EndoMarch Blog Week 3

Week 3 January 26th- February 1st

Write a Letter to Your Congressional Representative about Endometriosis, the Endomarch and why he/she should participate.

Here's what I wrote:

"Dear _______________________,

First, thank you for your service. I know it can be a demanding job and often thankless. I appreciate your time.

I am writing to invite you to the EndoMarch in Washington D.C. on March 13, 2014. This march, sponsored in part by the American Medical Association, the American Society of Reproductive Medicine, and other notable organizations, is for awareness about a medical condition that affects 1 in 10 women, namely endometriosis. Endometriosis, where growths of tissue similar to the lining of the uterus are found outside the uterus, can cause debilitating pain, infertility, poor quality of life, and many other complications. The delay of diagnosis is often up to 10 years. It can only be accurately diagnosed by surgical biopsy. The treatment options are often limited by antiquated theories and many doctors have not the time to explore the latest research on their own. To add to this, there are many misconceptions and myths in the general community. All these things can mean wasted time, money, and lives. (For more on endometriosis, see http://www.endofound.org/endometriosis)

With the March, we hope:

• To raise awareness about endometriosis and its effects on women and girls

• To educate and train members of the medical community, in order to promote early detection and improved treatment

• To work with our government and congress to allocate funding for endometriosis

• To unite women and their supporters to take a stand against endometriosis

• To find a cure for endometriosis, and to develop non-invasive diagnostic tests (For more details, see http://www.millionwomenmarch2014.org/)

This is a cause dear to me as I have experienced many losses due to my own struggle with endometriosis. I would appreciate your support that day, even if it is only to wear a yellow ribbon in honor of endometriosis or support the event on your social media.

Thank you again.

Sincerely,

_____________________________"

Trigger Points

From the excellent blog of Yoganatomy ( http://www.yoganatomy.com ):

"A trigger point is a spot or a point in a muscle that refers a sensation to another area of the body. The sensation could be:

• Pain
• Cold
• Heat
• Achiness
• Weakness
• Tingling

We can classify trigger points into two categories, latent and active.
A latent trigger point is one that is not actively creating a pain pattern. The pain is either intermittent or not present until the trigger point itself is directly pressed or activated by some activity.
An active trigger point is one that is actively creating pain or another sensation in your body. In other words, if a trigger point was referring pain to your arm, you would be walking around with pain in your arm on a regular basis.

What Causes Trigger Points to Form?

• Blunt trauma – such as a car accident or a fall.
• Overuse – perhaps a muscle working too hard by compensating for other muscles.
• Lack of use – muscle dysfunction and a decrease in lack of blood flow can be due to lack of use. This can lead to the formation of trigger points.

Not to get too technical but… we are talking about dysfunction on the cellular level. A small number of muscle cells remain in a state of contraction when a trigger point exists. Why? This usually occurs because the calcium used to change the charge inside the cell, which causes the contraction to happen, is not removed or neutralized. As a result the cells stay in a state of contraction.
This forms a small bolus or a tiny “knot” in the muscle at a cellular level. It’s not that the entire muscle is in a state of contraction, just “X” number of muscles cells."

Read more at http://www.yoganatomy.com/2014/01/trigger-points/?utm_source=YogAnatomy+Newsletter&utm_campaign=790f150713-email_02_2014&utm_medium=email&utm_term=0_452e96d3c5-790f150713-97124881

Inflammatory & Neuropathic Pain

Research in neuropathic pain in endometriosis:
 

"Women with endometriosis and pelvic pain almost always have fine, unmyelinated nerve fibers present in the functional layer of endometrium, and these nerve fibers are also greatly increased in the myometrium. Women without endometriosis almost never have these nerve fibers. These nerve fibers may also play a role in pain generation."  http://www.livingwithendometriosis.org/2010/03/28/nerve-clusters-without-myelin-sheath-found-as-culprit-in-endometriosis/

"Hormones and chemicals released by endometriosis tissue also may irritate nearby tissue and cause the release of other chemicals known to cause pain....Some endometriosis lesions have nerves in them, tying the patches directly into the central nervous system. These nerves may be more sensitive to pain-causing chemicals released in the lesions and surrounding areas. Over time, they may be more easily activated by the chemicals than normal nerve cells are. Patches of endometriosis might also press against nearby nerve cells to cause pain."  https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/Pages/symptoms.aspx

