Endometriosis: Insurance won't recognize & JoBeth & others needs Help!

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Has anyone ever heard of endometriosis? It's a terrible disease that affects 1 in 20 women that spreads like inside the body. Insurance companies don't recognize the removal of this painful terrible disease as medically necessary. Women every where and women we all know are suffering from this disease and insurance companies leave these women to suffer all the time. We need to raise awareness about this awful disease that gets down played just because it rarely results in death. Women are forced to try and cope with the everyday hassels of life in agonizing debilitating pain that makes just getting out of bed most days an unsurmountable chore nevermind work or raise a family with it. We need to speak up and petition or lobby or something to help these forgotten women fight the insurance companies and give them the care that they need and deserve. All other diseases are treated with the best care possible. Why is this thought any less of. Drug addicts can get free care for something they've brought on themselves and have almost no hope of recovery. But these women who just want to live pain free and would never need care again for their disease after the proper procedure is done get denied. What kind of flawed health Care is this. This disease acts like a cancer and spreads and attaches to other parts of the body and cause sever health complications and that's not to mention the excruciating pain that coincideds with it. I've personally dubbed it cancers cousin as it acts just like cancer it's just not mutated cells. It's normal cells in abnormal places. I know this is a long write up but I am scared boyfriend. I'm afraid my girlfriend won't get the care she needs. I'm afraid women every where will b subjected to such unfair practices and be robbed of there quality of life while some suit writes on a paper that there pain is in there heads or the just need to suck it up and thete proper treatment isn't medically necessary. This is an atrocity to women every where and insurance companies everywhere turn there backs on our women in need. Please help and spread endometriosis awareness please these women don't deserve to fight this hard for a pain free life when it's so easy to fix if proper treatment were more tangible! Sincerely, Concerned Boyfriend,. Lucas Jacobsen 

A statement from JoBeth: 

When I first heard the word endometriosis I was curled up in a doctor’s office in so much pain I could barely move. This was my third year of college and I was on the verge of dropping out because of this disease. I had collapsed in my drawing class the week before and realized that my symptoms were not “normal” as I had been told all my life by doctors. The doctor had found a mass on my left and right ovaries and believed I had endometriosis. This was confirmed with a laparoscopy biopsy in December 2014. I was so relieved to hear that the pelvic, back and abdominal pain, nausea, fatigue, bloating, and other symptoms I had experienced since I was 12 were not normal.

Fast forward two years I am now graduated, but on the verge of being unable to work and can’t function normally due to the pain and the other symptoms caused my endometriosis. The disease has continued to progress and I believe it has spread to my bowels, bladder, intestines, and stomach due to my symptoms and where the pain is located. It is already growing in my abdominal cavity, uterus, and ovaries as a recent ultrasound has shown. I have since learned that excision by laparoscopy can bring relief and that the lesions only recur in 20% percent of patients. There is a catch however. There are only a handful of surgeons in the US who are skilled enough to properly remove this disease from my abdomen and surrounding organs. There is also a good chance I could need a bowel resection due to this disease. Insurance doesn’t cover any part of the procedure because they consider it an elective surgery and it falls in the same category as things like plastic surgery. In other words the insurance companies do not see endometriosis removal as medically necessary even though it causes me excruciating pain and other awful symptoms every day.

Endometrioses is uterine tissue that grows in the wrong place. It has been found everywhere in the body, including the bowels, lungs, bladder, intestines, stomach, appendix, and even the brain! This tissue produces its own hormones and hemorrhages whenever it wants causing permanent internal bleeding, scar tissue, inflammation, and severe pain. There is no cure for this disease, but proper excision surgery has shown to significantly decrease symptoms and pain. And right now on most days my pain is so bad I cannot walk, drive, work, etc. I’m only 25 years old and I have no quality of life. I had never even had a relationship because I thought no one would ever want to be with me because of my disease. That all changed February of 2017 when I met my significant other and best friend who is the most amazing, caring, and wonderful person I have ever known. He showed me that I could still be loved even with a disease that prevents me from having a normal life. I was even ready to give up, but he found a specialist in Maine at the New England Center for Endometriosis who can treat me properly. He is currently trying to move heaven and earth to get me there, but even with our combined income it would take 30 years or more to save enough. I am also only able to work part time because of my symptoms and I have massive student loan debt left from college and my savings has been wiped out by doctor’s appointments and failed treatments.

I have been in pain since I was 12 years old and I’m more than ready to get my life back!! I just want to be happy and be able to live a normal, mostly pain free life like so many others my age and to enjoy things like traveling, getting married, buying a house, and someday running an art studio. This disease has kept me from doing all the things I love: hiking, swimming, spending time with friends/family, photography, and making art which is what I love to do most.

 



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