My need for support and companionship during my struggle with endometriosis and infertility 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 20s. 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 adopting or in the process of adopting. They have found peace in their decision and utter joy in their child. But I can’t help feel their doctors failed them as 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.”
How endometriosis affects fertility
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 form on the ovaries. All of these things can impede conceiving naturally. Endometriosis can also occur in the recto-vaginal area, making sexual intercourse extremely difficult. Also, many women have a lot of pain and bloating around the time of 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 due to endometriosis.
One of the many tests Dr. Braverman performs on a patient is measuring her cytokine production. High levels of certain cytokines can indicate endometriosis. The peritoneal fluid of an endometriosis patient can be full of 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, cited 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 mother’s immune system sees the embryo as “foreign” due to the male sperm component. If the patient is using an egg or embryo donor, her body also sees those components as foreign. In a healthy patient, the body gives immune privilege 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 fingerprint. 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.
The lack of knowledge about the disease among doctors
Dr. Braverman knows that when patients have no pain, there aren’t many 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 Dr. 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 MRIs, 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, done by skilled surgeons like Dr. Seckin, 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. Dr. Seckin has seen many patients of his go on to get pregnant after excision surgery. Dr. Braverman also finds that many of his patients thrive with surgery coupled with immunological therapies.
National Infertility Awareness Week
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.