The thought never crossed my mind. In all my years working in the fertility field, I never guessed I might receive an infertility diagnosis. It’s an odd thing how the mind plays tricks on you, or maybe it simply prevents you from living out a trauma before it happens.
In December of 2019, my husband and I finally decided to pull the trigger on trying to get pregnant. Growing our family and becoming a mom is a lifelong dream of mine. Full of excitement that this was finally my turn to get pregnant, we did not dwell too much on the fact that something could go wrong.
The first week of March 2020 we had a chemical pregnancy loss, and I started to notice a new, and very annoying, burning sensation in my pelvic area. Since I had witnessed so many couples wait too long to see a fertility doctor, I immediately emailed Binto’s board member and RE physician, Maureen Kelly. That moment marked the beginning of my road to an endometriosis diagnosis, infertility, and pregnancy loss.
The larger scientific and reproductive endocrinology community knows little about endometriosis, and what we do know still remains a large and complex puzzle. Women’s health issues and diseases tend to go underfunded (the likely reason why we have so little research on endometriosis). What we do know is that endometriosis exists and about 1 in 10 people suffer from this debilitating disease.
Endometriosis is a disease where the cells of the endometrium are found outside the uterus in the peritoneal cavity or attached to other organs like the lungs, bowel, bladder. This is a problem because when these endometrial cells are found outside of where they are supposed to live—in the endometrium of the uterus—we get an inflammatory reaction which leads to an inflammatory response. You can often see this inflammatory response on laparoscopy as a brownish mixture, and it is filled with immune response cells like macrophages, white blood cells, and an increase in cytokines (proteins).
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This is a big problem for two reasons:
- It coats the eggs, and it can impact the tubes and sperm.
- The inflammatory response can cause the inability of an embryo to implant or grow (early loss or failed transfer cycles).
Many women present with pain as the primary symptom of endometriosis. However, there are other symptoms that are key to identifying the disease:
- Significant pain with menstruation
- Pelvic pain outside of menstruation (often said to feel like burning or icey/hot)
- Pain with ovulation
- Pain or pressure during intercourse
- Cramping after an orgasm (dysorgasmia)
- Brain fog
- Chronic fatigue
- Pain with bowel movement and urination
- Infertility and pregnancy loss
Not all women with an endometriosis diagnosis struggle with infertility, but about 50% of infertile women are known to have endometriosis. Even more fascinating is a new theory on unexplained infertility, which hypothesizes that many of these women may suffer from “silent endometriosis.” We know that endometriosis is highly linked to our immune system and often occurs in women with other autoimmune diseases, yet we do not have enough data to prove this theory. To this day, the scientific community still cites retrograde menstruation as the cause of endometriosis.
Physicians face a great deal of complexity when treating infertility patients with endometriosis due to a lack of compelling and conclusive data. Not too long ago, most fertility doctors performed laparoscopies on all patients with endometriosis and infertility. A laparoscopy is a surgical procedure where the physician can visualize and remove (excise) the endometrial cells. While we still use this technique today, studies show that laparoscopy will not necessarily increase the chances of conceiving and could, in some cases, hurt your chances. This is due to the high risk associated with a surgical procedure (risk of damage to the ovaries and other reproductive organs). So, if we move away from laparoscopies, what treatment options are available?
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- IVF is the best treatment option in terms of pregnancy success rates in women with endometriosis. While some studies show that the drugs from stimulation might worsen endometriosis, the data is not conclusive and in this case, IVF is still the best option.
- Use of Letrozole for both stimulation and transfer cycles. Letrozole works well for women with endometriosis because it helps with the inflammatory impact of endo on both eggs and the endometrial lining.
- The Receptiva test and use of Lupron suppression. Unfortunately, this test is not widely used because the company has not published enough studies to indicate that this is indeed an effective test and treatment for women with endometriosis or unexplained infertility.
- Surgery: some women do need surgery in order to help with pain and remove large endometriomas from the ovary, tubes, or uterus.
Overall, endometriosis does impact fertility and for many patients, it takes years to even get a diagnosis. The biggest unknown about endometriosis and treating infertility is just that: the unknown. We still do not know the primary cause of infertility with endometriosis. Is it an egg quality issue, or is it an issue with the potentially altered environment of the endometrial lining of the uterus? One thing I do know is that you need to find a doctor who is up-to-date with the latest methods and willing to work with you on battling infertility and endometriosis.
After going through my first round of IVF in October of 2020, we got three normal embryos. In December we transferred one back and got pregnant only to miscarry at seven weeks. My husband and I still hope to grow our family using my eggs and my uterus, but we know that those plans can change. In the coming months, we will start a new stim cycle to get more good embryos and we plan to use Letrozole for our transfer rather than embark on the surgical path. I hope that some of the research I’ve shared with you, and my story, will help you on your own path to conception.
Suzie Devine is a women’s health nurse, founder of Binto, dog mom, pregnancy loss survivor, and infertility and endometriosis advocate.