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Nancy's Nook

Latest feature: October 2013

Nancy Petersen, RN is an ERC lifetime advisor who has guided our organization since its inception in 1997 and was the inspiration behind the Nancy Petersen, RN Nursing Scholarship. Her life’s work for nearly 5 decades has been dedicated to the care, treatment and support of patients who struggle with the disease. She has long been globally recognized for her barrier-breaking awareness strides in endometriosis and founded the first surgical excision treatment program for the disease in the United States.  Nancy was recently honored for her decades-long, tireless efforts by Endometriosis.org. Learn more about her pioneering works here: http://endometriosis.org/news/support-awareness/recognising-endometriosis-advocates-nancy-petersen. She also hosts a moderated discussion group for those concerned with endometriosis, including loved ones, caregivers, physicians, surgeons, researchers and women with the disease, on Facebook at: http://www.facebook.com/groups/418136991574617. Nancy has mentored, counseled, guided and supported countless women with endometriosis from every corner of the world and has worked passionately alongside thought leaders to implement progress on the disease.

The following is an advance copy of the speech Nancy was slated to give at an advocacy event in Washington, DC in 2014. Unfortunately, Nancy will be unable to present in person, but we thank her for generously allowing us to nonetheless share her important words with the world.


"When I was diagnosed in 1969, I had pain and one hospitalization after another for 17 years - without a diagnosis.  I did, however, experience multiple scoldings about pelvic exams ‘not really hurting’ as I tried to exit the exam table with the ratcheted speculum still in place and some psychological dismissal because after all, it’s ‘just her period.’

Today, 44 years later, instead of prompt diagnosis and prompt treatment, we see diagnostic delays averaging 9 years.  Nine years of pain, psychological dismissal, and disregard of severe pelvic pain.  We have not come very far at all.

Making things worse - some are advocating that we not treat “minimal” disease at all.  After all, it’s minimal, right?  **Any endometriosis lesion can cause significant inflammation of the lining of the pelvis (aka peritoneum).  Try living with a couple grains of sand in your eye for a lifetime!**  It is the same kind of inflammatory response.  This kind of misogynist approach to endometriosis care is outrageous.  It is steeped in “there is not enough money to treat all 180,000,000 women worldwide” for their endometriosis. “

Let me tell you - if 180 million men worldwide had unbearable pain during sex, bowel   movements and exercise, and were offered as treatment feminizing hormones, surgical castration or pregnancy?  It would be an international emergency to which we would transfer our combined defense budgets.  We would not be having this misogynist conversation regarding ‘enough money.’

The peritoneum is the thin saran wrap-like lining of the pelvic cavity and the organs.  Its role is primarily protective.  If there is blunt abdominal trauma, infection, appendicitis, leaking organs it reacts swiftly and predictably.  There is bloating, intense abdominal pain, nausea, paleness, restlessness, anxiety (oh, you recognize that, do you?); every medical and nursing student on the planet has been taught to recognize these symptoms and respond quickly.  A differential diagnosis must be made promptly and the peritoneal quality pain treated with pain medication.  In women with endometriosis, however, we can somehow dismiss the intensity of her pain with the assessment of, “oh, it’s just her period.”  This is outrageous that we would ignore, either in an ER or in a private practice, peritoneal quality pain without treating it.

If as a caregiver, you do not have the skill or interest in excising endometriosis, at least treat the patient’s pain.  It is as intense as appendicitis.  I know - I have had both.  Or better yet - refer the patient to someone who can remove disease effectively.  On our endometriosis boards on Facebook and other forums, where thousands of desperate women with endometriosis gather, we have identified less than 100 gynecological surgeons out of 52,000 in the USA who treat disease effectively- and yet, most believe they can.  Treating effectively means permanent relief of pain in one or two surgeries.  This disconnect is a huge problem.

Drugs do not treat endometriosis, they alter the normal hormonal state the woman tries to live in.  Once, when giving a lecture on modern concepts in endometriosis, I had two surgeons confront me during the intermission.  They said surgery was not necessary, they were curing their patients with triple dose Danazol and then stormed from the room.

