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My Battle with Endometriosis: Hysterectomy at 23

Published on June 9, 2015

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At the young age of 19, I was diagnosed with an incurable disease: endometriosis. During my adolescent years, from the age of 13 on, I suffered with debilitating periods every month, and eventually I had ovary pain even when I was not on my menses. My first gynecologist first suggested that I try birth control pills to see if my pain would decrease. She made it seem like it was normal for women to be in so much pain during their period.

When that did not help, we decided that it was time to do a laparoscopic surgery to see if I had endometriosis, since it does run in my family. I was 19 years old. During that surgery, I was found to have endometriosis–she removed it all but a little bit that was on my ovary. I also had a cyst drained. A few months later, the pain was back. My doctor said there was nothing else she could do, so I was forced to find another gynecologist.

Repeated Surgeries, Medications, and Natural Methods with No Relief from Endometriosis

Since my first laparoscopy in 2010, I have had multiple other surgeries. I had laparoscopic surgery for endometriosis in 2012 and 2013. During my surgery in 2013 I also had my appendix removed to prevent disease from growing on it or having it rupture. The surgeon that performed this surgery is an endometriosis specialist. I had to leave pharmacy school twice because the pain was so unbearable.

I have tried almost every birth control pill there is on the market, Lupron, a gluten-free/dairy-free diet, physical therapy for pelvic floor spasms, heating pads, over the counter pain medications, and narcotics as well as Xanax, Cymbalta, Celebrex, Meloxicam, and Ponstel to see if any of these things would decrease my pain and the disease. I also had a colonoscopy done at 20 years old, a CT scan, an MRI, and was tested for interstitial cystitis, a bladder disease that is often found in patients with endometriosis. These procedures did not show anything out of the ordinary.

When I had laparoscopic surgery, I would be pain free for a few months, but then the pain would return, most likely because my body was estrogen dominant. My blood work always came back fine other than my Vitamin D levels were always low. Over the course of five years I went to at least sixteen different doctors trying to find something that would end my pain. However, many of the doctors I went to did not know what else to do because the disease is so complex. It was after I put my body through menopause twice with Lupron, that I decided it was time to have a hysterectomy.

My Hysterectomy at Age 23

One of the doctors I was seeing was supposed to do my hysterectomy, but changed her mind at the last minute because she decided she wanted me to have a uterine nerve ablation instead, which could cause my uterus to prolapse. I did not want to take the chance of that; I just wanted everything removed. She told me she would not do it without me seeing a therapist because I was so young. Once again, I had to find another doctor who would perform the surgery. I met with a new doctor and told him everything I had already been through, and he agreed I had tried everything and was old enough to make my own decisions, so we went through with the surgery.

Hysterectomy did not Cure Me

I was hoping after I had a hysterectomy that would be the end of my struggles, but it was not. A hysterectomy is not a cure and if the doctor does not remove all of the disease while he is operating, the disease can still grow. I had to have another surgery to remove endometriosis at the beginning of 2015, with a different endometriosis specialist than in 2013.

Right now, I am pain free. I am currently on bio-identical hormones to help me sleep and decrease my stress. In just a few months, I will be able to start my second quarter of pharmacy school and hopefully this time will be successful in finishing. I still struggle with my decision to have a hysterectomy because I have always wanted to have kids, but I know I can still have children; it will just be by a different route. I have decided to use what I have been through to help others, and I hope that by putting my story out there that we will be one step closer to finding a cure.

Uterus Interrupted: Endometriosis is not in my Head

by Katelyn Luciani

Published on April 1, 2015

3875 views

It was actually in my uterus, on the cul de sac, on my right lower ligaments, on my appendix, on my bowel stretching across to the right side of my rib cage as well as in the muscle lining of my uterus (adenomyosis). No, endometriosis was most definitely not in my head as so many doctors proclaimed.

As long as I can remember I’ve been living with pain, and it all started back when I was 11 years old when I had my first menstrual cycle. I would get so sick with vomiting and cramping, and be in so much pain I wouldn’t be able to leave my bed or the washroom for the first two days of my period. I never understood why my friends wouldn’t get as sick as me. This was the first time I felt isolated. Every month I would miss at least two days of school–I’d miss out on birthdays, holidays, special occasions (I still do).

