Stage 4 Endometriosis Surgery

Update 2/28/24

Due to all the questions, comments, and concerns, I'm going to update everyone.

Mom's surgery is being moved to the Mayo Clinic in Rochester Minnesota. This has pushed the surgery out but given more time for fund raising and will cost quite a bit less than what was needed for the Tennessee trip. Thanks to everyone that's helped so far!

Original post: Mom found out that she has stage four endometriosis months ago. It's appreciated that others want to reach out and give suggestions /compare their stories, but we remind you that every case has its own individual specifics and I can assure you that she's explored every possible avenue when it comes to what can be done and has spoken with multiple specialists around the country and the world.

With endo, tissue normally found in the uterus grows outside of the uterus where it doesn't belong. It thickens, breaks down, and bleeds at that time of the month every month. Being that it's not in the uterus, blood has nowhere to go. The inflammation is terrible so you can imagine how this affects all the organs it has spread to. It's almost impossible to see endo on imaging. Hers was not only visible but there were very large bilateral endometriomas on both ovaries and widespread elsewhere. Regular birth control has been tried. A very potent and sometimes dangerous estrogen suppressant was also used and did not work. And while a COMPLETE hysterectomy is required, it will not solve the already widespread tissue on her sciatic nerve, bladder, colon, and possibly other areas that they will not know about until they explore. It is not cancer. This does not change the fact that it is extreme and debilitating. The only option has been pain meds which we know aren't a long-term or good solution.

As for surgery, an EXCISION specialist with endospecific training is needed for stage 3 or 4, NOT ABLATION by a general GYN. Most specialist do 200 to 300 surgeries/yr or more for advanced disease. Their knowledge can save a lot of time, headache, and money without unnecessary surgeries that can cause more problems for the colon and rid the patient of the majority of deep endo rather than just surface removal.

The fact that it has spread to the sciatic nerve is the most concerning at this point even though it's severely affecting her bladder and colon. Over the last four or five months, mom was also struggling with the ability to walk during that time of the month. She'd been used to normal back pain over the years but she couldn't move or walk AT ALL and I had to take her to the ER. She could not move one leg and could only drag the other while crying in pain. It's another reason people won't see her sometimes. What we've learned about Endo and the sciatic nerve is that it can cause permanent damage if it's not dealt with ASAP.

For those commenting about what she should do financially, she can only put so much away while trying to pay her regular bills. She makes too much to get on Medicaid and doesn't qualify for affordable because of her married status even though separated currently. A minimum payment is due before she can even have the surgery otherwise it won't even happen. And this will just continue to go on. She will get worse and it will affect her ability to function in any normal way and she's not even 40 years old. 

It's not just about the surgery. The money needed is for a flight there, drive back, the cost of the stay, taking care of things at home while she's gone, and recovery time. The amount we're asking for won't even come close to what she really needs but it will be enough to cover the basics.

She continues to put a smile on her face and act normal when she's out and about but this says truly been taking over her life. Even if you can't donate, please share everywhere that you can with everyone that you can. The surgery is January 5th in Chattanooga Tennessee with one of the top Endo surgeons in the country. Please help her raise the funds before this time comes.