When the lecture resumed the crowd interrupted and wanted know what the surgeons said.  I told them they were “curing” endometriosis with Danazol.   I wondered aloud why they would think that.  The nearly 100 women in the room shouted almost in unison, “Because we don’t go back!”  So if caregivers are thinking they are helping their patients with medical therapy, perhaps they are not listening closely enough - or just maybe, their patients are simply not coming back to them.

In the 1980’s when I was managing the Endometriosis Treatment Program at St. Charles Medical Center in Bend Oregon, we saw patients from around the world.  They were all multiple treatment failures, both surgical and medical.  75% of them had been dismissed as neurotic.  All had active, painful endometriosis as determined by independent board certified pathologists.  Today, still I hear from woman after woman who has been told she has no disease and to seek psychological help.  Yet when we manage to get her into the hands of a doctor doing advanced excision, she has active endometriosis and experiences dramatic long lasting relief upon removal.

Women with endometriosis live lives of quiet desperation.  They have learned to be quiet because most do not believe the quality and severity of their pain. Their support systems often abandon them because doctors could find nothing wrong.   Yet they present with peritoneal signs and symptoms.  Will we continue to turn a blind eye?  Or can we have the necessary compassion for their plight?  If we cannot surgically resolve their disease, could we consider referring them to someone who can?  Or can we put them into a pain management program?  They will not become addicted, they may become dependent, but at least they will be able to get up off the couch and put the heating pad away and resume living a life.

Endometriosis is not a terminal disease, but despair can be and has been among women with endometriosis.  I know of many…a single one is simply too many.

What I believe we need are trained surgeons to surgically deal with lower stage disease everywhere, and referral centers for complex, deeply infiltrating disease.  Hysterectomies do not cure endo, although there are thousands of us that were fooled into believing that.    It is unacceptable to continue to expect these women to cope with peritoneal quality disease without help and without relief.  We are either part of the problem or part of the solution.  We cannot continue to ignore their plight.  There is a significant body of data now showing that excision of endometriosis lesions restores lives.  How long will we continue to ignore that?

One of my heroes is Sister Kenny, an Australian Nurse who developed physical therapy for the acute effects of polio.  Her therapy and hot woolen packs prevented joint fusion and relieved pain.  She was soundly trounced worldwide by orthopedic experts caring for polio patients for years.  Gradually, there was recognition that she was right.  When asked why she thought it took so long for others to see that suffering could be ended with simple changes in care, she responded:

“When we speak with the voice of authority, we come to believe we are the authority.”

When I read that, I thought, yes, despite evidence to the contrary.  Well, there is evidence, plenty of it, that skilled excision restores lives.

Lastly, another hero of mine is Margaret Mead, a cultural anthropologist from the last century.  She said:

“Never doubt that a small group of thoughtful, committed people can change the world.  Indeed, it is the only thing that ever has.”

Be that small group – nearly 180 million worldwide - that changes the world for women with endometriosis.  Work with gynecologists everywhere to raise awareness of just how much this disease impacts lives and how inadequate many approaches are.   Give them back their lives, their sexuality, their education track, their fertility, their love of life, get them up off the couch, and turn off the heating pads with truly effective surgical management of endometriosis.

It is time to stop ignoring the destructive impact this disease has on women’s lives, the lives of their families, spouses, significant others.

Actually, it’s way past time."

© Nancy Petersen, RN 2013

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EARLIER MUSINGS FROM NANCY:

Musings from a pioneering leader & advocate in the global endometriosis community
- By Nancy Petersen RN

This month on Nancy’s Nook...

Living with Life-Altering Pain

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.

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. It seemed to me this was my lot. Gradually, I began having significant bowel and bladder pain, and about 16 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 endo and Modern Concepts. Often, I would hear stories of pain that were so similar I began to wonder if I still had endo. 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 activity, 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, PhD 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 endo care. 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. 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.

