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When talking about endometriosis, most people think of women of child-bearing age. And for some women, the physical pain of endometriosis does end after a hysterectomy. Unfortunately, there are women like myself that continue to suffer for the rest of their lives.
My story is not common. But if it prevents just one woman from enduring the pain I live with, it is worth telling. #Endometriosis #MyEndoStory
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Prelude To My Hysterectomy For Endometriosis
I began experiencing heavy and painful periods around the age of 16. By the age of 19, intense pain would torment the left side of my abdomen between periods every other month. It all stopped when I became pregnant at 20. After giving birth to my son, my periods were lighter and shorter than before. This continued until my second pregnancy at the age of 33.
The pain and discomfort I experienced before my first pregnancy returned with a vengeance after the birth of my daughter. By this time, I had already been diagnosed with psoriasis. And while they wouldn’t be diagnosed until 2003, psoriatic arthritis and fibromyalgia were already causing a lot of pain and disrupting my life.
Even though nothing was showing up on scans, my OGGYN didn’t mess around. After tracking it for a few months longer, he scheduled exploratory surgery. It was in surgery that he found a grapefruit-sized ovarian cyst. This beast was attached to my left fallopian tube, uterus, and bladder. If that wasn’t bad enough, the cyst was attached to and pulling those organs towards the left side of my abdominal wall. My surgeon released the fallopian tube that had also adhered to my abdominal wall and removed the cyst.
Within less than three months, the pain had returned. A hysterectomy was scheduled. Then delayed. Thanks to the emergency appendectomy I had while on a family vacation to Disneyland we took a week before the original surgery. When the time came, it was agreed that he would remove everything except my cervix. My surgeon originally wanted to leave my ovaries. But I argued that I didn’t want to take a chance of returning cysts. I wanted this to be my last surgery. *sigh* If I only knew what I was in for…..
The hysterectomy revealed endometriosis on my left fallopian tube and seven more cysts.
After Hysterectomy Endometriosis Symptoms
My excitement of living without debilitating abdominal pain was short-lived. The pain returned within a few months. The difference was no longer having a period, and the pain was no longer limited to every other month.
For two years, the pain stemmed from my left abdominal wall and pelvis. There was pulling, tugging, and ripping that would last for weeks at a time. It was impossible to predict and would drop me to my knees. My flares were spent lying in a fetal position sobbing and praying for relief.
Fighting For Endometriosis Symptom Relief
I immediately returned to my OBGYN, who said that he did his job and that whatever I was experiencing was no longer his problem. My primary doctor and I set out on a two-year mission of finding someone who could help. He would push referrals through at the speed of light whenever either of us found someone who agreed to see me.
This is when my fibromyalgia diagnosis became more than a painful chronic condition and turned into a scapegoat. Surgeons would see fibromyalgia listed on my chart without even examining me and quickly blame it for my pain. Others told me that I was imagining the pain and offered to refer me to a psychologist. Those that did order scans all agreed with the reports that nothing was wrong with me. But there was. And it was getting worse.
More Surgical Errors
Finally, physician number 21, a well-known and respected woman’s health surgeon in Phoenix, AZ, agreed to take a peek inside. By this time, I was vomiting often and experienced extreme bloating whenever I ate.
Surgery revealed that a large portion of my left fallopian tube had been left behind during my hysterectomy. There was scarring and large indentations along the left side of the abdominal wall where adhesions and endometriosis covering the fallopian tube had ripped from and embedded into over and over during those two years. My bowels were covered with endometriosis and were strangled by adhesions.
While it felt great to know I wasn’t losing my mind, the physical pain returned 3 weeks later. Yes, weeks, not months. At the same time, the hospital that this surgeon practiced out of stopped taking my insurance. I was back to square one, calling every gynecological and gastrointestinal surgeon listed in my insurance directory.
How much trauma can a body take? #MyEndoStory
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Round Three
Gynecologists all said that without my lady bits, my pain did not fall into their spectrum. GI surgeons all insisted that they did not DO adhesions or endometriosis and told me to find a gynecologist. Frustrated, I reached out to one of the world’s most famous health clinics. Thrilled that they accepted my insurance, I wrote a three-page letter explaining my case and pleading with them to put a team together to help me.
