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.
(*Images 2 & 3)
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.
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.
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.
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.
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.
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.
(Image 9 )
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.
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