Let’s End the Silence About Endometriosis

By Dr. Kristina Brown, Adler University

Endometriosis causes physical, sexual and emotional pain. About 190 million people around the globe have endometriosis, including one in 10 American women, but there has historically been a deafening silence about the disease and the pervasive impact it can have on a person’s life.

While endometriosis is a chronic gynecological illness that can affect anyone with a uterus – women, transgender men and nonbinary individuals – it often goes undiagnosed because its symptoms can be attributed to other physical or psychological concerns. Patients presenting with this pain are often told it is “all in your head.”

However, endometriosis is becoming a more visible illness, thanks in part to celebrities such as Lena Dunham, Chrissy Teigen, Amy Schumer, Whoopi Goldberg and others who have begun sharing their stories publicly.

After going undiagnosed for 23 years, Padma Lakshmi, a popular cookbook author, actress and host of the TV show “Top Chef,” founded EndoFund, previously Endometriosis Foundation of America, in 2009 so that others do not have to go through what she did.

I am a couple and family therapy professor, clinician and researcher. My own endometriosis diagnosis at the age of 19 has inspired my work exploring how this illness affects others beyond the physical symptoms.

To better understand the impact of endometriosis on relationships, I interviewed 10 couples about their experiences of diagnosis, treatment and living with this disease. Through their stories of how endometriosis-related pain can affect every aspect of daily life, including their intimate relationships, I provide some specific recommendations. The quotes I have included in this article are from my doctoral dissertation research.

Basics of Endometriosis

When a person has endometriosis, the endometrial cells that line their uterus “implant” in places outside the uterus, such as the ovaries, fallopian tubes and the lining of the abdomen — called the peritoneum. At the end of each menstrual cycle, the uterus sheds its lining, which exits the body via the cervix and vagina. The “misplanted” endometrial cells also shed, but they have no place to go – resulting in internal bleeding, inflammation and pain.

An endometriosis diagnosis is described in stages related to the visual presence of the disease, from minimal, or Stage 1, to severe, or Stage 4. However, there is no connection between the stage and the experience of pain.

One symptom of endometriosis is intense pain during the menstrual cycle. Another is pain with sex. Because pain with menses or sex can be attributed to “normal” pain, a history of sexual abuse or psychiatric reasons such as a dislike of sex, some people with endometriosis wait an average of seven years for diagnosis, which can be visually confirmed only through a procedure called laparoscopy.

In addition to these and other types of severe pain, endometriosis can also cause infertility, and patients who want to have children must often undergo medical or surgical interventions to conceive.

Impact on School, Work and Sex

Physical pain from endometriosis can be debilitating. Adolescents with endometriosis may struggle to keep up with their classes, friends, homework or extracurricular activities when the pain becomes too severe. They may shift to home-schooling or virtual learning to complete their studies.

The pain can also deeply affect a career trajectory. “I almost lost my job because of time off,” one interviewee told me. “In fact, when I had to get my hysterectomy, I walked in to tell my manager and he goes, ‘Well, I hope you’re not going to tell me that you have to have a hysterectomy and have to be out for six weeks!’ And I just broke down in tears.”

All of my participants shared experiences where doctors dismissed complaints of sexual pain – called dyspareunia – from endometriosis. This can delay diagnosis and treatment.

Sex and intimacy often become nonexistent, while some couples shared that they have come to accept that pain is part of sex. One woman shared with me: “I don’t want to be touched or have my naked body seen because I feel bloated and ugly and I’m in horrible pain!”

Partners can also be affected emotionally. “I just feel horrible,” one told me. “There are times when we are having sex that I actually feel guilty that I know that I am hurting her and I know she is going to be in pain and it makes me unhappy.”

These experiences of pain, of not being believed by doctors and professionals, of negative effects on education and career and of intimacy destroyed create a heavy emotional burden on individuals and relationships.

Breaking the Silence

When I was diagnosed with endometriosis, it changed the course of my life. My partner and I learned to expand our definition of intimacy and to redistribute household responsibilities when I was incapacitated. As the risk of infertility only increases without intervention, we started conversations about having children earlier than anticipated. My diagnosis also led me to focus my professional identity as a medical family therapist to help others deal with endometriosis and chronic illnesses.

Based on this experience, here are some ways to break this silence:

• Learn about endometriosis. It directly helps when one’s support systems are educated.

• Separate the person from the disease. When the pain you are experiencing from endometriosis is debilitating, help those around you who are also affected to understand that it is because of your endometriosis and it is not personal.

• Speak from your own experience, saying, “I …” rather than “You …” When we do this, it decreases the other person’s defenses and opens up the communication, making space for connection.

My research participants shared their own recommendations with me, especially the importance of believing that their pain is real; accept that what they are sharing is their very real experience, and let them know that they are believed.

