Excellent blog describing what it’s like to live with an undiagnosed illness.
I’m on a roll today… tired of people telling me to not research my health issues. “Quit being a Web MD doctor,” they tell me, with an amused smirk in their eyes, as my obvious ridiculousness has apparently tickled their good senses. I’m such a silly goose, I know. It’s not just that whole thing, but also the frequent vibe I get from people that whatever is going on with me, I am obviously bringing it on myself. I’m tired of much of the attitude I encounter as I work my way through my medical issues, quite frankly.
Please, enlighten me. If you have suffered pain and symptoms that have interfered terribly in your life for YEARS, and you have done lifestyle changes and seen many medical professionals and had operations and taken medications and you were still not well, what would you do? Lay there watching Netflix, figuring some doctor will eventually get it figured out? Somehow I doubt it. You will want answers and you will want hope that it may eventually end. I am not a moron. I am a good researcher. I have learned how to discern types of information into legit or not, learned to observe the when and what of my symptoms, and I have realized that I am the only person privy to my feelings and symptoms. So, yes, I am going to continue to work at it, because at the end of the day, I am the true expert on me.
Furthermore, I am so sick of all the judgement I feel coming at me. My health issues are not my fault. I don’t think I deserve them. They are not a manifestation of a mental illness. Sorry, guys. When I suffered severe PPD and had a years-long mental breakdown, I can say that I did not feel like there was an infected piercing inside my rib cage back then. I was able to eat without it causing me searing pain daily. I used to be able to laugh without having to stop because it hurt. You would think that if my pain was caused by depression, then, logically my pain would have peaked with the depression. But my issues did not come along until I was out of the woods on all that stuff.
And yeah, I do live a first-world lifestyle. I do have an office job and a daily commute. I eat packaged foods and read on my tablet a lot. I drink alcohol moderately and have again started to use fluoride in my toothpaste. I am vaccinated. My lotions have parabens in them. However, none of the people in my life who also live this life have the issues I do. I’m assuming searing abdominal pain is not part of my colleagues day-to-day like it is for me.
But what’s funny is that when this all began, I was going through my “truther” phase – eating the “cleanest” diet of my life, drinking kombucha and eating mostly raw foods, and I had reduced my use of products that were not “natural.” I was in the best shape of my life, with a level of muscle tone I may never again hope to be able to re-achieve. I was meditating and I spent the beginning of this all wondering if it was my chakras being out of balance or something. Maybe my history of sexual abuse as a kid was coming back around to re-victimize yet me another time. Son of a bitch. I meditated on forgiveness and trying to balance out my spiritual vibrations. If I forgave harder, maybe my soul would stop wanting me to hurt physically.
But, I got sicker. I guess I wanted it; I was “asking for it.”
Three summers, this will be, three summers since I was able to have one day without feeling pain in my body. Happy fucking summer solstice, guys. I can barely remember what it was like to not need to take something for pain so I could go out and dance. Middle fingers extended to all of those people who suggested I need to push through it and exercise more and that will help me. Seriously, fuck you guys. The funny part is I loved exercise, and love the high it gives me. But it’s excruciating and takes me days to bounce back from physical exertion. Excuses, excuses, right? I would like to lay a dagger into your side and see how many miles you can run. Email me and we can set up something.
I truly do appreciate all of the suggestions on supplements and THC based remedies. I do not doubt that infusing my body with THC oil would make me feel better, not a bit. But it’s economically not an option, unfortunately, as bullshit as that may be. I am not in a financial or legal position to cook up a pound of weed. We can debate how screwed up that is until we are blue in the face but it remains my position. And I am afraid to mix in more chemistry in my body, in terms of supplements, until I know what is really going on. I don’t want to confuse things more, before I find an answer. I think that makes sense.
