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Endometriosis: A Wish Noted

Published on March 12, 2014

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My story is the silent story of many women. I have spent too many days lying in bed, praying for the pain to subside. I’ve crammed myself with medication, submitted to futile surgeries, eliminated so many foods from my diet that there’s not much left. Recently, as part of a campaign for awareness, I was asked to “note my wish” with respect to living with my disease. I ask myself: what is my wish? That after 28 years of living with this disease, four surgeries, and countless failed treatments, I wouldn’t still sometimes be stuck in bed for days or even a week at a time, with debilitating pain? That I’d be able to get up out of bed, walk downstairs and enjoy putting my son to bed, the son that it took me eight years and 6 miscarriages to have?

Maybe I should wish to get back all the time my disease has stolen from me: time when I should have been working, enjoying my children, socializing with my friends, and spending time with my husband. Maybe my wish is that if I told someone the reason why I can’t do these things, they would nod in immediate sympathy and understand, instead of me having to explain what my disease is, and why and how it affects me.

My children immediately knew what their wishes were, when I asked them. My oldest daughter, adopted as a newborn after my first three miscarriages, now twelve years old, said “I wish that you never had any pain, so that you could go shopping with me.” My eleven year old daughter, also adopted, said “I wish that you would never have surgery, and never be in the hospital.” And my six year old son said simply “I wish Mommy’s tummy never hurt at all. Except for 3 days after surgery.”

I have had endometriosis since I was 13 years old, but was only diagnosed at 34. Long diagnostic delays are very common—endometriosis, or “endo” as it is often abbreviated by those who suffer from it, is poorly understood by both the general public and many medical professionals. People with endometriosis don’t look sick, but for those of us who suffer from it, the disease is a powerful force in our lives.

Although I have had a long, and at times difficult, journey with this disease, I have been lucky in many ways. Some people with endometriosis have severe symptoms from the onset of puberty. In my case, my symptoms worsened slowly over time, so I was able to go to university, get two degrees, have a normal social life in my teens and twenties, and get married. My life was not seriously affected by pain and other symptoms until I was in my thirties.

At that point, one of the most prominent symptoms was that I began to have worsening and more frequent episodes of severe pelvic and abdominal pain, which would sometimes radiate to my hips, thighs, and lower back. One notable low point was when my husband was away on a business trip. I was trying to prepare dinner for my kids through worsening pain, which eventually got so severe that I ended up in the bathroom vomiting, with pain so bad I was lying on the bathroom floor, unable to get up. I could hear my girls fighting about something, and my son was pounding on the bathroom door saying “Mommy, let me in. Please Mommy, I’m your best friend!”

My endometriosis continued to worsen despite my best efforts. I had been to five different doctors, trying every treatment that was suggested. After two failed surgeries, many different types of birth control pills and painkillers, and hours of acupuncture, I finally thought I had the answer in a different type of surgery (laparoscopic excision surgery), practiced expertly by fewer than 100 in North America, but that many endometriosis patients get very good results from. I was excited to feel better post- surgery, and I continue to have a lot of relief from my endometriosis pain. However, two months after surgery I rapidly worsened due to problems with severe adhesions (scar tissue) that caused me to have pelvic, rib, chest, and bladder pain, and severe gastrointestinal problems. And even though I have found successful treatment for the adhesions through a specialized form of physical therapy available only in the U.S. (Clear Passage Physical Therapy), I still have times when my pain affects my ability to function in regular daily life. Endometriosis is a complex, chronic, and incurable disease, and often other diseases go along with it and complicate the picture.

Because of how deeply this disease has affected my life, I have developed a network of “endo friends”, and have also become involved in trying to help others with endo. On March 13, people with endometriosis, and those that support them, will unite their voices across Canada, and worldwide in over 54 countries, in the first ever “Endomarch,” aimed at raising awareness of this invisible disease. As part of this event, across Canada, people have been sending wishes to The Endometriosis Network Canada, under the hashtag #awishnoted. The virtual wall of wishes can be seen here.

The hashtag #awishnoted was chosen not just because many people who suffer with endometriosis have wishes for their lives, as I do, but also because it is an anagram for “what is endo?” One of the biggest wishes most endometriosis patients have is that more people would know the answer to that question.

I also have that wish, and more. I wish not just for more public understanding and awareness of what endometriosis is, but also for understanding of its effects on the bodies and spirits of those who suffer from it. I wish for more research to be devoted to finding better treatments, preventative measures, and a cure. I wish for better accessibility of quality medical care for endometriosis patients. And I wish that my children’s wishes for me could come true, for their sake and for mine.

