Endometriosis: A Indescribable Pain Coursing Through Your Body

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One of the most common questions I get about endometriosis, is how it feels to have endo, or more specifically how does it feel during a flare up. While no amount of words or description will ever be able to fully convey the sheer pain and agony experienced by those of us whom have endometriosis, I will try my hardest to describe the pain and what life is like with endometriosis to the best of my abilities.

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Here’s a little information and facts about endometriosis before we get into the main part of this post. Endometriosis is an incurable disease in which the tissue which makes up the lining of the uterus (Womb) grows or is present on other organs throughout the body. While it is most common to be centralized on the organs within or around the lower abdomen, it can appear anywhere on the body. For many women they can have a multitude of symptoms including but not limited to; painful periods/ovulations, painful intercourse, fertility issues, hormone imbalances, yeast infections, weight fluctuations, food intolerances, thyroid imbalances, digestive issues (not Chron’s or IBS,) lower back/leg pain, PCOS, headaches/migraines, multiple hospital visits for various symptoms which rarely yield answers, bladder infections, UTIs, low magnesium (which can also lead to many other issues including sleep disorders, anxiety, mood swings, and more,) and plenty more. For many suffers of endometriosis it can take 10+ years before finding a doctor who takes you, your pain, and your symptoms seriously, which leaves many women suffering endlessly for far too long. Many times, doctors will only look at one or two of the symptoms and be unable to yield any answers for you, rather than looking at the symptoms as a whole. Or doctors will simply tell you that you’re being dramatic, that you just need a higher pain tolerance, etc. and will simply dismiss you as another hysterical weak woman (and yes, female doctors will do this just as much as males.) Or the doctors won’t even know what endometriosis is so they will misdiagnose you, never run the proper tests, which means they will never perform the laparoscopic surgery (surgery is the only definitive method to diagnose endometriosis) thus leaving you to suffer longer. The number of stories I have heard from women over the years surrounding endometriosis, their journey to their diagnosis, their recovery and more is powerful and heart-breaking. For a really great article about another woman’s journey through the endo cycle click here: https://www.huffpost.com/entry/13-endometriosis-symptoms_b_9775518?fbclid=IwAR1nImwHUNR9Z_FxVEKdzHVdhSIomBhQjhQ7cE_rM2Z7QnbH2FeqeKYRaGs . The author of that post does a brilliant job explaining many of the symptoms of endometriosis as well if not better than I can.

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So, you want to know what it feels like to have endometriosis? Well for this part I am going to talk about how it feels during a flare up, at least for me. How it feels to each woman will vary dependent upon their pain tolerance, location(s) of their endometriosis, treatments, severity, and many other factors, so please understand this is just based upon my own experiences with my endometriosis. On top of experiencing nearly every single symptom I’ve listed above, the pain is exacerbated in the days before, during, and immediately following my period, then again in the days before, during, and after ovulation, which means that for maybe 4-6 days out of the ENTIRE MONTH I am not in severely excruciating pain, although the pain from endo is generally always there, but during those few days it is more of a manageable dull throb. For many women, especially those with irregular periods they can many times be caught off guard by their periods, however that is far from the case for me.

