Why I Don’t Believe in Permanent Remission from Endometriosis

5/4/2021

GOOD NEWS: I'm honoured to share this personal essay I wrote for The Endometriosis Foundation of America about my chronic journey with endo. After 20 years, I’ve learned that there are no built-in guarantees about ridding myself of this life-long disease. However, I do try to enjoy all the respites as long as they last. Writing this piece was like having a conversation with myself, a sort of reckoning. Please read/share if it resonates with you or someone else. Read it here.

4 Comments

Kelli Mikkelson

5/6/2021 23:40:21

I loved your article Tara and thank you for your truth and dictation of what it is like to walk through life fighting a war in your own body!
I have also had multiple surgeries. I have had a complete hysterectomy in November 2016. I have endometriosis in my nasal cavity and I have a “nose period “ (I’m currently on my nose period) where the sores from inside my nose open, bleed, scab over with adhesions and then the following month or sometimes just a few days later the nose period is back. I’m not on any hormones and do not have ovaries. Yet, my nose period makes me feel dizzy, horrible headaches, back aches ... I hurt all over!
I had surgery on my nose and the culture showed stroma cells which is endometriosis per my specialist Dr John Dulemba. I also have 2 granulomas in my right lung and granulomas (CT didn’t specify how many) in my spleen. Apparently, research states that endometriosis cannot travel to your spleen but it turns out that it can proven by a breast cancer patient that had a surgery to remove spleen because the dr thought the cancer metastasized to her spleen but it was endometriosis, study was in November 2020.
My oxygen saturation levels drop to 85-87 sometimes with stabbing lung pain and that has been going on since sept 2020. The O2 sats go back up to 90s within a few minutes. I’m have another CT next week because I haven’t had one since March 2018.

My specialist told me he recently had surgery with another girl who had a complete hysterectomy a year after I did. She had endometriosis all over her pelvic region. Dr Dulemba also thinks (and I agree with him) that I have endometriosis that has spread through my lymphatic system. Do you know how to get it out of the lymphatic system? I don’t and don’t think you can!
I decided to start living in the present moment myself because I felt that I was going through many rabbit holes leading nowhere!
All of that to say, I hear you and thank you for being you! I’m very proud to call you my endo sister. And I agree with you that you still have endometriosis regardless of your dr who thinks you are endo free!

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Tara Mandarano

is a writer, editor, and poet. Her writing has been nominated for the Best-of-the Net award, and has appeared in The Washington Post, HuffPo, Today's Parent, Los Angeles Review of Books, and Motherwell, among numerous other publications. She is also an advocate in the mental health and chronic illness communities.

Why I Don’t Believe in Permanent Remission from Endometriosis

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