endometriosis pain

The Reality of Endometriosis in the ER

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I’m lying on an emergency room bed, writhing in agony, screaming in pain, as though my insides are being torn to shreds. I curl up my body, protecting myself from the evil inner force that resides within me, stabbing me, shocking my organs. My mind is frantic, confused, and manic. Lights and sounds mix together around me and I close my eyes to minimize the sensory overload. The white sheets under me feel scratchy and irksome, I can’t deal with any added discomfort. Searing pain bubbles within me, threatening to boil over, and when it does, I let out a scream from the very depths of my soul.

I hear a voice and attempt agonizingly to open my eyes. A woman in a white coat stands in front of me, arms crossed in a stance that conveys a mixture of disdain and apathy.

“Rachel,” she demands, her voice both indifferent and annoyed, “want to tell me why you’re here?”

Is she joking? I wonder to myself while trying to gather my coherent thoughts, does she not see I’m in excruciating pain?

“Pain…” I manage to say, the word more a miserable moan than an answer. “I need meds…”

“I’ll decide what you need,” she replies nastily. “You’ve been here way too many times, asking for medicine each time. You don’t need meds, Rachel, you need to go to rehab. You’re an addict.”

I can’t control my tears any longer and I let them flow freely as I sob uncontrollably. Didn’t she see my chart? Doesn’t she see that I have endometriosis? Does she know how painful it is?

“I have endometriosis,” I muster, “I take normal pain meds every day but they are not working today. The pain is worse than usual!”

And then my senses can’t take the pain any longer, and I scream out desperately once more. All thoughts abscond from my brain, all I can think of is dying to get rid of the pain.  The doctor looks at me like I am a dirty piece of clothing on the floor. She purses her lips and then spits out, “I suppose I can give you some Motrin or Tylenol.”

I am so desperate at this point I agree to her pointless suggestion. My head knows the meds will not help, but my body is starving for relief. Needless to say, thirty minutes later the Motrin has left me right where I was before I took it: in paralyzing pain.

A nurse comes into my cubicle a throws a glance at my miserable form. “You’re being discharged!” she sings, as though she is freeing me from jail. Her smile is grotesquely wide as she hands me a pen to sign my name on the discharge papers. I want to explode at her, to hurl words in her face that describe my agony, and wipe that inane grin right off her face. But I don’t. Instead, I meekly take the pen, wait for a moment in which my body is able to stop shaking, and then sign the papers.

“Wheelchair will be here in a minute!” she croons, then leaves me alone with my emotions.

I fold my beaten-up body into the wheelchair feeling completely empty and numb despite the pain. I am so shocked at the experience I just had. I left my heart, soul, and voice in that emergency room, trying my hardest to explain the agony I was in.  I laid in front of a doctor trembling with pain, and she in turn called me an addict and sent me away. She didn’t bother to understand what I was going through and didn’t test me to see what drugs I had in my body. Instead, she took my trust, ruthlessly pummeled it, and carelessly threw it away. I leave feeling nothing more than a desire to give up and let it all go. Tonight, I have become one more casualty in the fight for us with endometriosis to be heard.

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This article was posted originally in February 2014. 

Endometriosis Awareness: Speak Out

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I didn’t know that there was a name for it. Like so many others I thought that what I went through was so uniquely me. Like the kid who hides a birthmark or scar, why would I put my unique condition on display? The doctors didn’t have a name for it; they made me believe that I was weak and that my pain was not serious. I didn’t know that I had relatives living with it, and I certainly didn’t know that 10% of all women suffered from it.

After eight years I was no longer able to hide what was happening to me. My pain and fatigue left me with one “normal” week out of four. My thoughts of a post-graduate program in advertising were replaced by the anticipation of a precious hour of pain relief to do the simplest tasks, after lying quietly on my right side for the required thirty minutes. It was not until then that someone mentioned endometriosis.

Common symptoms of endometriosis such as increasingly painful menstrual cycles, chronic pelvic pain, cycles of constipation and diarrhea, nausea and vomiting, painful bowel movements, back and leg pain during menstruation and constant fatigue, were all complaints that I had mentioned to a doctor at one time or another. How was it possible that physician after physician had turned me away without answers? More importantly, how did a strong woman like me let eight years go by without standing up for myself?

