No one could tell Georgie Barden why she wasn’t getting pregnant. For four years, Barden, 45, of New York City, went to 10 of the best reproductive endocrinologists (fertility specialists that are the only doctors trained in providing fertility treatments using assisted reproductive technologies) in the nation in her quest to have a child.
Seeking Out Specialists and Infertility Solutions
Barden searched for other reproductive endocrinologists?she should see?through support groups and networks?before she tried in vitro?fertilization (IVF) again.? “It was scary because it felt like throwing the ball into a roulette wheel and hoping I picked the right one,” she says. ?She ultimately picked Jeffrey Braverman, MD,?a reproductive immunologist who did blood work on her immune profile,?despite lack of symptoms. He suspected?silent endometriosis, when the disease does not cause obvious symptoms, such as heavy periods, abdominal or pelvic pain. (Level of pain is not always associated with degree of endometriosis, a chronic disease in which endometrial-like tissue grows outside the uterus on other organs.)
She was referred to Tamer Seckin, MD, an?endometriosis?specialist, who?confirmed Dr. Braveman’s?suspicions through laparoscopy. During the same procedure, he?excised?her endometriosis lesions.?Subsequently, she had a? good response to IVF?treatment and is now the mother to a 3-and-a-half-year-old son, Connor.
How Can Endometriosis Be 'Silent'?
Endometriosis usually makes itself known with intense menstrual cramps, diarrhea, painful urination and bowel movements, excessive menstrual bleeding, and pain during intercourse. Sounds like it is shouting its presence from the rooftops, right? Silent endometriosis occurs when a patient has no overt, typical symptoms, so healthcare professionals don’t think to check for it. Research published in the Journal of Assisted Reproduction and Genetics suggested that 20 to 25 percent of endometriosis patients are asymptomatic. The only way some of these women discover the disease is when they have unexplained infertility.
“A woman is trying to get pregnant for a while, and the physician can’t figure out why she isn’t. About 30 percent of those women with unexplained infertility will have silent endometriosis,” says Lora Liu, MD, an?endometriosis specialist with the?Seckin Endometriosis Center in New York City.
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Endometriosis and Infertility: What’s the Connection?
According to the Endometriosis Foundation of America, fertility problems are the sixth fundamental symptom of endometriosis. It can cause these issues:
- An Altered State of the Woman’s Immune System “This can create inflammatory reactions in the pelvis, which can be damaging to the ovaries or the follicles. It also affects the woman’s tolerance to allow an embryo to thrive in her body,” explains Dr. Liu.
- Endometriosis on the Fallopian Tube This can prevent the transfer of the egg from the ovary to the uterus.
- Chocolate Cyst Also called an?endometrioma, this is a blood-filled cyst found in the ovaries, and can be toxic to the ovaries and reduce the numbers of good quality eggs.
- Low Ovarian Reserve This means a diminished quantity and quality of eggs.
Don’t Manage Endometriosis With Medication When Dealing With Infertility
The gold-standard treatment for endometriosis is?excision surgery to remove the lesions. “You can manage endometriosis with medication but most of those drugs are hormonally based and will actually prevent conception. Studies have shown that if you have mild to moderate endometriosis and you have infertility, excision has been proven to increase chances of fertility,” says Liu.
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Other Ways to Get a More Timely Endometriosis Diagnosis
Liu suggests that women experiencing unexplained infertility advocate on their own behalf: “They should ask their physicians about endometriosis. Most will respond, ‘Oh, no, you don’t have the typical symptoms,' or 'We don’t see a chocolate cyst on the ultrasound.’ That doesn’t mean they shouldn’t pursue it.”
While the only way endometriosis can be diagnosed is through laparoscopy or surgery, Liu also recommends that patients ask about their levels of these:
- AMH (Anti-Mullerian Hormone) This is a marker of ovarian reserve. If it is low, it may be indicative of endometriosis
- Cytokine?Production This is?an inflammatory marker in the body. Any time there is inflammation, your cytokine levels will go up. “A lot of things can cause that, not just endometriosis, but it’s another clue that can lead us to a suspect it in unexplained infertility,” explains Liu.
- FSH (Follicle-Stimulating Hormone) This is another hormonal marker?that?may be too high. When FSH levels are high, she can even ask to get some immunological testing.
Liu adds, “If the physicians refuse to look into any of this or dismiss the patient’s concerns, I would encourage her to seek out someone who has more knowledge in endometriosis.”
A New Resource for Women With Unexplained Infertility
Even though Barden got her happy ending, she is still upset at the time and money she wasted before getting her diagnosis. “I was grateful [when I was finally diagnosed and treated] but I just couldn’t believe that no one was able to diagnose me. It was incredibly frustrating,” she says?in a video on the topic. She adds, “I don’t blame the doctors. So much is unknown!"
We’ll never know if it was the surgery, immune treatment, or both that got me pregnant. I also went to the baths in Hungary the month before because of a work trip. Ah, the mysteries!”
This led Barden to create Fertility for Me, an organization that will give patients step-by-step guidance to navigating the infertility field, with information, coaching, content targeted to the individual, and access to support groups. Barden says, “We are not focused on endometriosis — just on fertility.”