin to her arm pit. This was her second surgery. Next there will be chemo and in six months they will do her other side. She is grateful to have her vocal cords and to be able to speak. My sister struggles with the after math of breast cancer.  There are so many kinds of personal courage. Watching her in a Japanese Bath House allowing herself to be seen naked with a body that people struggle to not stare at - because it frightens them. That they too could become a person that struggles with cancer. There are so many ways that people get to really touch their own well of personal courage.  The ways that we get to touch that brave part of ourselves is quite endless.

Infertility is a disease that affects people from all races, professions and economic levels. We struggle to do what others think “comes naturally.” We desire to be a part of a community which often centers on family and children. We too, would like told hold our infant among adoring relatives, push our strollers down the avenue, and see simple wonders of the world through the eyes of our child. We want what most people in America and indeed, around the world value the most in their lives…a family.

Often, we feel set apart of the daily rituals of our community. Something as commonplace as a family gathering, a baby’s Bris or Christening or even how we choose to spend a Saturday afternoon, can be yet another line of division between ourselves and our fertile friends and family. I would like to take a minute, acknowledge those of you who are reading this, and have been affected by infertility  - for  your personal courage..

But it is only in my life time, that infertility has come out of the closet. For the television shows and print media, one would think that infertility is a very public issue these days. But today, the media, if not us, have come out of the closet. We only have to turn on the television or open a magazine to see the personal dramas of infertility played out through the eyes of a script writer, reporter or producer. It might be encouraging for you to know, despite the coverage, that on average, the infertile as a group spend less than three years in treatment and most of us leave treatment with biological connected children.

Much has been said about the patient perspective of the perfect infertility physician. In doing my reading on the topic, I read a wonderful joke that has been used to describe the doctor/patient relationship. Angels in heaven were all lined up in the cafeteria waiting to be served dinner. Suddenly, a conspicuous angel appeared wearing a white lab coat and a stethoscope, who started pushing his way to the front of the line. A new angel turned to an older one and asked, “Why in heaven would an angel act like that?” The senior angel shrugged his shoulders and responded, “Oh, that’s just G-d. Sometimes He likes to play doctor!”

What this joke plays to is the public perception of the physician as G-d. But we often do not discuss the qualities of the perfect patient, except of course the advantages of youth and having infertility as part of your health care package! Using this example of the heavens, an image can also be made of the patient as an angel, who allows herself to be pushed aside and quietly suffers. Interestingly, the word patient comes from the Latin word, “pati”, meaning “to suffer.” In fact, the adjective patient is defined as “bearing pains and trials calmly or without complaint.” The implication is that a patient must suffer silently like an angel.

I was never a silent angel. I was not a perfect patient either. But I gradually learned to be an effective patient. This transformation became about as I gradually figured out that I did not have to be a victim of infertility. I could be a survivor.

I think that the first step in surviving, is that we as patients in infertility have an especially difficult time dismissing the image of “The Doctor as G-d”. After all, especially in the treatment of infertility, the doctor can be seen as the giver of life. And let’s face it, we hang on every word. But to be an effective patient, we must learn to see the doctor that cares for us as a person with special skills instead of a G-d like figure. Only then, when we feel less intimidated, can we communicate more naturally with our doctor.

Effective patients approach infertility as a couple’s problem (when there is a partner!). Even when only one half of the couple has been identified as having the medical condition, it does not mean that both halves are not affected by the disease of infertility. The infertility work up, evaluation, and treatment is handled so much more effectively when both members of the couple participate in the office visits and have an understanding of the tests and procedures they have to go through. A couple who approaches infertility as a unit and shares the involvement in their treatment, is better able to support each other and make better decisions about their treatment and options. Remember when you try to divide an elephant in half, you have a mess, not two small elephants. In order for us to get through this we have to communicate and support each other with this elephant and not go off in different directions.