For a disease that affects so many, cripples entire families, and prevents some from starting their own families, our society is surprisingly quiet about endometriosis. Many physicians still believe that endometriosis only affects the reproductive organs and that those symptoms can be swept away with pregnancy.

If I had known then what I know now, I would not have accepted being called weak. If I had known that there was a disease called endometriosis that could cause most, if not all of my symptoms, I would have kept looking for a doctor who believed me. If I had known that there was an entire vocabulary enabling me to get through to my doctor, I would have asked more questions. If I had known that the diagnosis of a disease with no cure would bring me validation and relief, I would have given all of the gritty details of what I was going through to every single person that I came into contact with.

Those of us who have traveled the long, dusty road to diagnosis that says “proceed at your own risk”, are responsible for making that road as smooth as possible for those who come after us. There are a handful of pioneers who have tirelessly shouted “en-do-met-ri-o-sis” from the rooftops so that so many of us could find our way to specialists and accurate information on our disease. As long as we neither know what causes nor cures endometriosis, this work will never be done. In the meantime, it is our responsibility to teach our children that endometriosis exists, and to tell our friends that our disease affects more of our lives than we sometimes let on. It is also crucial to build an understanding of endometriosis in the workplace, by holding an open dialogue about how endo affects us on the job, while discussing mutually beneficial strategies for moving forward with employers.

Who hides a birthmark these days? It is what makes us unique. Who hides a scar anymore? It tells the story of where you have been and what you have done. Why hide the havoc that your endometriosis causes in your life? It shows what a strong person you are, and could lead someone else to a diagnosis.

I have been called a strong woman many times in my life; rarely have I believed it. Once as a child I stood up for myself, and then to my dismay, burst into tears. I felt so much shame because of showing what I perceived to be weakness. My grandfather followed me to where I was sitting and said “hmmph, little bulldozer, you can get through anything”. It was then that I understood: strength is not the absence of weakness, but instead the courage to show vulnerability and speak the truth.

March is Endometriosis Awareness Month. I ask you to open up and tell one person about your endo in detail. Your bravery could save someone many years on the bumpy road to diagnosis, and a lifetime of looking back wondering “what if”.

Address to the Million Woman March for Endometriosis

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When I was diagnosed with endometriosis in 1969, I had spent 17 years in pain, and had been hospitalized many times, all without a diagnosis. I was subjected to multiple scoldings from medical personnel who claimed that pelvic exams shouldn’t hurt, even as I tried to leave the exam table with the ratcheted speculum still in place. They also dismissed me psychologically by saying “it’s just her period”. Today, 44 years later, instead of prompt diagnosis and prompt treatment, it takes an average of 9 years for women to receive an accurate diagnosis. That’s 9 years of negligence, of severe pelvic pain and psychological dismissal. We have not come very far at all.

Making things worse, some in the medical community are advocating that “minimal” disease does not need any treatment. After all, it’s only minimal disease, right? Well any endometriosis lesion, no matter the size, can cause significant inflammation of the lining of the pelvis (the peritoneum). Try living with a couple of grains of sand in your eye for a lifetime. It causes the same kind of inflammatory response. This approach to endometriosis care is outrageous; the attitude of “there is not enough money to treat all 180,000,000 women worldwide” for their endometriosis verges on misogynistic. Let me tell you, if 180 million men worldwide reported unbearable pain during sex, bowel movements and exercise, and they were offered feminizing hormones, surgical castration or pregnancy as treatment options, it would cause an international emergency and countries would transfer their combined defense budgets in order to find a cure.

The peritoneum is the thin, Saran wrap-like lining of the pelvic cavity and the organs. Its role is primarily protective. If there is blunt abdominal trauma, infection, appendicitis, or leaking organs it reacts swiftly and predictably: the patient experiences bloating, intense abdominal pain, nausea, paleness, restlessness, anxiety (recognize those symptoms do you?). Every medical and nursing student on the planet has been taught to recognize these symptoms and respond quickly. A differential diagnosis must be made promptly and the peritoneal-quality pain treated with pain medication. In women with endometriosis the medical community somehow dismisses the intensity of her pain with the assessment: “oh, it’s just her period”. It is outrageous that patients presenting with peritoneal-quality pain are ignored in both the emergency room, and in private practice, and the patients’ pain is not treated.

