Hi! My name is Rebecca Hoffmann, and I am honored that my friend Jennifer has asked me to write this blog post in order to help spread awareness for a disease that affects as many as 176 million women worldwide and yet most people don’t even know exists. I am one of those 176 million women, and the disease is endometriosis, which is more commonly known as endo. This post is my way of participating in Endometriosis Awareness Month this March.
IF NOT YOU, WHO?
I never pictured myself being this public about something so personal to me. Sure, I have big opinions and tend to share those opinions whether people ask for them or not, but my health and private life always seemed out of bounds. I’m a high school teacher, so I have an obligation to remain professional both in and out of the classroom. I tell my students all about my husband and cat, my favorite books and television shows, my recent trip to the zoo… the public details of my life. When I took a few weeks off from work for my latest surgery, I originally told my students no more than “it’s a women’s problem, it’s not cancer, and I’m not dying.” I didn’t feel comfortable sharing any more than that. When I saw their genuine concern for me, I gradually opened up more without revealing too much: I was constantly in pain, my recovery would take several months, I had to miss even more work for a special type of physical therapy. A class discussion on gender roles and social constructs led me to reveal that I may never fulfill the role of mother due to the potential infertility associated with my medical issues. However, I still didn’t want to get too personal, even with my friends and family. When I posted links on Facebook to stories that dealt with endometriosis, I stayed away from the articles that focused too much on painful intercourse as a symptom. One of my close friends finally said to me, “Becky, you’re married. If people don’t realize you’re having sex then they’re dumb. Speak up more. You need to.” And she was right. I do need to. I finally realized that not many other people were speaking up. Someone had to, and I couldn’t think of a good enough reason as to why that person shouldn’t be me.
Endometriosis is one of the least known gynecological conditions because so many people are afraid to talk about it. We’ve been conditioned as women not to talk about our periods, our sexual activity, our fertility, or anything dealing with our reproductive organs. This silence is exactly why endo is so under-diagnosed and why it takes the average woman 10 years to get her diagnosis. I know that I have the power to make a difference by spreading awareness, and it is my sincere hope that future generations do not have to suffer as my fellow Endo Warriors and I have. I want to share more about my story with you all, but I cannot do that without first explaining what exactly endometriosis is. I hope you will bare with me as I delve into the scientific side of this disease.
WHAT IS ENDOMETRIOSIS?
Endometriosis is a condition where tissue similar to the endometrium, or the lining of the uterus, appears outside of the uterus. Common locations where endometriosis lesions are found include the outside of the uterus, ovaries, fallopian tubes, ureters, bowels, and everywhere else in the pelvic region that you can imagine. Endometriosis lesions have even been found on the diaphragm, lungs, and brain. A similar condition called adenomyosis, or adeno, occurs when endometrial tissue is found within the myometrium (the thick, muscular layer of the uterus). No one knows what causes endo for sure, although there have been many theories. Current research points to the fact that endo is genetic and that women who have endo are born with lesions that remain dormant until puberty. While this theory definitely makes the most sense, it is unfortunately not what is typically taught in medical schools. Many doctors are continuing to learn the theory of retrograde or reflux menstruation, also known as Sampson’s theory, which states that endometriosis is caused by the endometrium traveling backward through the fallopian tubes until it exits by the ovaries and attaches to nearby organs. In his book 100 Questions & Answers about Endometriosis, endometriosis expert and excision surgery pioneer Dr. David Redwine answers the question: “Is the theory of reflux menstruation correct?” Redwine says,
No. Only circumstantial evidence exists in support of the theory of reflux menstruation as the origin of endometriosis. Circumstantial evidence is indirect evidence; it is not hard scientific proof. This theory was proposed in an era when physicians had relatively little information about or clinical experience with endometriosis, and there is no reason to think that anyone at that time would have been able to arrive at the exactly correct theory of the origin of endometriosis…. [T]he continuing lack of what should be easily obtainable evidence is taken as an indication that the theory of reflux menstruation as the origin of endometriosis must be wrong.
