Help Fund Life-Changing Endometriosis Surgeries
Donation protected
To learn more about the fund, click here: https://sites.google.com/view/oocexcisionfund/
Endometriosis occurs when tissue similar to the lining of the uterus gets deposited and begins to grow in other areas of the body.
Endometriosis has been found on every organ in the body. Endometriosis is known as the #1 cause of infertility and the average wait time to be diagnosed is 7-10 years (1).
People with endometriosis may experience painful periods, severe chronic fatigue, heavy bleeding, prolonged periods, fertility issues, nausea, vomiting, bowel issues, bladder pain, chills, hot flashes and more. It’s not uncommon to be dismissed, without a proper diagnosis and subjected to years of ineffective treatments.
The Canadian health care system had let me down throughout everything - I was denied a surgery and given no support by my provincial health care system to go out of country for surgery when I found an international private care surgeon, even though I was told that I was at risk of kidney failure.
My story went viral and I ran a successful Gofundme campaign, covering my surgery costs. Read my story here: https://www.gofundme.com/f/help-fund-my-life-changing-surgery
The work isn’t done though. There are still approximately 200 million people worldwide suffering with endometriosis every day who are exactly where I was a few months ago.
COVID-19 has had an even greater impact on surgeries. A study by Leonardi et al. states, “the pandemic will likely contribute to a reduction in quality of life secondary to a delay in diagnosis and/or the management of endometriosis owing to the temporary closure of outpatient services, (including complementary therapies), postponement of planned surgical or fertility treatments, and an eventual increase in the waitlist for services once they resume.” (2)
A study by Demetriou et al. published in December 2020 shows that out of all responders, “37.2% had procedures cancelled/postponed (surgery: 27.0%; fertility: 12.0%). These proportions were similar around the world.” (3)
With delayed surgeries, endometriosis can severely impact organs, reducing quality of life and it can also progress to more advanced stages, putting the patient at risk of infertility, breast and ovarian cancer.
Additionally, a study done in Turkey, published in August 2020 in the International Journal of Gynecology and Obstetrics found that the pandemic has led to a high increase of PTSD, anxiety and depression in endometriosis patients. “53.63% patients thought the management of their endometriosis was affected because of the pandemic.” (4)
Providing someone the ability to go out of country and have surgery in a timely manner puts their health back in their own hands, giving them back time. Time to do things they enjoy and life a full life. Time is the most valuable thing that we have, after all.
The financial strain of endometriosis is huge, with patients regularly paying out of pocket for continued treatments (pelvic floor physiotherapy, chiropractor, massage), certain medications, nutritionist or naturopathic guidance, holistic practitioners and supplements. It’s not unheard of for those with endometriosis to already be in substantial debt before a surgery from trying to manage the disease.
This entire campaign is coordinated with multiple excisions experts around the world. They don’t perform ablation/cauterization surgeries (burning or vaporizing endometriosis adhesions, leaving scar tissue behind. (5) They specialize in excision - "the resection or removal of endometriosis lesions, also known as adhesions. The aim is to cut out them completely, leaving nothing behind. It is more invasive than ablation, and requires a longer recovery time. Excision surgery is also more complex – so not every surgeon will have undergone the training required to perform it. It also tends to be more expensive. There is no guarantee that the disease will not come back, but reoccurrence rates are lower than with ablation surgery." (5)
These doctors will help me to review the final applications and narrow them down to the recipients of the fund. These are all excision experts with incredible feedback from patients. They truly care about the wellbeing of their patients and advocate on their behalf.
In creating this fund, I’m in no way saying that Canadian doctors are not skilled in excision. Canada does have skilled experts in endometriosis, as do other country’s publicly funded healthcare systems. The issue that arises in publically-funded systems is the long delay in diagnosis and treatment, leading sufferers to resort to private care in other countries. Add a pandemic on top of that, and a patient could be waiting years for an excision surgery. This fund aims to make private care more accessible, so that no matter their financial situations, recipients can receive exceptional care, the care they deserve.
By donating to this fund, you’re providing the opportunity for up to five people to gain a large portion of their lives back by going out of country for a life-changing surgery. The application process closes on June 15th, 2021 and once at least $20K CAD is raised, recipients will be notified through email. That’s when we'll start sharing their before-surgery stories, followed by their after-surgery stories a few months later here on Gofundme, on social media, and through our media partners, so you can see exactly how your dollars are actively changing someone’s life.