If caregivers do not have the skill or interest in excising endometriosis, they should at least treat the pain. Endometriosis pain is as intense as appendicitis; I know because I have had both. Or better yet, caregivers could refer the patient to someone who can remove disease effectively. On the endometriosis boards on Facebook, etc. (where thousands of desperate women with endometriosis gather) we have identified less than 100 gynecological surgeons out of 52,000 in the USA who treat disease effectively. And yet most gynecologists believe they can treat this disease effectively. Treating effectively means permanent relief of pain in one or two surgeries. Drugs do not treat endometriosis; they alter a woman’s normal hormonal.

Once, when giving a lecture on “Modern Concepts in Endometriosis” I was confronted during the intermission by two surgeons. These surgeons said surgery was not necessary to treat endometriosis. They claimed they were “curing” their patients with triple dose danazol and then they stormed from the room.  After intermission, when I resumed my lecture, the crowd wanted to know what the surgeons had said. I said that the surgeons claimed they were “curing” endometriosis with danazol. I wondered aloud why the surgeons would think that. The nearly 100 women in the room shouted almost in unison, “Because we don’t go back”. So if caregivers are thinking they are helping their patients with medical therapy, perhaps they are not listening closely enough, or their patients are not coming back.

In the 1980s when I was managing the Endometriosis Treatment Program at St. Charles Medical Center in Bend Oregon, we saw patients from around the world. All of these patients had multiple treatment failures, both surgical and medical. Seventy-five percent of the patients had been dismissed as “neurotic”. All of these patients had active, painful endometriosis which was determined by independent, board certified, pathologists. Today, I still hear from woman after woman who has been told to seek psychological help because she doesn’t have any disease.  And yet when we get her into the hands of a doctor who performs advanced excision surgery, she has confirmed, active endometriosis and she experiences dramatic, long-lasting relief.

Women with endometriosis live lives of quiet desperation. They have learned to be quiet because most doctors do not believe the quality and severity of their pain. Their support systems often abandon them because doctors find nothing wrong. Yet these women present with peritoneal signs and symptoms. Will the medical community continue to turn a blind eye to these women? Or can the medical community find the necessary compassion for their plight? If the medical community cannot surgically resolve their disease, could they at least consider referring these women to someone who can? Or can we refer these patients to a pain management program? Multiple peer-reviewed studies prove that patients taking narcotic pain medication do not become addicted to their pain medication. They may become dependent, but at least they will be able to get up off the couch, put the heating pad away and resume living their lives. Endometriosis is not a terminal disease, but despair can be terminal, and women with endometriosis experiencing despair have paid the ultimate price. I know of many women with endometriosis who felt there was no other way out; and even one is simply too many.

It is unacceptable to continue to expect women to cope with peritoneal-quality disease on their own, without help, and without relief. We need surgeons who are trained to surgically deal with lower stage disease wherever it is located. We need referral centers for women with complex, deeply-infiltrating disease. Hysterectomies do not cure endometriosis. There are thousands of us that were fooled into believing that a hysterectomy is a cure. The medical community cannot continue to ignore our plight. The medical community is either part of the problem, or part of the solution. There is a significant body of data that shows that excision of endometriosis lesions restores lives. How long will the medical continue to ignore that?

One of my heroes is Sister Kenny, an Australian Nurse who developed physical therapy for the acute effects of polio. Her therapy and hot woolen packs prevented joint fusion and relieved pain. She was soundly trounced worldwide by orthopedic experts caring for polio patients for years. Gradually, there was recognition that she was right. When asked why she thought it took so long for others to see that suffering could be ended with simple changes in care, she responded: “When we speak with the voice of authority, we come to believe we are the authority”. When I read that, I thought, yes, despite evidence to the contrary. Well, there is evidence, plenty of it that skilled excision restores lives.

Finally, Margaret Mead is a hero of mine. She was a cultural anthropologist from the 20th century. She said: “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” Be that small group (180 million worldwide) that changes the world for women with endometriosis. Work with gynecologists everywhere to raise awareness of just how much this disease impacts lives. Let them know just how inadequate many approaches are. Let them know that surgical management of endometriosis is truly effective. This approach gives women back their lives, their sexuality, their education track, their fertility, their love of life. It gets women up off the couch, and allows them to turn off their heating pads. It is time to stop ignoring the destructive impact this disease has on women’s lives, the lives of their families, spouses, significant others. Actually, it’s way past time.

