endo pain

Endometriosis and the Journey to Advocacy

2298 views

I will never forget the words the doctor in the ER said to me: “I will not support your habit and I will not prescribe you anything.” These words, so easily said, cut me like a knife. I was no stranger to being told that my endometriosis “shouldn’t cause so much pain”. Or being told I was “a girl who needed to get over it”. But that night changed everything for me.

Let’s go back a bit. My endometriosis journey started when I was 15. I didn’t know what it was that was causing this debilitating pain but I did know that it wasn’t normal. Luckily for me, I had parents who weren’t happy with the answers we were getting either. I can’t even count the number of ultrasounds and CT scans I had trying to diagnose something that no one could see through either of these methods. I was told that my symptoms didn’t make sense by a handful of gastrointestinal specialists and I was refused a referral to a gynecologist because I wasn’t sexually active and therefore “couldn’t possibly have anything wrong with [my] reproductive organs”.

It took me 10 years to finally get the referral I needed. Unfortunately, this is not at all uncommon when dealing with this disease. When I finally got in to see a gynecologist, she diagnosed me with endometriosis by nothing more than just hearing my symptoms. Five minutes after I entered the office, she was ready to send me out with a prescription for birth control pills that were supposed to save me from the pain. I expressed concern with this treatment because by this point I was well versed on how endometriosis was diagnosed and treated, and I knew that birth control pills didn’t treat the disease. I had a family history of blood clotting and was nervous about this potential course of treatment but I was brushed off as being nothing more than a girl who worried too much. At my insistence, I was given a requisition for blood work that had to be paid by myself. I happily did it and 72 hours later was called back in. It was found that I had a genetic blood clotting disorder and that prescription for hormonal birth control would have potentially killed me by causing a lethal blood clot.

I transferred to another gynecologist and again, here was someone who didn’t understand why I wanted a laparoscopy. At this point in my life, I was starting to believe that I perhaps was losing my mind. I needed to know for sure and so I demanded the surgery. On May 31, 2010, I had surgery and was confirmed to have endometriosis on my reproductive organs and bowels. I was relieved. At this point, I thought this was my ticket to real treatment and more answers but instead, I’m really no better off than I have been over the entire course of this disease. I still have severe pain way too often.

I was out one night at a movie with my husband. Afterwards, we were driving home and I was crying. My husband knows that this is a bad sign. I told him I couldn’t make it to our house and he needed to go to my parent’s house immediately (they lived nearby). I began vomiting from the pain. I collapsed on the bathroom floor and couldn’t move. My parents called an ambulance and I was rushed into the ER. Three paramedics were convinced there was something very wrong with me. After two doses of morphine and Gravol, I was still writhing in pain. I felt that as soon as I mentioned the fact that I had endometriosis, I was somewhat written off. This is when the doctor came in to accuse me of being a drug addict looking for a fix. I yelled. I screamed. I demanded treatment and I will never regret the things that I did to stand up for myself. The nurse taking care of me slid me a card for the patient advocate who I contacted the next day. Unfortunately, after a lengthy investigation, I was told by the hospital that the doctor was within his rights and was “trying to educate [me] on the pitfalls of drug abuse”.

It was after this night that I was determined to raise my voice. We need more awareness about this disease. We need doctors to become specialists in this area. We need better treatment. I started a local support group as a result because I don’t believe that anyone should experience something like this without having someone to turn to who truly understands. It has brought me great friends and amazing support – something anyone fighting this disease needs. My advice is simple: never stop fighting for yourself or fighting for awareness. This disease affects too many women for us to remain silent. I hope that my small piece in this world can make a difference for someone else.

If you have endometriosis or any other complex condition and would like to share your story on Hormones Matter, write for us.

Share

My Battle with Endometriosis: Hysterectomy at 23

6845 views

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.

Share

Heal with Friends Podcast #2: Non-Invasive Treatments for Endometriosis

2285 views

Endometriosis affects millions of women worldwide, inducing unimaginable pain and suffering. On average, it takes 7-9 years to diagnose. Once diagnosed, the treatment options for this disease are limited, not always effective and sometimes downright dangerous. There are few endometriosis specialists, less than a hundred worldwide, and very little research funding; leaving women and their families to manage this disease on their own.

