This is a firsthand account submitted through SWHR’s Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.
I have suffered from endometriosis, polyendocrine metabolic ovarian syndrome (PMOS, formerly PCOS), and infertility for many years without answers, an experience shared by far too many women. I believe that medical staff making patients better aware of these issues could greatly reduce patient suffering.
I have had health issues since I started my period at 13; most notably, painful and heavy periods. It wasn’t until I was 23 that I was diagnosed with PMOS. And it wasn’t until I was 38, after two miscarriages, four failed fertility procedures, and many other health issues, that I was diagnosed with endometriosis.
Unfortunately, my doctors dismissed the symptoms I brought up and told me I just had to “keep trying” to get pregnant. But I knew that something was wrong. It was a friend who recommended an endometriosis specialist, who was finally able to diagnose and treat my condition.
I recently underwent excision surgery and found out I had extensive stage 3 and 4 endometriosis. This explained not only my infertility issues but also many of the unexplained health issues I’ve dealt with for years, including back pain, chronic inflammation, and digestive issues. I’m grateful that I have a new lease on life now, with hopefully long-term relief from the disease.
But I’m also sad that it took so many years, specialists, miscarriages, and much effort on my part to get a diagnosis – sad that not even the experts in women’s health I saw, including fertility doctors and OB/GYNs, brought up endometriosis and instead dismissed many of my symptoms.
I’m especially disheartened that so many other women are dealing with chronic health conditions with no answers. According to a National Geographic article, “Current estimates show endometriosis affects some 11 percent of American women, but many more likely remain undiagnosed, especially as it regularly takes up to a decade to get the label.”
Sadly, this isn’t surprising; for me, it took 25 years since my symptoms began until I got a diagnosis. I hope that this statistic can change. I can only think how much sooner I might have found answers if just one of the many doctors I saw had led me in the right direction.
To women’s health providers: Please educate your patients about PMOS and endometriosis and provide them with a list of specialists that you can refer them to. Consider sharing the following.
- PMOS vs. Endometriosis: There is some overlap in symptoms, but a primary symptom of PMOS is missed periods, while a primary symptom of endometriosis is painful periods.
- PMOS as a whole-body disease: Patients are often blamed that their weight gain is the cause of the disease, while weight gain is actually a symptom of a larger physiological problem. Similarly, giving a patient birth control may alleviate the symptoms, but does not treat the underlying causes of those symptoms. More long-lasting solutions should be discussed, as well as referring patients to a nutritionist.
- Endometriosis as a whole-body disease: Similarly, endometriosis affects not only the reproductive system but is related to hundreds of other inflammatory health conditions and thus impacts the entire body. There are two main types of endometriosis surgery: ablation, a temporary treatment which removes just the growth; and the excision method, which significantly lowers the chance of endometrial growth reoccuring. Women with endometriosis may also choose to discuss with their provider taking progestin pills, rather than the more common estrogen birth control pills, since endometriosis is an estrogen-dependent disease.
To patients: If you feel that something is wrong, listen to your intuition, and keep searching until you find doctors who can help.
To providers: Many times, I was told that my health problems were just part of being a woman. It wasn’t until surgery that I finally found answers, but my condition should have been diagnosed much earlier. Please listen to the thousands of suffering women who are calling out to you for relief. Please make this an issue that you ask and educate your patients about. You may not save a life, but you will change one.
Erin’s story has been shared on other blogs and podcasts.