Challenging misconceptions about endometriosis

This (endometriosis) is what has kept me so absent from this blog. It is time I talk about it in-depth. I am creating a fundraiser to help pay for my treatment. Please read, share, and donate if you can, especially if you want to see this blog get going again. Your support will help greatly in making that happen. Thank you so much.

Endometriosis is underdiagnosed, taking an average of six+ years for diagnosis but still affecting at least 1 in 10 women. This is due to bias and misunderstanding, esp from doctors. One big misunderstanding is that full hysterectomies, (removing uterus and ovaries), are a cure for endo. There is no cure, and they often heighten the risk for heart disease and cancer later in life for young women. Having endo in itself and not completely and correctly removing it has also shown to increase risk of breast and ovarian cancer. The longer it is the body, the likelier that will happen.

Endo grows its own estrogen and can grow on and spread into anywhere in the body (even the brain), and there are actual cases of men having it. That being said, you don’t need ovaries or a uterus to have endometriosis but often that’s all GYNs choose to focus on, using birth control, full hysterectomies, and other often ineffective methods in what often results in devastating attempts at managing endo.

Another misunderstanding is that only women of a certain age can develop it, but because it grows its own estrogen, it doesn’t require estrogen from ovaries to develop or worsen.

Birth control helps some, but for many, (including me), it only worsens things. Like severity and symptoms, treatment efficacy varies, but the one that is most consistently effective (when done correctly) is excision.

Excision as a treatment for endo came out in ’91, and even now, only ~150 GYNs out of the US’s ~160,000 are properly trained in it.

A damaging number of GYNs in the US still believe endo is caused directly by the uterus and/or ovaries and that it can always be seen through ultrasounds, MRIs, etc. Both are untrue. While some endo can show up on scans, it’s uncommon that it’s seen that way, even when severe. The only sure way to diagnose it is a laparoscopy.

Main (but not all) resources: CenterforEndo.com, Endofound.org, Nancy’s Nook Endometriosis Education (fb group run by licensed retired nurse, Nancy Peterson), Endometriosis Foundation of New York, and MyEndometriosisTeam.com.

My Endo Story

This (endometriosis) is what has kept me so absent from this blog. It is time I talk about it in-depth. I am creating a fundraiser to help pay for my treatment. Please read, share, and donate if you can, especially if you want to see this blog get going again. Your support will help greatly in making that happen. Thank you so much.

I have been experiencing 10+ symptoms of endometriosis since my first period at age 11 but have had these problems constantly shrugged off. Often the responses would be “periods are just naturally painful,” “these are regular girl problems,” etc. For this, I was often put on birth control but found it unhelpful. The Ortho Evra patch worsened my acne to extremes to the point where I have scars all over my face despite being careful to never touch my face with my hands, let alone scratch or pick. I often bled on pillows at night because the acne was so bad. In 2017, I was prescribed pure estradiol to combat hot flashes and lactation, but it seemed to just worsen my problems.

 

At 17, I had a full PTSD break when repressed memories that I had long been only somewhat aware of (but were silenced by non-professionals and medical and psychiatric professionals in childhood) brutally resurfaced. Because of this, many of my symptoms have been blamed on PTSD. I am aware there are definitely crossovers, but not all of my symptoms can be only PTSD related.

 

I have begged for a laparoscopy for at least three years, as I have been concerned about endometriosis. I had a tubal ligation at 21 because I knew with my hormonal problems (and the other problems they told me I had but never quite matched up), a pregnancy would send me totally over the edge and thought naively that perhaps maybe a tubal would help manage some of these problems as well.

Continue reading “My Endo Story”

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