Endometriosis Research and Lipoxin A4: A Biologist’s Perspective

by Geraldine Canny, PhD

Published on March 11, 2014

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My scientific training is in mucosal immunity and I have been interested in lipids which help to dampen inflammation in the body for over a decade. One of these anti-inflammatory lipids is called Lipoxin A₄. Some such lipids are made at sites of inflammation and others are metabolized from fats taken in the diet. Inflammation is a natural response to a wound or an infection and should stop or “be resolved”. Otherwise, inflammation becomes chronic, surrounding tissue becomes damaged and dysfunctions occur, which can manifest in symptoms such as pain. Inflammation was first described many centuries ago but we still do not understand how it resolves. This is a fascinating field and deserves more attention as it could help further our understanding of major chronic diseases, including diabetes type 2, obesity, cardiovascular disease, cancer and endometriosis. However, inflammation is necessary for implantation to occur and it is also an integral part of menstruation, when the endometrium (lining of the uterus) degrades and is shed. Such processes must involve the resolution of inflammation and this is one of the reasons I consider the uterus a fascinating organ.

Endometriosis and Lipoxin A₄ – New Possibilities

I first became interested in endometriosis in 2008 and began this research in 2009. It struck me that a good deal of endometriosis research is of relatively poor quality, with small study numbers and not very novel. Medical treatments for endometriosis are lacking and practically all target the hormonal system, resulting in unpleasant side effects. Medical treatments include progestagens, gonadotropin-releasing hormone agonists (for example Lupron) and oral contraceptives. However, the use of these therapeutics is limited due to the high cost, significant side effects (including premature menopause, decreased bone density and libido) and do not prevent disease recurrence after discontinuation of treatment. Additionally, each of these treatments preclude pregnancy. Therefore improved therapies, with fewer side effects, are necessary.

My group had been working on estrogen signaling and we observed, by chance, that Lipoxin A₄, an anti-inflammatory molecule derived from the metabolism of fatty acids, had estrogenic properties. This was completely unexpected but when we looked at the structure of Lipoxin A₄it resembled that of Estriol, a weak estrogen. Using several different methods we confirmed that Lipoxin A₄did indeed act like an estrogen in the cells that line the uterus (endometrial epithelial cells) in vitro and that it also mediated effects similar to the most potent estrogen, estradiol, in the mouse uterus in vivo. So this was the discovery of a new hormone. Over twenty years ago, estriol had been shown to inhibit certain actions of estradiol. This is because they compete for the same receptor. Picture the hormone as a key and the receptor as a lock, in this case there are two keys trying to fit into the same lock. Lipoxin A₄also inhibited certain actions of estradiol.

As these dual characteristics, anti-estrogen actions and anti-inflammatory properties, are relevant to endometriosis, we decided to examine the effect of Lipoxin A₄ in a mouse model of disease.

Lipoxin A₄ and Endometriosis – The Research

Mouse models, though they do not mimic every aspect of the human disease, are useful to test potential drugs. These preclinical studies showed that Lipoxin A₄prevented endometriosis progression. We induced endometriosis in mice by transferring uterine tissue into donor mice. When looked at under a microscope these “lesions” resemble human lesions. We randomly divided mice into two groups: mice receiving Lipoxin A₄and mice receiving a vehicle, this is the liquid in which the drug (in this case Lipoxin A₄) had been dissolved, which should not have an effect. Endometriotic lesions were smaller and inflammation was decreased in mice that had been administered Lipoxin A₄versus mice who had received vehicle. Many molecules involved in inflammation and cellular proliferation, which are also increased in endometriosis patients, were decreased by Lipoxin A₄. Also, estrogen signaling was blunted. It is noteworthy that Lipoxin A₄did not alter the cycling of the mice, their cycle is shorter than the human menstrual cycle, and no other adverse effects were observed. Lipoxin A₄is an interesting molecule as it has never been associated with harmful effects and in this context can reduce inflammation and also impact estrogen-mediated signaling. These are two major components in the pathology of endometriosis.

Current research collaborations have as a goal to understand the role of Lipoxin A₄in human endometriosis; is more or less of it made? What is it doing and how?

