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. 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 perhaps for scholars, 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?

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Persistent pain after endometriosis surgery

Persistent Pain after Excision Surgery – by Nancy Petersen, RN
By Lisa Graham Magnuson on Sunday, November 17, 2013 at 10:23am
Lets talk about persistent pain: Once you have had advanced excision by a specialist, and have persistent pain, there are a number of factors to consider. First in other than speciality hands, persistent pain most often is missed disease. Second, in speciality surgeons hands it can mean new disease, adhesions, pelvic floor dysfunction, painful uterus, IC of the bladder, and or other disorders completely unrelated.

So one has to go about sorting out what is going on. Diagnositic studies of bladder and bowel can be helpful in ruling out disorders of those organs, however endo of the bowel rarely shows up on diagnostic studies. So normal studies may not eliminate endo but will eliminate (usually) other disorders. Pelvic floor evaluation by a womens health certified pt can be helpful in finding issues taht may be related to muscle spasm, hip disorders, even unequal leg length which can lead to hip and back pain, painful sex. Pelvic floor pt can be very helpful in addressing these issues. Sometimes vaginal muscle relaxers are worth a try, and sometimes specialists will do botox or other injections to ease discomfort with these issues.

Uterine ultrasounds can help in identifying adenomyosis of the uterus which can be a big factor in pelvic pain and or heavy bleeding. Some GYN’s have found that they are more likely to find adenomyosis if they do the ultrasounds themselves. If adenomyosis is an issue, then discussion of management can follow. This will sometimes entail suppressive (hormone) therapy to stop periods until a pregnancy is desired, or until menopause, or until such time as a hysterectomy seems appropriate. (saving ovaries if at all possible because long term estrogen replacement for bone and heart health are fraught with issues, and may not be protective and may increase risks of cancer).

I say after ruling out other possibilities, if you have had excision with a specialist and still have or develop new symptoms that seem like endo, go back to that specialist. A re-look laparoscopy would seem like a good idea. And who better to look that a doctor who has been there before, has advanced endo skills and compassion for pelvic pain? Second opinions are always a possibility, but if you have a good surgeon to start with who is listening and compassionate, then I would encourage a second look with that doctor.

Stay focused on what you have to do for yourself to get the best outcome

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Recently when I posted that less than 100 out of the 52,000 gyns in the US had been identified as doing effective endometriosis surgery, I heard from a group of gyns who were offended by the comment. Yet as we discussed my comment, what came out were a variety of comments that support my position. They knew of “subtle appearances” and indicated that guided their practice. But some do not operate on colons, bladders, ureters or diaphragms nor did they have consultants to assist with disease in this area. some did not feel removal of mild disease was even warranted.
Still some do not operate in the lower pelvis, do not refer for pelvic pt, do not refer for pelvic pain management and despit the signs and symptoms of peritoneal inflammation do not believe in pain medicine to assist with coping of peritoneal quality pain. (bloating, paleness, severe pain, slowed bowel, nausea, restlessness, rebound tenderness or painful pelvic exams). Endo causes peritoneal inflammation and there is not a med student or nursing student on the face of the earth who have not been taught to recognize peritoneal signs and symptoms. Most would treat it aggressively. Some dismiss it as just her period. Try living with appendicitis constantly, or a dozen grains of sand in your eye for a lifetime.

To relieve pain, all disease must be removed. One has to know not only what it looks like, but where it is found. I was surprised to hear so many physicians will see it as a disease of the ovary, but statistically, the ovaries are 7th and 9th in order of frequency of involvement, not first. So knowing where disease is found is a big step toward being effective surgically. Additionally, having either surgical certifications to operate on all areas endo is found, or a stable of consultants able and willing to do so is another huge factor in outcomes. Recognizing endo lies beyond the pelvic cavity is also major.