Nancy Petersen R.N. (Retired) — Co-founder of the Endometriosis Treatment Program at St Charles Medical Center in Bend, Oregon

I Wanted to Die Last Night: Endometriosis and Suicide

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I wanted to die last night. There, I said it. Ugly thing to say, right? Might even make you want to inch just slightly away from me. Feel free to. Sometimes I want to inch away from myself as well. But before you judge, try to listen to what I have to say. Assess my words with an open, empathetic heart, and think about the way you would feel if you were in my shoes. It may sound as though I am trying to pull at your heartstrings, to make you feel depressed for me and my life, but I am not.  I just want you to understand what it’s like to be a woman who suffers from endometriosis. I just want you to understand. These are the realities of living with endometriosis.

Dealing With the Physical Reality of Endometriosis

Pain. Imagine your abdomen and pelvis are encased in barbed wire so that the spikes of the wire are actually piercing them, stabbing them sharply every time you move. Now imagine that the barbed wire is actually attached to some sort of electrical current that shoots electricity through the spikes, increasing the intensity of each penetration. Next, add a machine that alternates shooting the electrical spikes into the body and pulling them out again in random intervals, thus adding a surprise and shock factor to the pain. Lastly, in addition to the shocking electrical stabbing pain, there are deep, underlying waves of pain that crush and release the muscles, causing a cramp so excruciating it takes your breath away. Imagine living with that agony on an everyday basis.

I live with a veil of pain draped over my body. Not stubbed toe pain, sprained ankle pain, or even broken heart pain. The pain that I feel every day is an all-encompassing event, specially formulated to break both my body and my spirit. It is a visceral and animalistic torture that brings me to my knees in surrender. That is the reality of living with endometriosis.

Fatigue. I want you to try to recall a night during which you slept very little. Maybe you had a party the night before, or perhaps you were up doing work. Now think about the way both your body and mind felt the following day. Did you function as well as usual? Were your movements as fluid, your mind as sharp? Or did it feel as though you were moving through quicksand, your brain wrapped in cellophane? How would you deal if you felt like that every day?

I live with a crushing form of fatigue that makes my every move devastatingly cumbersome. I often feel as though I am nine months pregnant with quadruplets, constantly carrying around an enormous weight that is attached to my body, sucking whatever strength I have left.  My limbs feel like they are wrapped in lead, and my eyelids covered in cement. All my body wants to do is sleep, every minute of every day, but it can’t. My life doesn’t take a nap when I do.

The Emotional Reality of Endometriosis: Depression

I wish I could say the physical aspects of endometriosis are all that plague me. Unfortunately, this is not the case. You see, for every physical malady that plagues women with endometriosis, there is an emotional component that is equally, if not more, devastating.

Guilt. Guilt is like an itchy woolen sweater that is two sizes too small: suffocating, uncomfortable, and in desperate need of being shed. It permeates the many aspects of my life and makes me miserable. I feel guilty for having endometriosis to begin with, as I sometimes wonder what I did wrong to deserve it. I also feel guilty that I cannot give my husband the emotional or physical attention he needs. I feel guilty that my close friends and family have to spend their days taking care of me when I am incapacitated and that I spend my days idling around the house while they work hard. I feel guilty for canceling plans that I made weeks ago and the lack of ability to make plans to begin with.  Guilty that I cannot be a good friend to others. And guilty when I think of my children who I cannot take care of the way they deserve to be taken care of. Finally, I feel guilty that I cannot give my husband any more precious children due to the hysterectomy I had that was not even successful.

Inadequacy. Due to the symptoms of endometriosis, I often feel inadequate and obsolete. I feel like I lack the ability to do anything important, like my job, or household work.  Relationships with my spouse, kids, parents, siblings and even my friends are often placed on the back burner as I struggle daily to merely exist. This inability to maintain relationships, keep my job, take care of myself or family members or even be intimate with my spouse overwhelms me with the feeling that I am incompetent, useless, and valueless. Sometimes I even feel as though my existence on this earth is pointless if I can’t be a functioning member of society. These feelings of incompetence sometimes also lead to depression, embarrassment, guilt, and rage.

