After years of being in debilitating pain and having flare ups, I was finally diagnosed with endometriosis this year. Endometriosis is when tissue that normally lines the uterus grows outside of the uterus. It can grow outside into your pelvic area and into any organ, ligament or nerve that it wants to in your body. This then can cause diseases of organs and chronic, debilitating pain. I have suffered in this pain since I was 11 years old. I have sense seen numerous trips to the er and different doctors who told me each time nothing was wrong with me. But something has always really been wrong and I knew it. Not only do I suffer in severe pain, I’ve had constant nausea and vomiting some days, I some brain fog some days, I now suffer weight gain, I’ve had intermittent rectal spasms and pain that can last anywhere from seconds to minutes that make me drop to my knees, I go back and forth from constipation to diarrhea (and it always hurts), I get cysts that’s are severely painful sometimes, chronic fatigue, and easily fatigued (I could nap all the time, even after the smallest tasks), chronic bloating that is uncomfortable, dizziness, and severe migraines (I’m sure there are more of my health issues that are linked to this disease that I just don’t know yet until I see the specialist for surgery). Ive has to see 5-6 different GI doctors to rule out GI and have a couple surgeries and scopes to rule out GI as my old obgyn always told my “it’s GI, nothing on my end”. They thought they then figured out the issue. I then suffered more frequent and intense flare ups after my last GI surgery and was hospitalized a few times due to flare ups, and they gave me a bunch of diagnoses and told my I was good from a GI standpoint other than the known diagnoses they had given me, I felt very lost and confused. I then had to take it upon myself to find a new OBGYN who would listen to me, as nothing had changed after two GI surgeries and scopes and diagnoses and all different medications. He did right away. We opted for surgery and I had a lap ablation of endometriosis, drainage of a big pseudocyst, cystectomy (cyst removed off my ovary), clump that was blocking my Fallopian tube taken out and sent to pathology (only confirmed endo even more). I was then put on a med that put me in a premenopausal state and was making me really sick due to the terrible side effects, and i still had some slight pelvic pain so to me not worth it if it was making my health worth due to side effects and i still had pain. So I had to stop the medicine. Since stopping it my flare ups are back FULL FORCE and I’m in severe pain. I have done my own research through endometriosis support groups and learned that ablation surgery isn’t right for endometriosis as it just burns off the endometriosis at the surface leaving the root of it still in the tissue, and it grows right back. I then learned that excision surgery is the best surgery as they go in and dig out the endometriosis so the root is not there to just regrow back. Also with excision surgery if it is on the bowel or bladder or heart or nerves, or anywheres else in the body, they can take it all off which ablation can not do. (There is no cure, this is the best option for a higher quality of life at this time).
I have missed so many family events, time out with friends, and many things a 25 year old should be enjoying in her life. I have found some specialists who will perform this surgery for me. However, they are all out of network for my insurance. I will have to travel anywheres from 4 1/2-5 hours to meet with a specialist for surgery, and post op care.
I am looking at out of pocket fees of THOUSANDS of dollars as my insurance will only cover 60% of all fees due to the specialist being out of network (there is none around where I live, this is the closest one I could find). This includes the whole surgery (surgeon, anesthesia, medications, scans, hospital stay, etc). As well, I will be looking at travel fees (5hour drive there), 5 (hour drive back), follow up appointments with a pain specialist and surgeon (once again travel fees, as there as nothing around where I live for this) as well as medication costs, and maybe even PT. I have already paid thousands and thousands of dollars over the years through testing, lab work, appointment fees, medications, scans, health insurance, emergency trips, hospital stays, ambulance trips, unpaid time off work, etc.. Any money raised above the total cost of my surgery will be used for the ongoing costs of my endometriosis treatment and travel costs.
I have been let down countless times by the healthcare system since I was 11 years old. Frombeing told nothing was wrong, or just giving me random diagnoses, or having random medications thrown at me that either did nothing or made me even more sick. This is my time to NOT be let down, this is my time to actually feel like someone is listening and treating my illness CORRECTLY.
This surgery is key to help me be able to fully function and be my fun loving self. When I am myself I am loving, full of life, happy, and always smiling. I attend medical mission trips yearly in Guatemala as a nurse to help run a medical clinic to those who are poor. And nothing brings my heart more joy. I’ve missed so much work due to this debilitating illness as when I’m in flare ups and In debilitating pain I am glued to the couch unable to move balling my eyes out with a heating pad praying god will take the disease from me. I want nothing more than to be my fully functioning self and be able to spend all the time I can with my family, friends and my patients at work and do the things a 25 year old should be able to do.
Every little penny will help and will be more than appreciated. Thank you all for reading. It’s been a rough road. But I believe some way somehow I will see a better side. ❤️
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