Nancy Petersen's Story

The pain began at age ten. 

Seventeen years later, I wasn’t living as much as barely existing. I had graduated from Nursing school and was working, but all I could manage was to finish my hospital shift and collapse at home, hoping to get enough rest to go back to work the next day.  

My lower back and left leg were in constant pain, and acute pain in my abdomen flared up from time to time. I was sleeping only a few hours at night because the pain kept me awake. I was beyond exhausted.

When I had my third episode of acute abdominal pain and was hospitalized, a gyn consultant was called. To his credit, and amazingly for the time, he diagnosed endo after doing a pelvic exam. My internal medicine specialist had previously told me, “calm down, pelvic exams do not hurt!” (such a lie), but this consultant said, “I always watch my patient’s face when I do a pelvic exam. This tells me everything.” 

I was happy to have a name for my situation and was ready to have a solution. “Enovid,” my consultant said, (an older birth control pill), “triple dose. If that doesn’t do it, we’ll talk about a hysterectomy.” This was in the days before GnRH agonists but use of birth control was common and sometimes thought to be curative.

I discussed my situation with the hospital’s OB/GYN head nurse, who recommended I seek another opinion. Finally, my pain was so severe, and blood loss so great, I got a second opinion and then opted for a complete hysterectomy and ovary removal for the cure. I was so ready to feel better.

But I did not feel better.

Because the back and leg pain let me sleep now just two hours a night, I saw an orthopedist who said: “Your hysterectomy didn’t help your back pain, so you need a laminectomy and fusion on your low back.” This was 1969, and I was sort of meek in those days, and went along with what the doctor recommended. So – I had one of those, too. 

I was not yet thirty years old, and had undergone a complete hysterectomy, a laminectomy and fusion. But it was all worth it because I’d be better, right?

Not right. For the next 22 years, my back and leg pain wore a hole in my mind, my soul, my life. Sleep came in 20-minute parcels. Over time, I added significant bowel and bladder pain. I was a complete and total mess (still working, and being promoted, though, dominating the pain through sheer force of will). 

 

It All Started With a Cup of Coffee

After enduring this additional pain for sixteen years I was working as a house supervisor at St Charles Medical Center in Bend Oregon. Supervisors covered many tasks after hours including things as mundane as getting meals for an OR crew doing emergency surgery when they could not get away for dinner. One night after handling a dinner call for the OR, I sat down to take the pressure off my leg and have a cup of coffee. Dr. David Redwine happened to be giving a community health talk on endometriosis. I caught about half of the lecture before being called away. 

Over the next year his work came to mind and it occurred to me his approach, to remove the endo from the organs and not the organs themselves might be a better way to treat endo.

Then one night I bumped into him while I was making my rounds. I asked how his research was coming along and he said it had undergone peer review and had been accepted and was about to be published in various OB/GYN journals.

As co-chair of the Research & Development committee at our hospital, I asked him to present his research there and then later to hospital administration. From that point we developed an agreement for a joint venture to establish the first laparoscopic excision program for endometriosis in the US and perhaps the world. Dr. Redwine was lecturing and teaching on every continent except Antarctica. Patients came to Bend from all over the world to have excision surgery.

Medical Self Care, a small West Coast magazine was intrigued and sent a writer and photographer to Bend to review the program. Bobby Hasselbring and I co-wrote the article Endometriosis Reconsidered. While their circulation was only around 60,000, the article generated more than a thousand phone calls the week that issue was released. People with endometriosis were starving for help and were desperate to know more. 

I started attending OB/GYN professional meetings and met Bob Albee MD from Atlanta. I knew the women’s health manager at his hospital as well and we began to discuss the possibility of a similar program in Atlanta. I did a brief consult to help his hospital understand the key concepts and potential of an endo program and recommended Donna Laux as a program manager. She and Dr. Albee launched a program which eventually became the Center for Endometriosis Care.

I began lecturing all over North America on endometriosis and Modern Concepts as developed by Dr. Redwine. After a talk I would stay as long as the questions flowed. Often, I would hear stories of pain that were so similar to mine I began to wonder if I might still have endometriosis, even though I was told it was impossible to have endo after a hysterectomy and menopause.

During the decades after the hyst, I had only myself to rely on. I had to work, often long hours as a critical care nurse, then a house supervisor and upper manager. With the endo program I spent six months a year on the road visiting support groups to teach Modern Concepts. I was on my feet for long hours with pain so severe it broke through my every action, thought, attempt to sleep; it stole my relationship, in many ways the joy in my life. I had to find something in life that was positive.

I began a series of self-care attempts. I spent a great deal of money on massage, acupuncture, acupressure, Rolfing, Feldenkrais, chiropractic, and naturopathic care. The book, Free Yourself from Pain by David Bresler became my bible. I tried most of the options in that book, including visualization, relaxation training, hypnosis, drawing and writing my pain, counseling, group supports. My belief was if it was not likely to hurt me, not outrageously expensive, and not just plain stupid, I would try it. Some of it helped some of the time, but I still had enormous pain on a daily basis.

I confided to Dr. Redwine that I thought I might still have endo, despite having a hyst and no ovaries. He took me as a surgical patient and I had expert excision. Endometriosis was found on the uterosacral ligaments, pelvic floor, and pelvic sidewalls, 22 years after my “curative hysterectomy”. It took 2.5 hours to remove the endometriosis and I awoke in the recovery room pain free.

I remain grateful to members of a support group in Thunder Bay Ontario for a powerful lesson. I gave a lecture there and during a break I was approached by three physicians from the audience. They said I was wasting my time as there was no need for endo education in Thunder Bay. They informed me they were curing endometriosis with triple dose Danazol (a GnRH agonist, the first drug specifically approved to treat endo), and then they left. When we prepared to resume the lecture, the room was full of raised hands, and I called on one to hear what was on everyone’s mind. “What did the doctors say to you?” I said they believed they were curing endometriosis here and I wondered aloud why they would believe that? The room erupted with: “Because we don’t go back!” Those physicians were not listening to treatment failures and believed the patients were just being emotional. Listening to patients is key to effective treatment of their disease.

Over the years I’ve realized that the ‘state of the art’ of endo care is, in fact, a sorry state. When patients do not experience improvement with ineffective treatment they are labeled neurotic. 75% of the patients we saw in Bend had been dismissed as neurotic, after multiple medical and surgical treatment failures. All had biopsy proven disease as determined by board certified independent pathologists in Bend. Excision is the answer.

 

Once I retired from the hospital, I discovered some chat groups for endometriosis on AOL. There I met Heather Guidone who was working with Michelle Marvel, founder of the Endometriosis Research Center (ERC). They asked if I would moderate a small discussion board and join their advisory board, both of which I agreed to. As the group grew, they suggested I move the discussion to Facebook. Around 2010 we launched Nancy’s Nook for Endometriosis Education as a Facebook group with about  200 members.

The goal was to help patients whom gynecology had failed with ineffective treatments. We advise expert excision because of evidence-based education. Members discover they can make more effective treatment decisions and stop the insidious cycle of one ineffective treatment after another. Today we have more than 100,000 members and we continue to grow at the rate of 600-800 new members a week.

I may never be completely and fully retired because it is beyond gratifying to know Nancy’s Nook has helped tens of thousands of patients take charge of their healthcare and get their lives back. The need is so great, but the rewards are so profound.