Bestselling author and social work researcher Brené Brown has said, “Empathy fuels connection, sympathy drives disconnection.” Approaching someone with endometriosis from a position of empathy sends a message that you want to work with them collaboratively.

By practicing these important relationship skills, we can break the silence around endometriosis.

Kristina S. Brown, PhD, is a Marriage and Family Therapist, and Professor and Chair of Couple and Family Therapy at Adler University in Chicago. Dr. Brown is the Editor-in-Chief of the Journal of Feminist Family Therapy and also serves as the Director of Mental Health for Floating Doctors.

This article originally appeared in The Conversation and is republished with permission.

Endometriosis: My Long Road to Diagnosis and Treatment

By Victoria Reed, PNN Columnist 

My first experience with chronic pain occurred early in life. As a teen, I often had unexplained bouts of pelvic pain and very severe menstrual pain, which left me vomiting and incapable of functioning for at least a full day every month.  

Although Advil (ibuprofen) is a common treatment for menstrual pain, I didn’t discover its use for menstrual cramps until I was over the age of 20. Before then, I tried other over-the-counter pain relievers, but they were all ineffective at controlling the pain.  

In between the painful periods, a dull pelvic ache settled in. It was always there, and after a while it just seemed like a normal part of life for me. But one day I came to the realization that it wasn’t normal to have near constant pelvic pain and decided to seek the help of a doctor.  

I first consulted with a doctor who was in my HMO medical plan. He decided to perform a diagnostic laparoscopy. That’s a surgical procedure in which a scope is used to view the abdominal and pelvic organs. I was told that nothing abnormal was seen.  

Not convinced that everything was normal, I sought the help of another doctor about a year later. The new doctor performed another laparoscopy and found evidence of endometriosis. However, he ended the procedure without doing anything to fix it. At the time, I didn’t really know what endometriosis was and the doctor said that the treatment for it was outside of his skill set. I knew I had to keep looking for a doctor that could actually help. 

After some time passed, I saw a third doctor who did weekly ultrasound “treatments” on my pelvis. I’m not exactly sure how that was supposed to work for pain relief, because it didn’t improve anything. I thought it was a little strange, but was willing to try anything. That doctor would later be convicted of gross sexual imposition for his inappropriate conduct with female patients.  

By the time I was in my mid 20’s, I once again decided to seek help for the unrelenting menstrual and pelvic pain. The fourth (and final) doctor I chose was a reproductive endocrinologist and OB/GYN. Little did I know, I hit the jackpot with this one! Not only was he kind and compassionate, but he was skilled at restoring fertility. At the time, I was convinced that I was going to be unable to have babies, as I had read that endometriosis could cause infertility.  

After our initial consult, the doctor came up with a plan to give the pelvic organs a “rest” by inducing a menopause-like condition with a hormone treatment called Lupron. Lupron has been used to treat endometriosis since 1990 and was found to reduce pain in the pelvis and abdomen. It works by suppressing the amount of estrogen in the body and essentially stops the menstrual periods.  

I had two Lupron injections over a period of six months and felt great! However, I wasn’t allowed to stay on the medication indefinitely due to potentially damaging side effects.  

Unfortunately, after some time off the medication, my symptoms gradually returned. In another year or two, I went ahead with another 6-month course of Lupron. Again, during the time I was on it, I felt no pain. It is believed that the endometrial lesions respond directly to circulating estrogen, so pain intensity can fluctuate with the changes throughout the menstrual cycle. The lesions can land anywhere inside the body, including the colon, bladder, lungs or other internal organs and can cause pain that’s not confined to just the pelvic area.  

After my second course of Lupron, I was told that if the symptoms returned, I could consider yet another laparoscopy. As expected, the pain returned again and I consented to a third surgery. However, this laparoscopy would be different. My doctor performed a lysis of adhesions -- a procedure that destroys the misplaced endometrial tissue that cause pain.

He was also able to free up pelvic adhesions and use a procedure to unblock a fallopian tube, thereby restoring my fertility. This surgery was life-changing. Finally!  

The chronic pelvic pain improved, and I went on to have four pregnancies and three successful births. Unfortunately, the menstrual periods continued to be quite painful.  

It’s been a long road, but I was lucky and feel very grateful to find a doctor who was willing and capable of doing what was necessary to help relieve my pain. I recommend that anyone with a diagnosis of endometriosis seek out a reproductive endocrinologist for the best possible treatment. I also advise anyone with this diagnosis to never give up. There is help and hope!

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Living With Chronic Pain and Finding Happiness During a Pandemic

By Victoria Reed, Guest Columnist

These are trying times. For those of us struggling with chronic pain, we know what it means to be tough. We battle our own bodies, doctors and even unsympathetic family members every day. We know what it’s like to struggle and make sacrifices -- because that’s what we have to do to survive.