“Victim blaming” is a buzzword phrase we hear in society all the time. Generally it relates to rapes – yes she was gang raped at a frat party, but she was drunk and wearing this little dress, so we all mouth these platitudes of how wrong rape is, but goddamn, what self-respecting girl goes and gets hammered in a mini skirt at a frat party without expecting to be raped? She brought it on herself. Not officially, maybe, but this is the truth in most people’s minds when these things are in the news and we all talk about it over coffee in the relative safety of our homes or jobs and all of our careful choices. Not often do we contemplate the how or the why or how a group of young men feel ok about taking turns penetrating an intoxicated woman’s various orfices in a team effort. The seedy underbelly of humanity that no one enjoys examining… the idea that many people will see another human vulnerable, and hurt them instead of help them. So instead it is about how she should have made a better choice, well, then, they would not have been compelled to brutalize her.
I have felt victim blamed many times in my struggle with my health. It gets worse the more fruitless my search for answers becomes. The lack of a definitive diagnosis so far seems to justify the thinking that this is on me, that, by living my life in a way that is basically the same as most other people, it is somehow irrational for me to expect to feel about as well as most others. This must be something that has sprung from my poor choices, physically, mentally, energetically, spiritually. The implication of this is the idea that, when people do not live life in the right way, they will experience pain, unhappiness, and illness. To an extent, of course, this IS true. If you live hard and rough, don’t eat right, etc., yeah, you are going to suffer consequences physically. But what about all of the people who live within reasonable bounds and still get sick?
To me, I see the mentality of victim blaming to be the result of fear and good intentions, in a way. People want to believe they are safe, and so are their loved ones. The people who are sick are sick because they made the wrong choices, they did the wrong things, and now they are paying a fair penalty for it. It’s sad but it’s fair, and makes sense.
How many of us see the morbidly obese man or woman on the scooter at Walmart and shake our heads in disgust? I think we all have. You tell yourself, “Get up and walk, for fuck’s sake. No wonder you are fat and can’t walk around. You are lazy and disgusting trash. Now get the fuck out of my way. I need to find the mayo.” None of us know this person’s story or medical history, generally, and the one we patch together in our minds is a mosaic of assumptions. This is socially acceptable victim blaming. The purpose of this is to safely place ourselves and loved ones on the other side of that dividing line – If I make better choices, I will not be the one in the scooter at Walmart. And it is largely a logical point. Take care of yourself and odds are you will be healthier. But what if it doesn’t work that way, and one day, after making what you thought were mostly the right choices, you find yourself sick and in pain? And then you are the one in the scooter, enduring the haughty glances?
Welcome to my neighborhood.
It stands to reason that we must always try our best. We should definitely use the knowledge we have acquired about the human body and health and safety to maximize our lives the in the best way we can, as much as we are able to. But we must never assume that by doing these things that we are able to effectively circumvent any negative outcomes. This is simply not true. And when we come across people who are in the midst of these personal horrors, no matter how tempted we are to blame as a means of separating ourselves from the same fate, we must stop ourselves. Being alive is being vulnerable. We all have a death sentence and we all are eventually going to face some trouble or another. I am so sorry to tell you this, but even if you eat “clean,” live “clean,” meditate, spend time in nature, pierce the veil or what-not, you can still get sick. You can still acquire health conditions and pain and maybe even die from it. Sometimes a cell just goes rogue. Sometimes a blood clot explodes your brain, out of nowhere. No matter how healthy you may live, sorry, but you are dying.
This is my battle cry. Sorry, not sorry.
All of the disapproval, David Avocado Wolfe links, and judgement in the world cannot save you from this fate. Sooner or later, you are dead meat, as am I. So, forgive me if I seem flip and dismissive sometimes. I spent a lot of time trying to lead that clean and pure life and I still got sick. And now, in between shitty days and doctors and sometimes feeling sad for all I have lost, I try to enjoy myself as much as I can. It sometimes comes in the form of fruity smelling, chemically based lotions from Bath & Body Works, or a nice gluten-filled IPA beer, or, sometimes, a Big Mac (GASP). I truly have no idea why my hair is falling out and has been for the past several months and why I feel like I have an infected wound in my torso, or why almost everything I eat makes me want to vomit. I have to summon the hope in myself that maybe this will someday improve and keep reading, keeping feeling and thinking, keep trying to get to the bottom of it.
