Help Becca Receive Endometriosis Surgery

A Letter Becca wrote Jan 11, 2023:

Most of you know I have been undergoing chronic health issues for most of my life. I have a litany of diagnosis that include spina bifida, scoliosis, fibromyalgia and endometriosis. I try to be open about my health issues, because they are invisible to most.

I am no stranger to pain. I have spent every single day of the last 20 years of my life in unending pain, originating in my lumbar spine upon fracturing my vertebrae at age 10. I have grown accustomed to a level of pain most people would not be able to imagine.

My “bad back” has become second nature to me. I’ve learned to cope using mindfulness and tailor my lifestyle around my limitations and strengths - I have NOT learned how to cope with the AGONY that Endometriosis has unsparingly served me over the years. It’s been said by people who have experienced both that Endo can be more painful than childbirth as well as shingles.

10 years into merciless periods, ovarian cysts, and migraines things changed dramatically with a “pop” in my abdomen one evening. From then my “monthly” symptoms of endometriosis changed from pelvic/abdominal pain 10 days out of the month to 30/30. That was seven years ago.

I’ve since had two operations (ablation of lesions in my body cavity) - neither were successful. Ablation is a type of burning. I also had fallopian tubes removed due to their disfigured appearance. I was worried it would turn into cancer. And I was worried it was the cause of some of my pain.

My surgeon from 2018 & 2019 was happy to discharge me from his case entirely even with my increasing pain and disabling limitations. He told me to get up around the house more. I’ve since consulted with numerous NL gynaecologists over the years that have kept me on constant hormonal suppression medications (that lower my bone density and cause strokes) and REFUSE to do surgery in my case to properly remove (excise) lesions and adhesions known to be within my body and continue to grow and spread.

Seeing those bleeding lesions in the surgical photos (not once but twice) - and being told Endo lesions bleed just like the inner lining of the uterus (monthly) and the free flowing blood sticks to the surrounding walls and organs like bubble gum. It made SO much sense.

I would have photographic proof of these lesions if my patient files did not get lost 2 years ago. I’m still savage about that and still fighting it tooth and nail. But I remember seeing them with my own eyes and I have the written operative reports and that is clear that this pain is NOT IN MY HEAD.

I continue to advocate for myself.

Those lesions make it feel like it’s raining blood and other violent storms inside of me every day of my life. The reason I haven’t been able to jump, twist, bend, ride a bike, lift a toddler, enjoy a walk, or more recently, fulfill any work requirements.

Since that time in 2019 it’s been more and more limiting and more and more painful with less and less efforts on battling the endometriosis and more emphasize on me “handling it.” Pushing me to have children, psychiatric assessments, anti-depressants.

I cannot handle it anymore. I reached my breaking point last month. My mental health is in constant crisis mode because let’s be real: who on Earth would be able to have great mental health living like this?

I no longer have a NL gyne as the last did not “believe my pain was from endometriosis” as of Dec 2023. I do have a referral sent to another local gyne but it is a 2.5 year wait.

I had also been waiting years to see an excision specialist in Winnipeg. I had been scheduled with them 3 times in the last year, but received no call each time. In another attempt to reschedule this consult, the administration finally tells me today that because my referral was sent by a family physician and not a local gynaecologist - the doctor was unable to virtually treat a patient in another province. [I had agreed to pay in full previously, being quite clear from the start that I did not have NL support through MCP and had asked for the amount so I could send it immediately.] knowing I need an excision specialist and knowing there are only a few hundred in the country.

After years of asking every gynaecologist I could - there is still no written letter of support for out of province care or treatment in regard to my Endometriosis.

While I gave our medical system a good run I decided can no longer quietly rot away in Labrador.

I will continue to advocate for myself.

Simultaneously, I had a back up if my Manitoba plans fell through. You could say I’m used to disappointment. I had finally reached out by email to scheduled a consult with Dr. Mitroi in Bucharest, Romania. He is a world renowned excision surgeon and endometriosis specialist who opened a centre with several different speciality surgeons and physicians to treat complex individuals like myself. Feel free to check out Canadians with Endometriosis Travelling to Bucharest FB group if you’re possibly in the same shitty boat as me.

Dr. Mitroi himself answered me within 3 hours to ask for more information and within 24 hours, had offered new insights about my condition and offered treatment at his centre. He offered me this information all without receiving a dime from me yet.

The consult is scheduled for the end of January and I’ve since paid 100 euro for that consult.

The travel & accommodations, tests and the operation itself will cost me upwards of $20,000 CAD. I should know the low - high estimations after my consult. This will hopefully be the last surgery for me for awhile, although there is no cure for endometriosis, only a hope for some relief.

I am looking for your support in anyway that you can offer. If that’s simply a kind word - I accept that whole heartedly.