To be a survivor, we have to learn to ask questions about their treatment. Ask your physician direct questions about treatment shortcomings, alternative tests and therapies. For example, Is age a factor in this success rate? Will it hurt? How much will it hurt? What are the complications? What are the benefits of this treatment over others? It can be helpful to come prepared with your questions written down. To be an effective patient, you need to fully understand your tests and treatments in order to follow directions properly.

Survivors tell the doctor when he or she is failing them. This is probably the hardest thing for patients to do. I think we all have this fantasy, that if our “doctor really, really likes us” and we are “very good patients”, our doctor will try harder to get us pregnant. Communicating to a physician when we are unhappy about how we are being treated or the way our treatment is going can be very intimidating. It may one day happen, while you are in treatment, that you get upset about how certain procedures were handled or how you were handled while going through the procedure.

The emotional pain from such incidences can dig deeply when you are chronically in treatment and feel like so much depends on each cycle. These feelings can ultimately affect the doctor/patient relationship. But your doctor cannot be held responsible without first being made aware of how you feel and then being allowed the opportunity to respond. The doctor/patient relationship in infertility treatment is an intense one. And as in any relationship, both the positive and negative issues that occur need to be discussed and not avoided. Sometimes when we have been in treatment with a physician for an extended period of time without a pregnancy everybody gets frustrated, including the doctor! We can feel as if our doctor does not see us anymore. At times like these it can really help to schedule a sit down consultation when you can be sure your doctor has reviewed your treatment and you have her undivided attention.

Survivors understands that they have to be their own best advocate and seek education on both the medical and emotional aspects of infertility. The fact that you are reading this blog… tells me that you are a survivor. The professionals that take care of us, will probably tell you that infertility patients are probably most medically versed of all patients. However, we may overlook information about the feelings brought on by our infertility. A good way to begin is to check out the resources that I have listed in this blog and the links section. Check out our support groups or try reading about the emotional aspects of infertility. Infertility is one of the most stressful life crises you are likely to ever experience.

Infertility can shake the core of your being. But try to remember that while infertility is stressful, the feelings of stress are normal and expected, but not permanent. I promise you, you will not feel the way you feel today, forever. However, while we are in treatment and daily dealing with the pain of infertility, we need to find ways to cope and come out of this experience a whole person.

Check out the community message boards and chats at SIRMor through the various educational and support groups that exsist. Trying yoga, meditation, and exercise can also be helpful. I know it’s hard, and I couldn’t always do it, but try not to give up your life while you are going through this. Try not to let the stress of infertility isolate you. If you can find an infertility buddy through your program, or the message boards, this can be a life saver. Who else will listen to how many follicles you produced and the condition of uterine lining for hours on end?

The patient who is a survivor who have learned to take an active role in the medical team, interpret success rates, is an educated consumer, gets emotional support in order to gain insight and encouragement for our personal choices, and sometimes, the effective patient has to know when it is time to stop being a patient.

Take one step towards leaving being a victim behind. Try being an active participant in the treatment process rather than a passive recipient of medical intervention. Make contingency plans with your doctor and spouse, what will we do if this treatment option or adoption plan does not work out. Remember, patients who are able to see the physician as a person, not a deity, don’t have to act like angels sitting silently in the wings.

It is has been said that the measure of success is how we handle the journey rather than its actual outcome. I know what you want. I wish for all of you the same thing you are wishing for yourselves - a healthy baby.

But try to not let the achievement of this goal be the only measure of your success. While you are riding the infertility roller coaster, try taking control of the moment and feel the success in just that. .

Through this experience, that you never wanted; through the tears and frustration, you and your partner will grow in a positive way. Maybe in a way you can’t even see yet. And your love and strength for each other will tighten like a vine on a tree.

I believe in your strength and your courage. I have sat where you are sitting today. I have felt like the floor was opening beneath my feet, and my biggest accomplishment for the moment was that I was breathing. You will come through this. And you will write your own individual “happily ever after”. I hold out my hand to you and wish you a short journey.