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As for me, in the days leading up to my period, my everyday pain slowly increases from a dull throb to more relentless ache and I usually get sick (small colds, little to no energy, coughing fits, low grade fevers, dizziness, etc.) The closer to my period I get, the worse the pain gets. I’ve heard many women describe it as akin to someone taking barbed wire and wrapping it around your entire abdomen/lower back region, which is quite accurate in my opinion. For me, it is a mix between that and feeling like someone has taken molten lava/acid and poured it throughout my entire reproductive system, my abdomen, lower back, and upper legs, while there are multiple little knives stabbing me incessantly, while also having every step, every movement, every breath nearly bring or even bring you to tears. When the pain gets that bad, there is nothing that can touch that sort of pain, no amount of Tylenol (for those who can even take pain relievers such as those, which for me is not an option,) no amount of heating pads or hot baths, no amount of position changing, or anything will touch that pain. I am a HUGE proponent of CBD and its wealth of benefits due to the relief it has provided me for many of my other health problems, but even CBD mixed with arnica, as well as many other pain relievers (herbal based, as those are the only ones my body tolerates,) does nothing to quell the sheer agony ripping through my body during a flare up. This pain is both felt on the surface as well as deep within. The best and most widely use course of action for many of us, it to take whatever pain relievers we can, grab the heating pads, curl up in as comfy of a spot as we can, clutch our abdomens, shed a lot of tears, and resign ourselves to our beds until the worst of the flair up has ended. Many women wind up going to the ER in a desperate need/attempt to find some better relief, but rarely do they get any true help as most doctors send them away simply telling them it is just really bad cramps and to take some Tylenol or Midol. I don’t much trust doctors and I know how rarely they take our pain seriously, so I just sit and suffer at home, usually alone.

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To give full example of my life during a flare-up, tonight before settling down to write this post, and even during much of it I am in the thralls of a pretty brutal flare-up. I ended my period on the 18th (today is the 21) and am 5 days out from ovulation, which means of course the pain is still heightened from my period and increasing again because of being so close to ovulation. For me, ovulation is far worse than my period (however, this is not to say the pain I experience during my period is by any means not severe or excruciating.) Earlier tonight, I was laying in my bed finishing some Hallmark movie and getting ready to delve back into the latest YA Fantasy series I was reading through my Kindle app on my phone, when slowly but surely I felt the specific throb of pain which I only feel during my ovulation phase (the three to five days before, during, and the up two days after my ovulation.) Little by little I felt this dull throb slowly growing to a more noticeable ache centered around the lips/clitoral region of my vagina, this is not uncommon for me, leading up to my ovulation day. During my period the pain in more centralized internally, around my reproductive organs, rather than the pain being focused on my legs and the outer regions of my vagina I experience during my ovulation phase. However, within a matter of moments the pain which had been manageable and about normal for what I experience around this time in my cycle, exploded into a nearly blinding searing pain. At times felt like my vagina was being crushed, like someone was ripping and pulling my vagina apart while at the same time squeezing it in an invisible vice. Even that doesn’t fully portray the pain in which I was feeling in that moment, but it is as close as I can get to an accurate description. The pain was so severe that, I was brought to tears (for those who know me in real life, they know tears are not something I shed easily anymore and especially not for an extended period of time), as endless wave after endless wave of mind-numbing pain assaulted me. I tried in vain to shift positions, to remove my clothing (to no avail as the pain was too much to be able to focus on the task of taking off my clothes, which comprised of leggings and men’s boxer briefs), only to wind curled up on the floor (after falling off my bed while trying to readjust and find a comfortable spot) next to my bed bawling, in agony, and clutching my sides hoping it would end soon. After what felt like an eternity but was much closer to 30-45 minutes the pain finally became to subside, allowing me to crawl back into my bed, remove my leggings, and regain some of my composure. Even now as I write this post nearly 3 hours after the flare-up ended, that pain is an ever present and ever throbbing reminder of the fact that I have endometriosis.

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The pain right now, during the duration of this post, and since the end of that flare up has been cycling between a 4-6, whereas during the flare up the pain was very far off the charts. As the hours creep closer to my ovulation day, I can feel the pain beginning to spread further into my body, around my back, into my buttock, down my legs, filling my abdomen and more. By this time tomorrow, it will become difficult for me to walk as every step is akin to fire coursing through my lower body and with each passing hour, every time I move it will feel like daggers are shredding me up, every graze or touch especially on my buttocks and back of my upper legs will send me through the roof bringing or nearly bringing tears to my eyes from sheer pain, my feet will feel this deep relentless ache that no amount of rubbing will dull. As I said above this pain, is vastly different than the pain I experience during my period in many ways, but most noticeably is the fact that during these flare ups, the pain travels down my entire backside (including my lower back, buttocks, and upper legs,) as well as in my feet, and on the outer parts of my vagina. Usually at this point in the phase, is when the pain starts to climb to become more noticeable until finally it becomes unbearable, however typically while the pain increases each day, it doesn’t really become unbearable until the day before, the day of, and the day after ovulation. The rest of the time, it can ebb and flow between painful, super painful, and excruciating but not fully intolerable.