With the arrival of Covid-19, it has added another layer to our already complex lives. But how do we learn to live with this virus and find happiness in the face of overwhelming adversity? I don’t have all the answers, but I do know what’s working for me and what brings me joy. 

I have lived with chronic pain for all of my adult life. My first problem began during my teens, when I developed persistent, unexplained pelvic pain. After many doctor visits and three exploratory surgeries, a sympathetic and kind OB/GYN reproductive endocrinologist finally gave me the answer: endometriosis.

Receiving treatment for endometriosis, which included hormone therapy and surgery to remove adhesions, didn’t take all of the pain away, but it did restore my fertility and allow me to eventually have babies.

Then, during my mid 20’s, my back suddenly went out. I had had no falls, accidents or injuries that I could recall. That would set the stage for another type of pain to take over my life, which there really was no cure for. I got a diagnosis of degenerative disc disease at age 27.

I managed the pain with physical therapy to tighten my core muscles, regular use of ice and heat, rest and pain medication. I also had a caudal nerve block. But by age 32, I began having new symptoms of joint swelling in random joints. Back to the doctor I went!

During that visit with a rheumatologist, I had requested to be tested for rheumatoid arthritis (RA) because my twin sister had recently received that diagnosis. Sure enough, blood tests confirmed that I did indeed have antibodies specific to RA. For those of you who have RA, you know that it is.a.beast.

VICTORIA REED

Over time, beating back RA became like a full-time job; take this medication, take that medication, inject this, apply that. Eventually, after trials of several expensive biologic medications and DMARD’s (disease-modifying antirheumatic drugs), we found one that worked. I get it by IV infusion about once a month at the Cleveland Clinic.

Biologics suppress the immune system to help bring down the inflammation that damages the joints, heart and lungs. RA also causes chronic, debilitating fatigue. It’s like you haven’t slept in a month and got run over by a truck, not like the tiredness you feel when you only had a few hours of sleep the night before.

Then a year or two later, during a routine visit with my rheumatologist, she listened to me as I described being sore all over. After a thorough exam, I received the diagnosis of fibromyalgia, another chronic and painful condition.

Here we go again! When will it stop? Some people might just want to give up, but I had three kids to raise, and it was important for me to fight for my health for them. My 18-year marriage had become a casualty and giving up was not an option!

With the diagnosis of fibromyalgia, I had to adapt to the reality that I was never going to be free of pain and fatigue. They had become my constant companions. I managed, and my kids grew up watching my struggle. They are now 16, 19 and 21 and are happy, well-adjusted individuals, but they’ve had to watch me deal with pain their entire lives. 

Since it was obvious that my body hated me, why would it stop assaulting and insulting me? Guess what? It did not. I have since been diagnosed with FOUR more autoimmune and related disorders: Hashimoto’s thyroiditis (thyroid attack), Sjogren’s syndrome (mucous membrane attack), Raynaud’s phenomenon (small artery abnormality) and the loveliest of all: LADA (Latent Autoimmune Diabetes of Adulthood), a form of Type 1 diabetes that is primarily treated with insulin.

Fast forward to 2020. Covid-19 arrives? No problem! I’m used to challenges. I’m used to pills, needles, pain and fatigue. Wearing a mask is the least of my worries, as I’ve been fighting to stay alive and healthy for all of my adult life and a few of my teenage years.

These days, I make time to do the things that please me, such as riding my 2-wheel Italian scooter, gardening, camping and traveling. I even learned how to ride a motorcycle at age 50! I do not dwell on my pain.

Living in northeast Ohio limits year-round sunshine, but when it is warm and sunny outside, that’s where you’ll always find me! Peace comes when I am at one with nature. Happiness is a state of mind. We can choose to be miserable or we can choose to be happy, and despite my health challenges, I am grateful and thankful for the blessings that I do have.

So, to all of you pain warriors, hang in there! Look for and hold onto the positive. Surround yourself with positive people. Cut out those friends and family that are negative energy (I did). Make time to do things you enjoy. It’s not easy, but it is possible to find peace and happiness in the face of overwhelming adversity.

Let’s hope that Covid-19 will someday be a thing of the past. But if not, we’ll be alright. 

Victoria Reed lives in Cleveland, Ohio.

PNN invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

12 Holiday Gifts on Life With Chronic Pain

By Pat Anson, PNN Editor

If you live with chronic pain or illness and want to have a friend or family member get a better understanding of what you're going through -- here are 12 books and videos that would make great gifts over the holidays. Or you can always “gift” one to yourself.

Click on the cover to see price and ordering information. PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon. As an Amazon Associate, we earn from qualifying purchases. 

Finding a New Normal: Living Your Best Life with Chronic Illness by Suzan Jackson

For nearly 20 years, Suzan Jackson has lived with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) — a condition she shares with two of her sons. In this book, Jackson shares what she and her family have learned about living well with chronic illness and finding a “new normal” through strong relationships, healthy emotions and finding joy in everyday life. The emphasis is on living life, not just enduring it.