This fund is open to applications from anyone with endometriosis worldwide. A maximum of $20,000 Canadian dollars will be given, to be converted into the currency of the country that they go to for their surgery.
Recipients will be chosen based upon the severity of illness and the need for access to care, particularly to those who are struggling financially. They will be submitting a video or a written explanation of their current quality of life, and chosen recipients will be invited to an interview to learn more about their individual case and financial constraints to determine who receives support. The main contingency of this fund is that the number of surgeries that we give is dependant upon the amount raised. In order to give these five surgeries, we need to raise $100,000.
Your contribution to helping five people live the lives they’ve always dreamed of, and helping us make a massive impact, means so much. If you're not able to donate at this time, please consider sharing.
Please note we are not a registered charity and are not offering tax receipts. This is something we are working toward in the near future.
References
1. Endometriosis: Fast Facts (2020, November 19). Retrieved from: https://www.endofound.org/faq
2. Leonardi, M., Horne, A. W., Armour, M., Missmer, S. A., Roman, H., Rombauts, L., … & Johnson, N. P. (2020). Endometriosis and the Coronavirus (COVID-19) Pandemic: Clinical Advice and Future Considerations. Frontiers in Reproductive Health, 2, 5. https://doi.org/10.3389/frph.2020.00005
3. Demetriou, L., Cox, E., Lunde, C., Becker, C., Invitti, A., Martínez-Burgo, B., … & Zondervan, K. (2020). A commentary on the need for support with mental as well as physical health for people with endometriosis during the COVID-19 pandemic and beyond. Authorea Preprints. doi: 10.22541/au.160709131.16697113/v1
4. Yalçın Bahat, P., Kaya, C., Selçuki, N.F., Polat, İ., Usta, T. and Oral, E. (2020), The COVID‐19 pandemic and patients with endometriosis: A survey‐based study conducted in Turkey. Int J Gynecol Obstet, 151: 249-252. https://doi.org/10.1002/ijgo.13339
5. Madrigal, J. (2019, January 10) Endometriosis.Net. Retrieved from: https://endometriosis.net/clinical/excision-ablation/
Endometriosis occurs when tissue similar to the lining of the uterus gets deposited and begins to grow in other areas of the body.
Endometriosis has been found on every organ in the body. Endometriosis is known as the #1 cause of infertility and the average wait time to be diagnosed is 7-10 years (1).
People with endometriosis may experience painful periods, severe chronic fatigue, heavy bleeding, prolonged periods, fertility issues, nausea, vomiting, bowel issues, bladder pain, chills, hot flashes and more. It’s not uncommon to be dismissed, without a proper diagnosis and subjected to years of ineffective treatments.
The Canadian health care system had let me down throughout everything - I was denied a surgery and given no support by my provincial health care system to go out of country for surgery when I found an international private care surgeon, even though I was told that I was at risk of kidney failure.
My story went viral and I ran a successful Gofundme campaign, covering my surgery costs. Read my story here: https://www.gofundme.com/f/help-fund-my-life-changing-surgery
The work isn’t done though. There are still approximately 200 million people worldwide suffering with endometriosis every day who are exactly where I was a few months ago.
COVID-19 has had an even greater impact on surgeries. A study by Leonardi et al. states, “the pandemic will likely contribute to a reduction in quality of life secondary to a delay in diagnosis and/or the management of endometriosis owing to the temporary closure of outpatient services, (including complementary therapies), postponement of planned surgical or fertility treatments, and an eventual increase in the waitlist for services once they resume.” (2)
A study by Demetriou et al. published in December 2020 shows that out of all responders, “37.2% had procedures cancelled/postponed (surgery: 27.0%; fertility: 12.0%). These proportions were similar around the world.” (3)
With delayed surgeries, endometriosis can severely impact organs, reducing quality of life and it can also progress to more advanced stages, putting the patient at risk of infertility, breast and ovarian cancer.
Additionally, a study done in Turkey, published in August 2020 in the International Journal of Gynecology and Obstetrics found that the pandemic has led to a high increase of PTSD, anxiety and depression in endometriosis patients. “53.63% patients thought the management of their endometriosis was affected because of the pandemic.” (4)
Providing someone the ability to go out of country and have surgery in a timely manner puts their health back in their own hands, giving them back time. Time to do things they enjoy and life a full life. Time is the most valuable thing that we have, after all.