I don’t need people talking to me like I have no health literacy, have no self-awareness, or like I have no grasp on how to live a healthy life. I don’t need medical or nutritional or spiritual advice from my friends and family, unless I ask specifically for it. Sorry but I wish you all would trust me that I am smart and open-minded and I am working on it in my way. Don’t make me explain this all to you as a means of ending a hurtful conversation. Please don’t hate me or yell at me for telling you I need this. I need love and empathy and I need understanding. Don’t blame me because you are afraid of my fate becoming yours. Blaming me will not keep you safe. Sick people seem to be a walking manifestation of the vulnerabilities that come from having a human form but it doesn’t make it right to victim blame us. Life is scary. We can do better by being empathetic and kind to one another instead of judging and preaching. Yeah, maybe it is scary and it is tempting to believe that you hold the answers to how to make it end, but odds are, you don’t. Stop bitching at me, and give me a fucking hug. We are all in this fight for our lives together, aren’t we? Bring it in, my friend.
I don’t speak with you often, if at all. I have been living under the assumption that if you are really out there (and I don’t exactly subscribe to that view, to be honest), you don’t want me spending my time here being fixated on you and our relationship. That seems to be the hallmark of most unhealthy relationships, doesn’t it? If I was always supposed to be under your metaphorical wing, then why would I have been born here, so far from “home”? I am a mother and having created a couple of my own humans, my dream for them is that they grow to be self-sufficient and independent people. I want them to always feel my love and support, but I want them to believe in themselves, and to learn to solve their own problems. This has been my struggle to accept the dogmatic nature of the relationship many of your believers seem to have with you.
I remember when I was very young and in Catholic school, I used to catch myself in a panic, thinking, “Oh, no! I just was forgetting about God and Jesus!” I had heard that our relationship, in order to be as you would wish, required my near-constant exaltation and glorification of you and your son. But this sounded bogus to me then and it does now. I know those priests and nuns are supposed to be in closer touch with you, but it has never rang true to me. Sorry. Or, if it is the way it is supposed to be, maybe you have some issues and it is better that I do my own thing. Just because you may be in some position of authority, it doesn’t mean I must participate is some sort of weird and unhealthy attachment situation. If you are mad about that, maybe you should work on it. Because real love allows freedom.
So I decided if there was or was not a God out there, observing and existing, that my best bet either way was to try to just do my best. I spent a lot of time and effort to get right with myself and the people in my life – and believe me, that required a lot of effort and I think I have done ok at it. I have definitely made mistakes and errors and have not always been proud of myself. But I have worked hard and I am proud of it. I have felt more at peace with my existence here since then. I have put effort into trying to spread happiness and peace when I could. I help people if I can, and if I can’t, I still try to love them. I thought maybe getting to that point was my struggle in life, and once I was able to get a handle on my mental status and state of soul somewhat, I felt like I did well. Like you would approve somehow.
Then my body started to give me problems. I began to hurt and feel sick all the time. Despite pursuing medical help for three years now, going through several diet changes, supplements, medications, meditations and yoga classes, self-help books, doctors, mistaken diagnoses, procedures, and surgeries, I am still at this point in the same exact situation. This is what brings me to write you this letter today.
I have made great effort to have a positive mindset about what I have been going through. I can actually see many wonderful things that have come from this all. I have met some amazing people and I have noticed my patience, gratitude, and compassion deepening as I have struggled to come to grips with the pain and uncertainty. Yes, I have had dark times and anger and fear and grappled with those feelings. Sometimes I have been more successful at it and other times, less, but I have persisted in living through it all, and I am proud of it. I like to think it has even been good for my kids, because I have tried to use it as an opportunity to teach them about perseverance through difficulty, as it has taught me. Despite being apparently unwell, I managed to move myself into a better life situation in some great ways. I have accomplished some things I never thought I could.
