When you get your menstrual period do you:
- get intense pelvic pain that isn't helped by rest, heat or taking over the counter painkillers (like ibuprofen or naproxen)?
- experience pain or bleeding during or after sex , and not just when you're having your period ?
- experience irregular bowel movements or stomach problems?
- get back pain or leg pain with your period, or bloating that feels uncomfortable and irregular?
- have periods that are very clumpy, heavy or irregular?
If so, you might want to talk to your doctor, and have them evaluate you for a condition called endometriosis.
Endometriosis, which affects roughly 1 in 10 people with uteruses of reproductive age, occurs when tissue like the tissue that grows in the uterus grows elsewhere in the body. Endometrial tissue can grow anywhere from your ovaries to your bowels and, in even rarer cases, in places like your lungs. When you get your period, that endometrial tissue that exists outside of your uterus falls off, just like the tissue in your uterus, except when it grows elsewhere in your body, it has no exit door. This can lead to lesions and scar tissue that can cause painful inflammation, symptoms like those in that list up there, and even infertility.
Endometriosis is often identified by the stage it's in, from stage 1 to stage 4. The more advanced the disease is on your reproductive organs, the higher the stage. But some patients with relatively little disease on organs like their ovaries, but a lot of active disease on places like their bladder might be diagnosed with a lower stage. And pain levels from endometriosis don't necessarily correlate to how advanced the disease is. Symptoms usually occur during or around periods but can last days, weeks, or even months, depending on the case.
Unfortunately, because relatively little is known about the disease, and because reproductive health and female pain are often back-burnered and disbelieved by the medical community and society alike, an endometriosis diagnosis takes on average ten years from when first symptoms present.
Endometriosis is especially misdiagnosed or undiagnosed in adolescents. Teens complaining of symptoms are often told that it’s all simply part of “being a woman.” Doctors still sometimes wrongly assume that the disease doesn't occur in adolescents and overlook symptoms that could lead to early diagnosis and treatment.
I have endometriosis. I was diagnosed roughly seven years after my first symptoms.
For seven years I was in and out of the OB/GYN with mystery symptoms. I had ghost pain and sonograms that revealed nothing, missed, or excessively long periods, mind numbing cramps and nausea. My pelvic exams were excruciating, to the point where I almost passed out after one. I experienced bleeding, and pain for days after enjoyable, consensual sex. In college my cramps were so bad, I got out of the shower one night, and hit the deck. In the ER they told me it was likely a UTI, but my test results told a different story, and I later learned that this is a common misdiagnosis for people with endometriosis. Finally it got to the point where my cramps were coming on a full two weeks before my period, and staying long after. I essentially had no relief from pain, anywhere in my cycle.
It was then, at 22 and doubled over in pain, that someone finally mentioned endometriosis to me. After cycling through a few regular OBGYNs and seeing no results, I decided to see a specialist. He agreed that all my symptoms pointed to endometriosis, and recommended surgery to cauterize the lesions. But the process didn't end there. What makes treating endometriosis so hard is that there is a trove of misinformation on how to treat it, even among the medical community. After my surgery I was better, but getting my period still set me back. When my pain persisted weeks, and even months on end even after what I was told was a successful surgery, and after I was fed hormones that made me depressed, bloated, and gave me hot flashes, I turned to online support groups for people with endometriosis, like Nancy's Nook.
What I found was hundreds of women with failed cautery surgeries who, like me, had been fed harmful drugs that left them no better, or worse than before. But I also found hope. Many women were finding relief, even after failed cautery surgeries, from a procedure called excision surgery, which involves the cutting away of disease, as opposed to the burning of it. Endometriosis is like an iceberg - the stuff on the surface is only the tip. So, when you cauterize or laser it off, you singe the top without addressing the root. Endometriosis feeds off the presence of estrogen , but even with hormone suppression the disease can continue to progress, because endometriosis produces its own estrogen.
There are a select number of excision surgeons in the U.S., and it's important to go into any discussion about endometriosis care with your doctor armed with the most up to date information about excision surgery, and what to steer clear of when treating your endo. Endopaedia and the Seckin Endometriosis Center are great resources, as is Dr. Seckin's book.
