Friday, April 25, 2014

RESOLVE to Know More About the Link Between Endometriosis, Infertility and Recurrent Pregnancy Loss

My Community! Survivors of all things endometriosis, infertility, RPL related!
Incredible, strong women at RESOLVE Advocacy Day.

My need for support and companionship during my struggle with infertility and endometriosis led me to join the online patient community. Through my involvement in this community, I have met some of the strongest, most inspiring women. Some of them have become my closest friends and confidants.  A good many of them started struggling with infertility in their 20’s. Years passed as they tried many treatments and suffered miscarriages. Some of them did receive an endometriosis diagnosis sooner than later. But what is most astonishing is some of them are just starting to get their endometriosis diagnosis, years after they have moved on from infertility treatments.  The majority of these friends are now parenting through adoption or are in the process of adopting.  Some of them are choosing to use an egg donor or end their family building journey altogether. They have worked to find peace in their decision.  But in some of these cases, I can’t but help feel their doctors failed them, like mine failed me for so many years. 
The Endometriosis Foundation of America states that “Approximately 176 million women and girls worldwide suffer from endometriosis; 8.5 million in North America alone.” RESOLVE, the National Infertility Association, reports that “40% of women with endometriosis will struggle with infertility” and “In about 30% of women, there are no symptoms except infertility.” The truth is, on average, it takes ten years of a woman shuffling around to different doctors for her to get an endometriosis diagnosis. It took me ten years and I have obvious symptoms of endometriosis, such as painful periods, infertility and chronic digestive and urinary issues. How about women who do not have the obvious symptoms? What about women with unexplained recurrent losses, low ovarian reserve or poor egg quality? Many of these women have “silent endometriosis.”

Endometriosis can have a profound effect on a woman’s fertility in many different ways. Anatomically speaking, the disease can warp and encase the reproductive organs. Scar tissue and adhesions can obstruct the fallopian tubes, ovaries can adhere to a patient’s pelvic wall or attach to other organs and chocolate cysts can also form on the ovaries. All of these things can impede conceiving naturally. Endometriosis can also be found in the recto-vaginal area of a patient, making sexual intercourse extremely difficult. Also many women have a lot of pain and bloating around ovulation, which also makes the actual act of trying to conceive quite uncomfortable.

There are many more elusive ways endometriosis can impact infertility. Dr. Jeffrey Braverman, a Reproductive Immunologist, gave a fantastic presentation about “silent endometriosis” at the last EFA Patient Seminar. He talked about how he sees patients who have been through years of infertility treatments with no success and no official diagnosis. These patients have issues ranging from never being able to conceive at all, to conceiving and suffering recurrent pregnancy losses, to having poor implantation rates in an IVF cycle. He believes this failure to conceive is due to an altered state of the patient’s immune system, which many times is linked to endometriosis. Many of his patients complain of no pelvic pain or other classic symptoms of endometriosis.  Yet, he is able to use other methods to take a clinical look at whether or not their inability to conceive is endometriosis related.
One of the many tests Dr. Braverman performs on a patient is measuring her cytokine production.  Elevated levels of certain cytokines in a patient can indicate endometriosis. The peritoneal fluid of an endometriosis patient can be saturated with these inflammatory chemicals. This same fluid makes up the follicular fluid which encases the eggs. Cytokines can adversely affect their quality. Many endometriosis patients also find they suffer from low ovarian reserve for their age.  A recent study, sited at last year’s EFA Medical Conference by Dr. Jamie Knopman, found that women who did not have endometriosis, who used donor eggs from women with endometriosis, had a much lower rate of achieving a healthy pregnancy.

The presence of endometriosis can also affect the patient’s tolerance to allow an embryo to thrive in her body. Dr. Braverman talked about how the embryo is seen as “foreign” to the mother’s immune system due to the male sperm component of the embryo. If the patient is using an egg or embryo donor, those components are also seen as foreign. In a healthy patient, immune privilege is given to the embryo, so the body does not reject it.  Inflammatory and autoimmune conditions, such as endometriosis, can disrupt the mother’s immune privilege, leading to the inability to conceive or achieve a healthy pregnancy.  He has also found that endometriosis has its own HLA genetic finger print. There are three common HLA haplotypes that occur with endometriosis that can be tested for.  If patients test positive for these haplotypes, it is yet another indication that endometriosis is the cause for the otherwise unexplained infertility.

Dr. Braverman knows that when patients have no pain, there aren’t a lot of doctors who are going to diagnose them with endometriosis. Most doctors do not have the immunological understanding of the relationship between endometriosis and recurrent pregnancy loss and infertility. He has sent suspected endometriosis patients to various excision specialists in the NY area, like my surgeon and EFA co-founder Dr. Tamer Seckin, who after excision surgery, were diagnosed with Stage 4 endometriosis. Elevated FSH levels and low AMH levels as well as a family history of endometriosis can also be indicators of the disease.  Also many patients who have adenomyosis, which usually can be spotted on ultrasounds or MRI’s, often also have endometriosis as well.

I wish every gynecologist and reproductive endocrinologist had this information. It is important that patients struggling with infertility get proper and timely care. Dr. Braverman stressed that excellent excision surgery only improves a women’s fertility. He has witnessed a significant improvement in egg quality and embryo quality once the majority of the endometriosis in the pelvic cavity is removed, which then removes the cytokine load that the ovaries are bathing in. The removal of the disease also helps with the immunological implantation issues and helps the patient develop a tolerance for the embryo. Excision surgeons routinely see patients go on to get pregnant after surgery.  Dr. Braverman also finds that many of his patients thrive with surgery coupled with immunological therapies and fertility treatments.

