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.

columnist pic
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?”

columnist pic
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.

columnist pic
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.

Jessie Madrigal BNS Writer
My name is Jessie. I am a writer and part-time Yoga instructor living in the south of England. Since being diagnosed with endometriosis, I’m determined to be the boss of my chronic illness. You’ll find me with two sausage dogs curled up on my belly and my duvet nearby, writing about life and whatever my mind thinks up. This is my journey.
×
Jessie Madrigal BNS Writer
My name is Jessie. I am a writer and part-time Yoga instructor living in the south of England. Since being diagnosed with endometriosis, I’m determined to be the boss of my chronic illness. You’ll find me with two sausage dogs curled up on my belly and my duvet nearby, writing about life and whatever my mind thinks up. This is my journey.

6 comments

  1. Kim says:

    You may want to try abdominal massage to help loosen the adhesions without surgery. As with all treatments, find an expert who really knows how to work with scar tissue. It can hurt but I have experienced some relief from it. Best of luck!

    • Thank you Kim. A form of massage seems to be the way to go. I had never thought of this, so I am really happy I wrote about it and asked you all for your thoughts on this. It’s really helpful. Thanks so much for reading!!

  2. Kayla says:

    I have also had 2 surgeries in the last 2 years and scar tissue has been a huge problem for me. My second surgery was pretty much removing any left over endo and unsticking my organs. My ureter, ovary,and bowel was all stuck to the left side wall of my pelvis. They have all been unstuck and i had my ovary suspended so it wouldnt stick again. But not i suffer from more scar tissue. I have been seeing physio every week for months now and am getting visceral massage to help unglue everything. It has made a significant difference especially for the pain in my belly button having 4 laps through there. It has been a miracle worker for me. I would suggest visceral massage to any scar tissues warrior!

    • Thanks for sharing your story Kayla. I have never tried any sort of deep-tissue massage, but will definitively look into it. I need some sort of solution to at least ease the pain a little 🙂

  3. Catherine says:

    Yep! Unfortunately I only feel scar tissue during full penetrative sex – at least I’m guessing that it’s scar tissue since I didn’t have that kind of pain before surgery. My surgeon is pretty sure it’s scar tissue just from him prodding me during an ultrasound and me saying “yes, that really hurts.” Of course he also suggested more surgery, which I don’t have money for and, like you pointed out, could very well just cause more scar tissue. It’s frustrating AF. I wish I had a good ending to this story, but I really think my option at this point is to live with it and maybe some day find an understanding partner. Just like you pointed out, living with endo is dealing with ongoing symptoms and pain. It does help to know I’m not alone. The endo support groups and posts like this really help!

    • Thanks for reading and being so lovely Catherine! I so feel you! Been there too… and yes, it really is about managing the symptoms and not fighting or reaching for a cure. Being part of this community has helped me so much, I am glad is helping you too 🙂

Leave a Comment

Your email address will not be published. Required fields are marked *