In our first Heal with Friends podcast on Fearless Parent Radio, I interviewed our very own Dr. Philippa Bridge-Cook, researcher, writer, endometriosis survivor and fierce endometriosis advocate. Dr. Bridge-Cook walked us through the ins and outs of recognizing and diagnosing endometriosis, the latest research, and treatment options.

For this second podcast, we have brought in two remarkably talented women who are using non-invasive treatment protocols to help patients manage the pain and other symptoms of endometriosis, and perhaps even to reduce the disease progression of endometriosis and other inflammatory disease processes. Erin Luyendyk and Dr. Leslie Wakefield. Dr. Bridge-Cook rejoins the conversation as a patient, having utilized the protocols and services of both our guests with success.

Heal with Friends Podcast Guests

Erin Luyendyk, RHN is a Registered Holistic Nutritionist, Nutrition Educator, Raw Chef and founder of Nutritionista, and contributor to Hormones Matter. As an endometriosis survivor herself, Erin has developed a passion and expertise in nutrition for women, using integrative nutrition to help manage endometriosis, polycystic ovarian syndrome and premenstrual syndrome. She consults with private nutrition clients and health professionals internationally.  In her latest post for Hormones Matter, Erin writes:

Endometriosis lesions are like little inflammation factories, pumping out inflammatory cytokines like tumor necrosis factor and interleukins that can cause debilitating pain and scar tissue. The foods we eat contain the building blocks with the potential to fuel both inflammatory and anti-inflammatory states. The everyday food choices we make can help shift the balance to calm down the metaphorical fire, whereas eating the wrong foods will tip the scale against us and throw gas onto the flames. Why would we choose to keep eating foods that just make us feel sick, miserable and make an already bad situation even worse?

Dr. Leslie Wakefield MS, PT, CSCS, is a doctor of physical therapy specializing in Women’s Health and Pelvic Rehabilitation. She is the owner of Wellsprings Health, a holistic therapy clinic in Hollywood, Florida, and Director of the Miami Clear Passage clinic. Dr. Wakefield also writes for Hormones Matter. In describing her patients and practice, Dr. Wakefield writes:

As a women’s health physical therapist specializing in pain and scar tissue, I frequently see patients in clinic with intense, often debilitating pain caused by endometriosis. These women have often tried every treatment made available to them:  surgery to cut adhesions and remove endometrial growths, hormone treatments, and symptom control (usually in the form of strong pain killers, anti-nausea, anti-depressant, and anti-anxiety medications). Despite these interventions, some patients report continued or even worsening pain. In the worst cases, their quality of life has been disrupted to the point of suicidal thoughts.

How does it get so bad? It has to do with the chronic inflammation that endometriosis causes wherever it resides in the body.

In chronic inflammation such as endometriosis, this scarring process continues, continuously building scars, or adhesions, that are not needed by the body. As these adhesions form they can limit normal mobility of organs and connective tissue, put pressure on pain sensitive structures, and disrupt the function of the tissues they restrict. 

The manual therapy employed by Dr. Wakefield and other specialists like her can reduce the adhesions, increase mobility, decrease inflammation and the pain associated with it.

Heal with Friends Podcast Topic

The question we ask in this podcast: “Are there non-invasive treatment possibilities that can help endometriosis patients manage their pain and other symptoms?”  Listen in and find out what we learned.

Non-Invasive Treatments For Endometriosis – Episode 56

About Heal with Friends

The Heal with Friends podcast, along with our companion social health site of the same name, Heal with Friends, are about finding health together. It does not matter if you are physician, researcher, parent, or patient, we want to hear from you and learn from your health experiences. When you join the Heal with Friends network, you can share your stories, your ideas, your hard learned and lived wisdom about health and illness. Together we can find solutions to complex health issues.

About Fearless Parent

The Fearless Parent network, is an “innovative online media platform that’s ahead of the pulse for today’s thinking parent.” Like us, they believe in bucking conventional wisdom, in asking the hard questions. Fearless Parent Radio is the ”thinking person’s daily dose of unconventional, evidence-based news about health, wellness, green living, and holistic parenting choices.”

Tune in, join the conversation, and follow us for monthly shows on topics that matter to you.

 

 

Share

Endometriosis: A Wish Noted

2276 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.

 

Share