I feel myself turning a dark corner recently, though, God. Three years of dead ends as I get worse and worse are starting to take the fight out of me. I miss eating without feeling sick and pained. I miss laughing hard without having to stop because the stabbing pain it causes me. Despite repeating to myself daily – it could be worse, others have it so much worse – I am starting to tire of this. I am losing hope. This is why I am writing to you, the quite probably non-existent deity who civilizations have perished in the name of, the supposed benevolent father of all that exists, yet lets kids starve and live torturous lives, the one who is said to have created this human race that insistently inflicts cruelty and pain upon one another. Let’s call it what it is. This letter is a wish on a star, focused at a light so far away, it may no longer exist as I stand and stare at it. It’s most likely a waste of time besides a self-indulgent practice in releasing some of my sorrow and grief. But it is all I can do, so it is what I will have to settle for.
I am so grateful for my life. Immensely, ridiculously. Life is glaringly, breathtakingly beautiful. Despite the sorrows that exist alongside the love, I love being here. It’s a gift. I hear stories and meet people all the time who show me this is truth. I have a family and I love them more than words could ever articulate. Every day, there is something interesting, amusing, intriguing, and I truly look forward to what’s to come. But my pain and fear are getting larger than that and I need help. I know you never have owed me a damn thing. I don’t even believe in you, yet I write this letter. I am in pain. I have made efforts to help myself, because, as I stated above, I believe in being independent and self-sufficient. But it hasn’t helped, and my heart aches, literally and metaphorically.
We are coming to that point – shit, or get off the pot. I can’t keep up with this suffering in uncertainty. I have found myself thinking that a bad prognosis would at this point be better than none. I suppose that is not true, but it shows where I am at. I have tried so hard. My hope is gone and it’s making me want to give up fighting. In a last ditch attempt, here I find myself, asking God or the universe or whatever for one wish – hope. Please give me a reason to hope that this is not going to be the rest of my life. Or that if it is, that I may at least have some kind of understanding as to why. I think that as someone who has tried hard to bring good to the world when I can that I am worth this, and this is why I ask. Really, I think most people (who do not hurt others horribly on purpose) deserve what I am asking. Sometimes I make fun wishes for things and they actually come true – bags of fake flowers, apple sparkling water, hell, I even got a newer car only a week after I wished for it to happen last year. So I figured what can it hurt to ask. Here I am, God, tossing pennies into the well, wishing on stars that are already several moments in the past. Screaming into the abyss. Please hear me out. I will be worth it. I think I can do good in the world. Let me be here and be ok and I will. I swear.
Getting a diagnosis of a chronic disease is life-altering and devastating for anybody who lives through it. But, as roughly 176 million women world-wide have learned, there is something a bit worse: having a chronic illness that nobody really understands – doctors, friends and family, even other people that have it too. This is the reality that women with endometriosis must manage to navigate, and it’s not easy.
Endometriosis is a disease where the lining of the uterus (the endometrium) grows in other parts of the body besides the uterus. It is most commonly found in the pelvic cavity, often on the ovaries, fallopian tubes, and peritoneum, but can also occur in other areas. Some women have it on their bowel, bladder, rectum, diaphragm, appendix, gall bladder, and pelvic wall. There have even been cases where it has been found around the heart and brain.
The Department of Health and Human Services states that about 15 to 20 percent of women in the US have endometriosis, but the number could be higher. It takes an average of eight to 10 years for women to get diagnosed, largely because the only way to get a true diagnosis is through surgery.
It took 21 years for me to find out I had endometriosis, although only three years of actively seeking medical help.
Generally, the only signs of endometriosis are pain and infertility. Painful periods are the signature of the disease. This was my first clue. From the time I was 12 years old, I generally missed two or three days of school a month due to my period. I had heard of cramps, but the pain was more intense than anything I had ever felt. Every month, I vomited and even fainted from the pain. The most memorable time was when I woke up on the restroom floor at my high school with the secretary and principal leaning over me, looking very concerned.
They had to walk me to the office, and it was between classes. A lot of people saw me, and there were whispers among my peers that I was on drugs. I wasn’t. My mom was at work, and the principal, Mr. McShane had to drive me home from school early. I was so embarrassed.
My experience is all too common. Bridget Fritz, of Dublin, also recalls missing school monthly as a young teen.