Further proof that retrograde menstruation is not the cause of endometriosis (aside from the fact that the endometrium is genetically different from endometriosis) lies in the fact that endo lesions have been found during the autopsies of female fetuses and infant girls. Endometriosis has even rarely been found in men. Fetuses, infant girls, and men have obviously never menstruated (unless everything I learned in sex ed was a lie…), so clearly their endo was not caused by retrograde menstruation. Many people also believe that removing a woman’s uterus and ovaries will prevent endometriosis from forming; however, this is not the case as women who have undergone hysterectomies still tend to have pain from endometriosis. However, despite these discrepancies, medical schools still teach this theory as fact, which means countless doctors are passing on this information to their patients as truth. It’s a vicious cycle of ignorance, and the people who suffer most as a result are the patients.
Symptoms of endometriosis include: incapacitating pain; severe menstrual cramps; pelvic pain at any time during the cycle; back pain; painful sexual intercourse; painful bowel movements; fatigue; bloating; constipation; painful pelvic exams; painful urination; and infertility. Symptoms of adenomyosis are similar to endometriosis and include: intense and debilitating pain throughout the month (often described as being similar to labor contractions); painful menstruation; excessive bleeding during menstruation; painful intercourse; bloating; and an enlarged uterus. While endometriosis is categorized into four stages (Stage 1 – minimal; Stage 2 – mild; Stage 3 – moderate; and Stage 4 – severe), the actual staging is not indicative of how symptomatic someone with endo will be. Someone with Stage 1 may have excruciating pain while someone with Stage 4 may not have any symptoms. One major factor that makes diagnosing endo difficult is the fact that a doctor cannot accurately make a diagnosis without performing surgery, typically a laparoscopy, and extracting tissue samples to biopsy. No medical therapy or imaging test can visualize or allow for the diagnosis of endometriosis. Doctors are often understandably reluctant to perform diagnostic surgeries, so many women unnecessarily suffer an average of 10 years without an exact diagnosis for their pain. Endo is truly an awful disease that I wouldn’t wish on my worst enemy.
SO WHAT’S THE CURE?
There isn’t one. Not yet, at least. However, several treatments exist that may offer some relief.
- Observation and Pain Management: One of the most common ways to deal with endo is just to “wait and see” what happens and take pain medication as necessary. Typically, a woman will start out taking NSAIDs (nonsteroidal anti-inflammatory drugs) like aspirin, ibuprofen, and naproxen. When NSAIDs stop effectively managing the pain, the next step is to get a prescription for narcotic pain medication. However, the stigma against chronic pain combined with new medication laws make this increasingly difficult. Doctors don’t always understand just how much pain their patients are in (in fact, almost every woman with endo says that she has had her concerns dismissed and ignored by her doctor at some point), and prescription drug addicts and those who sell their pills have made it harder for people with a legitimate need for pain medication to get access to their treatment and have relief from their pain. Obviously, the downside to pain management is that treating the pain will not do anything to remove the endometriosis lesions.
- Lifestyle Changes: Some people with endo swear by certain behaviors that they say have helped their pain levels. Practices like meditation, massage, acupuncture, and exercise may bring minimal relief. Some people alter their diets to eliminate gluten, dairy, red meat, sugars, soy, alcohol, and other items in hopes of reducing inflammation or hormonal reactions. I’ve even heard of magic moon stones that provide relief (… just kidding). However, due to the fact that endo is different for everyone who has it, these lifestyle changes may not bring relief for everyone. Pelvic floor physical therapy can also be helpful for women who have a condition called pelvic floor dysfunction (PFD) which occurs when the muscles in the pelvic floor become weak, tight, or impaired.
