science of us

My Life With Endometriosis

Photo: bymuratdeniz/Getty Images

My first winter in New York, I was at the gym and on the tail end of my period, when I got a sudden, very sharp pain in my abdomen — it was so strong that I actually fell off the treadmill. It was scary. I remember I went home and did everything possible — took painkillers, smoked a bunch of weed, took a bath. Nothing helped. I went to work the next day, but eventually went to urgent care, and the doctor told me I had a ruptured ovarian cyst and told me to get an ultrasound. That was the beginning of a very long process.

I was officially diagnosed with endometriosis in 2014. There were signs and symptoms leading up to it for a long time, and my mom had it, so I knew what it was: Basically, endometriosis is a condition where the lining of your uterus goes rogue and decides to start growing elsewhere in the body. Usually, this happens in the ovaries, fallopian tubes, and general pelvic area, but it has been found elsewhere, in my case on the bladder and bowels.

I went to a million doctors. Each one had a different opinion, which is still true today, and even now, after my second surgery. One said to just watch it, one said the only way to get rid of it was a total hysterectomy — at the time, I was 27 and single. One told me I needed surgery ASAP. It was so confusing, and I was totally by myself in the city. That all started in February, and in August that year I had my first surgery.

I had a really big endometrioma, which is the kind of cyst that is caused by endometriosis. We had just been watching it over a few months, and it kept getting bigger. I think from the time they discovered it, it had doubled in size. I had surgery with an endo specialist, which was really lucky. The thing about that process that was difficult and strange is that after surgery, there was no follow-up. There was no, “Hey, this is going to come back.” And now I know they diagnosed me with Stage 4 endometriosis, which is advanced and bad. But no one told me it would come back. So I just went about my life — and then about nine months later, I started having pain again.

A lot of doctors dismiss endo as premenstrual pain, and you’re like, “No, this can’t possibly be normal. I can’t walk.” It really makes you feel crazy. It makes you feel like you’re making it up. When I try to explain the pain to other people, I generally tell women to imagine the worst period cramps they’ve ever had, multiply that by five, and then imagine living with that on an almost-daily basis. In my case, it also causes gastrointestinal issues, pain during intercourse, exceptionally heavy periods, extreme bloating, chronic fatigue, and depression.

The pain is truly debilitating, and the lack of information and solutions can be extremely depressing and anxiety-inducing. I feel like I’m often in the level of pain that would have anyone else visiting the ER, but since I know there’s not much anyone can do, and because endo patients are often treated like drug-seekers, I just grin and bear it and self-medicate at home (not to mention, a visit to the ER is not cheap). I honestly can’t imagine anything worse. But then again, I’ve never given birth, so who knows.

By the time my symptoms came back, I was with my then-boyfriend (now-husband), so at least it felt better to have a partner in the process. Birth control is a no-go for me — I get all these awful side effects — so we explored a lot of alternative options, like acupuncture and diet changes. Since then I’ve been gluten free. That kind of helped for a while. Around that time, I had an ultrasound, and they found another very small cyst, so we started watching that. It slowly got bigger, and more started developing, and then shit hit the fan early this year.

I had the most gnarly period. I had blood clots so big I thought I was having a miscarriage and freaked out. It was crazy. And then in March, I had a period that was so debilitating. Ovulating for me was like having another awful period, so two weeks out of the month I was debilitated. From there it started getting worse and worse, and nothing was helping.

A lot of this year has been trying to figure out the best treatment. People with endo will get 15, 20 surgeries, and it causes all this scar tissue, which makes it even harder to get pregnant. I really try to avoid surgery at all costs. But in September, I ended up having my second surgery in Israel, because I have citizenship there. And even paying for the best specialist in Israel privately was a fourth of what it would have cost here. I was really lucky to have that option, but I can’t do it every year.

Just in the last eight weeks have I started feeling better, but I’m hyperaware of the fact that it’s going to come back.

By this point, I’ve seen so many doctors, and the only common denominator they all share is that each one has said, “Move up your timeline. If you want babies, start trying.”

My husband and I know we want a baby, but we don’t want one now. The doctor who did my more recent surgery told me the best option for getting pregnant is within a few months of getting surgery, which was really stressful to hear. The last thing I wanted to think about was getting pregnant. I just wanted my life back. I just now am able to work out again. And at the same time, I just applied to a grad-school program. So it’s this really weird space where I’m like, “I’m going to apply to this thing, but I could very well be pregnant by the time it starts — and then how will I go to school and have a kid and be working?” I would make choices completely differently if I didn’t have endometriosis.