"Blood vessels are innervated by sensory and sympathetic fibres; thus when blood vessels branch to vascularise developing lesions, termed angiogenesis, nerves innervating those blood vessels may also branch (neural sprouting), thereby enabling nerves to invade lesions. Zhang et al suggest that endometriosis is a neurovascular condition much like headache, a concept that was also suggested clinically....Prolonged noxious stimulation of the viscera, for example in a distended bladder, which is normally not a painful stimulus, can evoke increased excitability of viscerosomatic neurones in the spinal cord and subsequently cause pain. Once triggered, this central sensitisation is sustained despite the termination of noxious input, demonstrating that pain may be experienced even in the absence of peripheral noxious stimuli....This establishes central hypersensitivity whereby normal sensory stimuli, in a magnified form, are perceived as pain. This may also result in muscle hyperalgesia, as muscles are closely related to viscera and the nerves. There is also an implication of chemical changes, for example in the central neuromodulator N-Methyl-D-aspartate.
There is also evidence that painful endometriosis can be classified as a mixed inflammatory and neuropathic pain condition or a neurovascular condition, both of which open new avenues for pain relief."  http://bjp.sagepub.com/content/early/2013/03/21/2049463713481191.full

"Although about ten years ago it had been noted that pain can be more severe in patients whose ectopic growths are located near or in richly innervated anatomical sites (rectovaginal septum, uterosacral ligaments) than in patients whose growths invaded less densely innervated tissue (peritoneum and/or ovaries) [4], [5], scant attention was paid to this finding regarding nerves; research and drug development remained focused on the ectopic growths and their immediate external environment (e.g., peritoneal fluid and local inflammation) as the source of the pain....Our group discovered that ectopic growths harvested from ENDO rats and women with established endometriosis develop their own C-fiber (sensory afferent) and sympathetic (autonomic efferent) nerve supply. The supply is derived from nerve fibers innervating nearby territories that sprout branches into the growths [10], [11]. This discovery suggests that, rather than the growths alone, it is the ectopic growth's own innervation that is a major contributor to the maintenance and modulation of pain in established endometriosis [12]. It remains unknown, however, whether this sprouted and thereby abnormal innervation contributes to the initial development of endometriosis-associated pain. If so, painful endometriosis, now recognized as an inflammatory condition [3], could also be considered within the realm of neural dysfunction, i.e., a mixed inflammatory and neurogenic pain, which would alter clinical approaches to the pain.... Our findings strongly support the hypothesis that the invasion of the cysts by sensory and sympathetic fibers is a major contributor to the development of endometriosis-associated pain, which suggests an aggressive clinical strategy of prevention."  http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0031758

In reference to the above study, this article was written by Chandler Marrs, PHD for HormonesMatter.com: 

"If the innervation is associated with endometrial pain, it is possible that curtailing the nerve growth could eliminate, even prevent the pain, but only if this disease process is identified early enough.
In the rat model, innervation developed in phases.  Within the first two weeks of the tissue implant, a cyst developed and initial sensory and sympathetic nerves sprouted.  Over the next weeks, the nerve sprouts became functional and neurogenic inflammation developed. Finally, over weeks four and five, the cysts became wholly populated by functional sympathetic and sensory nerve fibers. Pain ensued. Researchers found that removing the cysts before they reached the functional stage prevented the development of neuropathic pain- the vaginal hyperalgesia.

Although it is not clear what the time course of cyst innervation would be in human women -for rats the entire estrous cycle is 4-5 days, significantly shorter than the female menstrual cycle- it is clear that efforts should be made to identify and diagnose endometriosis significantly sooner than is currently the average.

That would require investigating the causes of dysmenorrhea and not automatically attributing the pain with menstruation to normal premenstrual or menstrual cramping, as is so often the case. Currently, the average time to diagnose endometriosis is nine years. Research suggests that 90% of adolescent girls have dysmenorrhea and 25-38% of adolescent girls with chronic pelvic pain have endometriosis.

If cyst development stages could be identified in women and if endometriosis diagnosed earlier, then removing or treating cysts before fully innervated could prevent a lifetime of what we now know to be neuropathic pain....Though many are loathe to admit it, hormones are likely involved. In many regions of the brain hormones elicit and modulate neurogenesis. Research also demonstrates a role for hormones in spinal and peripheral nerve functioning. As results from this study suggest, hormones may also influence somatosensory nerve growth in the uterine and extra-uterine endometrial tissue. Understanding the role of hormones in the innervation of endometrial tissue could open up entirely new therapeutic options."  http://www.hormonesmatter.com/endometriosis-and-neuropathy/

So what's Europe doing?