“I remember getting my first period and knowing in my gut it was not normal, or like how other girls had described,” said Fritz, 24. “Within six months, just after my 13th birthday, I was regularly missing school because of how crippling the pain was.”
For girls like us, most are commonly prescribed birth control pills. I was. They usually reduce the length of the period and the amount of pain that comes along. My doctor told me it would help to “regulate” my cycle. It sounded good to my mother and me, so I started birth control at the tender age of 13.
It helped and I was fine for years. But, there is one downside to this method. Endometriosis is estrogen dependent, meaning that it feeds off the estrogen produced by the ovaries, or, in some cases, estrogen-based birth control pills. So, while it might hide symptoms, the tissue continues to grow over the years, quietly.
I was fine for a long time. I remained on oral contraceptives through my 20’s, only going off them to have my two children, who I was blessed to have with no trouble. I made it to the age of 30 before I started to notice something was not right.
I was working at a job that was very physically strenuous. I worked long hours in very high temperatures and did a lot of heavy lifting. I loved it, though, and I got into the best shape of my life at that time. I felt strong and healthy, until I didn’t.
I started to feel a lot of pain in my abdomen. I had experienced this intermittently through my 20’s and even had a couple CAT scans to investigate, but nothing ever showed up. It became something that I felt every day, and I also began to experience a lot of digestive issues. I started frequently having to run to the restroom during my shift to get sick, and word got around among my boss and coworkers that I may have some kind of drug problem. I could see how. I was sick every day, slow, and in pain. I couldn’t lift heavy things anymore. Eventually, they cut my hours until I didn’t have any, passive-aggressively firing me.
I went to doctors and specialists and they ran the gamut of tests on me. No Chron’s, no Celiac’s, no cancer. I was glad to find out that I wasn’t about to die, but I still felt lousy and had no answers. I went back to college at that time and decided to put my health issues on the back burner. I was certain I must have tweaked some muscle and decided to try yoga and getting into shape. But the pain got worse, and finally I found a doctor who would operate on me laparoscopically to diagnose me.
Still hazy from anesthesia, I awoke to the news that yes, I did have endometriosis, and my uterus had been attached to my bowel by the rogue uterine tissue.
Multiple surgeries are par for the course for many women with endometriosis. Annie Anatalek, of Uniontown endured 13 operations between the ages of 15 and 23 years.
“I was fortunate and diagnosed early because of my Mom [also] having endometriosis,” said Anatalek. She dealt with severe menstrual pain from the age of 11. “I went on the pill around 13 because my periods were awful. At 14, I started to be in a lot of pain and had my appendix removed. After that I continued to be in a lot of pain. Right after I turned 15, I was diagnosed with endometriosis via laparoscopy.”
She had more surgeries to ablate (or burn off) the tissue, but it didn’t help. “I was getting worse after each surgery and not getting better,” Anatalek said. “This is when I started looking for a second opinion.”
Anatalek travelled from Ohio to Atlanta to see a highly recommended specialist who uses a technique called excision to remove endometriosis tissue. Rather than burning the tissue away with ablation, excision removes it from the root and is thought to delay the return of the disease longer than ablation.
However, the majority of women’s regular gynecologists practice ablation, which often leads to repeated visits to the operating room, as Anatalek experienced. There are an estimated 55,000 gynecologists in the US and only about 100 have a track record of being skilled at excision. There is currently no certain test or licensing needed to be a “specialist” and this often leads to women having multiple operations with a doctor who is not experienced enough to do much good. I have heard of women who had over 30 operations in less than two decades.
According to Anatalek, she had “almost a surgery every semester of college.” Aside from the obvious downside to repeated operations, every surgery comes with the risk of infection, adhesions, and scar tissue. Anatalek lost her fallopian tubes after an infection set in, and although her next doctor said her endometriosis is no longer there, she still has severe pain due to scarring and nerve damage from all the surgeries.
“The nerve damage is so intense that I cannot work and I am living at home with my retired parents. I have a Bachelor of Business Administration and I can’t hold a proper job,” she said. “In fact, I have never been able to get an actual job for a career because they see these absences.”