The main problem here is that Lipoxin A₄ is a short-lived molecule and is rapidly broken down. I hope that a more stable analog with the same functions can be synthesized which might eventually become a new, improved endometriosis therapy. I also hope that more discoveries regarding it’s role in the female reproductive tract will be made as it is almost certainly a significant player in this environment.

As referent biologist for a patient association I am saddened by how much women suffering from endometriosis endure and hope they can be heard and that they can participate in transdisciplinary research. For such a chronic and complex disease this would seem logical in order to move the field forward.

The full story: Lipoxin A₄ Prevents the Progression of De Novo and Established Endometriosis in a Mouse Model by Attenuating Prostaglandin E₂ Production and Estrogen Signaling.

Endometriosis: A Husband’s Perspective

by Jeremy Bridge-Cook, PhD

Published on March 10, 2014

19285 views

For the third time this week, I’m on my own helping the kids with their homework, driving them to and from sports activities, feeding them dinner, cleaning up the kitchen, and putting them to bed. My wife is upstairs in bed, in pain that is so excruciating that the only way she can cope by the end of the day is to load up on painkillers and sleeping pills and go to bed as early as possible. While ferrying the kids to their activities, I spend the drive worrying about how my wife is holding up, particularly emotionally. This is not an unusual occurrence for her. And for me, worrying about my wife is part of the life of being an endo husband.

My wife has had endometriosis since she was 13, but it only became debilitating when she was in her 30s. In the last decade or so, she has tried every type of medical and alternative treatment available, searching for solutions to her pain and many other related symptoms and secondary complications. Every day, we talk about how she’s doing that day. She rates her various organs on a pain scale of one to ten. “My bladder is a 7 this morning, unfortunately, but my gastrointestinal system is only a 3, and my uterus and chest pain are barely noticeable, so today isn’t too bad so far.” After the morning pain report, we often discuss medication strategy and any other health-related topics, trying to come up with the best plan for that day for my wife to minimize pain and get the most out of her day. This type of conversation is also part of being an endo husband.

Endometriosis is a particularly complex disease because it can affect almost any organ in the body. Every patient experiences it in her own unique, but usually excruciating, way. An implication of this fact is that, ideally, a team of specialists (especially surgeons) is needed to provide the best care possible for this disease, led by a highly trained laparoscopic excision surgeon/gynecologist. Unfortunately, this type of care is rarely available. More typically, women are simply prescribed one type of hormone therapy or another, and sent home to cope as well as they can. Their pain is often explained away by doctors as being either hypochondriacal, or drug-seeking. Considering how common and debilitating this disease is, the quality of care for most women is truly appalling. As a husband who has watched his wife suffer terribly for years, I have had a close-up, but second-hand, education in what it is like to have a chronic disease that the medical system doesn’t care much about.

Years ago, my wife and I would have discussions about how she should handle conversations with friends and colleagues about her disease. As a naturally introverted person, it went against my wife’s instincts to talk about her body and symptoms in a frank way, especially since her period or ovulations were inherently involved in her symptoms, not to mention organs such as bladder and bowels. My position was always the same: “Just tell them the truth. Don’t hide anything or gloss over anything. Why should you? You haven’t done anything wrong!” Eventually, my wife got used to having these types of conversations. It makes some people uncomfortable, but that’s their problem, not hers.

As an endo husband, I have gradually come to feel a sense of disgust and outrage at how ignored this disease, and the women who suffer from it, are. Research is virtually non-existent compared to other major diseases. Coordinated care is rare. Misconceptions and misinformation, even among gynecologists, is rampant. There is no standard of care, no evidence-based treatment guideline. Women are left to figure it out largely on their own.

Incredibly, my wife is in many ways one of the luckier victims of this disease. She is a Ph.D. scientist, so she can research the scientific and clinical literature while trying to determine the best care possible. She has a strong network of family and friends (including many women with endo). She was able to keep a half-time job until recently. And we have three beautiful children to help keep her motivated to fight this disease tooth and nail, even when it’s at its most discouraging and hopeless.

When my wife asked me if I would be interested in writing a brief article about endo from the perspective of a support person, I quickly agreed. I welcomed the opportunity to make the same plea to all women with endo that I made years ago to my wife. Please, tell anyone who asks how you are doing the whole truth. Don’t hide anything or gloss over anything. After all these years of watching my wife struggle and suffer, there’s one thing I’ve learned the hard way: The only way this disease will stop being invisible and ignored is if all women affected by it (and their partners) speak up together, and demand change. This is what endometriosis awareness month is all about. And this is my fervent hope as an endo husband.

