Thank you for sharing your story. I have struggled for years. Last year I had a hysterectomy for surgery #8 (one ovary was left). I had one year of pain free bliss, but find myself right back in debilitating pain again. I took the very first shot of Lupron I've ever had 3 days ago. I am holding out hope that the Lupron will stop the pain and I can live a normal life. I appreciate you sharing your journey and pray for your sustained healing!
I’ve always had a sixth sense that something wasn’t quite right “down there.” It all started in high school, when I started suffering from extremely heavy periods and painful cramps. I figured it was just something I’d have to put up with—and from what I’d read, it was all probably normal.
In college, I started to lightly bleed in between cycles, and my menstrual cramps worsened. My trips to the gynecologist became so painful that I often felt like fainting. In fact, most examinations ended with my head between my knees as I tried not to cry from embarrassment and humiliation. The doctor would then scuttle from the room, not quite sure what to make of me.
My pelvic pain issues continued into my mid-20s. To make matters worse, I watched as all of my friends started to have babies. Children weren’t even remotely on my radar. How could I possibly have a baby if I couldn’t even make it through a simple pap smear or intercourse without significant pain? I began to feel depressed and guilty about my intimate life with my husband.
So what was wrong with me? I asked myself that question thousands of times, especially after each annual physical exam. Why couldn’t I just be normal like everyone else?
I reached out to doctors and nurses with my concerns, but I seemed to be dismissed as neurotic. Every year I would complain to them about the same things: heavy and painful periods, bleeding in between periods, painful sex, and uncomfortable pap smears. Sometimes they would note something on my chart or would nod in sympathy, but rarely did they offer any suggestions. A few times my birth control pills were changed, which would help with the bleeding, but not the pain. Nobody seemed to know what else to do with me.
The few people who did try to “help” me only made me feel worse. After one particularly painful pap smear, a nurse started grilling me about my sexual past, asking me several times if I had ever been assaulted. I had to deny this over and over before she stopped asking me, and even then I felt like she was scolding me. Another time, a doctor told me that my pain was caused by my small vaginal muscle. He then handed me a box of different sized hard rubber “shafts” I was supposed to keep inserting, eventually working my way up to the biggest one. He may as well have handed me a box of knives and told me to keep working on my pain threshold. I never did use the box.
Eventually I started to second-guess my mental state—perhaps I was neurotic or frigid. I started seeing a psychologist who helped me make a relaxation tape. Still no luck. Deep down I knew that something was physically wrong with me, but I had no idea what it could be.
It was only when I started bleeding while exercising that my doctor decided to do an ultrasound. The test revealed an ovarian cyst. When the cyst didn’t get any smaller, my doctor told me he wanted to perform laparoscopic surgery to remove it. At the same time, he would be able to see if anything else was going on, such as endometriosis. That was the first time I had heard that word from any doctor or nurse. It had taken nine years.
So what is endometriosis exactly? Most of us know it’s a female reproductive disease, but the details are a little fuzzy. Basically, endometriosis occurs when the lining of the womb (the endometrium) sheds stray tissue around the pelvic cavity. The tissue can bleed or become inflamed, and the eventual build-up can cause painful periods. Sometimes the only symptom is infertility or having a miscarriage. Nobody is quite sure what causes it or how to prevent it.
During my laparoscopy, the surgeon made a small cut in my abdomen and then used a small, lighted instrument called a laparoscope to view my reproductive organs and the surrounding areas. It turned out I had moderately severe endometriosis. Most of it was lasered off, however some of the adhesions were too close to my organs to be safely removed. In order to get rid of it, my doctor recommended that I induce menopause for six months—shutting down my reproductive organs would hopefully help eliminate the rest of the adhesions. He also explained that pregnancy sometimes helps to flush out the endo; but that wasn’t an option for me at the time. A third choice was a hysterectomy, which some women (usually not of reproductive age) choose if their symptoms are severe or if the disease is very advanced. I chose to have hot flashes at age 30.
Although I did feel relief after my surgery, it took some time. After years of pain, I still had a tensed Pavlovian response to pap smears and intercourse. It wasn’t easy, but eventually I learned to relax again and lead a relatively normal life. I never did try to have children of my own, but I do know other sufferers who have gone on to have healthy pregnancies.
Unfortunately for many women, the effects of endometriosis on their quality of life end up lasting for years. Those who suffer must deal with multiple sick days, numerous doctor appointments, financial burdens from medical bills, emotional stress, and strained intimate relationships. In addition, the endo can keep coming back, so multiple surgeries are often necessary over a lifetime. I’ve already had another laparoscopy since my first surgery.
If you suspect you may have endometriosis (or are suffering from any other undiagnosed condition, for that matter), it’s important to have productive conversations with your doctor. Make a list of your symptoms, and try to be as specific as possible. You may even want to keep a journal and write about your health every day while noting the dates of your periods. All of this information is vital in helping the doctor understand your condition. And most importantly, remember persistence. Keep demanding answers, and if you are still not satisfied, it may be time to find a new doctor.
I have since discovered that millions of women suffer from endometriosis, yet it hasn’t received as much public awareness as other diseases. It’s my hope that more women start talking about this disease so that it won’t take years of suffering without a diagnosis. There’s no reason for anyone to suffer through this alone.
- Endometriosis Foundation of America
- Endometriosis Research Center
- Endometriosis Resolved