Living with endometriosis is a full-time job for many women, one that doesn’t usually pay a cent. Endometriosis is not recognized as a disability by Social Security at this point in time. This imposes a further burden upon women who suffer with the disease and frequently miss work due to either pain or time off for surgeries.
“Over the years my endometriosis has cost me every job I ever had,” Bridget Fritz said, explaining most employers didn’t understand when she needed a sick day or three every single month. “They do not recognize this disease as anything more than ‘bad cramps’ or ‘lady problems’ that you just have to ‘man up’ about. When you have endometriosis as bad as I have it, you can think of all the career choices in the world, and if it requires showing up at a certain time or being on your feet for any period of time, you can pretty much safely discount you’ll ever be able to pursue that.”
Carrie Burdy, of Pittsburgh, often has had to use a heating pad at her desk to make it through her day at work.
“I am fortunate to work in a family business that is understanding of my disease and gives me freedom to miss work when I am not well or when I am having surgery,” said Burdy, 36. “If I wanted to change jobs, I imagine it would make me very difficult to employ.”
Besides hijacking a woman’s body, education, and career, endometriosis also meddles in women’s relationships. Family, romantic, friends – there is no boundary.
Bridget Fritz has had this problem. “My friendships have suffered a lot, I’ve become somewhat of a recluse because of how poorly I feel most of the time, and I can’t be depended on to make or keep definite plans anymore,” Fritz said. “I’ve had falling outs with friends over having no choice but to cancel plans at the last minute. You find that after a while, people start to distance themselves from you. You become aware through no fault of your own you’re kind of a downer, and some people just don’t get it. I think a chunk of my friends really just think this disease is just bad period cramps and they can’t see the extent of what I’m struggling to overcome.”
Carrie Burdy also has seen the effect of her disease on her marriage and her friendships. “Endo has had a huge impact on my marriage,” she said. “We can’t have children together, being intimate is difficult. It’s also had an impact on my friendships. I’ve missed out on many social functions due to not feeling well enough to attend, and I am excluded from all talk about babies and kids.”
There are medical therapies that are used to try to slow the growth and lessen the pain from endometriosis, but they aren’t great. As stated in an article in the Journal of Medicine and Life published in 2014, “Up to this point, there is no single very successful option for the treatment of endometriosis. Due to the relatively poor efficacy of hormonal therapy for endometriosis, several other experimental therapies are currently undergoing clinical trial.”
There is a wide range of drugs women can try – combined oral contraceptive pills, progesterones, IUD’s, sub-dermal hormone implant devices, hormone shots, androgenic steroids, GnRH agonists, aromatase inhibitors, just to name a couple things. These drugs all serve to suppress ovulation or menstruation or receptive-ness to estrogen, essentially creating a chemical state of pregnancy or menopause. Letrozole, and aromatase inhibitor, is used for endometriosis as well as for breast cancer, which apparently also really likes estrogen. As the Journal of Medicine and Life says, the efficacy of these methods is not high. And, as one could probably imagine, there are many side effects from these medications – loss of bone density (this affects teeth too), mood swings, depression, bone and joint pain, hair loss, loss of sex drive, weight gain, just to name a few things. Many drugs only work while the patient is on them, and some, like Lupron, are so harsh, they can only be taken for short periods of time. Some of the side effects never go away. In the endometriosis support groups online, there are several women who talk about suffering from permanent bone and joint pain after taking Lupron for 3-6 months. Early onset osteoporosis is common in women who take many of the medications.
As many other women do, Carrie Burdy ended up having a hysterectomy to try and relieve her pain. Sometimes this does “cure” women, but there is also a good chance that the endometriosis will persist, especially if there is any left behind on tissue after the surgery. So, even this is not a guarantee.
Despite being one of the most common gynecologic issues affecting women today, there is frankly not a lot known about endometriosis– how women end up with it or why or how to treat it. It’s disheartening. As I spent several days combing medical journals and government websites for background material to write this article, I was wearied by seeing the words “poorly understood” repeatedly. The most accepted theory of the mechanism of endometriosis is called “Sampson’s Theory” and is over 100 years old.