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.

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

On of the books I read was “Flow, the Psychology of Optimal Experience” by Mihaly Csikszentmihalyi.  While it was written in a very scholastic way, 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 hours 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.

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 world wide.

The status of endo care worldwide is criminal. Every woman 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?

- October 2012, Nancy Petersen-RN, Retired

EARLIER MUSINGS FROM NANCY:

New ideas take hold slowly in medicine, unfortunately. A former assistant professor of neurology at Stanford once told Dr. Redwine, “It will take 30 years for your ideas to take hold.” What I did not understand then is…taking hold does not mean conversion. So, the ideas developed in Modern Concepts are taking finally hold – but there are still only somewhere around 100 gynecological surgeons who have been identified as doing effective endometriosis surgery in the U.S.  ERC Advisor, John Dulemba, MD, a robotics and endometriosis excision expert in Denton, TX, thinks that may actually be true worldwide.

Is this means for despair? Well, yes, if you are a person needing skilled removal of your endo - but on the other hand, 30 yrs ago there was only one doctor identified as doing skilled excision. Shortly thereafter, others began showing interest in finding better outcomes for their patients. We still have a while to go for total conversion, however.

I once had a discussion with Spence Meighan, MD, Director of Medical Education at Good Samaritan Hospital and Medical Center in Portland Oregon, about why doctors embraced new ideas so slowly. One observation he had was that only half of what we teach medical students in medical schools was accurate. The biggest issue is that we do not know which half. We should be teaching more art of medicine and science of inquiry…listen, look, inquire and research what the students turned practitioners are unsure about.

Other reasons excision has been slow to become mainstream are many. For one, if you have a busy ob/gyn practice, taking hours per case in the OR plays havoc with office and surgery and delivery schedules. A surgeon simply does not have the time in a general ob/gyn practice to take the time for each endo case that removal of disease requires. Another reason is if gyn is not keeping up with the literature - they then still see excision of endo as "out there". My sister in law recently went to a doctor who mentioned endometriosis to her as a possible diagnosis, and that if so, she would need a hysterectomy. When she asked about excision, the response was that it is “fringe therapy.” Well, if you have multiple laparoscopies, multiple medical therapies, been told to get pregnant, then told you need a hysterectomy and none of that worked, tell me which is fringe therapy!

So this leads to another reason excision may be slow to be embraced. If you take care of endo for the long term in one or two surgeries (Meigs, Redwine, Albee, Sinervo, Robbins et al.), then the loss of income from repeated laparoscopies, office prescribed medical therapies, pregnancies and hysterectomies “prescribed to treat” endo becomes significant. On the other hand, if you move away from scarcity thinking, and realize we have an estimated 8.5 million women in the US needing effective surgery and 176 million worldwide, there is no scarcity of patients needing effective surgery. It becomes a huge opportunity and is gratifying when the patient does well after the disease is detected and removed.

Endometriosis pain is on par with acute appendicitis. Patients develop peritoneal signs and symptoms (bloating, acute abdominal pain, nausea, quiet bowel, sweating, paleness, sometimes fever, etc. etc.), something every medical and nursing student has been well educated to look for in patients. But in endo patients, we can somehow say, "oh, it’s just her period!" If you think about the degree of pain associated with peritoneal inflammation, the LEAST we can do is be sure that the patient has adequate pain relief until disease can be resolved. What we fail to recognize in untreated endometriosis is that this disease restricts potential, sexuality, childbearing, ability to work in many cases, and generally constricts life.

Endometriosis is not a fatal disease, however, despair can be. 

I have seen many, many women permanently relieved of their pain through excision of painful implants. Returning to life as a sexual being, working woman, even as a new mother, they soar as never previously thought to be possible. They are very grateful people.

 The mechanism (inflamed peritoneum) is the same; relief of pain should be comparable. Chronic use of pain medicine does not lead to abuse, it leads to relief, perhaps enough relief that she can get off the couch and turn the heating pad off. It is unconscionable that we turn patients with acute abdominal pain away to suffer without assistance. We would not do that to someone suffering pain from organ perforation, blunt abdominal trauma or appendicitis.