Anger. Imagine being told that the agonizing pain you feel every second of every day is not real, that you are making a big deal out of nothing. How would you feel?  Anger? Rage? Imagine being told that you are a “druggie” when you ask your doctor for pain medication to ease the misery you are dealing with. Anger again? Or how would you feel towards “God” or “The Universe” if you let your mind wander to the opportunities you would have if you didn’t have endometriosis? It’s hard not to be furious when you think of everything you are missing or losing due to this disease. What if you’ve tried for years to get pregnant with no success or just miscarried the child you’ve wanted all of your life. And imagine being so debilitated by your symptoms that you are unable to perform your everyday activities. How would you feel? Frustrated? Angry? That’s exactly the way I feel.

Jealousy. For me, jealousy rears its ugly head when I see other people performing activities that I am too sick or fatigued to perform. It is hard not to be jealous of a healthy person when I am stuck in bed, too exhausted to move, or lying on the couch, writhing in pain. Just seeing someone go food shopping without discomfort causes jealousy within me, as I would do anything to be able to perform everyday activities without pain. Jealousy is also inevitable when we I see other women, basking in their pregnant glow, and I know that I will never again carry a living being inside of me.

Loneliness. Yes, I am extraordinarily lucky to have a wonderful support system in my life, and I am enormously thankful for that support, but there is a profound, hollow loneliness that sometimes overwhelms me when it occurs to me that despite their best efforts, my loved ones cannot fully understand what I am going through. Even my sisters with endometriosis cannot completely comprehend my individual suffering, as every person suffers uniquely. Therefore, I am sometimes led to feel as though no one understands me, and there is no thought lonelier than that.

Loss. Endometriosis is a disease that is full of loss and mourning. On a basic level, I mourn the loss of a “normal”, illness-free life. A life that is chock-full of boring, everyday activities and errands. I am no stranger to mourning or to loss. Having a miscarriage created a deep, inconsolable hole within me that will remain with me forever.  But most of all, having a hysterectomy has caused a ubiquitous feeling of loss within me as I mourn, not only the loss of potential children, but the loss of a part of my womanhood.

Depression. Oh, depression. That dark, suffocating feeling when the world looks like it has no color in it and our futures seem murky and unclear. For me, depression is caused by many different things. Being alone all the time, not being able to spend time with family and friends due to pain, fatigue or other symptoms is depressing. Excruciating pain is depressing. Feeling like my illness is misunderstood is depressing. Feeling like I need to be embarrassed of my illness is depressing.  And lastly, the thought that there might not be any hope for my recovery because there is no tangible hope for a cure, that I might have to deal with the incapacitating symptoms of endometriosis for the rest of my life, is the most depressing thought of all. That is why I wanted to end my life. Yes, I contemplated suicide. Like so many of my sisters with endometriosis, I hit bottom. I was tired of the pain, tired of the despair, tired of the guilt, and tired of being tired. But mostly, I was and am, just tired of the pain.

Living with Endometriosis is Horrendous

Now that I have exposed my vulnerable and aching heart to you, my friend, you have a choice to make. I will never blame you if you choose to stay away from my complicated and sometimes depressing life. Like I said, if I had the choice, I would probably do the same. But let me say one last thing before you make your decision. Life with endometriosis is horrendous, but women with endometriosis are not. We are strong, determined women who fight fiercely and love fiercely. We try our best. We are not lazy or pathetic and we don’t give up. We may not sugarcoat the painful emotions and terrifying symptoms that we deal with. Our honesty may even frighten you. But when you meet a woman with endometriosis, you are meeting a proud, indomitable warrior. A soldier who goes into the fire on a daily basis and emerges with a thicker skin time and time again. A woman who should not be pitied for her pain, but admired for her ever-present resilience and strength. That, my friend, is who I am. Take me or leave me. It’s up to you.

Hello, Endo!

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There are some moments in your life that you will never forget as long as you live. November 7, 2012 is one example for me personally. After years of suffering with endometriosis, the seventh of November was the day that I was officially diagnosed with the horrible illness. I finally had answers behind numerous years of menstrual pain, painful sex, irregular bowel movements, and infertility.  I was relieved to have answers but crushed that I would have to learn to accept living with such a life-altering disease.

Two weeks later, at my post-op appointment, my gynecologist went over the laparoscopy and my endometriosis. He stated that the best way to fight endometriosis was to get pregnant. I remember hearing the brakes squealing in my mind. This was the same doctor who I had cried in front of just weeks before. I had begged him to perform a laparoscopic surgery while complaining of my pain and struggle to become pregnant. All signs pointed to endometriosis – I knew I was living with the disease. His response was that he had burned off all of the lesions that were covering my uterus, fallopian tubes, and ovaries and that I would not have any more issues while trying to conceive. I just needed to have intercourse every other day. No other treatment was offered to me.