Sampson felt it was likely that women experienced “retrograde menstruation” where they bled back into their abdominal cavity, which caused implants of tissue to grow outside the uterus.
However, there is evidence that Sampson has it wrong. In an editorial in the journal of Gynecologic and Obstetric Observation, Editor-in-Chief T. M. D’Hooghe presents strong evidence that this theory is untrue and states that most post-surgical recurrences are merely due to remaining tissue that the surgeon did not find or remove.
There have also been about 10 cases of endometriosis in males who were being treated with estrogen for prostate cancer, and the hormones caused implants to grow. Cases like these indicate the endometriosis may be the result of the “skin” cells on organs being affected by hormonal factors and differentiating into uterine tissue. However, the jury is still out, and the uncertainty remains.
Along with Irritable Bowel Syndrome, Interstitial Cystitis (a disease that affects the bladder lining), and the chronic pain and fatigue, depression and anxiety are often the companions of endometriosis. The combination of hormone imbalances, pain, limitations in life, uncertainty about the future, and not being understood by others is a perfect storm for depression and anxiety. It’s very difficult to spend years trying to find a doctor who can help you or even believe you. Most of my friends with the disease cannot get pain medicine without a lot of difficulty. We are frequently treated like drug-seeking pill junkies. In the online support groups I have joined, I have seen several posts about other group members who want to or have committed suicide. It is, from what I can gather, the most common cause of death in women with endometriosis, and it’s heartbreaking and unnecessary.
As I face another surgery in the upcoming weeks, I am trying to put my mind on a positive path. I am going to have faith and hope that after this doctor operates (I found one about 2 hours away that does excision), I will get some of my life back. I have been unwell for about 4 years now and this is my second surgery since August of last year. I try not to let my health issues overtake my life, but sometimes it can’t be helped. Sometimes I forget what it’s like to not be in pain, to be honest. I wonder if it would be weird to me for it to end – good weird, though.
Before I got my diagnosis, I had heard of endometriosis but never knew what it was. I awoke from my surgery last August, one day shy of my 34th birthday, and learned that this weird disease was what I had. In the months since, as I have tried to learn more about endometriosis, it has boggled me that this illness is fairly common but remains such an enigma. I moved from feeling sorry for myself to feeling compassionate for everyone who suffers with this debilitating illness, as well as anger about the lack of support and help.
Endometriosis is a social justice issue. In the years when women are working on education, careers, and families, this disease can stop them from reaching their goals. It’s time to end the stigma of discussing periods and the tendency to minimize the pain as “normal period pain.” I truly hope to see changes in my lifetime – better research that leads to more effective diagnosis and treatment, and more understanding and empathy towards women suffering from this disease.
Bridget Fritz agrees. “Why are women being left to suffer? Why are women being told for years that it’s all in our heads?” she asked.
“I wish people in general would advocate for this disease and demand reform, demand a change in the education of doctors, demand more surgeons be trained and provided for this disease and for those surgeons to be affordable and available in every country,” Fritz said. “If you ask me, this disease has deep-seated sexism written all over it. Our society has been taught that it’s okay and normal for women to suffer through their periods and childbirth- that it’s just a part of who we are, and it’s not right. The commonly held theory about endometriosis is over 100 years old, and has since long been proven to be wrong- yet it’s still taught in medical schools to this day, and it’s largely what’s holding proper care and treatment back. It’s what our doctors are basing their ineffective treatments off of, and when they fail, they blame us.”
It was pretty, thick and longer than I had ever grown it before. In the past year, about half of it has fallen away from my scalp, into the wastebaskets, vacuum, bristles at the end of the broom. Embedded in towels and insides of socks after a tumble in the dryer.
I’m not sure why it has fallen out, exactly. At first I thought it was a hormone I was taking, but after I quit taking everything. It started to fall out again. I have heard it can be caused by hormonal imbalances.
I was a late bloomer, symptoms of endometriosis that were un-ignorable didn’t hit until age 30, and the diagnosis came 3 years later. I had the kids, I had my 20’s and a marriage and the regular life. So many younger women get diagnosed before that all happens for them, and I feel so sad about that when I think of it.
