EndoPain: When Does it End?
I'm f*cking sick and tired of this sh*t.
Most days, I feel I’ve surrendered to my (apparent) fate as best I can.
Miscarriages? Check!
PCOS? Check!
Infertility? Check!
Stage 4 Endometriosis? Check!
Hysterectomy? Check! Check!
I’d be lying if I didn’t say there is a deep sadness inside me, buzzing like a fluorescent lightbulb on the fritz. Where has my light gone? I can’t seem to find a way to ignite the spark that I’ve been known for.
Since I was a kid, people often said, '“Felicia’s so bubbly and bright,” or “She’s so funny and has the best laugh.” But I don’t feel like that person anymore. Has my chronic pain changed me, caused me to fade into the vastness of my disease? These days, I only feel like a babbling mess of adjectives: empty, ugly, bloated, broken, and unworthy.
It’s beginning to feel, well, never-ending.
I’m happier than ever in many ways, but this year has been filled with (so many) blood tests, specialist appointments, MRIs, X-rays, and ultrasounds, that I feel jinxed. At least that’s what I’ve recently shared with my partner.
While in the car, driving through my favorite spot between our town and Perth, Scotland - where the road thins and curves under an umbrella of the greenest trees - the words escaped my lips.
“I think I’m cursed…”
I said it, not as a question but as a statement. One I’ve thought long and hard about. So much so, that I started to take mental note of anyone who would wish harm upon me: my obsessive ex, bad acquaintances, or that one person who I don’t fully trust but can’t seem to pinpoint why. I even thought about the woman my great-grandmother spoke about. The “bruja” who (supposedly) cursed our family over the deep pain and jealousy she felt. It sounds absurd (I know) but sometimes the ridiculous of assumption feels more logical than fact.
The feeling, of being cursed, or feeling that way, comes and goes. I can usually knock some sense into myself when I’m spiraling the drain of self-pity. At least you don’t have cancer, and at least you’re alive and have a roof over your head. It could always be worse, right?
Last week, I spent over 20 minutes talking to my gynecologist over the phone. He called to discuss the “urgent” surgery I’m facing. Insistently repeating the high risks associated with removing the large masses - detected on a recent ultrasound - that are on my ovaries and those that have migrated into the space that used to house my uterus. We discussed my continued endometriosis growth, how it’s spread further and deeper, and the high risks associated with removing “things” without “damage to the bladder, bowel, intestine, or kidney.” And I felt damned, again.
High risk…
High risk.
The words won’t stop spinning in my head. I desperately want to cry but I’m unable to. I can’t speak. The words are logged in my throat, and I can only write because, with just one slip of the tongue, I would be a goner. The tears would be unbearable, and I would be a soppin’ mess of emotions unable to stop the self-indulgence inside from getting out.
I recognize my sadness, shame, and distress are lined with something else, though. It’s sharing the space with an unusual and inhospitable roommate; anger.
I feel, well, pissed off.
Okay, maybe I’m too exhausted to be pissed off. Defeated, and sick and tired of this shit is probably more accurate.
I’m tired.
I first detailed my period and endometriosis journey in a personal essay, ‘Just a Bad Period,’ shortly after my hysterectomy in 2021. My ovaries were spared then but may not survive this next operation and that terrifies me. I just turned 40 in August, and the last thing I want to do is go into immediate menopause. Like, the minute the anesthesia wears off, immediate menopause. I’m not ready. And I know in the grand scheme of things, it seems so insignificant but part of me feels like all the things my body was born to do - all the things that I could have done but couldn’t - have failed me. I have failed.
Believe me, I know how ridiculous I sound, but I can’t help but feel this way. I can’t help but feel alone with my thoughts and fears. I know I am one of many, riding this - what seems never-ending - train, but right now I can’t see outside myself. I hate that.
According to Endometriosis UK, "10% of women, worldwide, suffer from endometriosis. And “on average, it takes 8 years and 10 months from the first GP (physician) visit to get a diagnosis.” For me, it took over 20 years.
Since I was 14, when my periods first began, I suffered from excruciating cycles. I, very vividly, remember being in so much pain (every month) wrapped around the toilet, sick, writhing, and praying to just die. I could not see past the pain, it was debilitating. There were times I went to the ER, and missed school and important dates because I physically could not move. I often went through an entire box of tampons in a matter of days. And even after multiple miscarriages, my pain and concerns were dismissed, doctor after doctor, year after year. No one would listen to me, no one would examine me further, not until I was 36.
Specialists can be quite dismissive of symptoms. People often comment on how they’ve been told what they’re feeling is “quite common". That they’re “not experiencing anything someone else hasn’t had to endure,” or that the pain they’re feeling is, “just a bad period.” These types of responses have become normalized because most physicians and specialists know very little about endometriosis. There has been very little research done on the topic. There are no preventions, little is understood about the long-term burden of this disease, and there is no cure.
In 2023, a global study was conducted, using data and collaboration with the University of Oxford and 25 teams spread throughout the world. It is the largest study ever conducted on endometriosis. By using the DNA of over 60,000 women it was revealed that, yes, endometriosis can run in families (as it’s been widely suspected) but genetic factors can also determine how it develops, and why it spares some women and not others. “Researchers (also) found 42 areas across the genome that harbor variants that increase the risk of endometriosis. By linking these variants to the profiles of molecules in endometrium and blood, they identified a range of genes that were differently expressed in these tissues and therefore had a likely role in disease development.” Their findings, they hope, will be used to further develop prevention and new medical treatment plans. (Nuffield Dept. Women & Reproductive Health) However, our current reality (unfortunately) is that researchers and scientists are still nowhere near a cure but maybe in my lifetime, we will see some major movement in the field.
In my paranoid state - my, all-consuming self-loathing - I have been researching everything I can about endometriosis. Not long ago, I learned that endometriosis can grow outside the pelvic area and infiltrate all parts of the body: the lungs, eyes, and even the brain. It moves (and grows) like cancer, spreading rapidly, and changing the inner landscape of the body. And, yeah, it won’t kill you necessarily, but it can cause life-altering symptoms. It can cause irreversible damage, and it decreases one’s quality of life exponentially.
The most surprising thing I’ve learned about endometriosis is that it may be the reason for my severe allergies. I recently read an article about the potential link between Mast Cell Activation Syndrome (MCAS) and endometriosis. Researchers believe there is a strong correlation between endometriosis and increased histamine levels.
“MCAS is a relatively newly described disorder characterized by the over-activation of mast cells, immune cells that play a critical role in the body’s immune response by releasing histamine and other inflammatory mediators. In MCAS, mast cells are triggered by a variety of stimuli, including physical, environmental, and emotional stressors, leading to the release of excessive amounts of histamine and other inflammatory substances.” (Dr Steve Vasilev MD)
Is my endometriosis the reason for my other health issues? If a doctor had taken my symptoms seriously as a teen, would I have been spared severe food and environmental allergies (that started in my early twenties)? Would I be without inflammation and chronic pain? Been able to have children? Would I feel more like myself?
I can see an alternate reality - one where I wake up and feel good, can eat well, and don’t feel as though my body is constantly rejecting itself. It didn’t have to be this way. It could have been different, and this is why I’m so frustrated.
I’m usually so positive and optimistic. I’ve endured so much over the years, in so many ways. Whatever happens, however, this ends, I know I’ll figure it out. I’ll find my way. For now, I think I just need to get out my pity party, cry it out, and grieve. You know?
Thanks for letting me do that.