EARLIER MUSINGS FROM NANCY:

ARE YOU ON THE FAILED PATH OF ENDOMETRIOSIS TREATMENT?

The lane to quality endometriosis care is cobbled with failure. First we spend years with peritoneal quality pain, being dismissed while awaiting someone who knew what was going on, or even had a clue that painful cycles during the period or thru-out the cycle were not normal. Just a few years ago it took 15+ years to get a diagnosis. We have improved that dramatically; now it "only" takes 7-9 years to get a diagnosis. Wow! <sarcasm>

 Once a physician begins to wonder if endometriosis is the issue, the next big step is to confirm the diagnosis via laparoscopy. This is a step in the right direction, finally, but alas, generally the physician will remove the scope but not the disease. The next step is to pull out the prescription pad.

The patient will be offered drugs that mimic pregnancy or menopause, with horrible side effects, and/or be told to get pregnant or that if we can just manage to survive until menopause the stuff will “die off”. When these mythic remedies fail, she will be told its time to do a hysterectomy, the ultimate cure.  Not.

The ultimate “curative step of surgical castration” does not work. The disease itself has to be removed. However, excision will not ever be mentioned to most patients!  Yet, as far back as the 1950’s, Meigs et al showed that removal of lesions was the best course of action for pain relief and that recurrence rates were quite low.  This very process of excision when refined and applied by expert surgeons gives dramatic, long lasting relief of pain. Even though the research of ERC Advisor David Redwine, MD from the 1980’s redefined endometriosis into a body of knowledge referred to as Modern Concepts, the powers that be decry his work as controversial. It works where nothing else does. So why doesn’t there appear to be broad acceptance of Modern Concepts? Aaaah...I have a theory!

I believe the powers that be have lost their way and what little compassion they once had. They have given the power to make decisions on educational programs (once they left medical school) to the drug companies who have slithered in with significant profits for prescribing stuff they know does not work. Drug companies sponsor educational meetings for doctors and have come to control the agenda and what will and will not be presented. That never used to be the case!  What could have tempted physicians to turn that power over? Additionally, I see the drug companies becoming more and more active in medical schools.

So the questions that come to mind are:

Are we just bleeding the patients financially, stringing them along with one medication after another, one surgery after another, depleting not only their bank account but their spirit? Is the ultimate goal to keep the patient dependent on the surgeon, desperate for relief of their peritoneal quality pain? Is there some reason doctors do not want to develop skills to remove disease and restore lives?

What motivates doctors to stay with modalities that do not work?

Is all of the ignorance around surgeries that do not work by design?

Is the ultimate goal to do hysterectomies - call it what it is, castrate - on every patient who has failed multiple medical and surgical therapies?

Is it money that motivates this willful ignorance of surgical interventions that work?

We can also wonder about GnRH agonists, because there is a history of drug companies selling them below wholesale to doctors so that they make a substantial profit on each dose delivered in the office. Nevermind that GnRH agonists do not work.

We see doctors generating income off office visits, repeated surgeries, repeated drug prescriptions, and then when they all fail, the ultimate income generator: the hysterectomy. Since women with endometriosis suffer so greatly, with peritoneal quality pain, one has to wonder if it is all part of a grand design to generate income? Why else would the surgeon keep doing what does not work? Resist what does work?

Once the hysterectomy fails, the doctor is done with the patient for the most part. Surely the patient is nuts. I have heard it said many times; in fact 75% of the patients that came for excision where I worked had biopsy proven persistent disease. Disease, when removed, provided dramatic long lasting relief of symptoms. Not all physicians ignore pain after castration but way too many throw up their hands, and too often blame the patient.

We have identified less than 100 of the 52,000 OB/Gyns in the US doing effective endometriosis surgery. This coupled with other multiple modalities that do not work destroys lives, careers, marriages, parenthood, and hope.

Where is the compassion?