A year ago, I had no idea what endometriosis was. After months of rather successfully attempting to ignore that I was having pelvic pain, I finally went to Callen-Lorde Community Health Center in April. Thanks to the impeccable care of Jennifer Johnson, who I recommend to anyone and everyone in NY, I was diagnosed incredibly fast.

Over the past year, I have talked with wonderful people and read numerous stories on listservs and the internet of the over 5 million mostly women and girls in the U.S. alone (over 70 million world-wide) who are living with endometriosis. Stories of living in pain for over 5 years before finally being diagnosed. Of multiple surgeries, thousands of dollars, negotiating relationships and sex and overall living with chronic pain. It’s not a surprise to those of us that are female-bodied the sexism that remains present in healthcare, and when it comes to pelvic pain more often than not, women are told it’s in their heads. Yes, the hysto/hysteria sexism in the medical world is far from gone, and the treatment and prevention still lags behind.

The worst part–how little is still really known about this illness that affects millions of people everyday, and how more often than not the prescription is to suppress one’s body in order to feel relief. Well, I didn’t choose this route. Everyone has to make their own way through this, and for me, it’s been a long road in just this year, and I’ve been lucky, particularly over the last few months, to have met wonderful people who have talked with me for hours on end, sent me zines, referred me to an acupuncturist, held my hand (over the phone) as I went in for surgery a few weeks ago (before my insurance ran out :)) with specialists in Atlanta (I am lucky to also have family in Atlanta so I stayed with them) at the Center for Endometriosis Care (CEC), and overall embraced the need to change my life to acknowledge that I’m living with a chronic illness. It hasn’t been easy, and at the same time, I know that it’s also done an amazing thing: it’s relieved me of feeling this intensity of obligation to the detriment of my own health and well-being. Something many of my friends and loved-ones do as well, and is often the culture of non-profit life. So, changes have come, and are continuing.

So, I’m here to do my part in what little part of the universe this forum holds, and let people know about endometriosis in honor of Endometriosis Awareness Month. It is fairly well established that endometriosis has a direct connection to environmental toxins and dioxins, so add that on to your environmental justice call.

Dioxin is a toxic byproduct of industrial and consumer processes that involve chlorine or incineration of chlorine-containing substances, such as PVC (polyvinyl chloride, commonly known as “vinyl�) plastics. The main sources of dioxins are medical waste incineration, municipal waste incineration, chemical and plastic manufacturing, some pesticides, and pulp and paper bleaching. PVC disposable medical devices, such as IV bags and tubing, are a major concern because they become medical waste, which is often incinerated. Dioxins formed during incineration are released into the air and travel via air currents, contaminating fields and crops. Cattle and other livestock eat the crops and the dioxin enters their tissue. Humans then eat the contaminated animal products.

I won’t go into all the details of choices I’ve made, but I do want to say this about surgery, as I think it’s one of the most important things. So many people go to surgeons that aren’t qualified to do the surgery. They go to surgeons that laser rather than excise the disease, they go to surgeons that are hasty to remove organs and lean towards hysterectomies, and they even go to surgeons that do excise the disease, but then charge thousands of dollars. There are other options, and options in between. Some may want to take hormones to suppress the illness. Some do incredibly well with changing diet and doing acupuncture and herbs (I’m doing this as well). The choice, ultimately, is yours and the best thing is to know as much as you can to make decisions based on what feels comfortable for you and your body.

But do know this much, that if you do want to or need to have surgery, make sure you’re seeing someone who does the surgery often enough, someone who does excision and really knows their stuff. CEC joked with me that they rarely see people like me (meaning someone who’s having surgery for the first time) because more often than not, they’re seeing people who have already had three or four surgeries with doctors who didn’t know there stuff well enough.

I could go on and on about this, as it’s obviously been a big part of my life. It’s also been something I’ve kept fairly quiet until recently because it’s hard living with illness. I didn’t want to tell people I had trouble walking, or that I was often in pain. Having already had cancer earlier in my life, I know what it is to live with the stigma of illness, as well as the way it shifts relationships, and I didn’t want that. But I finally gave in to acknowledging that it is even harder walking around hiding that I’m in pain and no one can tell. Not your employers, your friends, people you flirt with at the bar–I mean, no one. It’s isolating, without a doubt, and in the past month, I’ve decided enough. Even more so, I thought, why not open it up, as I have emailed with other contributors and friends who are living with illness right now, and everyday I speak with more and more people who are just trying to do the best they can juggling all of the realities of life while living with a chronic illness. Enough of hiding, and enough of staying quiet about it all because it really does me no good, and it’s also symptomatic then of participating in suppressing awareness about an illness that affects so many female-bodied people in a society that asks us more often than not to stay quiet about what our bodies do. So, enough. I hope in some small way this helps someone else and if people are interested in hearing more, let me know.