Obviously, I left his office feeling disgusted. Five years of trying to conceive and he did not take that into account. As every woman who battles endometriosis knows, sex is painful. There was no possible way that I would be able to tolerate being intimate with my husband 3-4 times per week. I honestly did not know how I was going to come to terms with the fact that my own body was failing me. Although I do not remember the exact date of my postop appointment, it was another one of life’s moments that I will never forget.

Let’s fast forward to June 14, which is another night that will be instilled in my mind forever. I was very ill and after a night of pain and severe vomiting, my husband forced me to make an emergency room visit. After explaining all of my symptoms and medical history to the triage nurse and emergency room doctor, I was instructed to take a pregnancy test. I did not think anything of it, as I usually am given urine tests while in the emergency room. This moment would be different, I found out I was six weeks pregnant.

The night that I found out I was pregnant has been the greatest moment of my life. The only day that I know will be better is when I get to hold my daughter for the very first time. Although I continue to struggle with endometriosis despite my pregnancy, I am at an amazing point in my life. Through God’s good graces, Dr. Folkestad changed my life for the better and made it possible for me to have my miracle baby. I will always be grateful to Dr. Folkestad, for officially putting a name to my pain and taking me out of the darkness of infertility.

And now the worry begins.

As a woman with endometriosis who has experienced the darkest corners of the disease and infertility, I am feeling so blessed for being able to carry my child. I want nothing more than to have a healthy baby, so the gender of the baby honestly never mattered to me. However, my feelings changed when I found out that I was having a daughter. Do not misunderstand, because I love my baby girl more than anything in this entire world, but I am terrified that she will develop endometriosis.

I do not want my daughter to suffer an ounce of the physical or emotional pain that I have lived with and continue to live with despite being pregnant. Since endometriosis is thought to genetic, I cannot help but worry for my daughter. I know that I could never live with myself if she develops endometriosis. I will constantly live with this fear day in and day out until she begins menstruation and I can be certain that no signs of endometriosis are present.

On the bright side, I will be her biggest advocate. I will make sure that she has the best possible care at the first sign of any symptom. Although I know the emotions and recovery that come with surgery, I will never hesitate to consult an excision specialist. I have made it clear to my husband that I will monitor her periods and listen to hear if she has any complaints about how heavy or painful her cycle is. The moment I hear any symptom of endometriosis from her mouth, she will be given options for birth control and I will contact one of the top endometriosis specialists in the country.

Some may disagree with me that even considering birth control before she is sexually active is not good parenting or that she may view birth control options as an invitation to be sexually active. This is definitely something that has crossed my mind, but we will have that discussion as well. To those that feel that way, please understand that I will never do anything to jeopardize her health and well- being. As her mother, I am her biggest fan and biggest voice. There will never be a moment in her life that I will not advocate for her health. She is my pride and joy and I never want her to experience the dark path that endometriosis can take a woman down.

About the Author: Heather Pickens was diagnosed with three chronic illnesses and infertility at 25. She lives in the Southwest with her husband and two dogs. Her goal is to spread awareness while providing the utmost support to woman living with reproductive illnesses. You can also read about her journey at Hello, Endo! or follow her on twitter @helloendoblog.

 

What if Endometriosis Was a Men’s Health Issue?

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As a health journalist and a co-founder of Endo Warriors, a support organization for women with endometriosis, I often get asked “what is endometriosis?”

Which is funny since it is estimated that 176 million women worldwide have endometriosis and yet no one knows about this global health issue.

Sometimes I say “it’s a secondary autoimmune disease where the lining of the uterus is found outside of the uterus and throughout the abdominal cavity — to varying degrees — causing chronic pain and infertility.

And other times I say “it sucks.”

Nancy Peterson of the ERC said “If 7 million men suffered unbearable pain with sex and exercise and were offered pregnancy, castration or hormones as treatment, Endo would be a national emergency to which we would transfer the defense budget to find a cure.” And, I don’t disagree.

If 7 million American men had unbearable pain every time they ejaculated, no one would ever suggest chopping off their balls. If they went to a health clinic that also offered pregnancy prevention services, we wouldn’t shut those clinics down. If 7 million American men were in pain every time they masturbated, urinated or tried to have sex we wouldn’t tell them “it’s all in their head” or “to take the pain like a man.”  No, we would listen and try to find them a cure that didn’t include castration or drug-induced de-masculinization.