I’m self-employed, which is really, really lucky. I work part-time in many different things, which allowed me a lot of flexibility in the last year. There are days when I can get up and work two hours a day and still be able to pay my rent, which I’m so grateful for. I used to work a 9-to-5 fashion job, which was more like 8 to 8, and I wouldn’t have been able to do that. I have my own line of handbags, and for a long time I was doing pop-up markets and all sorts of sales, which has been on hold for about a year, because the physicality of being able to set up a booth and schlep all that stuff, I can’t do it. So I have my shop online and I promote it here and there. And then another business I started in parallel is that I teach art to kids, which is super fun.

Another thing I think endo has played a part in is in understanding that if something doesn’t bring you joy, don’t do it. When I’m teaching, I forget I’m in pain for two hours.

Now, I would say I’m kind of able to live my life. I have a little bit of pain during ovulation and my period, but mostly it’s just exhausting and slightly painful. Surgery with a specialist really helps, at least in the short term.

I try to avoid painkillers. Unless it’s for surgery I won’t really take narcotics. There’s a history of addiction in my family, and I don’t like the way they make me feel. The issue with taking ibuprofen or other over-the-counter painkillers is that when you’re in pain 24/7, you’re just taking an amount that isn’t healthy and that will wreck your gut. So, honestly, I’ve found a lot of cannabis products, which is tricky, because it’s not legal in New York. But I’m from California, and I was in Colorado last year, and that was mainly what I was doing.

I know Whoopi Goldberg, who has endo, has a whole line of cannabis products that treat menstrual pain. It’s really the only thing that helps, and it doesn’t have side effects. Often when you take ibuprofen it upsets your stomach, and everything is so close physically, and endo really affects your digestive system, so you really don’t want to do anything else to upset your stomach. It’s a really shitty Catch-22. New York is so far behind most other places in terms of legalizing marijuana, and only last year did it become legal for chronic pain patients. Before that it was even more highly regulated.

I have lost hope that things will change in my reproductive lifetime. But there’s a genetic component, and if I have a daughter I hope — I don’t know if a cure is the answer, but I hope for more awareness and education. I follow a lot of endo pages and groups, and I know that the U.K. and Australia are much more advanced in regulating how patients are treated. Most doctors are just so clueless, and they mistreat it, which does more damage.

I’m super lucky to have the most amazing support system in the world. But still. Last year, even in my part-time employment, it took me months to say to my employer, “I’m really sorry, I have this thing.” I’m reluctant to be like, “Oh, I’m on my period,” because that’s not received well, and it’s like, yeah, lots of people are on their period.

Even my dad, who is my No. 1 fan and one of my closest friends, I think as a man it took him a really long time. He read an article about Lena Dunham and called me and was like, “I kind of get it now!” People like Lena Dunham, other celebrities coming out and talking about it is helpful, because it is dismissed a lot of the time.

For about eight weeks over the summer I run the art program at a Brooklyn day camp, and it came up with one of my co-workers. I was really suffering and I had to tell my employers this summer that it was going to be tough, because I put off surgery so I could do this job. But I met a girl who had endo too, and we started texting each other every day, like “How are you doing?” It’s your own little cheer squad. But it helps.

In the darkest of times I joined a lot of Facebook groups and followed a lot of Instagram accounts sharing experiences, and for the most part that’s really good. I do remember that after surgery when I was really focused on feeling better, I had to unfollow a lot of those accounts because I felt like it was a little dark. I’m a huge believer in energy and the fact that your outlook attracts your reality.

After my second surgery, I’m just much smarter. I know more about semi-preventative stuff, so I’ve been going to acupuncture when I’m on my cycle, which supposedly helps with blood flow, which may prevent cysts from coming back. I’m on a diet where I don’t eat gluten or very much dairy, and I’m trying to stay off refined sugar. I want to keep doing things like that.

We’re kind of trying to get pregnant, or at least not preventing it anymore. We actually got married a few months back at City Hall and are having our official wedding in Israel in April, and I applied to grad school, so I’m like, Am I going to be pregnant in my wedding? Things could really go either way. So 2018 is … I have no idea. I really hope to feel good. I’ve gotten better at listening to my body.

My Life With Endometriosis