Million Women March for Endometriosis – MWMFE

by Lindsay Murphy

Published on March 9, 2014

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Did you know that March is Endometriosis Awareness Month? Did you know that the yellow ribbon is the color for endometriosis awareness and support? The sponsors of the Million Women March for Endometriosis (MWMFE) have funded and organized a worldwide event to empower, educate and effect change.

The March for Endometriosis

On March 13th, 2014 women battling endometriosis and their supporters will take a stand against endometriosis. The goals are simple; to raise awareness about endo and the lifelong effects it has on both girls and women of all ages. Early diagnosis is key to winning the battle against endometriosis and non-invasive diagnostic tests are needed to make this possible. Currently, the only way to diagnose endometriosis at any stage is to have a surgeon perform an exploratory laparoscopic surgery.

What is Endometriosis?

Endometriosis is a serious and sometimes severely debilitating disease that no one is talking about and some people have never even heard of. In North America estimates are that over 8 million women are currently battling this devastating disease. Worldwide there are close to 176 million women who are suffering the chronic pain of endometriosis. Let’s start with the basics; what is endometriosis?

I assure you it is not contagious like a cold and it’s not an STD from unprotected intercourse. “Endo” as it is commonly referred to; is a disease in which cells similar to the endometrial cells inside the lining of the uterus are growing outside of the uterus. These cells are under the constant influence and control of a woman’s hormones so as a woman gets her monthly cycle, these cells are stimulated, create inflammation, and may cause bleeding in the surrounding tissue. This means that wherever the endometriosis cells have started growing (the ovaries, the cervix, the bladder, the bowel, the colon, the appendix, the diaphragm, the sciatic nerve, the lungs) these areas can become extremely painful due to inflammation, and can develop painful adhesions (scar tissue) that attaches organs together and cause organ dysfunction.

Simple everyday bodily functions are compromised such as urinating and defecating. In extreme cases where endometriosis cells are found in the lungs, thoracic endometriosis causes shortness of breath, asthma-like symptoms and collapsed lungs. Hence the reason that-like cancer-endometriosis is classified by 4 stages. Endometriosis stages (I-minimal, II-mild, III-moderate, and IV-severe) are classified as such depending on the location, extent, and depth of the endometriosis implants and the extent of the adhesions. However, the stage of the disease does not necessarily correlate with the level of pain.

Every woman with endometriosis can make a difference by using her voice! All of our voices have power but only if we use them. This goes for the family, friends, acquaintances, neighbors, significant others and medical professionals who have a woman in their life battling this horrific incurable disease.

What is MWMFE?

The MWMFE is an internationally-coordinated awareness campaign that will occur worldwide on Thursday, March 13, 2014, in dozens of international capitals, including Amsterdam, Belfast, Berlin, Brasilia, Buenos Aires, Copenhagen, Dublin, Helsinki, Kingston, Lisbon, London, Madrid, Oslo, Reykjavik, Rome, Stockholm, Valleta, and Washington, D.C., just to name a few. An internationally coordinated campaign is absolutely necessary to effect the changes that are needed to overturn the status quo.

One person truly can make a difference but together-we can really make a difference in the lives of girls and women who currently battle endo and it’s crippling effects on the body. The 1st annual Million Women March for Endometriosis (MWMFE) will be held at the National Mall in DC and registration and attendance is FREE!

This unprecedented worldwide peaceful demonstration to raise awareness is an amazing opportunity for endo warriors and the people who love them to come together to effect real change. There will be live music and guest speakers as well as men, women, children, celebrities and medical professionals all focused on Endometriosis Awareness.

Please help us end the silence about endometriosis and get the proper care and cure we need before it’s too late.

How to Get Involved

Don’t wait, visit our website today! The event is less than 2 months away! Million Women March 2014. The website will help you:

Register to attend the event in DC on March 13th, 2014
Register to be a volunteer on the day of the event…..there could never be too many participants or volunteers!
We have precinct managers in every state who can help with hotel discounts, flight discounts and event day information if you are planning to attend. They can also help you can make a difference in your own community. Contact us today and we can put you in touch with someone in your area.
If you are unable to attend you can still use your most powerful weapon…..your voice. Get the conversation started! Please help us end the silence about endometriosis and get the proper care and cure we need before it’s too late. We would be honored to have you join the campaign in any way that works for you, even if it’s just a post about the event details on your Facebook/Twitter/Blog.