- Hormonal Therapies: When women with endo first complain about pelvic pain and painful periods, they are often placed on some type of birth control to lessen the length, amount, and/or severity of their periods. Hormonal contraceptives tend to keep the pain under control for several years, but they do not usually work forever and can make it harder to get a diagnosis by masking many of the other symptoms of endo. Similarly, pregnancy (if a woman with endo is even able to get pregnant) may offer temporary relief from endo pain. However, it is a misconception that pregnancy will cure endometriosis. And, quite frankly, it is insulting to suggest that all a woman has to do to help her pain is get pregnant when many women with endo end up being infertile. Most women who get pregnant have their endo pain return after pregnancy, and their pain levels are often worse than before. Many doctors also a prescribe Gonadotropin Releasing Hormone (GnRH) agonist, typically Lupron, which is used to lower hormone levels with the false promise of preventing or reducing the growth of endometriosis. Essentially, Lupron puts a woman into medical menopause for the duration of the injection cycle, which is usually no longer than six months due to the side effects caused by the drug (mood changes, hot flashes, bone and joint weakness and pain, sleep disturbance, vaginal dryness, weight gain, decreased libidos, etc…. Sounds fun, right?). Most endometriosis specialists do not recommend the usage of GnRH agonist drugs as they do not cure endometriosis or decrease the size or amount of endometriosis lesions. They may decrease pain levels for a brief period of time, but the pain will return once the drug is out of the patient’s system. While hormonal treatments can provide temporary relief of endometriosis pain by reducing menstruation, the belief that these treatments will always work is based in Sampson’s theory of retrograde menstruation, and thus they cannot truly be considered as cures or even as effective long-term treatments.
- Surgery: In order to receive a definitive diagnosis of endometriosis, the patient must undergo diagnostic surgery and have a tissue sample biopsied. Pelvic exams, ultrasounds, MRI, and other imaging tests are not sufficient for a diagnosis and can actually be misleading as endo does not typically show up on those kinds of tests unless it is extremely advanced or has taken the form of an endometrioma cyst. Upon seeing suspected endometriosis during a laparoscopy, most gynecologists will use ablation (also known as fulguration or cauterization) to destroy the surface of the tissue; however, stopping at the surface level still leaves the deeper disease behind. Typically when people refer to their endometriosis as “coming back,” it has actually not returned but rather was left behind by a surgeon who did not fully remove deep lesions. The proper and most effective way to remove endometriosis lesions is through excision, or cutting away all of the diseased tissue. Excision requires great skill, but when done correctly the patient has about an 85% chance of relief and improved quality of life. The logical question then is: why don’t all gynecologists perform excision surgery? Unfortunately, the answer is once again based on the faulty theory of retrograde menstruation. If doctors mistakenly believe that endometriosis will always return, then they are less likely to attempt a full removal of the lesions. The vast majority of gynecologists are not properly trained in excision surgery. Of the over 50,000 gynecologists in the United States, perhaps fewer than 100 can truly be labeled as endometriosis excision experts based on surgical outcome and length of relief provided. Many women will need to travel out of state for surgery with a true endometriosis specialist, and personal finances and insurance companies do not always allow for this to happen. Most endometriosis patients are only able to receive ineffective ablation surgery, and they keep having surgery after surgery after surgery hoping to end their pain for even just a brief period of time. Eventually, their surgeons will suggest a hysterectomy (again based on the theory of retrograde menstruation… no uterus = no menstruation) which still will not end the patients’ endometriosis pains. A hysterectomy will only provide guaranteed relief if the patient has adenomyosis. Unless patients gets proper and effective excision surgery for their endometriosis, their futures will consist of a stream of surgeries with very little hope of relief.
I am certainly no stranger to medical issues and surgery. My first surgery was in 1993 at the age of six when I had bilateral hernias removed from my groin. I recently learned that this was the start of my weakened pelvic floor muscles. At the age of seven, my body started developing in ways that it shouldn’t have at such a young age. My parents took me to an endocrinologist who diagnosed me with precocious puberty. We were told that I had the possibility of starting my period at any time, but thankfully it held off until I was 12.
I remember always having bad periods but never realizing that my periods were worse than what other people dealt with normally. I was a competitive swimmer between the ages of eight and 18, and I hated going to practice when I was on my period. My cramps were always so painful, and they didn’t just occur during my period. I had cramps the week before my period, the week of my period, and the week after my period. I had maybe one week each month where I didn’t have pain. When I was 16, I finally convinced my mom to let me see her gynecologist with the intention of getting a prescription for the birth control pill to help my pain. I was worried my parents would think I was lying just to get birth control, but they listened to me and trusted me (and the fact that I didn’t have a boyfriend and was so involved in my church’s youth group didn’t hurt). My gynecologist, however, was not as trusting. She repeatedly asked if I was or planned to become sexually active and didn’t seem to accept “no” as the answer. She dismissed my concerns of painful cramps and just wrote the prescription without even doing a pelvic exam. But as I was only a teenager and had no knowledge of gynecological medical issues whatsoever, I just filled the prescription and went on my way. My cramps subsided to what I assumed were “normal” levels.