But that’s not the case.

Instead we have 7 million American women with chronic pain related to the tissue in their uterus and their menstrual cycle. 7 million American women who have pain before, during and after their menstrual cycle. 7 million American women who experience pain while exercising, having sex and going to the bathroom. So we offer them chemical-menopause and hysterectomies and when those don’t work we throw our hands up in the air and say “well, at least I tried.” Better luck in your next life, perhaps you’ll come back as a man.

The menstrual cycle is the butt of all jokes directed towards women. Bad day? Is it your period? Is Auntie Flo in town?

Seeing red? Are you on the rag?

No, actually I’m just mad that the idea of healthcare for women makes people want to cover their ears and run screaming.

Free birth control for women?

Great idea!

That is until some political pundit insinuates women should just learn to shut their legs.

Maybe instead we should learn to listen to the myriad of women on birth control for issues beyond planning pregnancies. Maybe women should just get easy access to low cost birth-control without having to recite their medical record.

October is health literacy month and when it comes to health literacy, Americans are kindergartners trying to eat the paste off their fingers.

We think Obamacare and the Affordable Care Act are two different things; getting outraged at the notion of Obamacare yet think the idea of ‘affordable’ healthcare is quite nice.

Access to low-cost health care for everyone? Let’s shutdown the government!

Rather, if we want the government out of our private healthcare, then how about they get out of our uteri as well?

Endometriosis – Not Just a Reproductive Disease

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Endometriosis is generally thought of as a reproductive system disease, probably owing to the fact that one common symptom is painful menstrual periods, and that it can cause infertility. The truth is that this is not solely a reproductive disease at all. It can affect the reproductive organs, but it also commonly affects other organ systems such as the intestines and bladder. More rarely, it can also affect areas outside of the pelvis altogether such as the sciatic nerve, the diaphragm, and lungs, and even the calf muscle. In addition to pelvic-specific symptoms such as pelvic pain, bowel and bladder dysfunction, and painful intercourse, many women with endometriosis report systemic symptoms such as fatigue and general malaise, and women with endometriosis have a higher incidence of many diseases such as autoimmune diseases, allergies, inflammatory bowel disease, and even a slightly increased risk of ovarian cancer. The links between endometriosis and these other diseases are not well understood.

Many people may be familiar with the fact that endometriosis is caused by misplaced tissue in the pelvis that forms lesions, cysts, and nodules. However, given its reputation as a reproductive disease, most people expect that it usually grows on the reproductive organs—the ovaries and the uterus. This has been found not to be the case, and even though the work demonstrating that the most common locations for lesions are not the ovaries or uterus was published in the medical literature 24 years ago, the misconception still persists to this day, even among physicians.

Dr. David Redwine, a pioneering laparoscopic surgeon, published a study of the distribution of endometriosis in the pelvis by age group and fertility in 1989. This study described the locations of endometriosis in the pelvis in 132 consecutive patients undergoing laparoscopic surgery. The most common area where endometriosis was found, in all age groups, was the cul-de-sac, which is the area behind the uterus, between the uterus and the rectum. The next most common areas were the ligaments of the pelvis (the broad ligament, and uterosacral ligament, with the right side being involved more often than the left). After the ligaments, the bladder was most commonly involved, and then the left ovary. Then the fundus of the uterus (the top end, opposite the cervix), the sigmoid colon, the right ovary, then finally the Fallopian tubes, the round ligaments, and the abdominal wall.

This study also suggested that, contrary to the popularly held belief that endometriosis spreads to more pelvic areas over time, it does not in fact spread. Lesions can grow and deepen over time, leading to more significant symptoms and potentially organ damage. However, in this study, older women as a group did not have more areas of the pelvis involved by endometriosis than younger women, which is what would be expected if endometriosis did spread in location over time.

The most interesting thing about this study is perhaps not the results themselves, but the fact that 24 years later, the results and their implications for treatment have not been incorporated into practice by many physicians treating this disease. First of all, endometriosis as a multisystem disease requires surgical expertise that often goes beyond what most gynecologists are trained to deal with. And yet many gynecologists who do not have the surgical skills to remove endometriotic tissue from sensitive areas like the sigmoid colon still continue to treat these patients, even those with complex disease, rather than refer them to specialists.

