a wish noted Archives - Hormones Matter

Uterus Interrupted: Endometriosis is not in my Head

Published on April 1, 2015

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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 Awareness Month: A Wish Noted

by Philippa Bridge-Cook, PhD

Published on March 16, 2015

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Everyone who lives with endometriosis as a patient, or as a family member, partner, or friend of a patient, has something (or sometimes many things) they wish for, with respect to this disease. In March, as part of their Endometriosis Awareness Month activities, The Endometriosis Network Canada asks people from across Canada to send them their wishes with the hashtag #awishnoted, which is an anagram for “what is endo?” These wishes are displayed as a digital “wall of wishes,” and as an actual physical wall at the Endomarch Canada event in Toronto. Wishes range from wanting better medical care, to wishing for a baby, to wishing for continued strength while dealing with endo.

I also have an endometriosis wish, and it is a big one. But as William Arthur Ward said: “If you can imagine it, you can achieve it.” My wish starts with all teenagers being educated about the signs and symptoms of endometriosis, so that people would be aware of the possibility of endometriosis as soon as they start developing symptoms. The primary care practitioners would also be educated about endo, and would refer to a specialist when they suspect the disease.

The specialist care would be delivered at a multidisciplinary centre of expertise in endometriosis. This care would include the appropriate medical expertise, such as skilled excision surgeons, and other medical specialties as required, such as urology and gastroenterology. In addition, endometriosis patients would receive care from women’s health physical therapists and nutritionists, and other alternative/complementary medical practitioners as needed. Pain management specialists would also be an option for care if required. Counselors would be available to help patients deal with the emotional impact of the disease, and patients would be referred to support groups, for peer support from others who are dealing with endometriosis.

As if that isn’t enough to be wishing for, I also wish that the general public had a much greater awareness of endometriosis, how devastating it can be, and how wide-reaching the emotional effects are. If this were the case, in addition to receiving excellent healthcare at a centre of expertise, endometriosis patients would also receive better support from people in their daily lives.

However, the reality of living with endometriosis today is far different from this vision of what could be. In my work with The Endometriosis Network Canada, I am privileged to interact with many endometriosis patients. They are all incredibly strong people who continue to fight for a better quality of life, on a daily basis, despite all the obstacles around them. Many of them fought for years to obtain a diagnosis, usually hearing along the way from doctors “there is nothing wrong with you,” or “your problems are not physical, they are in your head,” or “I can’t/don’t know how to help you.”

Even once endometriosis has been diagnosed, often the care women have received is horrifying. I have talked to women who have been butchered by inept surgery, suffered complications that could have been avoided, or who have had unnecessary hysterectomies during surgeries that are supposed to treat endometriosis, where all or most of the endometriosis was left in the body but healthy organs were removed. Many endometriosis patients have been refused care by specialists, for reasons unknown. Some have been offered anti-psychotic medication or sedatives instead of painkillers, as a “treatment” for endometriosis or chronic pain. My vet once commented to me that animals receive better care than women with endometriosis.

For many endometriosis patients, they have no support network around them. They may have partners, family, and friends who do not understand the medical effects of endometriosis, and definitely do not understand the emotional consequences of living with chronic pain and other debilitating symptoms. Some have lost jobs, partners, and custody of their children as a consequence of their disease. Many are depressed and anxious, or worse, suicidal.

This state of affairs is not ok. We are capable of doing more for people with endometriosis, except that not enough people care about the current state of affairs for things to start changing. It is hard for me to imagine that if most people really knew about what life is like for many people with endometriosis, they would be ok with abandoning over 176 million women worldwide to this kind of suffering and medical mismanagement.

This is why March, as Endometriosis Awareness Month, is important. Most people with endometriosis face the task all year long of educating those around them about their disease. However, in March, endometriosis patients come together, and make their voices heard even more loudly, as a united group. We are tired of suffering and being ignored. We want people everywhere to understand what endometriosis is and why it is a major healthcare crisis, and we want people to care enough to start demanding the changes in our education system, in our medical education system, in our insurance systems, and in our healthcare delivery systems, that would make my wish become a reality.

Endometriosis: A Wish Noted

by Philippa Bridge-Cook, PhD

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.

a wish noted

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