The financial strain of endometriosis is huge, with patients regularly paying out of pocket for continued treatments (pelvic floor physiotherapy, chiropractor, massage), certain medications, nutritionist or naturopathic guidance, holistic practitioners and supplements. It’s not unheard of for those with endometriosis to already be in substantial debt before a surgery from trying to manage the disease.
This entire campaign is coordinated with multiple excisions experts around the world. They don’t perform ablation/cauterization surgeries (burning or vaporizing endometriosis adhesions, leaving scar tissue behind. (5) They specialize in excision - "the resection or removal of endometriosis lesions, also known as adhesions. The aim is to cut out them completely, leaving nothing behind. It is more invasive than ablation, and requires a longer recovery time. Excision surgery is also more complex – so not every surgeon will have undergone the training required to perform it. It also tends to be more expensive. There is no guarantee that the disease will not come back, but reoccurrence rates are lower than with ablation surgery." (5)
These doctors will help me to review the final applications and narrow them down to the recipients of the fund. These are all excision experts with incredible feedback from patients. They truly care about the wellbeing of their patients and advocate on their behalf.
In creating this fund, I’m in no way saying that Canadian doctors are not skilled in excision. Canada does have skilled experts in endometriosis, as do other country’s publicly funded healthcare systems. The issue that arises in publically-funded systems is the long delay in diagnosis and treatment, leading sufferers to resort to private care in other countries. Add a pandemic on top of that, and a patient could be waiting years for an excision surgery. This fund aims to make private care more accessible, so that no matter their financial situations, recipients can receive exceptional care, the care they deserve.
By donating to this fund, you’re providing the opportunity for up to five people to gain a large portion of their lives back by going out of country for a life-changing surgery. The application process closes on June 15th, 2021 and once at least $20K CAD is raised, recipients will be notified through email. That’s when we'll start sharing their before-surgery stories, followed by their after-surgery stories a few months later here on Gofundme, on social media, and through our media partners, so you can see exactly how your dollars are actively changing someone’s life.
This fund is open to applications from anyone with endometriosis worldwide. A maximum of $20,000 Canadian dollars will be given, to be converted into the currency of the country that they go to for their surgery.
Recipients will be chosen based upon the severity of illness and the need for access to care, particularly to those who are struggling financially. They will be submitting a video or a written explanation of their current quality of life, and chosen recipients will be invited to an interview to learn more about their individual case and financial constraints to determine who receives support. The main contingency of this fund is that the number of surgeries that we give is dependant upon the amount raised. In order to give these five surgeries, we need to raise $100,000.
Your contribution to helping five people live the lives they’ve always dreamed of, and helping us make a massive impact, means so much. If you're not able to donate at this time, please consider sharing.
Please note we are not a registered charity and are not offering tax receipts. This is something we are working toward in the near future.
References
1. Endometriosis: Fast Facts (2020, November 19). Retrieved from: https://www.endofound.org/faq
2. Leonardi, M., Horne, A. W., Armour, M., Missmer, S. A., Roman, H., Rombauts, L., … & Johnson, N. P. (2020). Endometriosis and the Coronavirus (COVID-19) Pandemic: Clinical Advice and Future Considerations. Frontiers in Reproductive Health, 2, 5. https://doi.org/10.3389/frph.2020.00005
3. Demetriou, L., Cox, E., Lunde, C., Becker, C., Invitti, A., Martínez-Burgo, B., … & Zondervan, K. (2020). A commentary on the need for support with mental as well as physical health for people with endometriosis during the COVID-19 pandemic and beyond. Authorea Preprints. doi: 10.22541/au.160709131.16697113/v1
4. Yalçın Bahat, P., Kaya, C., Selçuki, N.F., Polat, İ., Usta, T. and Oral, E. (2020), The COVID‐19 pandemic and patients with endometriosis: A survey‐based study conducted in Turkey. Int J Gynecol Obstet, 151: 249-252. https://doi.org/10.1002/ijgo.13339
5. Madrigal, J. (2019, January 10) Endometriosis.Net. Retrieved from: https://endometriosis.net/clinical/excision-ablation/
Organizer
Christina Paruag
Organizer
Mississauga, ON