More importantly though, the dismissal of endometriosis as simply a reproductive system disease seems to lead to a lack of understanding of the debilitating symptoms it can cause. Studies on the quality of life for women with endometriosis have shown that women still continue to suffer from frequent symptoms including chronic pain, that impair their quality of life, even after treatment for their endometriosis. The severe pain experienced by many patients with this disease is dismissed in a way that pain from other diseases doesn’t get dismissed. Nancy Petersen, a recognized patient advocate, and Founding Director of the first Endometriosis Excision Treatment Program in the U.S., has compared the pain of endometriosis to the pain of acute appendicitis. During acute episodes of endometriotic pain, patients are often offered Tylenol or naproxen by physicians—would physicians even consider offering those medications to a patient with acute appendicitis? How long will the undertreatment of endometriosis pain persist by many physicians because of the misguided perception that it’s just a “women’s problem” and therefore can’t be that serious or painful?

A New March Madness – Endometriosis Awareness Month

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This March I am celebrating a different kind of madness.  It has nothing to do with college basketball; nor is it related to four leaf clovers, egg shaped candy or seder plates.  No, this March is for reproductive health education and raising awareness about endometriosis. There is nothing nice about endometriosis, even the word is cumbersome to say.  This March, we need to talk about endometriosis and reproductive health and we are going to talk about it; because the state of reproductive care surrounding endometriosis is not OK and it’s not going to get better until more people know about endometriosis and the facts surrounding it.

It is estimated that 1 out of every 10 women has endometriosis.  Endometriosis is a secondary autoimmune disease that occurs when the endometrium (the lining of the uterus) grows outside of the uterus.  Common places for this tissue growth is outside of the uterus, on the fallopian tubes, ovaries, bladder, within the pelvic cavity, on the pelvic floor, and on the bowels.  In extremely rare cases endometriosis can be found growing up towards and on the liver, lungs, brain and on the central nervous system.  These growths respond to the menstrual cycle the same way that the lining of the uterus does.  Each month, the lining builds up, breaks down and then sheds (aka ‘your period’).

When a woman gets her period the broken down lining exits the body as menstrual blood through the vagina.  When a woman has endometriosis, the tissue and blood from the endometrial growths found outside of the uterus have no way of leaving the body.  This results in internal bleeding and inflammation; both of which can cause chronic pain, infertility, scar tissue formation, adhesions and bladder and bowel complications.  Women with endometriosis also suffer from higher rates of allergies, yeast infections, asthma, chronic fatigue, fibromyalgia, other autoimmune diseases (such as hypothyroidism and lupus and others) and increased rates of ovarian cancer, non-Hodgkin’s lymphoma and brain cancer.

There is no cure for endometriosis and treatments leave a lot to be desired.  Common treatments include oral contraceptives, GnRH agonists, progesterone therapies, surgery and hysterectomy.  Since endometriosis usually appears during the reproductive years, hysterectomy is not a welcomed option and yet is commonly prescribed.  Surgery does not cure endometriosis, in many cases the growths reappear within five years. Hysterectomy does not cure endometriosis, with 40% of women see a reoccurrence of their symptoms.  There is no cure for endometriosis.

This March we need to raise awareness.  It’s not a comfortable topic but that is no reason for millions of women to suffer in silence with no known cure.  The discomfort society feels in talking openly about menstruation or uteri or vaginas is no reason to deny any woman the right to proper reproductive care.  1 in 10 women have endometriosis. These women are your friends, neighbors, sisters, co-workers, lovers, girlfriends, cousins, aunts, nieces, mothers, and fellow humans.  It takes an average of 7 years to get a proper diagnosis and even longer to find an effective treatment plan (if any).  This is about proper reproductive care, about millions of women who are embarrassed to talk about painful periods, about millions of women who suffer in silence.  It needs to stop.

This is not a call to arms but a call to uterus(es). This month lets promote reproductive care and raise awareness for endometriosis. Ask me about my uterus, ask those you care about, about their uterus.  Yes, it sounds strange, but how else are we to start the discussion and break the stigma against talking about reproductive illness; especially if we can’t even say uterus or vagina without snickering or feeling as embarrassed as a third grader would.  Please help us raise awareness this March; share this article, share your story, start a conversation, ask a loved one about their uterus and break the silence!