Help for Jen's surgery for Endometriosis
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Warning: Graphic medical information ahead!
Dear family & friends,
I am writing to you today to tell you about my Endometriosis disease and why I have decided to have surgery in Bucharest, Romania on April 18, 2023.
Endometriosis has affected my life immensely over the last twelve years or more. Possibly my whole life. Current research indicates other autoimmune diseases are linked to Endometriosis, such as IBS and Graves Disease, which I have. I hold things close to my chest, and it is hard to ask for help. But I could really use helping hands to travel for surgery. Here is my story…
In 2011, after several emergency hospital visits and an ultrasound I begged a doctor for, I was given a "working" diagnosis of Endometriosis. The disease affects 1 out of 10 women. Yet, for most, it takes an average of 7-12 years for a diagnosis due to a lack of knowledge and myths with Health care professionals, including gynecologists. It is tissues, similar to the tissue that lines the uterus, that grow outside the uterus. It is most commonly found in the pelvic area but can grow anywhere in the body, including the lungs and heart. It bleeds and sheds and produces its own hormones. It can cause debilitating symptoms, including in my case, extreme pain. Although benign, it grows like Cancer. It won't stop growing unless wholly eradicated from your body. Some things may slow it down and reduce your pain, but it is a bandaid for complex cases like mine. You can have a complete hysterectomy and still have Endometriosis in other regions even after menopause. There is no way to treat it other than having it completely removed surgically by a highly skilled Endometriosis surgeon. I've heard from women who have had 10+ surgeries or had to have a colostomy bag put in at the age of 20. They never had the choice to have children, although the disease is treatable. You might not die from endo, but you can endure a lifetime of suffering. Unfortunately for myself and many others, diagnosing or finding the proper treatment with a doctor knowledgeable about the disease is complex and difficult.
Could my endo have started when I was a small child with bowel and stomach problems? Maybe it was closer to 2009 when I ended up in emergency care for unbearable pain and vomiting for 8 hours straight when no answers were given? Then it happened again, and again and again. Still no answers. If it wasn't for my relentless pursuit and advocacy for my own care, constant questions and requests for testing, I would not know I have Endometriosis. Infertility, miscarriages, chronic fatigue, Graves disease, IBS, Gallbladder removal, heavy menstrual bleeding, hip, back and neck pain, anemia, pain while exercising, sciatic nerve flares, depression, anxiety and panic disorder is what my body has endured from chronic inflammation and growing endo tissue. The worst moments were the miscarriages, knowing my body was betraying me. They were in the first trimester, and I endured much physical pain and increased emotional trauma. I wanted a choice to have another child, but I didn't have one. Knowing that my condition was treatable, but I could not access the help I needed was heartbreaking. I went into a deep depression. I started regularly having panic attacks and extreme social anxiety. My panic attacks would increase closer to and during my period because of the pain and trauma. I eventually started counseling and went on medication. It helped, but this is only one part of my journey. I'm beaten down, tired of being in pain, waiting for help that may or may not come and the utter hopelessness I have felt, especially the last few years. My family doctor and his office staff have been understanding and helpful with my requests over the years. In other settings, I have experienced medical gaslighting, dismissal red tape, excessive wait times, cruelness, horrific trauma, lack of empathy, and lack of accurate information. I'm so tired of it. I have spent countless days/hours on the phone pleading for tests, paperwork, referrals, medical records, and anything that could help me identify my condition or assistance with treatment. I have likely spent thousands of dollars on over-the-counter pain medication, supplements, nutritionists, nutrition courses, special diets, naturopaths, acupuncture, osteopaths, chiropractors, massages, physiotherapy, etc. I have missed work and meaningful moments with friends and family and stayed in bed for hours and days because of my constant, unrelenting pain. I get back up, smile and pretend everything is okay. But I'm not okay. I'm hurting and I've hurt for a long time.