This week is National Infertility Awareness Week. Endometriosis is one of the leading causes of infertility in women.  Infertility is a devastating hardship. The medical community and the endometriosis patient community need to be aware of the pervasive ways endometriosis can impede conception. Patients need to be diagnosed and treated at an earlier age to try and boost future fertility. Fertility preserving treatments such as egg freezing also need to be covered by insurance companies for endometriosis patients as well as routinely recommended by doctors.  As heartbreaking as it is to say, for me and my friends, it might be too late. But it is important for this information to get out there to help future generations of patients and to raise the standard of care for all.

To see Dr. Braverman’s presentation on Silent Endometriosis check out this link:
A version of this post was also written for Dr. Tamer Seckin's Blog.

Sunday, April 20, 2014

My Infertility Story

This article was originally posted on Everyday Health
It is difficult to describe to the fertile world what infertility feels like and the profound and lasting impact that it has on your life.  I have been struggling with infertility for over a decade, and I work as an infertility counselor and advocate. Yet I still have trouble putting into words the pain and loss that struggling to conceive has brought to my family. A friend of mine from the infertility community described infertility perfectly in two words: soul crushing.

My husband and I married in our early 20s.  For the first two years of marriage, I was on birth
See this young bride?
Already unknowingly pretty infertile.
control, but we knew we eventually wanted a big family. When I was 24 I had my appendix removed, and after skipping a few birth control pills while in the hospital due to my surgery, I decided to stay off the Pill entirely. For the next two years we had no “happy accidents” and in fact my periods became quite painful.  I thought it might be time to check in with my gynecologist. I had a sinking feeling that something wasn’t right.

My gynecologist told me it was normal to have terrible periods and painful ovulation, that I had a “low pain tolerance” and that I was overreacting. She asked to see me again in 6 months and told me not to worry, that I would be pregnant in no time. I also got a lecture on how stress and anxiety could hinder pregnancy. She told me to “just relax.”

For the next 6 months my husband and I tried REALLY hard to get pregnant. I peed on every ovulation predictor stick I could find. I charted my basal body temperature and noted my cervical mucus. I slightly elevated my hips for at least an hour post-coitus. And of course, we made sure NOT TO STRESS OUT. I did not get pregnant, and my periods were getting worse. I went to my gynecologist’s office 6 months later and said I wanted a referral for a reproductive endocrinologist. 

I was officially worried. What if we could never have kids? We didn’t know anyone else at the time going through infertility. My husband came from a large family, so I was sure our trouble conceiving was my fault. I felt guilty and scared. All of a sudden, something that I took for granted all this time was so uncertain. All around me friends and family members were getting pregnant, some with their second and third babies. People kept asking us casually in social situations the heart-breaking question, “So, when are you guys going to have a baby? Come on! What are you waiting for?”

I remember sitting in the reproductive endocrinologist’s office with my husband for our first appointment. I felt physically ill. I felt like a failure for not being able to do what so many women do effortlessly. I felt alone. I felt broken. What if I couldn’t be fixed?

To escape I read Harry Potter. At least I
didn't have Voldemort chasing me.
That day was the start of a new era in our life--infertility treatments and all that comes with it. My reproductive endocrinologist’s office became my home away from home.  In the span of six years I had 3 IUIs, 3 IVFs and 34 embryos tested and I suffered 4 miscarriages. I was finally diagnosed with endometriosis, which explained my painful periods along with a host of other problems that doctors could never explain.   I was also diagnosed with a balanced translocation, a genetic issue that causes the overwhelming majority of my embryos to miscarry.

In an ideal world, making a baby is a decision between two consenting adults.  Sex is meant to be an intimate and tender occurrence. When you struggle with infertility, making a baby is not a private affair anymore; it is a stressful, scientific experience now shared with receptionists, doctors, nurses, drug companies and ultrasound technicians.  For years, my life consisted of daily hormone injections and vaginal ultrasounds, speaking with surgeons and geneticists, and fighting with insurance companies.

Our whole life became a cycle of waiting. We waited to get approval from our insurance company in order to proceed with our IUI or IVF procedures. We waited for my medications to arrive. While going through a medicated cycle, I waited every morning in the reproductive endocrinologist’s office
Sad about our wedding anniversary & no baby
I convinced my DH to go to Trapeze School.
to get monitored. I waited that afternoon for the phone call to see what medications I had to use that night based on my tests results that morning. I anxiously awaited my next appointment to see how I was responding to the medications and see if I could go through with the procedure. After every IVF, I waited to see if our embryos that were formed were healthy. Most often they were not, due to my genetic translocation. If I was lucky enough to be able to have an embryo to transfer, I waited to see if the embryo was going to turn into a healthy pregnancy. Then I waited to see if the pregnancy test results were positive.  Twice I miscarried after getting positive results.

My husband and I were finally able to conceive our daughter with the help of our reproductive endocrinologist. We are incredibly grateful for our daughter, but I still feel sad for all we have gone through.  Struggling with infertility changed us.  We do not take life for granted and we do not sweat the small stuff. Yet, those stressful years always seem to be lurking in the shadows. 

April 20-26 is National Infertility Awareness Week. According to RESOLVE’s website, “Infertility affects 7.3 million people in the U.S. This figure represents 12% of women of childbearing age, or 1 in 8 couples.” Spreading awareness of infertility is critical. Patients mustn't feel alone like I did.  The general public must learn to be sensitive toward those who are struggling with infertility. Don’t dismiss their pain by saying, “Don’t worry, it will happen,” or “You can just adopt.” It may or may not happen for them; you do not know. They may end up adopting, or using an egg, sperm or embryo donor or even a surrogate. They may choose not to pursue other family building options after infertility. But that doesn’t mean they are not still hurting.
Me and my friends and fellow advocates at Advocacy Day!