Posted under Fertility, Fertility Education, Fertility Message Boards, Fertility Support, IVF, Infertility, Uncategorized

The volume was deafening at ASRM and it was on some level surprising to me. The objective reality is that financial times are hard. And people still want to have children. They may not know if they will have a job tomorrow - or how they will pay for treatment - or put that hoped for child through college. But they are clear that they want to have a child - today or tomorrow. Women want to be able to preserve their fertility for a time when they can take time off to enjoy their pregnancy and perhaps be financially more secure. And couples who are in the midst of a war between their desires for procreation now and infertility - want the best reproductive medicine that they can find for their hard earned dollars.

Apparently, the world of reproductive medicine is hearing the need because there are two new buzz words in the world of reproductive medicine - one is CGH and the other is egg freezing. Perhaps, that is another part of the surprise for me. I have spent the last six months working with doctors and scientists that have been doing this work and publishing on it for a while now. For me, it didn’t seem so new. Yet clearly I have been working in a bubble of sorts. What is standard of care at SIRM is what the rest of the world is buzzing about as if it is some new thing. I guess the truth is - that it is. And I do know that…..but I sometimes forget that.

And on that note - it is time for the buyer to be cautious - because the stakes are high when you are talking about your ability to conceive and preserve your fertility. When ever a technology is new - everyone wants to be on the cutting edge in providing these services - and not everybody is. Ask questions - such as how many CGH cases have you done? What is your live birth rate? How long have you been using this technique and then compare that information with competing centers. One day CGH and successful egg freezing will be the standard of care. Right now - there are distinct differences between experience, skill levels and out comes.

When I walked around the posters at ASRM, it seemed to me that CGH was the technology that everyone was trying to master. And there is good reason for that - it is ground breaking. What I also noticed is that it seemed that the average amount of cases of CGH that many of posters represented was around 25. So many of the centers still have their training wheels on when it comes to this technology. As a collective - our field is still at the edge of embracing this work - at SIRM they have been working on this for over two years and recently published their findings in Fertility and Sterility.

According to the scientists at The Sher Institute of Reproductive Medicine and ReproCure - their results using Staggered IVF have been very encouraging. Transfer of up to two “CGH-normal” embryos has consistently yielded about a 60% chance of a live birth, a 3- 4 fold reduction in the risk of miscarriages (which are usually due to aneuploidy), a minimal risk of chromosomal birth defects such as Down’s syndrome and a virtual elimination of high order multiple pregnancies (triplets or greater). It also provides an excellent (hitherto unavailable) tool by which to differentiate between embryo and implantation-related causes of IVF failure and pregnancy loss. Of course everyone is working on this technology - it will change the face of the practice of reproductive medicine.

Egg freezing and banking was also all over ASRM from industry sponsored symposiums (which had more interest then seats available) oral presentations and posters. There was also a release about the beginning of an egg registry sponsored by one of the pharmaceuctical companies! And you know that egg freezing is about to become “the thing” when big industry is investing their dollars.

So there is no doubt that egg freezing and banking is a much sought after technology. However, up until now it has, (with good reason) been discouraged because of a dismal baby rate per frozen egg (about 3-4%). The introduction of CGH egg karyotyping combined with improved cryobanking using vitrification has changed all that. SIRM has recently reported in “RBMOnline”, on an 8 fold improvement in the baby rate per vitrified CGH-normal egg and a birth rate of >70% following the transfer up to 2 embryos derived from fertilization of such eggs . There were 16 live births using this approach. The scientists are SIRM believe that the selective vitrification of euploid (CGH-normal) eggs represents a “game changing”, major breakthrough, that finally promises to open the door to “commercial egg storage” for fertility preservation (FP) and for donor egg banking, thereby increasing reproductive choices for women.

