What It's Like to Have Endometriosis, Straight From Someone Who Does

An estimated 5 million women in the United States suffer from endometriosis — and we need to talk about it. In recent years, countless brave women and outspoken celebrities have begun sharing their struggle with the previously downplayed uterine disorder. That being said, those who aren't too familiar with endometriosis still have many unresolved questions.

One 29-year-old woman helped answer those questions with a recent Reddit Ask Me Anything. In addition to providing basic information about the disorder, she also spoke about her own experience, symptoms, and recent laparoscopy, a surgical procedure that examines the organs for cysts, fibroids, and the like. In sharing her painful experience, she's educating others and advocating for those who also suffer from endometriosis.

What is endometriosis? Are you in pain?

"Endometriosis is where the uterus lining grows everywhere else in the body. This includes, in my case, bladder, outside of uterus, and bowels. Yes, it's very painful and it affects a person physically and mentally."

How were you diagnosed? How severe is your pain?

"I got a cervix examination, followers by BC pills, then an ultrasound, tried new BC pills, then the surgery. I'm on a second dose of 500mg pain killers, still in pain."

Any cure for this?

"Unfortunately there is no cure for endometriosis. You either live with it, surgeries, pain medication, natural remedies, more surgery, a special diet until menopause . . . or have a hysterectomy!"

What were your initial symptoms that made you think you had endo? Was BC [birth control] a suitable fix for the symptoms?

"Well, when the extreme pains started, I wasn't on BC pills. It all started off with a bladder infection. Then I was getting PMS before my period started. This would last anywhere from 1-2 weeks. Then, for the next week I would have my period and the last week of the month would be normal, free of pain. This process repeated for 5-6 months ish (including the bladder infections and loads of UTIs).

I was put on the first type of pills, which didn't work. The pain was only getting worse waking me up during the night. The pain felt like burning wave contractions mixed with UTI pain.

My other symptoms were: Weight gain (in 6 months I gained 20kg, mostly water retention), mood swings and depression, lethargy, hair loss, low energ[y], anxiety, muscle tremors.

I was changed on 6-7 different types of BC pills. The pain is still there, it's insane, but I can't imagine what it would be like if I wasn't on them. I'm still bleeding a little though, so I have to take two BC pills a day for a week."

Have you had a laparoscopy?

"Yes, I had one endo lap 6 weeks ago. He did not remove everything as the newly grown endo tissue was simply too small to burn off, which would damage actual organ tissue. I have most of my pain on the left side with shooting pains down my left leg. This is due to endo growing on the pouch of Douglas; it's a really small [area] just in between [the] uterus and rectum and it's very hard to get in there even for some professional surgeons."

How did you find the recovery from the laparoscopy?

"The recovery was pretty easy. I was up and walking (very slow bent-over walk lol) 45 minutes after surgery. Recovery took one week. Got my stitches out 14 days after because my GP was only available then. Everything healing nicely. Apart from the pains being I'm pretty good."

Are you considering a hysterectomy?

"I'm only a year and a half in with my first lap and no cysts. So there's a long way to go before I consider a hysterectomy."