Feel free to contact us here at MWMFE so we can assist you in getting involved. Email:endomarch.information@gmail.com; Phone: (408) 28-MARCH; (408) 286-2724

Endo is widely recognized as one of the top 10 most painful diseases on Earth. It’s time to end the suffering in silence!

About the author. Lindsay Murphy is a freelance writer currently focusing on Endometriosis Awareness. Lindsay’s battle against Stage 4 Endometriosis has resulted in four surgeries in less than two years. She has a BA in Broadcast Journalism and Mass Communications which comes in handy with writing assignments about endo warriors and their struggles with this disease. Lindsay is traveling the country, changing locations bi-weekly, in order to advocate for more endometriosis awareness and research. “Our voices have power but only if we use them.” – Lindsay Murphy

Another Nail: The Impact of Prescription Painkiller Abuse on Chronic Pain Sufferers

by RC

Published on February 26, 2014

2595 views

Bang, bang, BANG…do you hear that? That’s the sound of nails being hammered into a coffin. No, I’m not trying to be morbid, nor am I in the process of creating a funeral soundtrack. To explain to you what in the world I am talking about, please consider the following current news articles:

“Doctor Admits Drug Sales”
“Prescription Drug Dealer Allegedly Robbed Over $1 Million from New York City Pharmacy.”
“Doctor Pleads Guilty in Drug Trafficking Case”
“Sharp Rise in Women’s Death From Overdose of Painkillers”
“Fort Worth Officer Accused of DWI on Prescription Drugs Is Fired”
“Dentist Pleads Guilty In Prescription Drug Case”

Do you hear the banging now? Each one of these instances of painkiller drug misuse is another nail hammered into the coffin of necessary pain relief for those of us in true need.

Accusations of Addiction

The following is a scene that’s far more common that it should be. A women with endometriosis stumbles into the emergency room screaming in agony. Her endo has flared up and she is in excruciating pain. She waits miserably for at least an hour to be triaged by someone who knows nothing about endo. At triage she is asked what her issue is (as if they can’t tell she’s in excruciating pain!) Due to the fact that she is a confident, strong woman who knows her pain, she immediately advocates for herself: “I have endometriosis and I’m having a flare up. I’m in excruciating pain and I need pain medication!” At the mention of those two words, pain medication, silence abounds. Looks are exchanged between the triage nurses that plainly say ‘oh, she’s one of those’.

“Let’s see what he doctor has to say,” she is told condescendingly, and sent back to wait in agony until her name is called. At least an hour passes while she writhes in pain. After finally receiving a coveted bed in the emergency room and struggling to change into an unnecessary hospital gown she is seen by a resident and proceeds to tell him what is wrong. He tells her he has to discuss her situation with his attending and leaves her crying desperately for some pain relief.

Many minutes pass and he comes back with the verdict: “I’m going to tell the nurse to give you some (FILL IN ANY NON-NARCOTIC, UNHELPFUL PAIN MEDICATION).”

She begs, pleads, cries and screams, but he will not give her anything stronger and suggests she go home and see her own doctor. The nurse comes in with discharge papers and the woman is encouraged to sign them. Right before she does, she finds herself curious to see what they stated her problem was on the discharge papers. She glances at the papers and is shocked to see what is written: unspecified pelvic pain and drug seeking behavior. The poor woman goes home feeling completely dejected, mortified, and often ready to give up fighting.

An Unfortunate Situation

This horrendous occurrence is far too common for women with endometriosis. Too often we are labeled as ‘drug seeking’ or denied pain medication that we desperately need. But it is not only women with endometriosis who have chronic pain. And we are not the only ones being mistaken for drug addicts or drug seekers. There are far too many stories of people with invisible illnesses being accused of drug addiction when all they are trying to do is ease their pain.

Unfortunately, when we review the statistics on prescription painkiller abuse, it is quite understandable why we are accused of such. While about a third of all Americans (more than 116 million people) deal with some sort of chronic pain that might legitimately warrant prescription pain relief, the non-medical use of prescription pain relievers has been estimated at about 5 percent in people 12 years and older. From 1998 to 2008, the non-medical use of prescription painkillers increased 163 percent and between 1992 and 2003 there was a 90 percent increase in people who admitted abusing them. It is currently estimated that 2.4 million Americans abuse prescription drugs.