People may scuff at the idea of women preserving their fertility for sociological reasons - but to me - that really is the future. It is the only way that women will be able to truly have true reproductive choice. It is not just about preventing pregnancy until we are ready - it is also about having a baby when we are ready. Egg freezing will allow women to do just that. And the technology has truly just walked in the door to make this a viable option.

As consumers it is important to know the numbers at the center you are using when it comes to the amount of cases your center has done with this newer technology. At SIRM/ReproCure they have transferred embryos derived from CGH-tested eggs and embryos, to more than 300 women resulting in >100 births and as many pregnancies still ongoing, thereby accounting for more CGH-derived pregnancies than the rest of the ART world combined. If ASRM is any indication - the use of this technology will progressively grow and within the next 5-10 years will a “new standard of care” in the ART arena.

CGH and Egg Freezing - for many it’s the future - for others it is happening now.

Posted under Biological Clock, CGH, Comparative Genomic Hybridization, Egg Banking, Egg Freezing, Embryo Competency Testing, In Vitro Fertilization, Infertility, The Sher Institute, Vitrification, embryos

It was so strange for me at first, attending my first American Society of Reproductive Medicine meeting (ASRM) as a member of the “fertility industry” as opposed to the Executive Director of The American Fertility Association. Last year - my image was played during opening ceremonies going on about patient support and education - this year I blended into the field of professionals listening to talks and walking through the exhibit hall. It was weird walking by the empty AFA booth - apparently their materials were lost in transit - and relief in not having that be my problem this year! It so interesting looking at this ever changing world of fertility through the same eyes that have been witness to this field for so long.

Yes..from patient support and education to the science - this field is evolving. I often had to simply stop and just take it all in.

I was inspired by Marna Gatlin who is the founder of Parents via Egg Donation. Marna held a little gathering so that we could all get to meet her - and I was reminded of myself so many years ago. Marna is an authentic voice for patients and a cause. She cares deeply about the families that are built through egg donation and she is working from her heart. You can feel her fire and you simply cannot manufacture that.  As far as I know - Parents via Egg Donation is the only non profit organization that focuses on the egg donation process from start to finish. So don’t be confused by the name - this organization is for you even if you are not YET a parent through egg donation. Marna’s organization will help you figure out if egg donation is for you and she will be there once your babies are born and you are coping with the many questions that your children may have. And - this site is an independent non profit organization - and from what I could see that may be an endangered species in the world of fertility.

For me, the surge of independent, for profit patient support and education organizations was papable. For a former Executive Director of a “sacred cow” patient organization - it was hard to see these new groups encroaching on what was the sole domain of the non profit patient organizations.  I have a lot of complicated feelings about this.  And like everything else - there is a dark side and a light side.  First for the dark side of all of this.

When big business decides to build their own direct to consumer “patient education and support organizations or services” these  support tools for patients become marketing tools for the industry that they are solely funded by. Now, this does not mean that the information is not necessarily good - but it does mean that it has a strong bias. And because small fortunes are invested in these look alike ”patient organizations” that are not truly independent patient organizations - it becomes very hard for consumers to tell the difference between commercially controlled patient information from the patient groups. And this “look alike” factor is no accident. The replication of services that were traditionally the non profit patient group’s domain (RESOLVE, The AFA, Fertile Hope, A T.I.M.E. and INCIID) makes it even harder for the consumer to tell the difference between the advocacy groups and the new breed of patient support and education that was spreading like wild fire through the ASRM exhibit hall.