My mom used to console me and tell me that she used to have the exact same thing when she was young. When I would go to my doctor she would tell me that this is “normal, everyone woman goes through this” and “it’s nothing a little advil can’t help.”

I have endometriosis. Actually, I have endometriois and adenomyosis, chronic back and pelvic pain, vulvodynia, pelvic floor dsyfunction and I also suffer from depression and anxiety.

It wasn’t until I started becoming sexually active that I also noticed something else seemed off. Sex wasn’t fun… it sucked actually. It was painful and it felt like I was being stabbed. I would be nauseous afterwards and always have horrible back pain and cramping for days.

At this point, I was living in Vancouver. I went to a doctor out there and told him what was happening. His initial reaction was “cervical cancer” and after that was ruled out, he threw the word “endometriosis” at me. This was the first I time ever heard about “endometriosis” but I didn’t think much of it since he insisted it wasn’t a big deal and that the Mirena IUD would be my lifesaver. Well it wasn’t! Insertion was horribly painful and I cramped and bled for about two years straight. I have never felt the same since!

Finally, I was told that my body was rejecting it and had an emergency removal. I was told to just stay off of any type of birth control for a bit and see what happens, since I had been on continuous birth control from the age of 14. I was 25 at this point.

I started experiencing multiple ruptured cysts resulting in over three hospital stays in the course of four months, and I was told this time that surgery was the answer. I was trying to pursue my dreams in Vancouver, where the surgery was performed. The outcome was that he couldn’t find anything: in his words “ I had a beautiful looking uterus and everything looked fine.” I was in SEVERE pain yet there were NO answers! The pain just got worse and worse to the point where I could not work any longer. I was forced to give up my dreams and move back home to my parents’ house in Ontario and wait patiently for my turn to get into one of the best pain clinics in Toronto. Waiting patiently… my Endo-warriors know exactly how that feels.

In the meantime, my gyno referred me to a pelvic physiotherapist who I would see weekly to help with my vaginal spasms as well as internal manipulation to aid in my pelvic floor dysfunction. I was excited knowing that I would have some of the best doctors working on my case. Finally, some answers and some help! It was many months before I was admitted, where in an effort to end my pain I would try anything they suggested.

Blind nerve block injections were suggested as a treatment to numb my pelvic pain. Two to four needles were inserted into my pelvis on two different occasions. This was another let down. I now suffer from chronic pain in that area and constant hip locking as a result of these injections.

Yet another specialist suggested hormonal therapy (Visanne). The side effects from this resulted in a brief breast cancer scare (which did wonders for my anxiety). I now have permanent agonizing cysts in my breasts (fibrocystic breasts) and have an even deeper hatred for my own body.

It was right around this time that I hit an all time low. I was completely discouraged and hesitant to try any other kind of hormonal treatment that was being offered to me for fear of the side effects to my body. I was tired of being a guinea pig, and I felt very alone. I was so tired of hearing that it was “all in my head” and that maybe “I just needed to take some anti-depressants.”

It was right around this time last year that I reached out and found this amazing support group! And after having met other people who had such similar stories to mine, I started to see things in a different light. Maybe I wasn’t crazy? It was so comforting to know that I was not alone in my pain. I started hearing from more and more people who said it was very common to have a number of surgeries before endometriosis was found, and that sometimes the surgeons aren’t necessarily trained to spot endo in all of its forms. I went to the Endometriosis Symposium last year hosted by The Endometriosis Network Canada and educated myself even more. I left feeling empowered. There WAS something I could do…

With the encouragement and financial support of my parents, as well as some generous donations from friends through an online campaign, I finally sent all my health records to a world-renowned endometriosis specialist in Atlanta, Georgia. For two years I had been bouncing back and forth from doctor to doctor who all kept referring to that original surgery, saying that it obviously could not be endometriosis because none had been found. Well, a week after sending my records in, this endometriosis specialist called and after reviewing my past surgery report from Vancouver he confirmed that I most likely had endometriosis and that it was possible that he could improve my quality of life by 85%.