Here's a link to the European Society of Human Reproduction and Embryology's guidelines for the management of women with endometriosis:

http://humrep.oxfordjournals.org/content/early/2014/01/15/humrep.det457.full.pdf+html

Excerpts:
""Are hormonal therapies effective for painful symptoms associated with endometriosis? Currently, hormonal contraceptives, progestagens and anti-progestagens, GnRHagonists and antagonists and aromatase inhibitors are in clinical use. With no overwhelming evidence to support particular treatments over others, it is important that the decisions involved in any treatment plan
are individual, and that a woman is able to make these based on an informed choice and a good understanding of what is happening to her body. GnRHagonists, with and without add-back therapy, are effective in the relief of endometriosis-associated pain, but can be associated with severe side effects, which should be discussed with the woman when offering treatment. No evidence exists on the effectiveness of GnRH antagonists for endometriosis-associated pain (Brown et al., 2010). Due to the severe side effects, aromatase inhibitors should only be prescribed to women after all other options for medical or surgical treatment are exhausted."

"Excision of lesions could be preferential with regard to the possibility of retrieving samples for histology. Furthermore, ablative techniques are unlikely to be suitable for advanced forms of endometriosis....Based on the current evidence, the GDG concluded that there is no proven benefit of post-operative hormonal therapy (within 6 months after surgery), if this treatment is prescribed with the sole aim of improving the outcome of surgery (Furness et al., 2004). However, there is also no proven harm of prescribing hormonal therapy after surgery; hence some forms of post-operative hormonal therapy could be prescribed for other indications, as contraception or secondary prevention."

"As a consequence, the lack of clear-cut evidence leads to many research questions. We propose that future research on clinical aspects of endometriosis should include at least: (i) The effectiveness of surgical excision of AFS/ASRM Stage III–IV endometriosis in the treatment of infertility in comparison to direct referral toART, (ii) the diagnostic value of laparoscopy with or without histological verification, (iii) the best way of secondary prevention of endometriosis, (iv) the best management, with respect to both reproductive outcome and pain, of ovarian endometrioma
and of deep endometriosis in women with an active child wish, (v) the use of biomarkers for diagnosis and disease monitoring in endometriosis, (vi) the benefit of anti-adhesion agents in surgery for endometriosis-associated pain, (vii) the clinical management of endometriosis in adolescents, (viii) the psychosocial impact of endometriosis and how this should be addressed: patient-centred care, couple-centred interventions, interventions to improve quality of life, (ix) the definition of
the prerequisites of centres of expertise in the management of endometriosis, and finally, (x) the achievement of an earlier diagnosis of the disease, by raising the awareness amongst primary care specialists, gastroenterologists and internal medicine specialists."

"Several studies have reported a long delay in the diagnosis of endometriosis. Recent studies report, specifically for Europe, an overall diagnostic delay of 10 years in Germany and Austria, 8 years in the UK and Spain, 7 years in Norway, 7–10 years in Italy and 4–5 years in Ireland and Belgium (Ballard et al., 2006; Nnoaham et al., 2011; Hudelist et al., 2012)."











      

Pain Sensivity Related to Brain Structure

 Medscape Medical News

 

"An individual's sensitivity to pain appears to be related to the amount of grey matter in certain regions of the brain, a new study suggests.

"This is the first time that a relationship has been shown between pain sensitivity and brain structure. This initial discovery adds to our basic understanding of brain mechanisms and could lead to clinical implications in pain management," senior author, Robert Coghill, PhD, Wake Forest Baptist Medical Center, commented to Medscape Medical News....

Results showed that individuals with higher pain intensity ratings had less grey matter in the posterior cingulate cortex, precuneus, and areas of the posterior parietal cortex — areas of the brain that contribute to internal thoughts and control of attention.

Pain is very good at getting your attention, but it may be possible to change your pain sensitivity by practicing directing your thoughts elsewhere," Dr. Coghill told Medscape Medical News. "For example, meditation and mindfulness training, in which you learn how to better control your thoughts, has been shown to be associated with a remarkable reduction in pain intensity."

In addition, he said, individuals who have meditated over the long term have been shown to have more grey matter in certain areas. "So it does seem possible to build up grey matter, and train the brain to be less sensitive to pain," he said." http://www.medscape.com/viewarticle/819556?nlid=45823_1882&src=wnl_edit_dail&uac=118924EX

 

Links for tips about mindfulness meditation:

 

http://www.shambhalasun.com/index.php?id=2125&option=content&task=view

 

http://marc.ucla.edu/body.cfm?id=22

 

http://www.ted.com/talks/andy_puddicombe_all_it_takes_is_10_mindful_minutes.html

 

http://meditationscience.weebly.com/what-is-mindfulness-meditation.html

 

http://www.youtube.com/watch?v=yMz_UagXkFk

 

http://www.youtube.com/watch?v=QsFIV4LLYRI

 

http://www.youtube.com/watch?v=hrTeEkXrlQ4

 

 

Endometrial Polyps

"Endometrial polyps are a localized endometrial intrauterine

overgrowth that may be single or multiple, may measure

from a few millimeters to centimeters, and may be sessile or

pedunculated [1]. Endometrial polyps consist of endometrial

glands, stroma, and blood vessels [2]....