Sometimes it seems that even the professionals could not tell the “for profits” from “the non profits”! Conceive Magazine which is a wonderful magazine is often treated like a non profit patient organization and included in lots of the ways that was once the sole purview of the patient groups. It is a wonderful magazine about fertility - but it is a commercial entity. This blurring of the lines is everywhere from Fertility Life Lines   the brain child of Freedom Drugs to The Fertility Journey  that belongs to Shering-Plough (formerly Organon). The emergence of this new trend in patient education is pulling important dollars from the traditional, independent non profit patient advocacy groups - and they are visibly struggling. After all, why would you invest in  education and support tools that you cannot completely control - when you can build your own and get your own uncensored messages out there? I remember my last few years struggling to keep independence while hearing the words “Return on Investment” or ROI in my sleep - because that is what everyone wanted from the patient groups. They wanted a return on their investments more than they wanted anything else.  It was an exhausting struggle to keep the balance on integrity versus funding in a land of shrinking budgets and build your own patient groups.

Now for the light side - there are more resources! And isn’t that a good thing? And some of these for profit groups are run by former patients without big bucks behind them - not that having big bucks is a bad thing! I am just trying to make clear - that not all of these new breed of patient resources are controlled by big industry.  

Some are being backed by IVF Centers - and big name Reproductive Endocrinologists such as www.fertilityauthority.com — who was exhibiting at ASRM. According to My Fertility Plan - “This site won’t officially launch for a few months, but it looks great and has Alexis Stewart (Martha’s daughter) as the spokesperson.  If you want to get a preview, check on Alexis’ new commercial at http://veegroup.com/samples/ (just click on the picture of Alexis Stewart on the right-hand side)”.

And then there is my friend Sharon who is running Infertility Answers.  Infertility Answers is an Internet based resourse for alternative family building. If you want to know anything about  surrogacy, egg donation, or even embryo donation - Infertility Answers if for you - and it is run by a former agency owner and surrogate. Sharon does bring her heart and spirit into this educational resource. Along those same lines is My Fertile Ground, which is a site that was started by fertility patients who felt that the patient groups were simply not cutting it. So they started their own site with a focus on information for people trying to find clinics and packing their suit cases for treatment. 

Patient information, education and support is key for a positive outcome for consumers whether they come home with a baby or not. It is often said that it is about the journey - and while a patient may not always agree when their eyes are on that prize of a baby of their very own - those of us that have been around the block a few times can tell the difference between a patient that has been given support, education and hand holding through this difficult process of ART and those who have been struggling on their own.

I believe in a free market. I believe in having choices - and competition breeds better services. But I also believe in the value of this country having independent non profit consumer organizations who are able to stand up and be a recognized voice to the media, legislature and regulators. It was just getting harder to find them this year at ASRM….they were getting lost in the crowd.

Posted under A T.I.M.E., Advocacy, Conceive Magazine, Egg Banking, Egg Donation, Egg Freezing, Embryo Adoption, Embryo Donation, Fertile Hope, Fertility, Fertility Coach, Fertility Consultants, Fertility Education, Fertility Journey, Fertility Life Lines, Fertility Message Boards, Fertility Support, IVF, In Vitro Fertilization, Infertility, Infertility Answers, My Fertility Plan, Parents via Egg Donation, RESOLVE, Sharon LaMothe, The American Fertility Association, The American Society for Reproductive Medicine

It is very early in San Francisco and I have to head to airport.  I will be in the air for most of the day. So many thoughts are swirling around in my head after this trip to ASRM. And there isn’t time to write them…as the song goes - “I’m leaving on a jet plane!”  So tomorrow I will begin to write a little about my experiences, thoughts and reflections of the annual gathering of the fertility industry.  Tune in. I will have time to chat then!

Until then,

Pamela

Posted under Uncategorized

A big part of what I do is public education. I have been a Fertility Educator and Advocate for over two decades. I have spent my life speaking and representing the fertility patient to government agencies, the media, and every other possible group. I have been the voice of the patient - and the educator for the patient and the individual who is hoping to stay out of the doctor’s office. It is a passion of mine - empowering women to get the information that they need to take control of their own fertility.

And I am still doing it.  I am available to speak at College Campus’s, Professional and Social Networking Women’s Groups and Associations - don’t forget Rotary Clubs! Perhaps your group is outside of the box - but you think that they would benefit and enjoy  having me come in and talk about the scoop on conscious baby making and making the biological clock something that is more than a cliche - that they can really understand and manage - because now they can.

