Endometriosis: My Long Road to Diagnosis and Treatment

By Victoria Reed, PNN Columnist 

My first experience with chronic pain occurred early in life. As a teen, I often had unexplained bouts of pelvic pain and very severe menstrual pain, which left me vomiting and incapable of functioning for at least a full day every month.  

Although Advil (ibuprofen) is a common treatment for menstrual pain, I didn’t discover its use for menstrual cramps until I was over the age of 20. Before then, I tried other over-the-counter pain relievers, but they were all ineffective at controlling the pain.  

In between the painful periods, a dull pelvic ache settled in. It was always there, and after a while it just seemed like a normal part of life for me. But one day I came to the realization that it wasn’t normal to have near constant pelvic pain and decided to seek the help of a doctor.  

I first consulted with a doctor who was in my HMO medical plan. He decided to perform a diagnostic laparoscopy. That’s a surgical procedure in which a scope is used to view the abdominal and pelvic organs. I was told that nothing abnormal was seen.  

Not convinced that everything was normal, I sought the help of another doctor about a year later. The new doctor performed another laparoscopy and found evidence of endometriosis. However, he ended the procedure without doing anything to fix it. At the time, I didn’t really know what endometriosis was and the doctor said that the treatment for it was outside of his skill set. I knew I had to keep looking for a doctor that could actually help. 

After some time passed, I saw a third doctor who did weekly ultrasound “treatments” on my pelvis. I’m not exactly sure how that was supposed to work for pain relief, because it didn’t improve anything. I thought it was a little strange, but was willing to try anything. That doctor would later be convicted of gross sexual imposition for his inappropriate conduct with female patients.  

By the time I was in my mid 20’s, I once again decided to seek help for the unrelenting menstrual and pelvic pain. The fourth (and final) doctor I chose was a reproductive endocrinologist and OB/GYN. Little did I know, I hit the jackpot with this one! Not only was he kind and compassionate, but he was skilled at restoring fertility. At the time, I was convinced that I was going to be unable to have babies, as I had read that endometriosis could cause infertility.  

After our initial consult, the doctor came up with a plan to give the pelvic organs a “rest” by inducing a menopause-like condition with a hormone treatment called Lupron. Lupron has been used to treat endometriosis since 1990 and was found to reduce pain in the pelvis and abdomen. It works by suppressing the amount of estrogen in the body and essentially stops the menstrual periods.  

I had two Lupron injections over a period of six months and felt great! However, I wasn’t allowed to stay on the medication indefinitely due to potentially damaging side effects.  

Unfortunately, after some time off the medication, my symptoms gradually returned. In another year or two, I went ahead with another 6-month course of Lupron. Again, during the time I was on it, I felt no pain. It is believed that the endometrial lesions respond directly to circulating estrogen, so pain intensity can fluctuate with the changes throughout the menstrual cycle. The lesions can land anywhere inside the body, including the colon, bladder, lungs or other internal organs and can cause pain that’s not confined to just the pelvic area.  

After my second course of Lupron, I was told that if the symptoms returned, I could consider yet another laparoscopy. As expected, the pain returned again and I consented to a third surgery. However, this laparoscopy would be different. My doctor performed a lysis of adhesions -- a procedure that destroys the misplaced endometrial tissue that cause pain.

He was also able to free up pelvic adhesions and use a procedure to unblock a fallopian tube, thereby restoring my fertility. This surgery was life-changing. Finally!  

The chronic pelvic pain improved, and I went on to have four pregnancies and three successful births. Unfortunately, the menstrual periods continued to be quite painful.  

It’s been a long road, but I was lucky and feel very grateful to find a doctor who was willing and capable of doing what was necessary to help relieve my pain. I recommend that anyone with a diagnosis of endometriosis seek out a reproductive endocrinologist for the best possible treatment. I also advise anyone with this diagnosis to never give up. There is help and hope!

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.