Periods can be a real pain in the, well, uterus. But while most menstrual pain is manageable, a large population of people experience a type of pain that's nothing short of debilitating. The cause of that pain? Endometriosis. According to the Mayo Clinic, endometriosis occurs when the endometrium (tissue) grows outside of the uterus. This means that the tissue lining we normally shed during menstruation (which typically grows inside the uterus) can’t escape the body, resulting in what can only be described as a slew of unpleasantness. That’s why some people choose to have surgery to treat their endometriosis. But is surgery always worth it?
Currently, there are no known specific causes for endometriosis. There could be a genetic predisposition, or it could be related to retrograde menstruation (a theory that states menstrual lining might flow back up into the fallopian tubes, which then attaches itself to pelvic organs and grows). What is known, however, is that there are a number of symptoms associated with endometriosis, such as excessive bleeding, painful intercourse, infertility, and, as mentioned previously, extremely painful periods.
Moreover, the condition is believed to affect three to 10 percent of menstruating persons, though that number might actually be higher. No wonder so many people are choosing to undergo surgery to help with their symptoms, and even though there's no known cure for the disease. Romper asked people who live with endometriosis and chose surgery to share their experiences, and this is what they had to say:
“My laparoscopy [surgery)] was life changing. I had gotten to the point where I was bedridden most of the time. The pain from endometriosis had taken most of my life away. During my [surgery], a major adhesion was found wrapped around my ovary, and that was removed as well. Since the surgery, I experience almost no pain, except during my period. Even then, it is nothing compared to the agony of before.”
“I struggled with sharp, pinching, painful symptoms, particularly around ovulation, as well as painful periods, digestive trouble, and anxiety for many years before I was finally diagnosed with endometriosis. I used to say it felt like a swollen rubber hose was rubbing on my insides. It wasn’t until my disease was quite advanced that they could see the large endometriomas (ovarian cysts) on an ultrasound. By the time I was clear what was happening to my body, I felt bad almost every day of every month.
Once I knew what I was dealing with, I started looking for surgeons. I am an integrative health practitioner, so I wanted to look for the surgery that was most likely to resolve my condition at the roots. I found Dr. Andrew Cook of the Vital Health Institute in Los Gatos, CA. He specializes in wide excision laser surgery to not just burn away endometriosis tissue, like most surgeons do, but to excavate the endo tissue with a wide margin of healthy-looking tissue. If any endometriosis tissue remains after surgery, it will regrow and continue to cause symptoms and require more surgery! No thanks!
Dr. Cook told me that I not only had endometriosis on my ovaries, but that I had a sister-condition called adenomyosis, and that I likely needed a hysterectomy. When Dr. Cook got in there, he found that all my pelvic organs were stuck together with scar tissue. I had Stage IV endometriosis.
I am a little more than two years post-surgery. My endometriosis and anxiety symptoms have resolved with the surgery, but there were associated symptoms that are still sometimes an issue. I continue to search for the root causes of these symptoms and work to resolve them. I am super grateful for Dr. Cook’s skill and that I had access to this surgery, because most women are subjected to hormone treatments or ablation surgeries that don’t help or make things worse.
I now help others manage the diet and lifestyle side of complex health conditions, like endometriosis.”
“I was diagnosed with endometriosis at age 21, one year after I married. The OB-GYN told me at the time that the best treatment would be for me to get pregnant immediately to stop my periods. (I had just graduated from college and was starting my career, so that wasn't going to happen.)
I hadn't had any physical symptoms, other than some heavy menstrual cramps. The doctor detected it during a pelvic exam in my annual physical. But in an abundance of caution and to preserve my fertility, I opted for the surgery, which was my OB-GYN's second recommendation.
I'm happy to report that I became pregnant on the first try at age 25, and gave birth to a healthy daughter. Four years later, I gave birth to a healthy son and have had no recurrence of endometriosis since then. I would recommend surgery as a viable option.”
“I was diagnosed with endometriosis by accident. For a decade or so, my OB-GYN had been telling me I had uterine fibroids. I spent countless time and money [sic] having ultrasounds and other tests to constantly monitor the progress, not to mention the pain and discomfort I endured throughout. I constantly felt like I had menstrual cramps, especially as I'd lie in bed at night trying to fall asleep.