So, I took the trip out to Atlanta. During the surgery he found endometriosis in my cul de sac, on my right lower ligaments, on my appendix, on my bowel stretching across to the right side of my rib cage as well as in the muscle lining of my uterus (adenomyosis). He removed all the lesions as well as my appendix and he performed a presacral neurectomy, which involves snipping the main nerve to your uterus/bladder/bowel area. This is said to work for 75% of patients who no longer feel pain in that area. I, unfortunately, was not one of the lucky 75% of patients this works for. I was told to give my recovery at least six months. I was devastated when there was barely any improvement. Since the PSN didn’t work for me because of my adenomyosis, I will most likely need a hysterectomy in order to get the pain relief I was hoping for, which I am not ready for at the age of only 28. How bittersweet…I finally had an ANSWER, but still NO pain relief!

After constantly getting knocked down by this disease, I am standing up yet again. I am still in pain… I still fight to get through the days, today included. I want my voice to be heard. I am NOT crazy. The symptoms are NOT all in my HEAD. They are actually in my UTERUS!

In the spirit of The Endometriosis Network Canada’s #awishnoted campaign I’d like to share my three wishes.

I wish for more pain free days that I can spend laughing and making memories with my loving boyfriend, and with my incredibly supportive family that I am blessed to have (that includes my endo family too) and with my friends who thanks to this disease I don’t get to see as often anymore.

My second wish is for more funding for endometriosis research right here in Canada.

And last but definitely not least, I wish for the next generation to be educated about endometriosis in health classes at school. Knowledge is power, and together our voices will be heard!

To read more about my journey with endometriosis and adenomyosis, follow my blog at http://uterusinterrupted.blogspot.ca/.

Endometriosis and Clear Cell Carcinoma – Ovarian Cancer

by Linda Parkinson-Hardman

Published on December 22, 2014

2449 views

Endometriosis is a common disease amongst women and is thought to occur in between 7 and 10% of the female population. Whilst it is known that the vast majority of these women will never go on to develop any form of cancer, the work that has been done recently in demonstrating a link between endometriosis and particular types of ovarian cancer could provide an easier way to provide the necessary screening for a disease which is notoriously difficult to diagnose.

A team of researchers from Ovarian Cancer Association Consortium (OCAC) have recently revisited a set of thirteen independent pieces of research into the link between endometriosis and ovarian and cancer and have now confirmed that women with self-reported history of endometriosis have significantly increased risk of developing clear cell carcinoma. Clear cell carcinoma is a cancer in which malignant cells form in the tissue covering the ovary. About 6% of common epithelial tumours are known to be clear cell and of those, 50% are known to be associated with endometriosis. The majority of patients with this type of cancer are between 40 and 80 years of age.

The researchers also showed that there was a clear link between endometriosis and what is called low-grade serous ovarian carcinomas, which are slow growing cancers. They discovered that endometriosis doubled the risk for women developing the disease; however, they also learned that there was no association between endometriosis and high-grade serous carcinomas, which develop much faster and are more aggressive, or other subtypes of ovarian cancer in the study.

In the UK, women have a 2% chance of developing ovarian cancer during their lifetime, this translates roughly into one woman in every 50 developing the disease. Of these figures, around 9 out of every 10 cases will be of the Epithelial Ovarian Cancer type and only 6% of these cases will be of the Clear Cell Carcinoma type (roughly half of one woman in every 50).

About the author: Linda started The Hysterectomy Association in 1996 after having a hysterectomy herself at the age of 32 to deal with the severe endometriosis she had suffered from since she was 16.

The organization came to be when she decided to use the subject of the information needs of women having a hysterectomy as the basis of a thesis for her MSc in Information Studies at Loughborough University. When the research was completed, she was asked by the ladies who had taken part in the research to start an organization just for them; a place that would provide them with a place to go for information and support.

Click on this link to download a copy of the short report detailing the findings from the research.

Linda has written four books, three of them about hysterectomy and the fourth about using the Internet for business. You can find out more about Linda and her other roles by viewing her LinkedIn profile – if you are in business yourself, you may well want to join her too – just let her know that you’re from The Hysterectomy Association. You can also find her on Facebook at: facebook.com/LindaParkinsonHardman

Endometriosis and Hysterectomy: Reality and Recovery

by Angela Wice

Published on August 11, 2014

6192 views

Since my last post in March 2013, after my second surgery for endometriosis I have been through hell and back. My endometriosis continued to spread and cause pain and my doctors all but ignored my declining health.

