Amanda Michelle Jones

Amanda Michelle Jones, Ph.D. student, has stage IV endometriosis. Endometriosis is a painful gynecological condition that directly impacts the uterus, ovaries, bowels and other aspects of the pelvic region, according to the Mayo Clinic. The tissue lining the uterus spills out. The endometriosis tissues still operate normally during menstrual cycles, causing intense pain for those affected.

Endometriosis can also cause fertility issues and have long-term health impact. Jones, a self-identified “connector of people and resources” was diagnosed with the condition after an ovarian cyst led to an emergency room stint. A subsequent surgery uncovered advanced issues, including the fusion of Jones’ colon to her uterus and her cul-de-sac, the cavity between the rectum and the uterus.

The blogger has been assertive in seeking treatment. Her initial surgeon called her stage four endometriosis the worst case she’s ever seen. Jones writes in a blog post:

There were implants all over my pelvic cavity – on all my organs except my stomach & appendix. While the doctor was able to clean me up, she could not do anything about the endometriosis on my organs or about anything that’s fused together. I also have a cyst on my uterus. She couldn’t remove that, either, not due to impossibility, but due to her own comfort level. I appreciate her not experimenting in my pelvic cavity.

Rather than losing hope, Jones enlisted the assistance of Camran Nezhat, MD., a leader in progressive fibroid and endometriosis alternative treatments. Jones, a second-year social work Ph.D. student, reached out to Dr. Nezhat through Twitter and submitted her medical records to him through email and through the hospital where she had her initial surgery.

Dr. Nezhat has agreed to perform the surgery. However, the endometriosis surgery is expensive. Some of Jones’ expenses include traveling from Chicago to California to visit Dr. Nezhat’s clinic, hotel, travel expenses and a vehicle to transport Jones from the hospital to the hotel.

She has launched a HopeMob campaign to raise $5,600 before her surgery in June. There are 14 days left to donate to Jones’ campaign. Even if you are unable to donate, Jones’ has words of advice for all women: Go to a gynecologist if you have painful periods and have your hormone levels checked.

“This means a full thyroid panel, testosterone, progesterone, estrogen, & cortisol,” she writes in an interview. “Unfortunately, most GYNs aren’t interested in doing that, which is why I went to Marcia Scoville. She specifically focuses on bioidentical hormone replacement, creating customized courses of care for each patient as an individual. It’s hard to find a BioHRT specialist who isn’t gimmicky, but it’s worth the search!”

You can donate to Jones’ campaign through HopeMob and send messages of support through Twitter.

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  • Purple Rain

    Amanda,

    I understand exactly what you’re dealing with. I too was diagnosed with Stage 4 endometriosis with frozen pelvis and severe scarring. My fallopian tubes were stuck to my uterus and my ovaries were covered with endometriomas (endo cysts). Before diagnosis, I suffered from constant cramping, even when I was not on my period. I too found out about the condition after an emergency room visit due to severe pain from a ruptured cyst. I was fortunate to have insurance that covered the laproscopic procedure and also VERY fortunate to have a doctor who was able to clean up most of it. I have since changed my diet, changed skin care products (avoiding ones with estrogenic compounds) and began taking supplements to balance my hormones. I was only 21 when diagnosed but I’m fortunate that roughly 95% of my old symptoms are gone. My surgeon told me it was one of the worst cases he’d ever seen and would have completed a full hysterectomy if I wasn’t so young at the time.

    I cannot afford to donate but I wish you the best in your journey to recovery. Recovery is possible, you just need to find the best healing method that works for you!

    -Purple

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    • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

      Thank you!

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  • MamaJ

    Thank you to everyone who has helped Amanda by either donating to her campaign, retweeting her story, expressing support and all the other kind, helpful acts. I appreciate your support of my daughter.

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  • http://gravatar.com/cocovabarbie KemaVA

    I donated… I have recently been having issues with hypothyroidism and gluten allergies. This is bad enough so I cant imagine experiencing pain in the way Amanda does.

    Yes, there are others that have endometriosis but Amanda is the one that came here and asked for help. I hope you feel better, Amanda!

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    • http://twitter.com/AmandaMichelle one name, 2 words (@AmandaMichelle)

      Thank you!

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