War on Us by Colleen Cowles

Lawyer Colleen Cowles looks at how the war on drugs and myths about addiction have created a dysfunctional drug policy that prosecutes doctors for treating pain and stigmatizes patients for seeking relief. The U.S. has spent over a trillion dollars fighting the war and has little to show for it except some of the highest rates of addiction, overdose and incarceration anywhere in the developed world.

Ketamine Infusions: A Patient’s Guide by Berkley Jones

Berkley Jones looks at the increasing use of ketamine, a non-opioid analgesic, in treating chronic pain, depression, post-traumatic stress disorder and anxiety. This book is a useful guide if you are considering ketamine infusions and want to know how to select a provider, what to expect during infusions and possible side effects. Although primarily used to treat depression, some pain patients say ketamine is effective in treating neuropathy and CRPS.

Bitten: The Secret History of Lyme Disease and Biological Weapons by Kris Newby

Author Kris Newby began looking into the origins of Lyme disease after she was bitten by a tick and became seriously ill. Her research led her to a secret U.S. government program during the Cold War that used insects as biological weapons to spread disease. Newby believes the Lyme outbreak that began 50 years ago and has infected millions of Americans may have been the result of a military experiment gone wrong.

Vagina Problems: Endometriosis, Painful Sex and Other Taboo Topics by Lara Parker

A memoir by Lara Parker that explores — with unflinching honesty — her battle with endometriosis, a chronic vaginal condition that makes daily life difficult and sex painful. As a teenager, doctors initially dismissed Parker’s pain as “bad period cramps” and suggested her pain was psychological. She nearly checked herself into a mental institution before finally getting a proper diagnosis.

A Quick Guide to CBD by Dr. Julie Moltke

CBD won’t cure you of chronic pain, but Dr. Julie Moltke says cannabidiol can reduce pain, inflammation, anxiety and insomnia — and help make life more livable. This handbook is intended for beginners who want to learn how and when to take CBD, and are puzzled by all the hype surrounding vapes, oils, gummies and edibles on the market.

Pain Warriors by Tina Petrova

A documentary produced by patient advocate Tina Petrova that examines the poor treatment and medical neglect faced by millions of pain sufferers in North America. The film is dedicated to Sherri Little, a chronic pain patient who committed suicide after one last attempt to get effective treatment. Available on DVD or for streaming on Amazon Prime.

Together: The Healing Power of Human Connection by Dr. Vivek Murthy

This timely book by former U.S. Surgeon General Dr. Vivek Murthy looks at the importance of human connections and how loneliness affects our health and society at large. To combat loneliness, Murthy recommends spending at least 15 minutes each day connecting with people we care about and to give them our undivided attention.

Bottle of Lies: The Inside Story of the Generic Drug Boom by Katherine Eban

Wonder why that generic drug you take doesn’t seem to work? About 90% of pharmaceutical drugs are generic and most are manufactured overseas. While generics are promoted as cheaper alternatives to brand name drugs, journalist Katherine Eban found the generic drug industry rampant with greed, fraud and falsified manufacturing data — resulting in many patients consuming drugs that are ineffective or have dangerous side effects.

In Pain: A Bioethicist’s Personal Struggle with Opioids by Travis Rieder, PhD

Travis Rieder is a professor of bioethics at Johns Hopkins University who severely injured his foot in a motorcycle accident and became dependent on opioids while recovering from surgery. In this book, he shares his frustration with the healthcare system and how it often abandons patients to pain, addiction or both. Rieder serves on a CDC advisory panel that is helping the agency prepare an update of its controversial 2016 opioid guideline.

The Chronic Pain Management Sourcebook by David Drum

A comprehensive guide about chronic pain by medical journalist David Drum, who summarizes the many causes, types and treatments of pain. Drum also has tips on managing stress, anxiety, lack of sleep and depression. The book is easy to understand and would be a useful resource for family members, friends and caretakers who want to understand and help someone living with chronic pain.

A Little Book of Self Care: Trigger Points by Amanda Oswald

This well-illustrated book provides 40 simple, step-by-step exercises you can use to manage back pain, migraine and other painful conditions. Author Amanda Oswald explains how “trigger points” — small knots of muscles and connective tissue — can be relieved through self-massage and the “power of touch” without visiting a chiropractor or physical therapist.

These and other books and videos about living with chronic pain and illness can be found in PNN’s Suggested Reading section.

Why ‘The Bleeding Edge’ Gave Me a Panic Attack

By Emily Ullrich, Guest Columnist

If you haven't seen it yet, you've likely heard the buzz about The Bleeding Edge on Netflix. This documentary should be seen by every adult in America, not just chronically ill or chronic pain patients.