Today in the support groups nearly every day, I hear from women who have been castrated (total hyst) and yet have endo type symptoms. Yet they are told over and over there is no way endo can be present after a hyst. Yet there are a number of studies that show us endo can and does persist after hyst if it too has not been removed. Too often the hyst was done to treat the endo. (without excision of endo implants elsewhere). There is ample evidence that removing normal tubes, ovaries and uterus does not ease endometriosis pain nor does endo dry up and go away after castration. There are good reasons to do a hyst, but endo is not one of them, and the long term impact of hysterectomy is not ofset by estrogen replacement when it comes to bones and heart. (as I understand it).

What women seem to want is compassionate understanding of how severe the pain is, to not be told medical therapy treats endo (we know it doesn’t), to not by hysterectomized for endo treatment when removing lesions skillfully works much better. If their doctor cannot do skilled excision surgery, they express a desire for referral for pelvic pt to a certified womens health therapist, and or to a surgeon doing skilled removal of disease.

Pain management may lead to dependence, but rarely abuse, and it often allows women to get up off the couch, put their heating pad away, and get back into life.

When we say we want effective endo surgery, we are looking at a desire for prompt diagnosis, compassionate understanding of the severity of pain, and skilled removal of disease. This comes out in the discussions every day, multiple times a day, and is critical for the industry to begin to understand. Drugs do not treat endo, most of the side effects are unpleasant to say the least, and the altered hormonal states unacceptable to most.

Nancy Petersen

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Psychological dismissal of women with Endometriosis

Psycho-Social Issues for Women with Endometriosis
(I wrote this 25 yrs ago, still way too true today)
By Nancy Petersen, RN
Director, St. Charles Endometriosis Treatment Program

In the early 1920’s Sampson and others told us that women with endometriosis were infertile and that the primary pain symptom was dysmenorrhea. It was further asserted that the most frequently involved areas were the ovaries, and that the lesions were black, and/or brown. The original concepts further told us that pregnancy, menopause, or surgical castration would affect a cure. On these basic concepts all modern therapies have been based, including drug therapies suppressing ovarian function

What is happening to women across the North American continent and around the world, is that large numbers who fail to fit the original paradigm of endometriosis are undergoing psychological dismissal. This dismissal is very damaging in that they become isolated from their families, partners and the health care system. This dismissal is reported by Kate Weinstein in her book, Living with Endometriosis, to be as high as 75 %. My tracking of patients experiences at that time, matched Kate Weinstein’s data exactly. Yet literally all of our patients at that time, had biopsy proven disease despite multiple treatment failures. Sadly this continues today.

Since medical therapy does not eradicate the disease, and since laser vaporization and electrocautery have been shown to be ineffective as well, most patients with endometriosis are at risk for ineffective therapy. Patients came to Bend from around the world when multiple attempts at treatment had resulted in failure. Their stories illustrate that their dismissal is real, and can come from female as well as from male physicians.

They report being referred for counseling, psychiatric care, blatantly called neurotic, or just being ignored since they have not responded to treatment. As those around them begin to see the dichotomy between what the health care provider believes and what the patient is experiencing, considerable confusion develops.

Too often there is abandonment of the patient by her crucial support system and she grows more and more isolated. The degree of isolation and frustration is proportioned to the degree of treatment received. It could be seen that if a woman does not get the treatment she requires then she feels isolated and frustrated. BUT the more treatment a woman receives the more she begins to realize that this disease is not going to get better so this could deepen the sense of frustration and isolation as the family/support system backs away.. (catch 22)………

The impact on their relationships and the quality of their lives may lack appreciation in the healthcare arena. In the presence of pelvic endometriosis, these women often exhibit abdominal bloating, abdominal pain, pale skin, faintness, restlessness, and sometimes low grade fevers. These symptoms in other patients would garner healthy respect by most physicians. In women with endometriosis, doctors are somehow able to excuse the presence of such symptoms and their denial grows more profound once the woman has been castrated for treatment. (Because there is no answer given by the doctor as to why a woman still has endo after having a total hysterectomy – after all, she was advised that the hysterectomy would get rid of it; and a doctor is unlikely to own up and say he was wrong)

If 175 million men world wide, suffered unbearable pain during sex, bowel movements, and exercise, and were offered feminizing hormones, pregnancy or surgical castration as treatment, our attitudes would be quite different.

