Guest Post by a member of the Resolve New England community
“Your tests look normal, so it must be a muscle strain,” said my orthopedist… as well as my physician, chiropractor, and physical therapist. I had heard this explanation for my chronic lower back pain so many times from people I trusted that I started to believe it myself. Naturally, I blamed myself – my shoes, exercise, or lack thereof – but no matter what I did, the pain came back for about one week every month. At its worst, it felt like knives stabbing my sacroiliac joint, and at its best, it was a combination of numbness and sciatica. For years, I resigned myself to relying on ibuprofen, Ben-Gay, hot baths, ice packs, heating pads, and leaning on my very patient husband to walk around our home because I refused to buy a walker in my twenties.
Fast forward to last spring, and after two years of unexplained infertility, one beautifully healthy pregnancy and baby, and two heartwrenching missed miscarriages and D&Cs during the height of the pandemic, I finally heard the words that would change my life, from my new reproductive endocrinologist: “It might be endometriosis.” She was also the first medical professional to validate my pain; “You shouldn’t have to live like that,” she said. For the first time in a long time, I started to think that the pain was not my fault and was not in my head. Although one would never wish for endometriosis, the prospect of treating it gave me hope.
When I had read about endometriosis in the past, I had always written it off for myself because my symptoms didn’t exactly match the website descriptions. However, my main symptom – experiencing debilitating pain every month – did, and that was enough for me to meet with a gynecological surgeon to discuss a laparoscopy, which is currently the primary way to diagnose endometriosis.
After reviewing my history, my surgeon agreed that endometriosis could be at play. She warned me that she may not find any lesions, and that even if she did they would likely grow back within a couple of years. She also cautioned that even if I were to be diagnosed, endometriosis may not necessarily explain my infertility. Despite this information, I felt confident in proceeding with the laparoscopy since there was a chance that one or both of my conditions could be improved.
Two months later, I had the laparoscopy, and afterwards woke up alone in a room with my surgeon. With a smile behind her mask, she told me that she found and removed endometrial lesions from the back of my uterus. I gasped and teared up with joy. Then her eyes changed. She added, “You also have adenomyosis. We can take care of that when you’re done having babies.” My temporary high immediately came crashing down, and I started sobbing. In my head, the word “adenomyosis” was synonymous with “hysterectomy,” based on the small amount of research I had previously done. It felt like I was right back in that ultrasound room during my missed miscarriages, getting bad news all alone, all over again. I wasn’t even given a pamphlet about my new condition before I was sent home to recover.
Fortunately, about a month later at my post-op appointments, I found out via ultrasound that my adenomyosis was on the mild side. My doctors said that many women like me go on to have healthy pregnancies without treatment. I felt immensely relieved to hear this, as it had been about six months since my last pregnancy ended and we wanted to try again soon. Meanwhile, my back pain had nearly disappeared, which suggested that my chronic pain was most likely caused by endometriosis instead of adenomyosis, thankfully.
It has been over seven months since my laparoscopy, and I couldn’t be happier with my decision to go through with it. Although there is no guarantee that excising endometriosis will affect someone’s fertility, in my case, I’m very grateful to report that I am currently in the second trimester of pregnancy, and it feels so good to be here again.
To my former doctors who told me that my chronic lower back pain was probably a muscle strain simply because you couldn’t see anything in your x-rays, I hope you read this article. Please learn more about endometriosis and adenomyosis as some of your patients may have them and don’t know it yet. Sadly, it takes the average woman seven or more years to get diagnosed with endometriosis, so my story is common. With your help, we can get the average time to diagnosis down and save many women years of pain, stress, and, possibly, infertility.
For more information:
- The “A” word: A Reproductive Surgeon’s Take on Adenomyosis
- Endometriosis: Understanding a Complex Disease