Endometriosis: Patients cast adrift with pain deserve more.

Part of the reason to post this, is that my journey was/is not unique. Millions of patients experience similar struggles and levels of pain, constant or intermittent, impossible to live with Without help. Then you add to that psychological dismissal, gaslighting, verbal abuses as pts report, and it is a shameful time in health care for patients with endometriosis. It is not a menstrual disease, not just of reproductive age patients. Dr John F. Dulemba, MD - Endometriosis and Pelvic Pain reported his youngest patient was 8 yrs, the literature and Dr Redwine both reported multiple patients well into their 70’s and 80’s. These pts are impacted in every aspect of their lives, yet we blithely assign mental health dx, or dismiss from care entirely (again, pockets of excellence excepted). Currently our facebook page takes in around 3000 pts a month who have failed all gyn has to offer, except expert care. We will reach 200,000 patients by the end of the year or early January who have failed all gyn has to offer except expert surgery.

Left to languish, they reach out to the internet, often landing in groups filled with angry rhetoric, fighting, misinformation and are left spinning in a conundrum of failed approaches. We must do better, the $$$ cost runs in the billions annually, the emotional losses are also enormous. They struggle to interact with families, complete their education, participate in intimacy, then get accused by those who should know better of not wanting intimacy, where it leaves them in pain for days, they are accused of being unreliable when having to cancel family gatherings, or events with friends when overwhelmed with peritoneal quality pain. I applaud the commitment to improved medical education for care of these patients, but it must accelerate. 200 million pts world wide, most are getting inadequate care, we can do better. We must. Since this was written pockets of excellence have begun to develop around the world, but the numbers pale against need. While it is long, I do not apologize for the length, living with this kind of pain deserves all the time it needs to understand.

Living with Life-Altering Pain - October 2012

A little background on why I think I can write this article: from the time I was 10 or 11 years old, I have pretty much been in pain. Daily.

By the time I was 27, I still did not have a diagnosis and was in so much pain, all I could do was work and try to get enough rest so I could work again the next day. My low back and left leg were in continuous pain, to the extent that I could sleep only about 4-6 hrs a night.

Then I had my 3rd episode of acute abdominal pain and was hospitalized, and a gyn consultant called. To his credit, he diagnosed endo after doing a pelvic exam, and as usual, during the exam, I was willing to leave the table with the speculum still in place. He did not mimic my internal medicine specialist, saying: "calm down, pelvic exams do not hurt!", but instead said, “I always watch my patient’s face when I do a pelvic exam. This tells me everything.” Dr. Redwine mentioned this too about watching patients faces while doing the exam.

"Enovid," he said (an older birth control pill), “triple dose. If this doesn't do it, come by the office and we will talk about a hysterectomy."

I discussed it with the OB/GYN head nurse, who suggested another opinion if it came to that. This was in the days before GnRH agonists. Finally, my pain was so severe, and blood loss so great, I got my second opinion and opted for a complete hysterectomy with ovary removal given repeated ruptured cysts.

Because of the back and leg pain, now having reduced my sleeping to 2 hrs a night, I also saw an orthopedist who said: “since your hysterectomy didn't help your back pain, you need a laminectomy and fusion of your low back”. Mind you, this was 1969, and I was sort of meek in those days. So - I had one of those, too.

For the next 22 years, my back and leg pain bore a hole in my mind, my soul, my life. Sleep came in 20-minute parcels but amounted to no more than 2 hours a night. It seemed to me this was my lot. Gradually, I began having significant bowel and bladder pain, and about 20 years into this period of pain, I began lecturing on endometriosis and Modern Concepts as developed by Dr. Redwine (Bend, Oregon). As I traveled around North America lecturing, I would stay as long as the questions flowed about endometriosis. Often, I would hear stories of pain that were so similar I began to wonder if I still had endometriosis. Mind you, it was not a common understanding that endo could persist or recur following a complete hysterectomy then.

“Gee, that sounds like me”, I would say to myself.

During those 22 years after the hyst, I had only myself to rely on. I had to work, often long hours as I was first a critical care nurse, then a house supervisor and upper manager, and then spent 22 weeks a year on the road visiting support groups teaching Modern Concepts. I was on my feet, all the while, 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 a way to least 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, Ph.D. became my bible. I literally tried most of the stuff in that book, including visualization, relaxation training, hypnosis, drawing and writing my pain, counseling, group supports. My mantra was if it is not likely to hurt me, not outrageously expensive, and not just plain stupid, I would try it.