The Bleeding Edge gives insight and affirmation to those of us who have dealt with the medical system a little too much and demonstrates how important self-advocacy is. If you haven't seen it yet, don't let what I'm about to tell you deter you. I've seen it twice now. The first time I watched it, I had a full-on panic attack because it reminded me of the infuriating ordeal I went through dealing with the American medical system.

I wanted to watch the film again, hoping I would be able to watch it more objectively. I made it through the second time without a panic attack, but I was still yelling at the screen.

The film covers an array of medical device errors and malfunctions. But more importantly, it also delves into the mistakes and oversights that the FDA, CDC, American Medical Association and others have made (and continue to make) at the expense of our health because it's more lucrative to make us sick than it is to ensure our safety.

One of the main topics in The Bleeding Edge is the autoimmune disorders that many women developed after the implantation of the Essure birth control device. I was especially stricken by this story.

My first experience with chronic pain was pelvic pain, due in part to endometriosis. I started having my periods when I was 11 years old, and by age 12 was literally passing out because of the severe pain I had when menstruating. I saw doctor after doctor, and every one of them told me the same three things:

“This is normal.”

“At least part, if not all of this, is psychological.”

“Take ibuprofen and a hot bath, and you'll be fine.”

Of course, they were all wrong.

By age 19, I went to probably my twelfth doctor. She decided, in her infinite and culturally superior attitude, that since I had two sexual partners in my lifetime that I must be promiscuous. And if I continued this reckless behavior, she would not be able treat me and would be forced to tell my parents. When I told her I didn't need to be judged or lectured, she clucked her tongue and shook her head, as though I was a lost cause.

Many years and irresponsible, uncaring and uninformed doctors later, at age 31, I went to a doctor who told me I probably had endometriosis and performed a laparoscopic procedure to confirm this diagnosis. The procedure was also supposed to remove it and I was supposed to feel better. It didn't.

As I aged, it got worse. And as I moved around the country, I had to go through the degrading and exasperating experience of finding a doctor who believed me and believed in endometriosis. Many OB/GYN's and MD's still do not.  Even now, I see doctors on occasion who refer to it as a “garbage pail diagnosis.”

The Mirena IUD

At age 36, I was finally referred to a pelvic pain specialist. He believed in my pain and suffering and wanted to help. I cried because he was so nice.

After a fourth endometrial ablation surgery, he suggested the Mirena IUD as a long-term solution to my problem. He said it would not only prevent pregnancy but would be effective in reducing or eliminating my periods. As I lay back to have the IUD inserted, he assured me that it would not be painful that I would merely feel a “slight pinch.”

I never felt ANYTHING as excruciatingly painful. The doctor mistakenly punctured the fundus of my uterus. So, he casually penetrated me again with the same invasive tools, pulled the IUD out, opened a new one and attempted to place it. My uterus simply spat it back out at him. He said, laughing, “Your body doesn't seem to like this! Wanna try it again?”

I should have listened to my body and said no. But he tried again and finally placed it. For the next nine months. I bled profusely every day and the pain was worse than ever. I called and visited the doctor numerous times throughout these months, and every time he assured me the bleeding would stop and I should be patient.

Finally, I marched into an appointment and demanded he remove it. He did, and although I had pain for the next few days, it finally got a little better.

My point in all of this is that I now have about 15 chronic pain conditions. And with each one, I have a similar horror story. I feel a connection to the women who had the Essure device and who later developed autoimmune illnesses because of it. I will never know if any of my ongoing list of health problems stemmed from the Mirena, but I do know that after my bad experience with it and a few other attempted medical devices, my body doesn't respond well to foreign objects.

We are all different chronic pain snowflakes, if you will, and different treatments work for different people. However, as one goes through the process of repetitive ER visits, hospital admissions and doctor's appointments, we get to know what we can and cannot tolerate pretty well.

The pain patients' mantra of “Be Your Own Best Advocate” could not be hammered home better than it was watching The Bleeding Edge. The film struck a deep chord within me about the irresponsibility of our government, medical companies and doctors, as well as their willingness to suspend disbelief if it is easier and more financially convenient, even if it's at the cost of people's lives.

It is very much like the movement to stop the use of opioids, a proven and mostly safe class of pain medication, while encouraging the use of under-tested drugs with bad side effects that are often prescribed off label to treat conditions they were never intended for. It doesn't matter anymore if the patient has a better life or not. It only matters that the medical system drains our wallets and souls, while selling theirs.

Still, after all of this, we have to fight. We have to because no one else is going to do it for us. We have to do our own research and educate ourselves about medical devices and treatments.

As The Bleeding Edge demonstrates, when you can buy stock in healthcare companies, when government became controlled by corporations, and when doctors get paid for using and recommending their products, we lost the ability to trust them. 