Nearly two years later in May 2005, my mother underwent a hysterectomy after complaining of pelvic pain and heavy periods. She was 45, and I was almost 18. Her gynecologist, the same one I was seeing, discovered during the hysterectomy that my mother had endometriosis, and she removed my mother’s uterus and used ablation techniques on her endometriosis. My mother has been asymptomatic ever since, which leads me to believe that she also had adenomyosis. However, her surgery caused more medical complications for her; my mother woke up with hardly any feeling in her legs and feet. Her gynecologist admitted to having my mother positioned in the wrong way for too long of a time which caused permanent nerve damage. My family contacted a lawyer but were told that we didn’t have a case against the doctor. While some of her feeling has returned, my mom is still unable to work and has frequent pain. I had one last visit with that gynecologist before she left the practice. That visit consisted of my first (and an incredibly painful) pelvic exam as the gynecologist was examining me while angrily (and, in my opinion, unprofessionally) bashing my mother for seeking legal council. I was so glad that I would never have to see that doctor again.
I continued to have more pain throughout college, and what began as cramping turned into sharp abdominal and pelvic pains. My primary care physician thought I had stomach ulcers and asked me to have an endoscopy to figure out what was causing my pain. Nothing looked out of the ordinary. I realize now that these pains were caused by my endo, so the doctor wouldn’t have found anything during the endoscopy.
A few years after graduating college, my gynecologist encouraged me to have a Mirena intrauterine device inserted as I was now experiencing hormonal migraines in addition to my pelvic pain. The IUD helped my pain levels at first but not for long. My sharp abdominal and pelvic pains were becoming almost constant. Based on these pains, my primary care physician diagnosed me with IBS and said just to watch the amount of grease I consumed and take a laxative if necessary. Neither of those suggestions really worked, but I eventually stopped complaining because my doctor acted like it wasn’t a big deal. After months of more pain, I scheduled an appointment with my gynecologist, thinking that perhaps I had an ovarian cyst or something else wrong with me other than IBS. She dismissed my concerns after hearing my doctor had diagnosed me with IBS and just wrote me another prescription for a laxative. My pain increased to the point where it was almost unbearable. Prior to chaperoning a school field trip to Boston in May 2013, I made another appointment with my gynecologist. I had been searching my symptoms online, and my pains did not feel consistent with IBS. I was convinced I had an ovarian cyst. However, my concerns were dismissed. I was once again given a laxative and a prescription for 800mg ibuprofen and told to stop searching my symptoms online because it would only make me paranoid. The laxatives didn’t help; they just made me miserable on the two 12-hour bus rides from Pittsburgh to Boston and back.
My pain continued to grow. In August of 2013, I started a new teaching job much closer to the home my new husband and I had recently purchased an hour north of where I grew up. With that new job came new insurance, a new primary care physician, and a requirement from my employer that I undergo a physical. I explained my pains to my new doctor, and she sent me to get an ultrasound done to look for an ovarian cyst. The ultrasound was incredibly painful. A few days later I received the results that I had a two-centimeter cyst on my right ovary and was instructed to make an appointment with my gynecologist. As I had yet to find a new gynecologist closer to my home (and I wasn’t sure that I wanted to seeing as how I thought I had a good relationship with my current one), I called my gynecologist and scheduled yet another appointment to discuss my pains. Prior to my appointment, my mother made the comment: “your symptoms sound like mine before I was diagnosed with endometriosis.” I started searching online to learn more about endo, and I told my gynecologist what my mom had said and suggested that maybe my symptoms were caused by endometriosis. Her exact words were: “There is no reason whatsoever to believe that you have endometriosis. Stop searching online because you’ll just end up exaggerating your symptoms to meet some Google diagnosis. Yes, you have a cyst, but there is no reason that cyst could be causing you as much pain as you’re describing. The cyst will go away and so will whatever pain you think you have.” I felt defeated. I knew that something was wrong with me, but she wouldn’t listen. I left her office with another prescription for a laxative and ibuprofen, and I was determined not to go back there ever again.