To my surprise, they agreed quickly, and before I knew it, I was going through the same tests that every other surgeon and emergency room physician had ordered. Like those of the past, nothing showed up on the scans. The only difference was that this surgeon didn’t give up after reading them.
He concluded that I had ovarian remnants embedded in my abdominal wall lining and cervix and removed both. Thinking that I was just seen by the best of the best, I looked forward to finally putting this nightmare behind me. If I only knew then what I know now, I would have continued searching for someone specializing only in endometriosis, not just women’s health or abdominal pain.
My surgery was on a Friday, and apparently, my surgeon had weekend plans. In his rush to finish quickly, he did not fully close my sutures, and I bled out my incisions for days. His assistant was horrified when I returned. I also woke from this surgery with numbness in my left thigh.
Round Four
Long story short (seriously, all the details could fill a series of books), this surgeon also used sutures that I was allergic to. Even though I had explained in detail what can and cannot be used with my body. And because he used those same sutures inside where he cut to release my cervix, I developed an infection. Another surgery was scheduled to remove the internal sutures.
Sadly, this was still not the end. The numbness in my left thigh continued. After falling and breaking my tailbone, I looked for answers outside of the famous network. The top neurologist in Scottsdale, AZ, delivered the bad news. When the other surgeon made the incision to release my cervix, he severed a set of nerves. He explained that there are two sets of nerves in that area. One that is commonly knicked and treatable and the other that is rarely injured and is untreatable if severed. Can you guess which one of mine was severed?
The Endometriosis Symptoms And Problems That Will Haunt Me Forever
The permanent nerve damage impacted my life beyond the loss of feeling and use of my left thigh. It scared the heck out of my pelvic muscles and nerves. My vagina froze and felt like it was being stabbed 24/7. Moving to California and becoming a medical marijuana patient has helped with the latter, but nothing will ever return the feeling in my thigh. PEMF therapy has quelled the nerve pain from it and reduced some of my abdominal pain.
Since my final surgery in 2008, I have had adhesions rip, pull, twist, and tear at my bowels. They continue to pull my bladder and rectum to the left side of my abdomen. Relief only comes from them ripping away from and loosening their hold of the muscle or organs. Beginning in 2017, my severely damaged abdominal muscles started tearing. In 2020 the area of injury increased, and now in 2021, I am unable to lift or bend without further damaging my abdominal muscles. A simple muscle spasm was the recent cause of several tears.
While I only had 5 surgeries related explicitly to endometriosis and adhesions, every surgeon I have seen since adds my appendectomy and 2 cesarean sections to the count. And to quote every one of them, “I refuse to perform a 9th abdominal surgery for something that will return”.
I share my story so that others will not blame themselves when things don’t turn out like they are supposed to. I know that I am not to blame. But it is hard not to think that there could have been a better outcome.
While I cannot change the past, I can express the importance of seeking a surgeon specializing in endometriosis. I will never know how much endometriosis was hiding on my bowels or other organs and left behind. But an endo specialist may have been able to find and remove it all.
I did not ask for or cause the horrific pain I live with today. Most of it is the result of surgical errors. #MyEndoStory #ChronicPainAwareness
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I share my story so other women will fight to be seen by a specialist. Performing a particular type of surgery hundreds of times does not make one a specialist. They need to know where to look because endometriosis is sneaky.
Another reason I share my story is to educate others. Outside of finding an endometriosis specialist when endo symptoms first presented themselves, I could have done nothing to prevent the agony that I am living with today. And even that would not have been a guarantee of a pain-free future. But no diet, exercise, or lifestyle change would have made a difference. And no, this pain cannot be meditated away.
Sharing Is Caring
Last but not least, I share to encourage others to share their stories. The only way for others to remotely understand what we endure is to share our experiences.
The fallout from endometriosis symptoms and several botched surgeries are the least common of my chronic issues. But it is the most painful and debilitating. And as long as it continues to torment my internal organs and muscles, it will most likely be the cause of my death.
How has endometriosis affected your life?
Check out these endometriosis resources, including a top ten list of clinics specializing in it.
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Reference: https://www.who.int/news-room/fact-sheets/detail/endometriosis