December 24^th 2013 I wrote my surgeon a letter to express my discontent. I did not feel that I received the care I needed, especially from one of the physicians he had trained. I felt betrayed and was still suffering immensely; I was left to fend for myself. According to them, if I wasn’t willing to take huge doses of endometriosis, nerve or antidepressant meds, then I wasn’t worth their time. I was a lost cause and they effectively ignored me. I really felt lost in the Endo world once again.

When I wrote the letter to my physician, I was at a low point in my life. I hated my job; the stress was so high that I could barely cope. I was on and off medications prescribed by the pain clinic, in addition to those prescribed by my family physician. The side effects from all of these meds were so bad I could not function at work. I would cry at a drop of a dime. I was sick every day. I had to deal with stressful things that I should not have been put in the position to do. I felt like I was losing my mind.

Unexpected Compassion

I can’t remember the exact date, but sometime late January 2014 I got a phone call that changed my whole life. I wasn’t expecting anything, just to vent my frustrations. The nurse intern to one of my original surgeons called me. She said that she had spoken to the surgeon and was told to call me to say that “there seemed to be some misunderstanding” regarding my care. Umm no; there was no misunderstanding, as far as I could tell. The care was bad and they disregarded my continued pain.

She wanted me to come in for an appointment. I was hesitant. I had seen this physician so many times and left his office crying on many occasions over the last three years that I could not see willingly enduring any more appointments. How could I withstand yet another appointment where I was pushed to take more drugs that did nothing to alleviate the pain, while making me suicidal and depressed?

I eventually decided to go to the appointment, because in Canada we have no endometriosis specialists. He is the only one.

I had an appointment with this physician the second week of February. I saw my GP a week before. I felt like I was losing my mind. I needed something to help. She suggested Prozac. I was reluctant, but desperate. I could barely get out of bed, I felt disassociated from my body and felt that I just wanted to end everything. I was suicidal and psychotic.

The following week, I saw my surgeon and he did indeed try to push me onto some fancy, new med that was used for fibroids but was started to be used for endometriosis as well. I pretty much tuned him out. None of these meds work and the side effects are often worse than the original disease. I felt that no matter what I said, he would not listen. I started to cry. It was at this point, his nurse intern, my angel, spoke on my behalf. I am not sure whether it was her job to advocate, but she did and I am forever grateful. From our conversations on the phone and prior to this appointment, she knew what I wanted and expected to have happen. She wasn’t going to let me leave that office without having been heard. When I stuttered or began crying, she stepped in and said what I wanted to say. She held my hand, gave me tissue and had the empathy of someone you would expect to have when they too have experienced life with endo. It was a first for me, her compassion. In all of my 24 years of dealing with physicians and endometriosis, she was the first caregiver who expressed compassion.

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Endometriosis: A Wish Noted

by Philippa Bridge-Cook, PhD

Published on March 12, 2014

2334 views

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: A Husband’s Perspective

by Jeremy Bridge-Cook, PhD

Published on March 10, 2014

19038 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.

Endometriosis in Canada

by Erin Luyendyk RHN

Published on January 24, 2014

4418 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

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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

Hormones Matter

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

endo - Page 3

My Battle with Endometriosis: Hysterectomy at 23

Repeated Surgeries, Medications, and Natural Methods with No Relief from Endometriosis

My Hysterectomy at Age 23

Hysterectomy did not Cure Me

Uterus Interrupted: Endometriosis is not in my Head

Endometriosis and Clear Cell Carcinoma – Ovarian Cancer

Endometriosis and Hysterectomy: Reality and Recovery

Unexpected Compassion

Endometriosis: A Wish Noted

Endometriosis: A Husband’s Perspective

Endometriosis in Canada

Living with Endometriosis: A Story of Struggle and Hope

Living with Endometriosis: a story of struggle and hope

endo - Page 3

Repeated Surgeries, Medications, and Natural Methods with No Relief from Endometriosis

My Hysterectomy at Age 23

Hysterectomy did not Cure Me

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