My gynecologist had me taking three pills of 800mg ibuprofen each day, and I was still feeling the pain horribly. I would often collapse in pain on the floor at home. It was incredibly difficult for me to teach each day. I started looking for a new gynecologist closer to home who would take me seriously. I found Dr. Y., a younger gynecologist who listed endometriosis as one of her areas of interest. I scheduled an appointment, told her my concerns, and heard the words that every patient with a chronic illness wants to hear: “I believe you.” She ordered another ultrasound (this one more painful than the first) that checked to make sure my cyst hadn’t grown and that nothing else appeared out of place. Then she monitored my symptoms. She was originally going to monitor just for one month but told me after that first month to wait one more. I cried in her office that day because I just wanted the pain to stop. I went back after the second month and told her the pain was worse, and she scheduled my laparoscopy for the following week. My surgery was one week before winter break started at the school where I teach, so I was able to leave myself some time to recover before returning to work.
My husband Shawn was so concerned about me leading up to this surgery. I was constantly in pain, and both he and I just wanted me to get better. Every day was a struggle, and most days I wasn’t sure how I was able to survive. There were times when all it took was the car ride from our house to the grocery store for my pain levels to change. Several times I sat in the car crying with pain while he hurried to buy the groceries we needed so that I didn’t have to get out of the car and shop with him. When I was in too much pain to cook dinner, Shawn would bring home food after work and clean up after we ate while I went to take a hot bath or go to bed early. He would warm up my heating pad and hold me when I was crying and needed comfort. Shawn has been my rock throughout this whole ordeal. I have no idea how I could have gotten through this without him. The night before my surgery, Shawn asked me what I wanted to happen the next day. I answered: “I honestly just want to learn that I have endometriosis. It’s obviously not an ideal diagnosis, but at least then I will know what’s wrong and have a plan to treat it.” And sure enough, 10 years after I first complained to a doctor about my symptoms, that is what happened. During a diagnostic laparoscopy on December 17, 2013, Dr. Y. found endometriosis on the back of my uterus and cauterized the endometrial cells and the cyst on my ovary. Dr. Y. diagnosed me with Stage 2 endometriosis, and the biopsy proved that what she removed was, in fact, endo. I came home from the hospital and went to sleep. A huge weight had been lifted off my shoulders.
My pain relief, however, was short-lived. At my post-op appointment with Dr. Y., she did not seem optimistic about my results being permanent. She said there was a chance she missed some endo and that my pain would return eventually. If that happened, she said she would recommend Lupron injections and gave me some paperwork on it. Just from the description she gave me, I was not too fond of the idea. Dr. Y. told me that my first post-surgery period would be awful, and it absolutely was. But my first post-surgery period was quickly followed by a second and a third and a fourth and a fifth. I was bleeding more than I wasn’t with no order to the cycle. I was in pain again, and it was the same type of pain I had before my surgery. I had less than three months after my surgery before I realized that my symptoms were back. To be honest, I probably knew before that but just didn’t want to admit it.
I made an appointment with Dr. Y. to discuss my symptoms coming back. She did a pelvic exam (that was so painful I had to grip the table to keep from moving) to determine that nothing new could have been causing my pain. She said that my exam was consistent with my prior exams and that my endo was causing my pain again. Dr. Y. once again suggested Lupron. By this point I had done my own research on Lupron and was vehemently against it. I had joined some Facebook support groups for women with endo, and I had read so many horror stories from women who had taken Lupron in the past. As a result of those stories and the fact that at its best Lupron just masks pain and doesn’t actually do anything to remove endo, I told Dr. Y. that I was refusing the injections. She said there was not much else she could do for me if I was refusing Lupron. She also said that four months post-surgery was too soon to operate again and that she wasn’t willing to prescribe me a narcotic just yet. She and I agreed to continue to monitor my symptoms and see how long I could wait before another surgery to remove any endo she found. I left her office with yet another prescription for 800mg ibuprofen.