The FDA Fights Back

It is statistics like these that cause the FDA to create laws that severely restrict the use of prescription drugs. In October, the FDA recommended that tighter controls be placed on narcotics such as Vicodin, and that the drugs be changed to have a Schedule II classification. This would mean that doctors could no longer call in a prescription to the pharmacy for them or write a prescription for any supply over three months. Additionally, the FDA is recommending that label changes be put in effect for long-acting narcotics such as Oxycontin that describe the risks involved in taking the medication. While this recommendation does not directly restrict the usage of these medications, it is assumed that additional warning labels will create more hesitation on the part of the doctors prescribing them, making it more difficult for chronic pain patients.

What’s a Chronic Pain Patient to Do?

So I ask you, my friends: how are those of us who actually suffer from horrendous, excruciating pain supposed to receive the relief we deserve when others around us are abusing the medication that we need? How are we supposed to be helped if the FDA is forced to restrict prescription drug usage in order to prevent abuse? How do we prove that we are legitimate users, and not abusers? And lastly, how are we supposed to wean off of these medications if there is not enough research being done to discover the cause of our suffering and find better ways to improve our pain? It is a constant, cyclical problem that has one, enormous casualty: those of us who are really in pain.

Endometriosis in Canada

by Erin Luyendyk RHN

Published on January 24, 2014

4498 views

At 13 years old, the pain was sudden and intense; unlike anything I had ever experienced before. Bleeding followed three days after the onset of pain. The ripping pain through my abdomen left me shaking, grey, vomiting and fainting on a predictable basis. Every month it was the same story, crumpled into an incapacitated heap on the bathroom floor. Over the counter pain medications offered no benefit. I also developed a weak resistance to infection with suspiciously cyclical flare ups of throat infections, severe fatigue and viral illnesses. I knew something was very wrong from the start, although the medical establishment did not believe me.

Doctor after doctor dismissed my symptoms. “This is normal. Get used to it.” “You’re too sensitive.” “It can’t possibly be that bad, you are being over dramatic.” “You have penis envy.” “You are a hypochondriac; it’s all in your head.” Futile doctor visit after futile doctor visit, I was caught in an unrelenting cycle of illness on a monthly basis. I missed a great deal of high school due to illness and this unrelenting pain with seemingly no explanation.

Following high school graduation I moved to a major city to pursue my education. I was very fortunate to find a new family doctor who did take my symptoms seriously and referred me to one of the country’s leading experts of the highly suspected disease. Several months later, after laparoscopic excision with biopsy the diagnosis was certain: endometriosis. I was 20 years old.

After my surgery I did improve for a while. With continuous birth control pills and copious NSAIDs I was semi-functional; however it got to the point where I knew another surgery was imminent. I had my second laparoscopy with a different doctor in Calgary AB eighteen months following my first surgery. Immediately after surgery I developed a new severe stabbing pain in the lower right quadrant that never went away. I later found out this doctor had lied to me and had actually performed a laparoscopic fulguration of endometriosis rather than the consented to excision procedure despite my very clear wishes that anything other than excision was not to be performed under any circumstances. This doctor continued to lie to me the remainder of time I was under her care. This kind of patient treatment and the complete disregard for patient consent is deemed to be perfectly acceptable and ethical by the Peter Lougheed Hospital and Alberta Health Services.

During this time as my pain was relentless I started learning everything I possibly could about diet and alternative treatments. Although my vegetarian diet has always been quite healthy I found that certain foods absolutely triggered pain and inflammation. As sick as I have been, certain foods make my symptoms a thousand times worse. Dietary therapy and acupuncture were absolutely critical in my functioning in daily life for the next several years (as they continue to be) and inspired me to pursue an education and career in nutrition. I personally and professionally believe an integrative approach to endometriosis (expert excision surgery, dietary therapy, pelvic floor physical therapy, acupuncture etc) is essential in the optimal treatment of endometriosis.

In the summer of 2008 I suddenly became very sick with fever, nausea and a sudden mysterious painful lump in my abdomen. It was deep in the muscle just to the right of my navel and felt like a burning marble embedded in my tissue. Upon seeking medical care, I was sent directly to the emergency room at Vancouver General Hospital for urgent testing. After an eventful evening in the ER, they ruled out appendicitis and other emergent conditions and sent me home for the night to return for more testing the following day. My ultrasound could have been a scene from the pregnant man episode from Grey’s Anatomy. After my initial scan, doctor after doctor came in, followed by residents and students “just to take a look.” It turned out I had what was believed to be (and later confirmed) an extremely rare abdominal wall endometrioma.