Some things I learned: first, current pain is almost always linked to other primal pains such as parental abandonment, abuse (physical, mental, emotional, etc.), low self esteem, isolation, loneliness, and a host of other issues – or maybe, just bad medical care and refusal to believe us! So if you were victimized by other events or abuses in your life, you may well feel victimized by endometriosis; another learning point was while pain may be a major factor in your life, there are many ways to distract your mind, finding ways to nurture yourself can help alter the brain's focus. My reading helped my learning; however, I also chose to spend time with a counselor to aid my learning.

The key issue here is the ‘state of the art’ is, in fact, such a sorry state. When we do not experience improvement with ineffective treatment we must be nuts, right? Of course it is easier for caregivers to believe we are neurotic than to accept there is something wrong with basic endometriosis care. Seventy-five percent (75%) of the patients we saw had been dismissed as neurotic, after multiple medical and surgical treatment failures. ALL had biopsy proven disease as determined by board certified independent pathologists from the tissue Dr. Redwine and Dr. Sharp submitted.

A recent series of articles in a special edition of health news by the Bend Bulletin revealed that over half of the research appearing worldwide in medical journals, news releases, medical conferences, even coming out of universities is WRONG. And often what is not "wrong" has been written, edited, pushed for publication by special interests. This is a critical observation and is even worse in women with endo. So we are challenged to survive until quality care is available to all of us, and the maltreatment offered as the standard fare has been banned from medicine forever. (Present pockets of excellence excepted)

I began to carry a small cassette recorder/player (who knew the age of iPods was just around the corner) around with me, and when I took my breaks, I would spend 20 minutes in deep relaxation, and then be able to go on for a while longer. Computer solitaire was invented for my sleepless nights. Music with a headset so as not to disturb others in the house was also helpful, as was late night chats online, research online, anything that put my mind somewhere other than the blistering pain in my belly and mind-boring pain in my calf some 22 years after my curative hysterectomy and ovary removal, and referral for psychiatric care.

I became a prolific reader of self care, alternative care, ways of distracting the mind. All that reading, video watching, tape listening, helped move my brain out of the continuous focus on the pain for short periods of time.

On of the books I read was “Flow, the Psychology of Optimal Experience” by Mihaly Csikszentmihalyi. While it was written in a scholastic vein, I was able to pick out some key ideas, one of which is when you get into something you truly love, your life flows and distractions can be minimized in the moment. I began gardening. Raised-bed gardening was something I had been reading about, as well as reading a book by Ruth Stout, “The No Work Garden Book.” I found ways to adapt my life and my garden so I could still do this without making my life and pain worse.

This gave me back some power over my life.

During this time, no one was helping me with pain; we did not even know what was wrong with me, especially since the fusion did not help. So as my joy at digging my hands into the soil, particularly in an extremely difficult climate, began to emerge, I found that I could forget the pain for minutes, sometimes, half hours at a time. Even today, although my endo pain has been resolved, genetic malformations in my spine have taken center court, but I can put the pain aside for an hour at a time, by finding joy. This is NOT to say the pain goes away, but rather the brain is trained to look elsewhere for periods of time.

I do not believe I would have had the strength to persist if my endometriosis had not been resolved through excision, given the progressive, genetic defect in my upper back. So I am grateful for the success of endo removal. I did eventually undergo expert excision of endo found on the uterosacral ligaments, pelvic floor, and pelvic sidewalls, 22 years post "curative hysterectomy" it took 2.5-3 hrs to remove the rest of my invasive disease.

You cannot just muscle through the pain. Sometimes that will make things worse because you work physically beyond your tolerance, but you can distract the mind from paying attention for periods of time. Is it easy? Not at all! It is hard work, requiring self-education, focus, practice - and sometimes you will fail. In some cases, you may always fail! BUT trying to improve your ability to cope with pain until you can find more effective care can be empowering, and give you a sense of purpose.

Please do not interpret this to mean you can always do ‘mind over matter’ where your pain is concerned. Rather, you can build in short respites, sometimes even longer. For me, it was at least something I could try. That alone was empowering.

Hear me: your pain is as REAL and severe as acute appendicitis can be (I know, I had both) - only it is chronic, continuous, mind-boring, and you always deserve better care than is offered to the 176,000,000 women worldwide. ***(Pockets of expert care and training excepted of course. Since this was written, that has been a world wide effort to improve care by many experts, much of that effort based on the research and invitations to teach his techniques that were developed by Dr Redwine.)

The status of endo care worldwide is criminal. Every patient deserves relief from this kind of pain. It takes more skill than most surgeons have, but it is not beyond their ability to learn if they seek skilled mentors.

So what is holding them back? No one should have to live like this.

Nancy Petersen-RN, Retired