Do you have an upcoming meeting or on a planning committee - and looking for a speaker that is not going to talk about the usual thing? Well….invite me! You don’t have to worry about my travel fees or an honorarium. My fees are covered, and so is my plane ticket!.

What I do care about is getting up in front of women of all ages - to speak to them about their own bodies - the bodies of their daughters and grand daughters - and speak the truth about reproductive health and fertility preservation.  I want to educate and inspire women to take control of their reproductive potential and give them the tools to make good decisions about their bodies. And I want to speak directly to health care professionals - and inspire them to bring this important information directly to their patients.

And, if you have an idea that you would like to discuss - like having me come in and speak about the link between sexual health and fertility for your book club or yoga school - give me a ring! Nothing is too out of the box….because I stepped out of that box a long time ago - and I want to share it all with you!

Just click here - and we can start talking!

Posted under Uncategorized

One of the coolest things that The Sher Institute of Reproductive Medicine offers the fertility patient community is free access to their doctors on line through the message boards. The SIRM Physicians are on line every day answering questions - and you don’t have to be a SIRM patient to ask your questions. It is truly a pubic service. I know that when I was actively in treatment - that I always had a question - or needed to run something by a second pair of educated ears. Post your questions about fertility medications, IVF, IVF Failure, Pre-Mature Ovarian Failure, PCOS, Egg Freezing, Fertility Evaluations, CGH, PGD, ICSI, Male Factor Infertility - or if you should try one more cycle or if it is time to try assisted reproductive technology for the first time. I am sure that the list of questions and situations are endless. Take advantage of the good doctors. You are already on line….just click! 

Posted under Advocacy, Fertility Message Boards, Fertility Support

One of the hardest part of trying to conceive is what it can do to your sex life.  I remember being told that I had “Hostile Cervical Mucus”…..now isn’t that hot? “Come on Honey - Don’t you want me and my hostile vagina?!!!” Doesn’t that feel welcoming? Well - it didn’t to me. I felt like my body was saying that it didn’t want to receive my husband and my husband’s potential babies. It rocked my world. For a while I was really shut down sexually. I felt like my body was not warm and welcoming….I felt the opposite of sexy. I didn’t feel fertile and lush. I was everything thatwas not. Just think of the other diagnoses…”habitual aborter” or “premature ovarian failure”…..I mean this is really sexy stuff.

Then we move into timed sex….and the list goes on. We like to think that sex has nothing to do with our ability to conceive. That a man who has many children is not more virile, i.e. more sexual than a man who has none. But that is simply perception. The man with many children may actually be an awful lover - and the man with none may be a regular Don Juan - but the children is what everyone sees and uses as a measure. The same thing goes for a woman.

So how do we manage to separate our sexuality of our ability to procreate? And it I read one more fluffy piece about taking bubble baths and lighting candles - I will be sick. Come on…if it was that easy all of us would hardly have any skin left from all the constant bathing!!!

We truly have to do more than that. I love that in Fully Fertile - that they talk about learning how to touch each other erotically again.  The suggestion of learning how to give erotic massage to each other is a wonderful option for opening the doors to reconnection that separates our sexuality from reproduction.  There are some wonderful resources  - books and videos out there that can help couples learn to give each other sensual touch. Just google it or go to Amazon - it is all there! We need to learn to let go of our diagnosis’s and the pressure to perform - and go back into our bodies and feel pleasure again in being a couple.

So…it took me a long time for me to get my groove back. My self image was thrown to the ground from infertility. But I recovered. A great place to start is through touch. And if you want to start with the bubble bath and the candle….why not?

Posted under Erotic Massage, Fully Fertile, Infertility, Pulling Down The Moon, couple's massage, sexual dyfunction, sexual health, sexuality