Emily Ullrich lives with Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis,  Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, PTSD, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

MS Is My Full Time Job

By Jennifer Hochgesang, Guest Columnist

I work full time. I mean really 24/7 full time.

A tremendous amount is required of me physically, mentally and ultimately spiritually. I often have to travel on short notice away from my young daughter. These trips always deplete me. And I don’t get very much sleep.

Even though I do this every single day and have for years, I’m constantly being told by pretty much everyone that I don’t really know what I’m talking about and I should listen to them.

I have to deal with big egos on these trips and quite literally they have a hand over me. I have a certain attire that I’m required to wear, and it’s not to make life easier for me, but for them. The only way I get to come home is when I nod my head in agreement and promise to continue working together on our “common” problem.

I often come back home with scars from my travels and even more often “little presents.” My daughter would like to shake them up and down, but I don’t think it’s safe so I put them up high.

The job is so exhausting that I’ve seen my doctor for medications to combat the fatigue, otherwise I wouldn’t get anything done. The extent of this is hard to explain to my friends and neighbors and they begin to make silent judgements.

These judgements grow larger when I cannot go hiking with the kids out in the sun on a 90-degree day. My job won’t let me, I say. They question it at first. But over time they just stop asking and if I see them at a school function, they will just nod my way or sometimes completely ignore me.

JENNIFER HOCHGESANG

There was one time I thought I had made a great new friend. Her daughter was in the same class as my daughter. She was super funny and had her own struggles -- some of which she began to share, so I did as well. She was very artistic, intelligent and seemed to genuinely care.

As time went on we had a couple of play dates, went out to dinner with our girls, and then out of the blue I had to go on an emergency trip. I was so frustrated and sick of them. She told me she would take my daughter to gymnastics and Girl Scouts and not to worry.

Well, it was a long trip and three days after I got home I had to go again. I didn’t share too much about my trips to her. Why would she want to hear all the boring details? But then suddenly, my friend and her daughter weren’t at gymnastics. I texted her. She had switched days. I asked her why, wondering if we could switch as well. She was evasive, and I knew then my work was too much for her.

Part of me wanted to call and scream. If this is too much for you, how do you think I feel?

I want a regular job more than anything. Sometimes it feels like people think I want this job, as if I created it myself. They don’t realize that I had no choice in the matter.  But this is what I have to do and accept that I can’t have friends like other people.

I work seven days a week all day long. As I said, my job is demanding. It requires physical endurance, mental fortitude and spiritual grounding. Just in the last month, it has set new requirements.  Now I can’t drive, and I’m stuck at home in the winter in excruciating pain.

Mentally, my job takes names from me, messes with my ability to form sentences when I speak, and how to store and retrieve memories correctly. Spiritually, my job requires a belief in something -- something to hold onto -- whether it be a God or Goddess, a dog that has passed away, or a tree outside the window.

Without that, the job will beat you up past the point of understanding. You will be left with nothing:  no friends, no family, no wife or husband, no will, and no ability to laugh at life. Ultimately it strips away your humanity and your search for happiness.

If you can ground yourself and see past the pain, the falling and the shaking, and the numbness and confusion, you will not only survive -- you will still be able to strive for meaning in your life.

I work for MS. It’s sometimes better known as multiple sclerosis. Here is my schedule:

Monday: MS
Tuesday: MS
Wednesday: MS
Thursday: MS
Friday: MS
Saturday: MS
Sunday: MS

Do you have anybody in your life that works at MS like me or is in a similar place? If they say they are unemployed, they just mean they aren’t getting paid for their work. If you could trade jobs with them, would you? If so, would you trade with me first? My daughter needs me.

Jennifer Hochgesang lives in Illinois. In addition to multiple sclerosis, Jennifer has endometriosis and trigeminal neuralgia. She is the mother of a beautifully kind and precious 7-year old daughter.

Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.

She wishes to thank Ann Simmons for the inspiration to tell her story.

Learning How to Live with Chronic Pain

By Barby Ingle, Columnist

When I became so debilitated by chronic pain and doctors could not figure out what was going on, I could no longer hold my life together. It was a minor auto accident that triggered crazy symptoms that didn’t make sense to me or my doctors.

When the first symptoms of Reflex Sympathetic Dystrophy (RSD) began, I thought I was being ridiculous. The pain was overwhelming. It took all of my attention and energy just to be able to focus. It felt a burning fire in my face, neck and shoulder, and my skin became discolored. I also started having balance issues and falling.

I remember at a practice I was working with a male cheerleader and we did a stunt. Everyone around us was yelling, “Coach, stand up straight. What are you doing?”

I kept saying I was straight, but then I looked down. I didn’t even know how he was holding me up in the air. I was in the weirdest position; legs bent, leaning forward, arms not in the right place. Until I saw what my body was doing I had no idea what everyone was so upset about. 

