This March, Zocdoc is honoring Endometriosis Awareness Month by doing our part to raise the profile of this widespread, yet misunderstood disease.
As part of our efforts, we’re donating $25 for every OB-GYN appointment booked on the platform from now until the end of the month to the Endometriosis Foundation of America (EndoFound), a non-profit that places particular emphasis on early diagnosis and effective intervention. If you haven’t booked your annual OB-GYN appointment yet, now could be a good time to take control of your reproductive health and support a good cause in the process. You can find more information about this partnership here.
Although endometriosis affects an estimated 1 in 10 women, making it one of the most common reproductive health issues, many women still suffer for years before getting the diagnosis and treatment they need.
And yet, the conversation around endometriosis is changing, thanks in part to women all over the world (famous and non-famous alike) who have courageously shared their personal stories.
We believe that an important part of raising awareness for endometriosis includes amplifying the experiences of the women who have it. We’re grateful that Zocdoc user Melissa O’Mahony, a 31-year-old who developed endometriosis in her teens, shared her story with us. Read on to learn about Melissa’s journey through diagnosis and treatment, plus provider advice on what to do if her experience sounds all too familiar.
The content in this post and in the links are for educational purposes only. Zocdoc does not provide medical advice, diagnosis, or treatment; furthermore, Zocdoc does not endorse or recommend any products, processes, or services. Please discuss all medical questions and concerns with your healthcare provider. The views and opinions of users expressed here do not necessarily state or reflect those of Zocdoc.
I was in high school when I first noticed something was wrong. I was having really bad periods, and they were becoming more and more painful. It was so bad, my parents had to take me to the hospital. They thought it might be my appendix, but it turned out to be an ovarian cyst.
The doctors said it could be a one-time thing, and put me on birth control. The pain went away at first, but I kept getting cysts and having really painful periods. The doctors kind of ignored it. They said “there’s a possibility it’s endometriosis, but the only way to know for sure is through surgery, and you’re too young for that. Periods are tough for everybody.” Just “suck it up,” essentially.
It wasn’t until I went off the pill when I was 27 to try and get pregnant that I went to a new doctor — a specialist — and said something is wrong. I can’t go to work, I can’t function. My specialist is a woman, and she has the disease as well. I think that gave her more compassion and understanding, because she knows how terrible it can be.
She said we’d need to do the surgery to find out whether or not I had endometriosis, so they went in and confirmed that I had stage IV endometriosis. It was everywhere, and I had a benign tumor on my right ovary, which was why I couldn’t get pregnant.
Because the endometriosis was so extensive, my doctors suggested I do IVF [In Vitro Fertilization]. We did IVF, and I had my twin girls 9 months ago. Since I’ve had the girls, my symptoms are back. I have an IUD [Intrauterine Device] now, and I take an oral contraceptive pill to manage [my symptoms].
What Should You Do if You Think You May Have Endometriosis?
Melissa’s early struggles in getting a diagnosis are unfortunately common among patients. Despite the difficulties, there are qualified doctors who can take you seriously and provide the care you deserve. A few tips to help you find them:
Feel empowered to find the right doctor for you
While OB-GYNs train to address endometriosis, not every OB-GYN has the same level of experience in treating the disease. If you’re having issues getting the care you want with an OB-GYN, consider seeing a doctor who focuses more on gynecology, recommends Dr. Shefali Patel-Shusterman, a gynecologist on Zocdoc who is based in Westfield, New Jersey.
“I don’t do the OB anymore, my practice is only GYN. That allows me to dedicate more time to each patient,” she says. “[This gives me the option to] really work on the patient and to listen to all the symptoms,” she says.
If your current provider doesn’t feel like the best match, reconsider your options. Look for a doctor who emphasizes their experience treating endometriosis — some providers highlight this on their Zocdoc profiles — to get the specialized care you need. These tips may also help you find the right gynecologist for you.
Write down your symptoms, and be specific
Unfortunately, the causes for pain can be hard to diagnose, since many disorders can cause cramping and pelvic pain. You may help your doctor rule out other potential causes if you’re specific when discussing your pain.
“Keep a very clear journal of when the pain is happening. Note, on a scale of 1 to 10, how much the pain is bothering you,” advises Dr. Patel-Shusterman. “Give the doctor a sense of how much it’s affecting the activities of daily living. Are you able to go to work? Are you able to be sexually active? Are you able to go to the gym?”
Giving your doctor more context for your symptoms may help them understand just how significant your pain is, so they may begin to suspect endometriosis sooner, and help you get an earlier diagnosis.
Never give up
Living with undiagnosed endometriosis is difficult, and it’s important to advocate for the care you need and deserve.
“Don’t accept that being miserable is normal, because it’s not ok. It’s not normal. You should never have to be in so much pain, so uncomfortable, or feel like you’re overreacting. You should trust your gut. Just keep pushing until you get someone who will listen to you,” Melissa says.