Several months later I had a repeat laparoscopy and mini laparotomy to remove the abdominal wall endometrioma with my initial surgeon. I improved for a little while, although my stabbing lower right quadrant pain that started after my second surgery persisted relentlessly. About a year and a half following this surgery I suddenly developed severe nausea and fevers again, along with other inflammatory symptoms that always seem to accompany my endo. Around this time I also developed stomach ulcers and gastritis from years of taking NSAID medications daily like TicTacs and now can no longer use these medications. After a couple of years of my worsening symptoms not being taken seriously by numerous specialists across the city with no treatment offers other than hormones (which I am not interested in due to their serious side effects and questionable efficacy) and various stomach medications I decided to look elsewhere for effective treatment to completely excise all of the endo once and for all.

I consulted with three global endometriosis excision specialists, all based in the United States. All of whom opined that my endometriosis had not been completed excised and diagnosed additional problems that had been missed completely by my leading Canadian specialists. Despite my worsening symptoms, recurrence of the abdominal wall endometrioma and new symptoms suggestive of sciatic endometriosis the doctors here and Health Insurance BC refuse to admit that my rare and complicated case requires a level of expertise that exceeds the present capacities of the Canadian medical system. They would rather pay considerably more to continue ineffective care here than cover likely curative surgery in the United States. My case has remained ignored by the BC Ministry of Health despite having caught the attention of the Vancouver Sun in February 2013. It doesn’t make sense on any level: fiscally, medically or ethically and begs the question does ego matter more than patient care in the province of British Columbia and in Canada as a whole?

I am still locked in a battle with Health Insurance BC and my doctors trying to advocate for the level of expertise I know I need. Trying to decide if I should just have yet another palliative laparoscopic excision in Canada and submit to a lifetime of pain, suffering and surgery or take my fight to the next level so they will hopefully finally realize that covering optimal care is in the best interest of all involved – myself, physicians, politicians and the tax payers. So for now I stick with green juice. As much as I want to believe that the future for other women and girls with endometriosis in Canada is going to be better than it has been for me I remain unconvinced. The politics and attitudes lag far behind the science. This is why it is so important for empowered and educated patients and health professionals to speak up and make our voices heard. Without our united voices nothing will ever change.

Living with Endometriosis: A Story of Struggle and Hope

by Kelsey Chin

Published on January 23, 2014

4200 views

I have been living with endometriosis for roughly 16 years. Like many women, it took a long time for me to get a diagnosis. In fact, it took 14 years to get a surgical diagnosis, 7 years after my first complex cyst was seen during an emergency room visit. I spent years enduring agonizing period pain, chronic pelvic pain, nausea, fatigue, bowel problems, and ovarian cysts. Even after my surgical diagnosis, I had to fight to get the effective treatment and diagnostic care that I deserved. The following video gives you just a snapshot of one year of my life living with endometriosis; a year that I will never forget; a year that will haunt me for years to come.

Living with Endometriosis: a story of struggle and hope

Thanks to a highly skilled excision specialist, I have been given a second chance at a functional life. However, the journey to healing is not yet complete. To read my full story, including my struggle for a diagnosis, two surgeries, infertility, and how I lived through my recent miscarriage, visit:

Bloggers Unite for #EndoMarch2014: Week 2 – What the Endo March Means to Me

Kelsey is an Early Childhood Educator, patient advocate, and blogger from the Boston area. She chronicles her journey using sewing as a positive outlet while living with chronic pain and Stage IV Endometriosis. Unofficially diagnosed at 22, Kelsey has spent seven years learning about her disease, and has recently become active in Endometriosis research and advocacy.She recently founded Endo Sisters Healing Together, a support group for New England-based women with endometriosis. To read more, visit her blog at www.silverrosewing.blogspot.com

Periods from Hell

by Stacey Miller

Published on January 21, 2014

6633 views

Even from the beginning, my periods have been a little off. My first period was light but it lasted two weeks. Some years later I had bouts of nausea and vomiting on the first day of my period. I was eighteen then and I thought God was punishing me for losing my virginity, until I realized that perhaps God had better things to worry about.

Period during Pregnancy

My period even made an appearance when I was pregnant. At about nine or ten weeks into the pregnancy, I started to bleed at work. It was darker like at the end of a period. I panicked, as any woman would. I thought I was having a miscarriage. The emergency room could not tell me any different. I was put on bed rest until it stopped. It went on for two weeks and then stopped just as mysteriously as it began. My son was born about six months later after an emergency cesarean. Two years later, my daughter was born also by cesarean. Perhaps those two c-sections and the tubal ligation are what caused a nightmare that lasted more than a decade.