I was coaching, heading to counseling appointments, chiropractors and neurologists, and sleeping in my office or wherever I could find a place to sleep. It wasn’t solid sleep. It was for 20 to 45 minutes at a time. I was overwhelmed physically and emotionally, not being able to coach like I wanted, but still trying not to let my team members down.

I wish I could go back and help them understand what I was going through. I wish I had let go of my job sooner so that they could have had a better year. I didn’t know that what I was dealing with was not going to be as easily overcome as endometriosis was. That was a struggle that made me believe everything was just a challenge that I could get past. Not this time. It was going to take years, financial strain, and learning new life skills. I just didn’t know it. 

I was no longer able to handle my dream job of coaching cheer and dance at a Division I-A university. My business started to crumble and eventually closed. My husband stopped supporting me emotionally and physically. I didn’t have the energy to take care of me and him any longer. One good thing that came from it was that after our separation he found God, and was baptized into the Catholic Church the next Easter.

The biggest reason our marriage fell apart was he had me feeling that it was all in my head, and tried to convince my family and our friends of the same. My psychologist and psychiatrist both told me he was wrong. What I had was situational depression and they assured me what I was going through was normal. They had faith in me and helped me get faith back in myself. 

We began marriage counseling before the accident because of our struggling relationship, but that was no longer an issue because the relationship was over. We were divorced within 3 months of filing for separation. Now I needed help getting my new life in order and to continue counseling, until I felt I had the life tools I needed to be the best me I could be.  

I rated the physical pain I had from the accident in the beginning as a level ten. I did not think I could take anything worse. But as each surgery or procedure was performed and the pain only worsened, I wanted sometimes to have that first pain back.

As our bodies get “used to the pain,” it sometimes gets easier to manage and deal with. With each additional trauma and spread of RSD, the pain I thought was unbearable becomes a livable level. But I wasn’t living.

“Reflex” is any process in your body that automatically goes haywire. “Sympathetic” is your sympathetic nervous system, which makes you feel like you are on fire and you can’t put it out. “Dystrophy” is the loss of muscle and bone, which left me in a wheelchair for many years.

As an athlete, it was difficult to understand how working out and pushing myself were making me worse, but it was. Pushing myself too far taught me that it can cause damage. I realized that doing this was creating further damage to my body and pain pathways. I learned that trying smarter is more important than trying harder.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

5 Steps New Chronic Pain Patients Should Take

By Barby Ingle, Columnist

When I first experienced the symptoms of endometriosis, all I could think of was get to the doctor so this will stop. That’s what I did as a kid. I got sick and my mom took me to the doctor and made me better.

I knew something was wrong inside of me because of the blood and abdominal pain. But with endometriosis, you don’t really know for sure until the doctor looks to see what is going on.

I had never heard of endometriosis at the time of my diagnosis. Nearly 20 years later, it is no longer a rare disease with more than 200,000 new cases in the U.S. every year.  Endometriosis occurs when tissue that normally lines the inside of the uterus grows outside of it.  The disease is treatable, but it does require a medical diagnosis to rule out other possible causes of the symptoms.

I went through lab tests and imaging, but they didn’t show much. I had endometriosis cysts that had ruptured for years before the symptoms became an issue for me chronically. None of the providers ever warned me what they could mean.

When they finally did the laparoscopy, the uterus tissue was found on my ovaries, fallopian tubes, abdomen walls, and intestines. Once they did this procedure, the endometriosis got worse instead of better.

I decided to go to a larger city to get care at a major university hospital. I was the youngest patient there to ever receive a full hysterectomy after rounds of hormones and Lupron shots that didn’t work.             

1. Find the Right Doctor

What I learned from my experience with endometriosis was the importance of finding the right doctor. Each course of treatment is going to be different. Don’t always think the treatment you receive is all there is because that is all your doctor offered you.

You can make the choice to get the care you need. Don’t be afraid to do so. It’s your life. 

2. Consider Multiple Treatment Options

Don’t just go for the pain medicines or invasive treatments first. If a treatment you try does not work for you, stop and ask for something else. If your doctor can’t provide it, move on and find one who can. It is important for you to communicate with your providers, family and caretakers to create a treatment plan.

3. Take Responsibility for Your Treatment

We can’t live in our doctors’ offices between appointments. The person who is most responsible for your care is you.

It is up to you to follow the treatment plan and realize that it may take multiple and concurrent treatments to get everything under control.

4. Get Organized and Ask for Help

You may lose people in your life that don’t understand, are not supporting you or causing negativity. That is okay. It can be lonely, but we can only ask for help. The person we are asking is not obligated to help. Find people who can help willingly.

You will need to get organized, so you know what help to ask for. You may also realize the help you require needs to be split up among different people. If one person is all you can rely on, it may cause them to burnout.