Despite how hopeless my condition felt, I refused to give up. As a high school English teacher, one of the concepts I try to instill in my students is never to take what someone else says as fact without doing your own research to confirm it. I became obsessed with learning as much as I could about endometriosis. I discovered that the theory of retrograde menstruation had been largely discredited and that most of the methods used to treat endo, including those suggested by my own gynecologist, were outdated. Through my participation in a Facebook support group called Nancy’s Nook, which was founded by a nurse named Nancy Petersen who worked with Dr. David Redwine, I learned about the benefits of excision surgery with a true endometriosis specialist. My husband started joking that he wanted to buy me a white coat since I probably learned more about endo than most doctors know. I didn’t want a treatment that would cover up my pain; I wanted the cause of my pain removed, and I knew that I would need excision surgery with an endometriosis specialist to accomplish that.
By the time I sent my medical records to Dr. Ken Sinervo at the Center for Endometriosis Care in Atlanta, Georgia, my pain levels were unbearable. Endometriosis was making my life unlivable. I lived in constant fear of a flare up. Our water bill skyrocketed from all the hot baths I was taking to help relieve my pain, and I started buying maternity pants to fit my bloated abdomen. I’ve cried so many tears of sadness and frustration and anger during my fight with endometriosis, but my first tears of happiness came when Dr. Sinervo called me on a Wednesday night at the end of August and promised to help me get better.
The next step was to organize our trip to Atlanta. I scheduled my surgery for December 17, 2014 – exactly one year after my last surgery. The date was a coincidence, but I knew it was some kind of a sign. I planned to take about four weeks off work to recover and was thankful that two of those weeks would be over winter break to save me the sick days. I scheduled an appointment with Dr. Y. to tell her about my plans to have surgery in Atlanta. I was nervous that she would feel slighted or offended, but she wasn’t. She actually gave me a high five and said she was excited for me, and I was so glad to have her support. My husband and my mom were coming with me to Atlanta, and we had a lot of planning to do. We found a hotel that offered a two-bedroom suite at a medical discount since we would be down there for about a week. I made sure we booked a direct flight on the way home to make post-surgery travel as easy as possible. We rented a car so we wouldn’t have to rely on public transportation. I bought a sweatshirt that said “F*CK ENDO” to accurately express my feelings about the disease that had caused me so much pain. I was ready. My surgery couldn’t come soon enough.
While posting online in Nancy’s Nook, I happened to meet the woman who had the surgery right after mine. Kimberly and I messaged back and forth and exchanged our stories. We had already formed a strong friendship by the time we got to Atlanta. Our families met for lunch when we arrived (Kimberly and I had chicken broth as we were on a clear liquid diet for our bowel prep), and we comforted each other in the waiting room before our pre-op appointments. She helped keep me calm, and I am so thankful that endo helped me find a new friend.
Dr. Sinervo was everything I had hoped he would be. I was a little terrified to be putting my trust and my hope in a man I had never met and wouldn’t be meeting until the day before he cut me open. I didn’t need to be afraid. I started calling him Saint Sinervo because he truly works miracles. After my pre-op ultrasound, he diagnosed me with pelvic floor dysfunction and wrote me a prescription for pelvic floor physical therapy. Then I met with Dr. Sinervo and his colleague, Dr. Fatehchehr, and finalized my surgical plan. I left his office, filled a prescription for pain medicine, and went back to the hotel. I didn’t get much sleep that night thanks to anxiety and the bowel prep, but I was nonetheless excited for my surgery the next morning. Dr. Sinervo calmed the rest of my nerves by praying with me and holding my hand as I went to sleep.
