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Endometriosis surgery

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It is not with pride that I ask for this help. 

I have struggles with endometriosis symptoms since I had my first period. Sometimes the pain would induce vomiting, migraines, muscle spasms in my back and bladder, and so many more often debilitating symptoms. In the past I've missed school and work and it's been a silent battle I've fought alone since I was 12. This week I flew out of state to meet with a specialist through the recommendations of Nany Peterson, world renown endometriosis advocate, and met Dr. Mosbrucker at Pacific endometriosis and pelvic surgery. After years of my symptoms being dismissed or treated with dangerous medications like lupron or general birth control in ERs and OBG offices, Dr. Mosbrucker was a miracle. However, her exam found high markers and suspicions for adenomyosis as well as endometriosis.

There are far more limitations in treating adenomyosis effectively without a hysterectomy, and most are still surgical and involve the removal of presacral nerves. 

In the end after considering all of my options, I decided it made more sense to move forward with a hysterectomy with the excision of the deeply infiltrating endometriosis and a bilateral ovarian tie down. 

It was a difficult decision, but one that will give me a life without chronic pain. 

When looking into this surgery, the cost is what anyone would expect. Very expensive. 

Living in Alaska makes access to surgeon specialists like Mosbrucker often unachievable. Even so, nationwide we are experiencing a huge gap of knowledge with OBGYNs and proper treatment of these very common and painful conditions. There is very little studied about endo in comparison to many other health conditions despite the fact that it is estimated that 1 in 10 women have it- and this is considered a low number based on the dismissal of women in pain. I went to the ER in june this year for the worse flare in my life and I was offered and NSAID for my period cramps, only I had not had my period in months at the time. 

This gap in information, the dismissal of women's healthcare, and my location will make this very difficult to pass through my insurance. 

If they decide to cover any of it, which they could easily deny, I could still pay as much as 60% of the costs out of pocket. The estimate I was given was for the surgeon fee alone at nearly $6000. I still don't have the anesthesiologist or hospital fee estimates. The recovery time for this procedure is 4-6 weeks plus many months of pelvic floor physical therapy. My job is extremely physical and I don't have the vacation or sick leave- not even close. 

I do not feel good about asking for this kind of help, but this is a desperate situation to help me get out of a life of chronic pain. Anything at all helps me move forward to getting my life back and living pain free. Thank you.

Organizer

Jaclyn Johnson
Organizer
Palmer, AK

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