Reach out to resources in your community, such as churches, community centers, high school and college volunteer programs, your insurance company resources, etc. Don’t limit yourself when it comes to getting help, and be thankful and willing to receive any help you do get from others.

I have talked about the importance before of keeping a journal to track symptoms, treatments and for your personal well-being. Once you have some data that helps you recognize your pain triggers, you can set expectations and plan accordingly. Then when pain flares pop up, you will be better able to handle them, have less stress, and better daily living.

5. Be Your Own Advocate

Finally, advocate for yourself. You will come to learn your body better than anyone on earth. You will know what you need. If insurance denies an option, appeal it. If a medication is causing you terrible side effects, report it to MedWatch at the FDA. 

Have the nerve to be heard and lose the fear of speaking up. The more you stand up for yourself and share your story, the better you and the chronic pain community will be. 

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network. 

Power of Pain: There is Great Reason for Hope

(Editor’s note: Pain News Network is pleased to welcome Barby Ingle as our newest columnist. Some of you may already know Barby from her work with the Power of Pain Foundation, but you may not know the story behind her activism on behalf of pain sufferers. You can read all about it here.)

By Barby Ingle, Columnist

The good news is I have taken control of my chronic pain diseases. It has been a long tough road -- 18 years of living in the healthcare system have taught me to stand up for myself and learn to be my own best advocate.

It all began when I developed endometriosis in 1997 and worsened when I developed Reflex Sympathetic Dystrophy (RSD) after a minor car accident in 2002. I thought endometriosis was bad until I got it RSD.

Prior to the accident, I was a business owner and head coach at Washington State University for the cheer and dance program. I was living a great life and was successful in managing the endometriosis through medication and surgery. After the accident I had shoulder pain. Even though there were no signs of an injury on x-rays or MRI images, doctors suggested I have shoulder surgery. This surgery did not fix the pain and only made things worse.

Doctors were stumped and sent me a TOS specialist. After more tests the doctor realized I needed surgery again because bone spurs from the first TOS surgery were going into my lung and nerve bundles in my right shoulder.

BARBY INGLE

In 2005, I was finally diagnosed with RSD and learned that TOS was a symptom of RSD. By the time of that diagnosis, I had been treated by 42 other healthcare providers and been told many random strange things, from “It’s all in your head” to “Your boobs are too big. You should get a breast reduction.”

My RSD symptoms were called “bizarre” by one prominent neurovascular surgeon. Some of those symptoms included severe pain, sweating, skin discoloration, sensitivity to touch and light breezes, dizziness, vomiting, syncope, and gastrointestinal issues.

Every procedure was a new trauma that increased my pain and other symptoms.

Learning about RSD

The 43rd provider finally looked at my records in their entirety before coming into the exam room. He was the one to figure out I had RSD and give me some of my first answers. I remember being so excited because I finally had a name for what I was dealing with.                                                     

But once I started to research RSD on the internet, that excitement turned to fear. I took the time to find out who the best providers were and found ways to get to see them. I have now been treated by over 100 providers since 1997.

Having experienced painful injuries many times in my life, I thought all pain was the same. Now, I know there is a difference. I learned that you can have more than one type of pain at the same time (burning, stabbing, cutting, electric, etc.). I feel bad for the people I knew with chronic pain before my experience began. I thought they were constant complainers. I was wrong.

I was humbled as I needed help with ordinary activities of daily living, like dressing, bathing, traveling, cooking, shopping, and walking. What I was going through was traumatic and depressing. The burning pain was never ending.

Living with pain is a big life challenge. It has been hard. Through this challenge I have learned we all have a right to proper care and treatment to ease our pain. Don't stop until you get the help you need.

Remission

As of 2009, I have been in and out of remission. What I found that worked best for me is the use of an oral orthotic (a mouth device that lowers brain stem inflammation), IV infusion therapy, aqua therapy, heat, traction, better posture, improved eating habits, and stretching exercises. There was not a one size fits all cure for me or any of the thousands of patients I have met in my pain journey.

I have come in and out of remission since then. In the beginning I would be so afraid that this time the doctor would not be able to help me. Now I know that if one doctor can’t help there are others that can. Not all providers offer the same knowledge or access to treatments that may be right for me. I have to research for myself to find out what I am comfortable going through.

We all have to learn to be the chief of staff of our medical team. Be empowered patients and live life to the fullest each moment. Don’t feel guilt if you can’t do something right now -- make it a goal to accomplish once you are able.

When you think it can’t get any worse, it can. And when you think is can never get better, it can. Take life moment by moment and know that we all have ups and downs. Never give up and never give in!

My drive to turn pain into power comes from my motivation to find a cure for RSD. No one should have to go through my experience. 

Barby Ingle is a chronic pain educator, patient advocate, and president of the Power of Pain Foundation.

Barby is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found by clicking here and at the Power of Pain Foundation.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.