My Endometriosis Story: This Pain Is Not Normal

March is Endometriosis Awareness Month. As is typical, many articles are circulating about statistics and current treatments of this often misunderstood and notoriously challenging condition to diagnose. What we don’t often see are real life accounts of those who have lived to tell the tale of how they finally got diagnosed and the uphill battle of getting proper treatment.

According to Endometriosis.org, endometriosis affects approximately 176 million women worldwide and likely more as so many women go undiagnosed. The condition involves the growth of tissue similar to that found within the uterine lining outside of the uterus. These lesions can spread throughout the pelvic region causing intense pain during menstruation, painful sex, infertility and a number of other symptoms. Historically speaking it has been difficult to diagnose without invasive medical procedures, although this is slowly changing as awareness of the condition and its symptoms are becoming more commonly recognized by medical professionals.

In my case, I got my first period when I was twelve years old. After that I did not menstruate for four years due likely to the fact that I was anorexic and a ballet dancer. When my periods resumed, my cramps were so excruciatingly painful that I would literally feel like I was going to faint. My doctors conducted routine pap smears and pelvic ultrasounds to assess whether or not there was anything medically wrong with me. The verdict was no. It was just my normal.

Month after month my periods got worse and worse. I’d have such excessive bleeding that I’d become severely anemic and needed to take iron pills and my periods would last for more than a week. I had so much pelvic pain that wearing a tampon was impossible so I’d have to wear the thickest most bulky maxi pads, which were very difficult to hide under a leotard and tights as a ballerina, causing me to skip classes and hide because I was embarrassed and felt too weak to do anything physical. 

In an attempt at controlling my symptoms without an actual diagnosis, I was put on birth control pills. At the time they thought that the pill would curtail the duration, intensity and pain associated with my periods. I complied, but my symptoms persisted.

In my early twenties we had moved to Las Vegas and I finally had a job that came with a good health insurance policy. My boss at the time noticed that I was calling in sick every month for a couple of days and sat me down. I felt humiliated having to tell my male boss that the reason I couldn’t come in to work to perform a desk job was because my periods were so intolerable I had to lay in the fetal position loaded on prescription pain medication to just attain a tolerable level of pain to keep me out of the ER. Luckily for me this boss had a wife with similar issues and rather than any disciplinary action, he gave me a referral to a gynecologist who was an expert in something called Endometriosis. I was so desperate that I called and made an appointment.

The protocol at that time, this was in 2003, was to perform laparoscopic surgery to assess whether or not there were lesions indicating endometriosis. We scheduled the surgery. He did indeed find extensive lesions, including on my bladder, uterus and ovaries that were excised. The recovery from the surgery was supposed to last a couple of weeks, however the incision that was made in my belly button developed a staph infection which led to a month of antibiotics, a severely distended stomach and a leave of absence from work. 

Once I was healed the gynecologist did a follow up with me and suggested we switch to birth control that would limit my periods to once a quarter. He thought this would reduce the possibility of the lesions from returning in the long run. He also informed me that in his estimation I’d have a difficult time conceiving due to the degree of damage to my uterus. My husband and I had already decided we didn’t want kids, but this definitely sealed the deal.

I went along for another couple of years with perhaps some relief, but I still had horrendous periods, even if they were only four times a year. When we moved to Illinois in 2005 and I needed to find a new doctor, I told him about my history. At the time he handled my annual pelvic exams so I communicated directly with him about my potential options for further treatment. Being self employed, I didn’t have the flexibility to just take a couple of days off during every menstrual cycle so I’d have to work through the pain and lethargy that continued to worsen. 

My doctor suggested that at this point a hysterectomy would be the next step but he refused to refer me to a specialist because he insisted at my age I was too young and I’d change my mind and want children. No matter how much I argued with him that my husband and I had already made the decision to not procreate, he would not agree to the referral. I felt stuck between a rock and a hard place because my religious conservative male doctor felt that it was his right to decide what was right for my body and marriage, but I didn’t feel like I could change doctors.

It took until 2012, when I was 36 years old, for my doctor to finally agree that I probably wouldn’t change my mind at this point and by now I was getting to the point where I would be too old to conceive anyway to refer me to a specialist. It took three months to get an appointment, but once I did, the doctor agreed that we should proceed with the hysterectomy.

The procedure wasn’t without its complications, as I had trouble healing the interior sutures and needed to have them resealed three times over six months, but at least I was done having debilitating periods forever.

I have since experienced some mild discomfort in my ovaries, which they did not remove so as not to put me into premature menopause, but this has been attributed to scar tissue which has been left behind by the lesions. Whilst hysterectomies are no longer considered to be the gold standard for treating Endometriosis, it was a life saver for me.

No more pain, no more invasive transvaginal ultrasounds which are a triggering nightmare for a sexual abuse survivor, no more missed work, no more humiliation and the freedom to live my life without the monthly nightmare of having periods. To anyone who has experienced similar symptoms, please know that you do not have to live like this. This kind of excruciating pain is not normal, no matter what any doctor tries to tell you. Be persistent and be your own advocate. Find a doctor who specializes in endometriosis and insist that you be seen. 

And to my now ex-doctor, nobody has the right to tell a woman what is acceptable for her body. Nobody should force someone to be in that much pain for that many years because it doesn’t comply with your moral values. Shame on you. I now see a female doctor who not only listens when I tell her something is off with my body, but is deliberate about attending to my mental well-being in addition to my physical well being.