JoBeth's Endometriosis Surgery Fund

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 considering medical leave or 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 I saw found masses 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 severe 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 barely function normally due to the pain and the other symptoms caused my endometriosis. The disease has continued to progress and is spreading.  I have 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 internal organs which the endometriosis has fused together. If this can be done it will reduce pain and put my insides back in working order.

My insurance company is refusing to cover any part of the procedure because they consider it an elective surgery and they also believe that any doctor can treat this disease when it has been proven time and again that a specialist is needed. I have had 48 doctor appointments in 2017 alone and I have gotten nowhere because my insurance refuses to cover an endometriosis specialist.

Insurance companies do not see endometriosis removal by properly trained professionals as necessary. They believe a hysterectomy cures all a woman problems when endometriosis produces its own hormones and has been found growing in the brain!!! There is no science or scientific research behind any of the so called “cures" for endometriosis.

The following are my symptoms and why this disease needs to be recognized and talked about. If this is too much information I apologize but living with this is not a joke and it needs to be taken seriously by insurance companies and the medical community.

Fainting

Nausea

Vomiting

Dizziness

Migraines

Painful Bloating to the point where I look pregnant

Leg pain

Hip pain

Constant lower back pain

Constant severe pelvic/abdominal pain

Insomnia

Constant urinary pain, urgency, frequency, and incontinence (I'm only 25!!!)

Excruciating bowel movements

Rectal bleeding

 
Endometriosis is tissue that grows where it has no business being. 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, adhesions, lesions, 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 I have days where my pain is so bad I cannot walk, drive, work, etc. But I still force myself to do these things. 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 help me, but even with our combined incomes it could take 20 years or more to save enough.

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.

Any donation no matter how small means the world to us! It brings me closer to proper treatment and spending one less day suffering. If you cannot donate please, please, please share this everywhere! We need to make this disease mainstream so women around the world can get proper treatment!!

Thank you so much!

****Update*****
Hi Everyone, Just want to give an update about where we are in my Endometriosis battle. Luke and I managed to find a way around the disturbing healthcare system in this ridiculous country to get my surgery. However, things are far from over. My medical bills are at $48,336 right now and climbing. This alone shows how messed up things are with healthcare system, people should not have to go into debt just to get necessary medical treatment to have some quality of life.
We had a fantastic experience in Maine with the surgeon and his team. It was so amazing to have a doctor who listened and was able to find and explain the causes behind my pain. I feel empowered and validated for the first time in my life.

I am so grateful to eveyone who has donated, my significant other, family, friends, and coworkers for helping and supporting me through this mess. You all are wonderful and I love and appreciate all of you so much!!!!
We are still accepting donations through go fund me to help raise money for my insane medical bills.

Thank you!!