Living with Painful Scar Tissue

Living with Painful Scar Tissue

Have I ever mentioned how much I love dancing? I find it nearly impossible to listen to good music and not move my feet. So, when a friend got me a ticket to Brighton Pride this past weekend, I couldn’t stay home.

Kylie (the only Kylie there is) turned Brighton Pride into a gigantic singalong. I covered my face with glitter, danced with strangers, and sang every line to “Can’t Get You Out Of My Head.” After 90 minutes of pure joy, we made our way to the exits, slightly giddy. On my way out, I met a charming and rather cute Irishman. He told me I looked 26. I told him he was adorable … and that’s when I felt it. A tug from my insides. Reader, it was not love that I was feeling. It was my scar tissue.

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Kylie, at Brighton Pride. (Photo by Jessie Madrigal)

After my last surgery almost two years ago, my periods became mild and my levels of discomfort reached an all-time minimum. As months passed, however, I’d occasionally feel a sharp pain in my abdomen. Sometimes it was so painful it felt like I was about to pass out. I had ultrasounds done, but imaging tests can be insufficient with endometriosis symptoms. My specialist determined it was probably internal scar tissue, a product from my last surgery. He suggested further surgery to remove it.

Why does it hurt so much?

Like scars that form on our skin, internal scar tissue forms after trauma or surgery as a way to heal. It becomes painful when these adhesions stick tissues and organs together, limiting their mobility and proper function.

After speaking with my doctor, I wondered what the point was of risking more scar tissue. I felt I’d had enough surgery for a while (two procedures in 18 months), and decided against another. Yet every time I overexerted myself, the sharp tug would ask, “Are you sure you can ignore me?”

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Brighton uphill makes my adhesions scream. (Photo by Jessie Madrigal)

So here I am, post-Pride, still finding glitter all over my body, experiencing pain, and feeling very frustrated. I was considering signing up for some Lindy Hop lessons, but I am not sure dancing is in the cards for me. 

This is a massive blow, and pretty ironic considering what I wrote last week on not getting frustrated about my flare-ups. I didn’t know future Jess would be lamenting the loss of her ability to dance pain-free, a mere week later. 

So, what are the options?

If I decide to have surgery, there’s one big issue: My specialist has retired. This means that I’ll have to go through the grueling process of finding another endometriosis specialist to carry out the procedure. Still, a surgeon can be the best at removing adhesions, but the body will naturally respond by creating more scar tissue. It’s a true Catch-22 when all I want is a Pride rerun and a good cry.

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The Sausage Mafia, hijacking my bed, post-Pride. (Photo by Jessie Madrigal)

Apart from surgery, there are alternative treatments to deal with adhesions. But I’m weary of those since trying some painful acupuncture that didn’t really help. 

Surgery may be the only route that will provide me with definite answers and relief. Being chronically ill with endometriosis means living with symptoms that cannot be easily dismissed. I wish I could happily ignore pain instead of overthinking it and panicking in the middle of the night, convinced I have some other life-threatening disease. But that’s how my endo-life goes.

This weekend featured the reminder I could have done without. I may be period-free, but I am not pain-free.

Do you suffer from post-surgery scar tissue? What have you done about it?


Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.