Always remember: you're never alone. Chronic pain is defined as pain that lasts longer than six months, and it affects roughly 100 million Americans. And while endometriosis is a chronic condition, and there is no cure, surgery is regarded as "curative", meaning it can drastically improve your quality of life, and significantly reduce, or eliminate your pain.
I was immensely lucky to find an excision surgeon close to where I lived through Nancy's Nook. He had 30 years of experience, and testimonials from women all over the country who were pain free after his surgery. He gave me hours upon hours at pre-op appointments and over the phone before I went in for surgery. He showed me before and after photos of surgeries he had done before, and through online support groups I was able to talk directly to patients of his about their experiences, and their success with him. It's incredibly important going into a surgery that you do your research, and you press your doctor to prove that they have done theirs.
When I awoke from my over four-hour surgery with him I was in agony - but the searing burning pain was gone. The throbbing cramping was nowhere to be found. It was all just surgical pain; this pain I welcomed, it meant I was closer to getting better. My doctor later explained to me how the cautery had failed to address any of my disease, and even sealed active disease onto my bladder exacerbating the problem. My uterus and my bladder had started to grow together, and I had lesions everywhere from my colon to my pelvic sidewalls. I'm now three months out from surgery and I am getting better every day. The recovery process from such a large surgery is long, and difficult at times, as is recovering from being incapacitated and in pain for any length of time, and all of that comes with its own aches and pains. But I'm optimistic for the first time in a while. I'm running errands and playing with my new puppy on nothing but a few Advil or Tylenol, and I'm not constantly fatigued or running to the bathroom to pee four times an hour.
My experience with endometriosis may look nothing like yours. For some people with endometriosis, flare-ups only occur around their periods, and for others the pain is more persistent throughout the month. Some people find the relief from changing their diets, while others swear by exercise. If medical marijuana is legal in your state, high CBD strains, edibles, and oils can all help manage inflammation and pain. Nothing is a replacement for proper medical care, though. Endometriosis is usually treatable with surgery, but chronic pain affects everyone differently. Many people, even after a successful excision surgery, require physical therapy for things like pelvic floor dysfunction, or other conditions that can result from experiencing long-term chronic pain or incapacitation, and it's important to remember that your treatment should reflect your unique set of needs and symptoms.
Pain without a known source should always be investigated. That’s why it’s so important to know endometriosis exists, and to listen to your body. Whatever your gender , it's not "just how it is" for any part of the body to be in pain.
If your periods hurt more than you feel is normal, or to a degree you just can't live your life, speak up. If you notice bleeding or discomfort after sex, make note of it. Talk to your doctor, and be wary of a healthcare provider who tells you you’re just having bad periods, or that it’s all part of the ride. Know that endometriosis usually cannot be seen on an ultrasound, and cannot be felt during an internal exam, so if your doctor says, as mine did, that “Everything looked and felt okay!” but the pain is still there, press for more information and better care. Get a second, even a third opinion, or seek out a specialist.
The truth of the matter is, I knew for years that something was wrong with me. But I had never heard of endometriosis, so I listened to my doctors who said my tests all looked normal, and left doctors appointment after doctors appointment frustrated and sad.
Endometriosis has a long and colorful history, and disbelief is a big part of it. Women with endometriosis were diagnosed with everything from hysteria to witchcraft, and it's believed that what Freud once described as hysteria, was in fact endometriosis. Treatment for these symptoms, even up through the time of Freud included things like hanging women upside down and using noxious gases.
I’ve written about the disbelief of female pain, and how this phenomena contributes to the delayed diagnoses of endometriosis and other diseases in women. When you have endometriosis you are surrounded by people, doctors and friends alike, who are quick to assure you that your pain isn't that bad, that it’s all in your head, and that it’s just what getting your period is like. Quiet these voices, listen to your own, and listen to your own body.
Be your own advocate, speak up, and insist on the reality of your pain. You deserve a quality of life, and your reproductive health should be taken seriously by your peers, your doctors, and you. The earlier endometriosis is diagnosed and treated, the better chance treatment will work, and the better chance you will have at preserving your fertility , and health long term.
For more information on endometriosis and treatment, check out the Endometriosis Foundation of America.
