March is Endometriosis Awareness Month. I received my diagnosis in April of 2004. The diagnosis and an ill-fated treatment turned my world upside down. My hope is that by using Sheryl’s March linkup as a way to share more about my struggle, people will understand just how awful this misunderstood illness is and why it needs to be taken seriously.
See the links at the end of this post to join Sheryl’s linkup and to read the contributions of other wonderful bloggers.
Disclaimer: I am NOT a medical professional. Do not use my personal experiences as a replacement for medical advice. This blog post contains affiliate links. I may earn a small commission to fund my coffee drinking habit if you use these links to make a purchase. You will not be charged extra, and you’ll keep me supplied in caffeine. It’s a win for everyone.
Staying Away Because of an Endometriosis Diagnosis
My endometriosis diagnosis forces me to stay away from a number of things. As you would expect, higher levels of pain dictate whether I leave the house or stay home. But there are a couple of other things I stay away from that you may not expect.
There is NO CURE for #Endometriosis
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The first is anyone who wants to cure me. There isn’t a cure for endometriosis. Excision surgery or a hysterectomy, when performed by a surgeon who is very well educated and skillful at removing endometriosis lesions and scar tissue, is still not a guarantee. Depending on the severity of the disease, a skilled surgeon may not be enough to provide the relief you need.
Finding a skilled surgeon is like hunting for a needle in a haystack. The surgeon who diagnosed me during exploratory surgery and who later performed my hysterectomy was obviously NOT skilled in this area. A skilled surgeon would not have left a large portion of endometriosis covered fallopian tubes inside their patient.
People who experience pain of this magnitude should not be afraid of going to the emergency room. Pain from endometriosis is the absolute worst pain I have ever experienced. It makes the horrific pain I felt from appendicitis feel like a bee sting! The sad part is that because the lesions and adhesions do not show up on any images, patients like myself look like a bunch of drug-seeking addicts begging for our next fix.
Emergency rooms aren’t all I stay away from, I also avoid going to my doctor for related pain. Why? Because he, along with two handfuls of other surgeons plus the heads of the gynecological and general surgery departments from my HMO, says nothing can be done. I manage the pain the best I can with natural and alternative treatments. There are months and sometimes years where I thrive. Then without notice, my life comes to a screeching halt and I fight back tears and pray I make it another day.
Doing What I Can, When I Can
I can’t predict when the mess inside of me is going to attack. When it will happen or how severe the attack will be is anyone’s guess. My current one is a doozy! This is the fourth of its kind. The only difference is that this time I am not wasting my time, energy, or money on doctors and tests that will only cause more heartache, pain, and exhaustion.
My last attack took place in 2016. It turned my world upside down and inside out. Afterward, I made a pact with my husband that we would create a life together that we can both enjoy whether I am flaring nor not. This entails having a plan B for every situation. Sometimes I am physically capable of driving, walking, cleaning, etc. Other times I require him to push me in a wheelchair and take over all household chores.
When not experiencing pain I am on the go! I would rarely leave the house while flaring if it weren’t for my pain-reducing tool kit and the assistance of my husband. As I share in my post The Mandalorian Approach to Explaining Chronic Pain, it is the way.
Being Naive About My Endometriosis Diagnosis
I was naive about my diagnosis. Too much trust was put into my doctor’s assurance that a hysterectomy would end my nightmare. Not enough questioning or research was done into the type of surgery I had agreed to or even in regard to the disease itself.
For years I beat myself up thinking about all the “what ifs”. Like, what if I had sought out a surgeon who was highly skilled in this area? What if it hadn’t taken 2 years to find a surgeon that was willing to address the pain after what we know now to be my botched hysterectomy?
I can’t change the past, but I can raise awareness of something I knew nothing about until I was diagnosed.
Targeting What Relieves Pain
Since being denied surgery in 2016 to release the hold that scar tissue has on my ribs, bowels, bladder, and abdominal walls I have had to get creative in finding relief from pain.
During my appointment with what would be the 7th and final surgeon I would speak to, I asked what then if not surgery could release the hold that scar tissue had on my bowels. His response was silence. I jokingly suggested that maybe I should ride Space Mountain at Disneyland over and over until I felt them rip. When he answered that he wouldn’t suggest that, I asked again what he would suggest. Again, I was met with silence.