I was lucky. Luckier than many. I had my 20’s, marred only by my own stupidity and bad decisions, and not the disease.
But I started my 30’s off divorced, and going back to college, so it felt like my 20’s. Moving back into my parents’ and working toward a degree, seeing my kids on my visits with them, hoping and planning towards a future that fit me nicely. Finding my career path, getting a place to live, falling in love again, better, and smarter than I had opted to in the past. My thirties felt like my twenties and I was up for it.
But I was in pain, and feeling sick a lot, and sought the advice of varied medical professionals. And they made me nag, getting that answer wasn’t an easy thing. Finally, I convinced a gynecologist to slice me open and see what was inside of me, after all the scans has failed to definitively answer my questions.
I woke up from my operation to find I had in fact been diagnosed with endometriosis and he had removed it. I was not sure if this meant I still had it or not. I didn’t really know what it meant to have this anyway, a disease I had heard of but never really made any type of mental connection to.
About 2 months later, I realized that yes, I still had it, and the pain was still hanging around. Cut to today, after a few different types of hormone attempts to manage my pain. Too many side effects – I am an expert and having side effects, and I found most of them.
I became chubby and dark under my eyes. The hair thinning… my hair is now limp and stringy when I used to roll my eyes at how heavy and unmanageable it was. Little did I know how lucky I was. I stopped trying to meet any man in any way other than as a friend… who would ever want to take on me and my bullshit? When I did like someone, it ended up horribly. I spent most of last year bleeding, including a fucked-up and horrifying episode during an attempt to “hook up” with a guy I’d been lusting after for a while. I know I made a great impression.
It hit me that a woman in near-constant pain and often dealing with the mood swings, acne, fatigue, and loss of sexual desire brought on by the condition itself, as well as the hormone therapies, was not really a hot commodity. Well, fuck me. But not really. That’d be weird.
I miss my hair. I don’t care how petty that sounds. I fucking miss my mermaid hair, and being a wanton slut if I felt like it, without having to plan it ahead on the calendar, these hook-ups every 6 months that I enforce. I try to do this so I don’t forget what it’s like to feel sexual and attractive and desirable. Gotta make sure it is on a week during my cycle when I don’t feel like shit, or have a PMS IBS flare-up. That would hinder the attractive thing for sure.
I feel bad about having to “hook up”. I really don’t respect the idea. I believe the body is a precious commodity and it should not be squandered. I just came to understand that if I waited for love, my hymen would definitely grow back. Gotta do what you gotta do. I am not ready for my sex life to end in my thirties.
I will have that next surgery, maybe I will agree and try the hormones again, and maybe it will keep me pain-free for a while, or maybe not. It’s a roll of the dice. I miss what it felt like to envision a future with a sense of options. I am not sure how broad my choices are anymore. There is a possibility the rest of my life is spent dealing with the drama of my stupid uterus, growing like a jerk all over my other insides. I picture she means well, but just overshot her goal and totally lost sight of the other party’s needs (mine). We all know someone like this in our lives.
I will keep on truckin’ and keep thanking God or the Universe or myself, perhaps, for all the good in my life, and all the good I believe I can do. I will hang tightly on to this notion when I have the days where I struggle to find reasons to continue to live, when I am so afraid that all my life will be from here on out is pain.
Suffering. Fear. Surgeries. Alone-ness. Maybe it will be, maybe it won’t. Maybe if it is, it is not the worst fate. Definitely not.
I will get my degree and try to use my voice to illuminate some dark things with my writing, and I will cling to this idea when I wonder if I am getting a degree I will never be able to use. All I can manage is right now, and I don’t have the excess energy to fret for days that have not come.
But, Jesus. I do miss me. I was pretty, skinny, silly, flirty. My future was open, and there was a lot to look forward to. I worried about stupid shit because I didn’t have an idea yet what it was like to have actual problems.
Maybe I don’t miss that last part… I was kind of a dumbass… Here’s to personal growth.