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Then there is the endo pain outside of a flare up, which is far less severe and far more manageable than the pain experienced during a flare up. This pain serves as a painful beacon shining light on the fact that your body has invaders within it. Even outside of my ovulation and period phase of my cycle and an endo flare up can happened at any time, which makes for not so fun outings. Before I had endometriosis, I thought, I knew what pain was, but man was I WRONG! This pain, even that experienced outside of flare-ups in unlike any pain I have known before. There is no end to it, no such thing a real relief, no cure.

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For the next post, I am going to talk more about intercourse, pleasure, and orgasms with endometriosis. I had planned to touch on it within here, but decided it would be better discussed in its own post.

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Until next time my loves,

As Always I Hope You Have A Magical Day My Beautiful Badass Unicorn Phoenix Goddesses

IMAGE CREDITS: I have no rights to these images and some of them may lead to products, however I am in no way affiliated with the companies or blogs they may lead to.

Image 1: https://www.instagram.com/p/B0jBb3dAoJV/?igshid=1k2yxrj6v0url

Image 2: https://www.google.com/amp/s/anglebaby304.wordpress.com/2013/10/10/please-understand/amp/

Image 3: https://www.google.com/search?q=endometriosis+warrior&tbm=isch&ved=2ahUKEwiOsa-iu5PkAhVVMFMKHU6gBzAQ2-cCegQIABAC&oq=endometriosis+war&gs_l=mobile-gws-wiz-img.1.1.35i39l2j0l2j0i24.3847.8364..9261…0.0..0.125.1916.9j10……0….1………33i299j0i8i30j0i30.RVP4N34OWjQ&ei=tvVcXY7-LdXgzALOwJ6AAw&bih=718&biw=412&client=ms-android-samsung-ss&prmd=ivsn&safe=off&hl=en#imgrc=sq5UY4kAP3VRuM&imgdii=LVXidfcnmyWiIM

Image 4: https://images.app.goo.gl/B44b3HHFgGqCpsep7

Image 5: https://www.theunchargeablesshop.com/products/endo-nftw-sticker)

Image 6: https://images.app.goo.gl/bqXawr8TnjNtyZnJ6

Image 7: https://www.google.com/search?q=endometriosis%20warrior&tbm=isch&hl=en&hl=en&safe=off&safe=off&tbs=rimg%3ACbKuVGOJAD91IkCsDPSn2V0wWdOoxwllWLPpLVXidfcnmyUYqQUEvc8yNTe2JayijTeqWt0NhHLiF01J9puMUtLRAH1koQpx_1d1EKhIJrAz0p9ldMFkReiYLMuoJZ7gqEgnTqMcJZViz6REXOguNwGAoDSoSCS1V4nX3J5slEcw7eEcInP7hKhIJGKkFBL3PMjURtkEx8DKKa6QqEgk3tiWsoo03qhFlulPHnvf9USoSCVrdDYRy4hdNEV2KKd-cTumEKhIJSfabjFLS0QARDM1_1mEjaNGoqEgl9ZKEKcf3dRBE0

Image 8: https://www.instagram.com/p/B1O2KDNgwkZ/?igshid=x6lih1xo25wt

Image 9: https://images.app.goo.gl/tnR1Hy2UzJ1ohxjF6

Shattering Societal Norms and Expectations

Earlier today I got to talking with a very good friend of mine about societal expectations vs reality, especially for those of us whose lives dwell somewhere on the mental health spectrum. We specifically were touching on work and sleep patterns, how society expects us to be one way, but how we are creating and living life on our own terms, in a way that not only works for us as people, but also within the confines and limitations of our mental health. Society has very strong opinions about how people should live their lives, we see it reflected every day in movies, media, posts online, within our families, and beyond.