As I reached my mid-50s I was told after one of the tests that I had ‘something’ growing around one of my ovaries that looked suspiciously like cancer. Since I was well past the optimal time for having children, they suggested that the best way — the only way, actually — for them to figure out exactly what this was and to treat me was to have a complete hysterectomy followed by (depending on what they found) chemo and/or radiation. And this was not to be a laparoscopic hysterectomy — it would be the ‘old fashioned’ type where I'd be sliced open from hip to hip and kept in the hospital for a week or more afterward.
I got that ‘diagnosis’ around Christmas, so between Christmas and New Year's I visited a few more doctors around Chicago — including one who was listed as the ‘best gynecological surgeon’ by Chicago Magazine. Each doctor took a look at my charts and test results and agreed with my original doctor: that a hysterectomy was the way to go. On the day before New Year's Eve, when I asked the ‘best gyno surgeon’ about doing a laparoscopic hysterectomy (which I'd heard about), he said he didn't feel comfortable doing it given how my charts looked. I was disappointed, but appreciated his honesty.
Luckily, I knew a surgeon in Phoenix who I'd worked with years before when I'd volunteered at a Planned Parenthood there. I knew he specialized in laparoscopic surgeries and, lucky for me, he took my call and offered to help. I faxed him my records and test results. He called me right back: ‘I don't think you have cancer; I'm pretty sure it's endometriosis.’
He then referred me to a Chicago-area physician who specializes in laparoscopic gynecological surgery. In fact, they'd written a textbook together on the subject. Long story short, I saw that doctor, who agreed with my doctor/friend in Phoenix. He agreed to do the surgery laparoscopically, but not do a complete hysterectomy unless it was necessary once they opened me up. I had my surgery on a Wednesday morning, went home later that day. The following day, I did a conference call with a client. On Friday, I took my regular Friday night yoga class, and on Saturday I did half of a spin-class at my gym. Within a week, I was back to my old self.
What they found, after all these years of being watched and tested: no cancer, no fibroids — only endometriosis which had leaked out of my uterus and wrapped around my fallopian tube, ovary, and parts of my bowel. They removed the offending tissue as well as one fallopian tube and corresponding ovary.
This was 2006, and I've had no problems since then, and even continued to menstruate for another six months. I had an inch-long scar on each hip and one around my navel, but all faded long ago. As you can imagine, I ditched my Chicago gynecologist (who was insisting on the hysterectomy) and have told my story to any woman who suspects she has a similar issue.
To me, the moral is to get multiple opinions and not immediately agree to what your doctor is telling you. Also, not to assume if you're over 40 or so that you need a hysterectomy (old fashioned thinking).”
“I had five laparoscopic surgeries to remove endometriosis over the course of 15 years. They did not reduce my pain, but I kept having them every three or four years to prevent further complications. Finally, at age 38, I had a full hysterectomy, keeping one ovary. This has dramatically reduced my symptoms and changed my life.”
“I was in my mid-20s when I was first diagnosed with polycystic ovarian syndrome (PCOS). After trying different medications for a couple of years, my doctor did laparoscopic surgery and it helped. As time went on, though, I continued to have irregular periods and when I did, the length, flow (heavy or light) and cramping varied. Ultimately, the pain grew worse. It became paralyzing and would make me physically ill.
I had surgery for endometriosis three or four times between my 30s and 40s. Three were done laparoscopically and one was an incision. My last surgery was when I was about 46 or 47. Following each surgery, I felt significantly better. I may have had cramps but nothing to the extent of the pain or duration. I didn’t experience any side effects or anything negative resulting from surgery. The only ‘long-term’ effect was that the endometriosis would return, usually within a couple of years. I could tell the symptoms and would let my OB-GYN know I thought it had returned. Each time he examined me he agreed, and he would ‘go in to clean it out.’
The last time I experienced the symptoms, I was in my late 40s. He again did surgery and found endometriosis, as well as two cysts. In the end, one was a cyst and one was a benign tumor. We discussed my options and decided, given my age (beyond childbearing years), a total hysterectomy was the best course of action for me. This was a great success. The recovery went well and I love being pain-free!”
"I was diagnosed as having endometriosis when I was 25. My doctor went in laparoscopically to remove the adhesions and surprisingly found there were none. I had been misdiagnosed all along. If I hadn't had the laparoscopy, I would probably still be receiving treatment for a disease I don't have, rather than being referred to a different doctor who correctly diagnosed me with congenital spinal stenosis."