I woke up a few hours later to find that my surgery had been a success. Dr. Sinervo excised my endo and some adhesions that had connected my right ovary and sigmoid colon to my pelvic wall, and he removed a fibroid on my uterus. I was also preliminarily diagnosed with adenomyosis (the only way to definitively diagnose adeno is with a biopsy after a hysterectomy, but Dr. Sinervo is rarely wrong about this). Because of my suspected adenomyosis, he performed a presacral neurectomy, which cuts the nerves that attach to my uterus to disconnect the pain signals to my brain, in order to postpone my need for a hysterectomy. Kimberly’s surgery went well too, and we had a milkshake and morphine party as soon as she was able to walk to my room. I spent the night in the hospital and then recovered for a few days at the hotel. I had a post-op appointment before I flew home where I got to speak with both Dr. Sinervo and Dr. Fatehchehr, thank them profusely for helping me, and give them the biggest hugs I possibly could at that stage of my recovery.
Recovering from excision surgery takes a long time. I was warned that it could be several months before I feel like I’m healed, which is pretty accurate based on my experience. I’m just over two months post-op, and I still have issues sometimes. While I continue to have some recovery pain, much of the pain I have now is because of my pelvic floor dysfunction. I just started physical therapy a few weeks ago, and I am already seeing some improvements in my pelvic floor strength. My therapist thinks that my recovery will take several months though. At my post-op appointment with Dr. Y., she still did not seem convinced that my excision surgery would provide me with as much relief as I had been promised by Dr. Sinervo. I can’t blame her for this as I know that Dr. Sinervo’s approach likely goes against everything she has learned about endometriosis, but I am determined to be the case that proves to her that excision surgery with an endometriosis specialist is the most effective treatment. I know that as time goes on without me having any more endometriosis lesions that it will be impossible to ignore the benefits of full excision.
I still have a long way to go with my recovery, and I know that a hysterectomy is probably in my future due to my adenomyosis as the effects of the presacral neurectomy will likely not be permanent. I’ve come to terms with the fact that I may never be able to carry my own children due to my endo and adeno, but that doesn’t mean that I won’t try eventually. Even after excision surgery though, I have no guarantee that I will ever be able to conceive a child or carry a pregnancy to term. A lot of people think this is a tragedy, but I know that even if I am unable to have my own children that I can still live a fulfilling life by helping other people’s children through my job as a teacher. I already have around 125 children each school year, and that is plenty for now. Many people focus on infertility as if it is the worst part of endometriosis. While infertility can be tragic, it is even more tragic to trivialize the physical pain and emotional suffering that come with having endo. Women who don’t know about excision surgery or can’t access it often see no way out except suicide, and many are ultimately successful in ending their pain by taking their lives and passing on pain to others. While I have never considered suicide, I have wondered many times if dying would be less painful than my worst flare ups. This is exactly why I fight so hard for endometriosis awareness and education. No woman should feel like she is trapped and can’t escape her diagnosis.
SO WHAT CAN YOU DO TO HELP?
Most importantly: know the symptoms of endometriosis. One in 10 women have endo, but there are so many women who don’t know they do. Even if a woman recognizes the symptoms, she will often have to be her own advocate and push her gynecologist to perform a diagnostic laparoscopy to make sure. The average woman will wait 10 years for her diagnosis, and there is no reason that number should be so incredibly high. Don’t be afraid to talk about periods and pelvic pain. Painful cramps that keep you from participating in everyday life are not normal. Do not resign yourself to a life of pain without fighting for your health.
Spreading awareness and education is also important. March is Endometriosis Awareness Month. One small thing you can do to help recognize Endometriosis Awareness Month is to take part in the Endo Challenge. Starting on March 1st, the Endo Community is challenging social media to turn yellow for endo. All you have to do is visit www.endochallenge.com, click a link to turn your social media profile picture yellow, and then tag some friends to do the same to spread awareness. If more people know about endo, hopefully future generations will not have to suffer as my fellow Endo Warriors and I have. For more information on the Endo Challenge, visit www.endochallenge.com. I hope to see you all turn yellow for endo on March 1st!
- 100 Questions & Answers about Endometriosis by Dr. David Redwine
- Endopædia website – http://endopaedia.info
- Center for Endometriosis Care website – www.centerforendo.com
- Nancy’s Nook Endometriosis Discussion and Education Facebook Group
- Endo Challenge website – www.endochallenge.com