A couple of years ago I started exploring options for surgery in Romania and consulted with Dr. Mitroi. After much deliberation, I decided instead to have surgery with a doctor in Halifax who specializes in fertility and had noted their previous experience with excision surgery. A large part of my decision was not wanting to spend the funds for an out-of-country surgeon; frankly, I was scared. However, this was my only option for an available surgeon in Canada. I wanted one last chance to have a child and reduce my pain. I was told the doctor had previous experience with Minimally Invasive Surgery (MIGS). In December 2022, I was diagnosed with Stage 4 Deep Infiltrating Endometriosis (DIE) and Endometrioma during the surgery. Endometriosis is categorized into 4 stages, Stage 1: Minimal to Stage 4: Severe. Most of my pelvic organs were stuck together, with blocked tubes, deep implants,endometrioma or large complex cysts on both ovaries, fibroids, multiple endo adhesions, scar tissue, adhesions to the abdominal wall,lesions and superficial disease. The doctor used some ablation that is no longer practiced by expert surgeons. After ablation, the disease often re-occurs, which mine has or was never removed. Fast forward to my ultrasound in June 2022 and it is showing multiple complex cysts on my ovaries, fibroids, polyps, ovary endometrioma, ovarian lesions, hydrosalpinx, tubular cysts and lesions on the posterior cul-de-sac indicating DIE. My pain has changed and increased, including upper abdominal pain (possible endo diaphragm), bowel pain and increased nerve tension on my sciatica. The scary part is the endo could be moving closer to my bowels or already has.
Options for surgeons across Canada are limited. Surgeons who are experts on excision for deeply infiltrating Endometriosis and sciatic nerve endometriosis are rare. So rare that there is one surgeon in Canada that I believe to be qualified. One. It is estimated that out of the 9000 patients with Endometriosis in PEI, 5000 will need surgery. Unfortunately, no endometriosis surgeon is skilled in advanced endometriosis cases in the Maritimes. Surgeries in other parts of Canada have been delayed because of COVID, and most doctors are not taking on out-of-province patients. If they do, their consultation waitlist is 1-2 years, and surgery would be even further down the road. The United States is an option with lots of expert endo surgeons, but it is too expensive.
After careful and considerable research, I am seeking arrangements to fly to Bucharest, Romania, for MIS surgery with Dr. Gabriel Mitroi at the Bucharest Endometriosis Centre. The centre is a private medical clinic. Along with Dr. Mitroi, a team of surgeons are trained available on call, such as urologists and colo-rectal surgeons. I found Dr. Mitroi in an Endo research group called Nancy's Nook & I-care, which vets endo doctors. Endo-support groups aim to educate patients and centralize medical research about the disease. There is now a dedicated support group for Canadians traveling to Romania, and the reports have been positive. In addition, the clinic has a patient advocate, physical therapist and psychologist.
Because of their superior health care, Romania has moved to the top of the list for Canadian and European women. The surgery cost is $6000-$10,000 depending on the level of complexity and length of my surgery. There is also the cost of your consultation, MRI, testing, travel and accommodations. Patients on average spend $15,000-$20,000. You can schedule surgery within 1.5-2 months. All tests and an MRI are done 1 to 3 days before surgery. A recovery time in the country is recommended for a minimum of 10 days (2 to 4 days in the hospital). They have an entire team of surgeons with a new hospital specializing in the disease, allowing for complicated surgeries. I am working out a time that works for my employer, family, and the cost of my private medical expenses. The longer I wait, the more this disease grows inside me and contributes to my suffering.
Complete excision of abnormal tissue is the Gold Standard treatment and seeks to remove Endometriosis (most often permanently) by surgically cutting out all of the disease at its roots. This method aims to restore normal anatomy and preserve organs when possible. A common misconception among doctors is that a hysterectomy is a cure, but it is not. However, recurrence rates are low when this procedure is done by surgeons skilled in identifying all forms of Endometriosis and removing Endometriosis wherever it is found. In addition, identifying and treating other causes of pelvic pain is vital for the best reduction/elimination of pelvic pain.
I am asking you, my dear friends and family, to help in any way so I can have surgery in Romania. With inflation, money is tight for many of us, so just your love and emotional support means the world to me.
Thank you for taking the time to read this. Thank you to my loving family for standing by my side. Thank you to my husband Chris for being my rock over the years. I hope by sharing my story it can help others struggling to find answers. I have a long recovery ahead of me, but I'm grateful to be taking the first step to seek the care I truly need. I am available at any time should you have questions about Endometriosis or the current care in Canada or abroad.
Love Jennifer
Additional information:
Techniques in minimally invasive surgery for advanced endometriosis
Organizer
Jennifer Harkness
Organizer
Harrington, PE