Figuring I had nothing to lose I did just what I had suggested. The pain from adhesions ripping (either from my bowels or muscle, surgery would be the only way to know) was so intense that I could not stand up when exiting the ride vehicle. I had to crawl to my wheelchair. After a few weeks of rest, I was good to go for another year and a half.
Broken ribs and torn muscles threw a monkey wrench into my Disneyland therapy throughout the past 3 years. Less time on fast rides has also increased the reach and hold my adhesions have. Cannabis helps some as it reduces pain and relaxes my body. In between ripping spells, PEMF therapy is extremely helpful. Because it promotes blood circulation, too much of it when dealing with an internal injury causes more pain than I am able to handle. This requires waiting a few days or weeks before resuming treatment.
There is no fix, no way to prevent another flare, and no way to fully relieve the pain it inflicts. But I can and am doing everything I can to make life during these flares as comfortable as possible.
Weighing the Options of Never Living Without My Endometriosis Diagnosis
I have spent a lot of time weighing the options of what life with this pain means for me. My hope is that my husband outlives me. Not because I want to die first, but because I know that no one would care for me when I am flaring like he does. However, I can’t predict the future and he may very well die before I do. If that is the case, I will need to have a plan in place that allows for care when I need it, yet still, have the freedom I am used to when feeling well.
I do not write or advocate enough about endometriosis and vow to do more. Not just this month, but for as long as I live. Endometriosis is a terrifying disease that needs more research, pain relief options, and treatments. I do not say this to minimize the pain that fibromyalgia or autoimmune arthritis creates, but I honestly wish they were my only chronic illnesses. I know how to live with them. Because even though it has been 16 years since I received my endometriosis diagnosis, I still can’t figure this beast out.
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It’s great that you are comfortable to share your story. Definitely awareness is lacking round endometriosis. I see a close friend suffer everyday while they wait for the gyno surgeon and the colon surgeon to sync up their calendars to be available to her on the same day to operate together as her uterus is stuck to her colon. IF this was a man’s disease there would be a cure already.
I hope your friend finds relief soon. That pain is excruciating.
I’m horrified to read about your experiences with botched surgery and all the pain. I don’t have Endo, and I am very thankful of that. I can’t imagine having to ride an amusement park ride to get relief! It’s truly disgusting how women’s health problems are ignored and untreated!
My hysterectomy left me with some permanent damage, but nothing like your ongoing pain. I’m so sorry.
Thank you, it is awful. The only way that I see that it will improve is with imaging that can actually detect the adhesions.
Thanks for using this month’s prompts to raise awareness on endometriosis and for sharing your own experiences. The what ifs are so torturous…I think a lot of us go through that in different ways too. For me it was ‘what if’ I had gone to the hospital just 2 days earlier…my life would have been totally different. Oh well. Sending lots of love! xxx
Hugs! I really try to keep from falling down that rabbit hole, but sometimes it gets the best of me.
I saw this represented recently on the doctor show Transplant. The women went into the ER and had Endometriosis so they wouldn’t treat her pain. To which I told my spouse ‘That’s accurate for a chronic pain patient.’ Even though the patient said it was different than her usual pain and she knew her body, which of course we Do. Turned out to be a ruptured cyst (which I have had before and mark as my 10 level pain) but hers was bleeding and due to complications and the delay… they had to take out an ovary. And Endometriosis is so Undermined by doctors because it is a chronic pain women experience. It infuriates me really. Since unlike some chronic pain it can do a lot of damage. I do not have this but I am very glad you are raising awareness about it because when people talk about it what you hear is ‘bad cramps’ and that is enough to drive a person nuts.
It’s awful how poorly we are treated. With how it’s attacked and continues to attack my internal organs, I guarantee it will be the cause of my death.
At least that show represented exactly how poorly you are treated. She was completely ignored … because ‘oh just a flare up can’t do a thing for you… go home and do something for your pain’. I was like that is scary accurate. It is a dangerous condition that is stigmatized immensely.
It’s terrifyingly accurate… I’ve been on the receiving end of that conversation too many times. 🙁