For some they are in the mindset that having a college degree automatically sets you up for success, that somehow that degree makes you smarter, better, more reliable. However, for those of us with mental health, college may not always be the best avenue for success. Between the pressure and expenses of college, it can become very overwhelming very quickly. I am in no way knocking college nor am I denying the benefits of having a college degree, but rather saying a degree doesn’t necessarily guarantee you success. Several of my friends have various college degrees across many subjects, but few of them actually work in the fields in which they have those degrees for. Instead, they have mountains of debt, but are unable to enter their desired field due to various factors such as a lack of the necessary experience, an over saturation of prospects vs positions available, and more. Then there are those who work within their desired fields, but it is not enough to make ends meet, or they are working so much, they have little time for a life outside their jobs. I tried the college thing a few years ago, but mentally I wasn’t in the place to be dealing with the stress that comes from college. A part of me would love to go back to school, but the money required is a major hindrance for me, as I already have an exuberant amount of medical debt, as well as a lack of consistent income which I will touch on later in this post. Times are far different than when our grandparents or even our parents pursued higher education, as the cost of living and tuition have gone up significantly while the minimum wage hasn’t risen enough to account for the rise of expenses of everyday life

For others, they have the mindset if you are not working a full-time job, you are lazy, you are a plight on society, you are worthless. Yet, for those of us with health conditions, and even those without, there are a plethora of reasons for why we may not be working. For myself, and others who live with mental health and/or chronic illnesses, we are unable to work full time or even part time hours. Many of us have to rely on friends or family to survive, use programs such a SNAP/Welfare (which comes with its own strong opinions from society, we will touch on this later), or we have to start our own companies or get creative with ways to make money. I did the working full-time thing, for quite a while, I was even working 2 jobs at one point, but was still hardly able to afford my bills and worse I was putting my health in serious danger. Eventually after pushing myself so hard, after putting my health on the bottom of my list, I broke. I found myself in my mid 20s physically and emotionally broken and unable to work. I tried to apply for disability, since I live with severe mental health, but was denied more times than I could count. Despite having a lawyer and years’ worth of proof, they still kept denying me. I also applied for programs like SNAP and state insurance, but that only covered groceries and left me less than desirable options for doctors. That didn’t help me with my regular expenses like shampoo, conditioner, rent, etc. Then there were the comments and the looks you get anytime you pulled out your EBT card. People would scoff, they would call me lazy, they would say that I am abusing the system, they would tell me to just get a job like everyone else. So many more comments were made, but you get the idea. Then there are those who want to or even are able to work, but there are no jobs available for them. To which most people respond with, “Just move to an area with jobs,” yet they fail to grasp the fact that moving is expensive and it isn’t always a viable option.

Since, I stopped working in the manner in which society expects me to work, I have bounced from one work from home job/idea to another, with little to no success. I have had idea after idea for ways to create income, for businesses to start. I have even tried starting a few businesses but have once again have little to no success. You see, when for those of us who live with mental health or any chronic illness, we live life by a whole different set of rules. The never-ending struggle and battle is to find/create a job that works for us on both a monetary level, but also within the limitations our health conditions places upon us. To the outside observer, I may look flaky and unreliable, I may look flighty, I may look like I am unmotivated, or even lazy. Yet, few realize how hard I am working to create consistent income. Few take the time to understand, that each of these ideas, each of these attempts, each of these businesses are my efforts to create income. While they may fail or it may seem like I give up too quickly or easily, that is rarely the case. I have lived with my health for long enough and spent far too long getting myself to a more stable place emotionally and physically to risk my progress for a job/company that will ultimately do more harm than good. Initially the idea, may seem viable, but as time progresses, I may come to the conclusion that for one reason or another it isn’t actually as viable as I had hoped, predicted, or expected it to be.