There appears to be an association between the finding of

endometrial polyps and other benign diseases including

myomas, cervical polyps, and endometriosis [11,18–20]."  http://www.aagl.org/wp-content/uploads/2013/03/aagl-Practice-Guidelines-for-the-Diagnosis-and-Management-of-Endometrial-Polyps.pdf
 "Polyps: polyps or other growths inside the uterus can act as an obstruction to the outflow of blood during menses. This can increase clotting. These growths can also bleed themselves." http://centerforendo.com/articles/clots.htm 

"Spotting between menstrual cycles is a common symptom of this condition. The menstruation periods may also be very heavy and prolonged in duration. A women with endometrial polyps who has already been through menopause may discover unexpected spotting. Pelvic pain in the presence or absence of menstruation may also be experienced. In some incidences, especially large polyps may cause infertility."  http://www.wisegeek.com/what-are-endometrial-polyps.htm

What does the Endomarch mean to me?

I suffered from endometriosis long before I knew what it was or that I had it. No one should have to go through years of pain, thinking or being told it was "normal." No one should have to go 7-9 years with multiple misdiagnoses before accurate diagnosis is made. No one should have to go through inadequate and at times harmful treatments and yet still end up with the same pain and affliction.

My story, in short form, goes like this:

I had hard times with periods but thought that was normal.
I functioned for a few years, but college found me being more incapacitated.
It got bad enough I finally had to quit a demanding job and find one that was part time with less call.
I still didn't realize how abnormal it was to be that incapacitated. I guess I thought I was weak.

My pain worsened and stretched beyond my period days. "Irritable bowel" symptoms worsened.
The doctor thought of a few diagnoses and tried to treat them but they didn't help.

Friends and family finally convinced me I needed further care.
I saw a nurse practioner who tried a few things and suspected endometriosis.
At this point, my pain was month long with acute episodes during periods- not to mention fatigue, bowel symptoms, etc.- that left me barely able to work at all and bedbound for about 3 days with no sleep because of intractable peritoneal pain.
I was referred to an ob/gyn who could perform surgery.

The ob/gyn wasn't convinced it was endo, but after about passing out, I told the doctor it was time for surgery.
The ob/gyn performed surgery and, to my relief, found endometriosis.
I say relief because there was an explanation for my pain. It had a name.

He ablated the endo he found in the posterior cul de sac and put me on continuous birth control.
I was amazingly better but still had some symptoms.
Unfortunately, those symptoms crept back up again.

After doing all he could for me, he referred me to another doctor who performed excision and did more surgeries on endo patients.
I had another surgery where endo was found on my bladder, uterus, peritoneum, round ligament, and uterosacral ligaments.
My story doesn't end there though.

Years of terrible pain had left me with pelvic floor dysfunction (hypertonic). I still have symptoms that might indicate adenomyosis. I still get uterine polyps. I might still have some endometriosis. I still have some hormonal imbalances. The evil of endometriosis is that it rarely travels alone. It brings its malevolent friends along- pelvic floor dysfunction, interstitial cystitis, adenomyosis, hormonal imbalances, and the list goes on. It has kept me from having the educational, professional, and quality of life opportunities that I would wish for. It's a long and winding road with no end in sight. That's why I march.

I was blessed that my doctors believed my pain and suffering. They kept searching to figure it out and offer treatments to help beyond "take a pill." There are so many myths and misinformation out there. Things that modern research has long since rebutted. I've been told by acquaintances to get pregnant or have a hysterectomy and that would cure me. Endo also seems to be shrouded by silence of being a "female" issue- the way breast cancer once was. If every other commercial seems to be for erectile dysfunction and October can be engulfed in pink, I think endometriosis can be talked about without embarrassment. I believe it is past time for the myths to be dispelled, the misinformation to be corrected, for research to be funded, treatments to be advanced, and better education to the medical community. This is why I march.

Please join me and the other women for

Endomarch on March 13, 2014.

http://www.millionwomenmarch2014.org/