Tubal Ligation and Heavy Periods

Soon after my tubes were tied, I began to have heavy periods. They would last over a week. I would seem to have to change tampons every hour and a half. When I went to my Ob/Gyn, he put me on birth control pills to snap my hormones back in line. It worked for a while. I took them for about three or four months and then stopped. My periods returned to normal length and flow for a short span of time. Then, it would start again and I would begin the hormone roller-coaster again. Every time I went on birth control, I had to take it longer for it to work. I became frustrated with the fact that my tubes were tied but I was still taking (and paying) for birth control pills. After six or seven years, my body had become immune to the pills. They no longer worked. Worse than the heavy periods was the increasing pain.

Heavy Periods plus Searing Pain

My lower back pain stayed with me since the birth of my children, but it got worse as the years went on. I also developed ovarian cysts and other lower pelvic pain. I had moved and was seeing a new Ob/Gyn. This one seemed to make it a race to see how quickly she could get me out of her office. She didn’t listen to my family history when I told her that every woman in my family had a hysterectomy due to fibroid or endometriosis. She would send me for ultrasounds and other tests that always came back inconclusive. But she never attempted to find out why I was in so much pain or why I had to use two tampons just to be vertical. Her answer was Depo-Provera. It was a shot to stop my ovulation, and therefore, my period. Perfect answer, she said. My periods stopped. My weight shot up forty pounds. After two shots, I decided I would never take any hormones again. So a year later my period came back worse than ever. I lay on the bed for four days straight with back pain that made me want to punch a nun in the face. The bleeding would be bad to normal, but it was the pain that was the unbearable.

Fighting to Be Taken Seriously

I changed doctors again. This time, I went in prepared. I did my research. I knew that if it was a fibroid tumor, the scan would have picked it up. I also knew that many of the suspected conditions could go undetected on such scans. In fact, that was the problem. Endometriosis and adenomyosis can go with symptoms and no real answers for years. As I read the lists on the internet, I recognized signs that I did not even think were linked to my period. Perhaps my back pain had nothing to do with strained muscles. Perhaps my UTI symptoms that seemed to appear around the time of my period had more to do with my period than ill timing.

With a list of symptoms and searing pain to remind me exactly where my backbone was, I walked into the office. I was not going to be bullied or pushed out of the office. She sent me for the same tests: ultrasound and transvaginal ultrasound. The back pain following the exam almost made me pass out. This was not normal, I said to myself. One of the nurses called to try to refer me back to my primary physician. I told her that this pain came with my period and left when it left. This was not a primary physician issue. It was a gynecological issue. She scheduled another appointment and I saw another doctor that was too quick to push me out. “The tests were normal, so I don’t know why you are here. I thought they called you.” She ‘there there’d’ me and handed me a brochure while she encouraged me to think about getting the inside of my uterus singed or taking something to throw me into menopause. As I walked into the office for my next appointment, I overheard one of the nurses comment, “yeah, her ultrasound was fine. I don’t know what she’s complaining about.” That was it. The doctor came in like nothing was wrong so I flipped my bitch switch and let it go. “I know this is new for you but this is old for me. I am tired of going on and off hormones. Every time I go off them, it is worse. I don’t want to do ablation because 40% of women end up needing hysterectomies anyway. I don’t want to chemically force myself into menopause. I do not want to stick a band aid on this. There is something wrong. And while I may not know exactly which bleeding problem it is, I know that ablation is not a definitive answer for any of them. I’ve had my babies. It’s time to solve the problem and stop throwing a pill at it.” She gave in and set up the referral for a surgeon.

Flipping the Bitch Switch

Truth is that I am not sure exactly what it is that I have. On January 24th, I go in for surgery. It was not a quick decision by any means. It came after almost fifteen years of increasing pain and problems. It came when I decided that I was not going to shut up and fill a prescription. So please, if you are out there and still struggling with pain and periods that seem like they are in competition with Niagara Falls, find your own bitch switch and let it go. Because despite what the medical community would rather have us believe, a person can make it all the way through med school and still be a moron. You know your body better than anyone. Take care of it.

Hormones Matter

Where health, hormones, and a whole bunch of other stuff, make sense.

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