Women with endometriosis struggle with life altering pain, less than supportive attitudes by far too many healthcare providers, try to maintain relationships, family and careers, and they deserve our support and respect.

Until there is widespread agreement on the nature of this disease, the best outcome based therapies, and more follow up studies to support all that we do for women with endometriosis, the least we can do is to have compassion for their pain, offer relief from it, or refer the patient to someone who can care for her whether it be surgical excision, pelvic physical therapy, or pain management.

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Women with endometriosis are 176,000,000 strong world wide, and over 8,000,000 in North America.  They suffer pain with exercise,  pain with sex, pain with bowel movements, pain with full bladders, pain with pelvic exams, pain mid-cycle, during the period or through out the cycle.  Nearly 75% of them have been dismissed as neurotic at some point in their attempts to find adequate care.  More so if they have failed any of the standard treatments (all of which are inadequate). 

Endometriosis is a condition where tissue similar to the lining of the uterus are found through out the abdominal cavity and sometimes elsewhere causing severe pain.  They cause bleeding in the surrounding tissue, but most of the lesions themselves do not bleed.  But they create blood and free fluid in the abdomen, which causes a predictable, inflammatory and very painful response.  Old myths indicated that endometriosis came from menstrual blood backing up and bringing parts of the endometrium that lines the uterus with it, to implant and grow.  Modern science has shown these two tissues while similar are not the same at all, they are not physically or metabolically alike. 

As treatment they are told to get pregnant, have a hysterectomy (castration, lets call it what it is,) or take health damaging drugs which mimic either or both, while giving masculinizing side effects.  None of these options work.

Safe it to say,  that if 8 million North American men suffered unbearable pain during exercise , sex or bowel movements and were offered as treatment feminizing hormones, pregnancy,  or surgical castration………….endometriosis would be a an international emergency to which we would transfer our combined defense budgets.

What does work, is Modern Concepts.  These ideas were developed and enhanced by a gynecologist in Bend Oregon in the late 1970’s and early 1980’s when he began to see things in his patients both symptom-wise and at surgery that did not fit with the things he was taught in medical school. 

As he began to biopsy all of the abnormal lesions he found in the pelvis, very quickly the black lesions thought to be the standard presentation of endometriosis were found to be positive only half the time.  However, the other abnormalites found there were positive for endometriosis by evidenced by the pathology reports. 

As he searched the literature, he began to find a smattering of others who noticed that endo had many colors and many locations and even a few doctors advocated removal of teh diseaese, and that in most cases one or two well done surgeries could cure the patient.  This of course flew in the face of 100 years of myths that had built up around the disease and continue to drive medical care for these women today.

There are 52,000 gynecologist in the USA and several more thousand in Canada.  Less than 100 have been identified as doing effective surgery on women with endometriosis, and yet they all consider themselves experts.  As patients fail the ineffective surgical and medical therapies, the patients are likely to be dimissed as neurotic.  Over 75% have reported this as noted by several authors. 

Shirley Pearce of the UK , a noted gynecological professor, did a literature review on women with pelvic pain and published it in a text called Psychological and Gynecological Problems.  In Chapter 6 she discusses the testing done on women with chronic pelvic pain, and finds that MMPI studies reveal that most will have an abnormal pyschological profiles.  These profiles reach from simple neurosis, to schizophrenia and psychosis.  She further noted that most studies did not revisit women’s testing once pelvic pain was relieved.  But those who did retest their psychological profiles almost all were found to retest normal or near normal. 
 These psychological profiles are abnormal simply because they cannot cope with peritoneal quality pain.  This kind of pain demands intervention and pain management in any other condition but in women with endometriosis, it is somehow unacceptably dismissable.

Dr Redwine’s work dispelled many other myths about endometriosis including that endo does not spread, they hysterectomy does not cure endo, that the disease goes through  age related color appearance changes, that true recurrence when completely and carefully resected is quite low.  Pain relief is dramatic and long lasting.  While he is no longer in practice, many others have taken up the approach to this disease and are finding that they are restoring lives and stopping endo in its tracks.

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