For those of you, who wish to comment something along the lines of, “just suck it up and stick to something,” as I said above, I REFUSE to risk my well-being for money. I did that before, and it nearly cost me my life. I vowed to myself I would never do that, I would never put myself in those sorts of situations, I would never put money above my health. That, however, doesn’t mean I am giving up on creating consistent income either, as anyone who knows me, knows that I have an abundance of ideas for creating enough income to give me the financial independence I seek. I will exhaust every idea until I find one that works for me. There are also those who think, I am okay with my life like this, that I just sit on my ass all day doing nothing. Yet they do not understand how hard it can be to just get out of bed some days, they do not see the massive amounts of work I am doing on myself, on my health, on so many things. Many fail to realize just how exhausting life is with mental health, or even how much work it is to function more days. MAKE NO MISTAKE ABOUT IT, THIS IS NOT THE LIFE I ENVISIONED FOR MYSELF, NOR AM I HAPPY WITH HAVING TO RELY SO HEAVILY ON OTHERS. What people do not see is the hours spent on my computer writing, working on business ideas, researching viable work from home jobs, working on myself and my health, growing, and more. Every single day I work towards my goals, even if some days they are small steps, even if I get knocked back several steps, even if I fail at one idea, I refuse to give up.

For others they have the mindset that if you sleep all day, once again you must be lazy, yet for many of us, especially once again with mental health ailments, sleep quite frequently alludes us. For many of us, like myself nighttime is when we are most active or when many of our diseases are at their worst depending upon the day. I personally have tried just about every remedy, idea, medication, and solution out there for getting consistent sleep, but sleep still alludes me a lot of days. I am far from lazy, but insomnia has always been a massive issue for me. For years, I have tried to force myself to get on a more “regular” or “acceptable” sleep schedule, to absolutely no avail. It may work for a few weeks or even a few months, but eventually I revert back to my wonky schedule. Most nights, I was/am lucky if I get an hour of sleep, which is spread throughout the night, depending upon the day. A few months back, I decided to stop fighting my sleep schedule, to give myself permission to find a sleep pattern that works for me, society be damned. Let me tell you, that was the best decision I have ever made. While, I may be sleeping my day away according to some, I am getting real consistent and restorative sleep for the first time in my life. By allowing myself to go with the flow of what works for me I am no longer fighting sleep, I am no longer forcing it. I find myself falling asleep easier and staying asleep. This is not to say there are not days where I still struggle either, but I am getting more sleep than I have had previously. Small steps in the right direction are something I will always take. Part of this is due to discovering a new CBD which helps to manage my pain, anxiety, PTSD and other health ailments while I sleep, but part of it is also due to allowing my body to work at its own schedule. Here’s a little fact for you as well, for those of us who are considered “night owls,” this is not on accident, but rather a leftover biological response to the times of cavemen. Back during those times, we had to have someone watching the village/livestock/family 24/7 to prevent attacks from others, from predators, etc. For those of us who find we work better during the night, we never fully evolved out of that mindset, that need to be awake to protect. While my sleep schedule may not be societally acceptable it is a schedule that works for me, far better than anything I have ever tried, and for me that is more important than anything.

Far too many years of my life, far too many days, far too many nights, were wasted worrying about what others thought, were wasted trying to fit within the limiting societal expectations, molds, and boxes. I spent so much time risking my health, my life, my peace of mind, and more trying to be what everyone wanted me to be. Little by little, I started fighting against those expectations, I started breaking free of the mold, I started making myself the priority. Over time, I have started caring a whole lot less about what people think of me, what they say about me, what they expect of me, and a hell of a lot more about what works for me, about what is right for me, about putting my health and well-being first and foremost. I’ve stopped trying to justify myself, the way I live my life to others, because quite frankly, I just don’t see the need in it. I still try to educate people, but I no longer take what they say or think so personally. I think that is the most difficult thing for all of us, but especially those with invisible, chronic, or mental health ailments. There is something incredibly freeing about not caring though.

As always my Beautiful Badass Unicorn Phoenix Goddesses/Gods,

I hope you have a magical day!