Hi, I'm Lena. Most of you know that I've been struggling with Endometriosis over the last several years; but many of you don't know that the situation has gotten considerably worse since my surgery in 2011. In addition to endometriosis, I have also been diagnosed with adenomyosis, pelvic SI joint dysfunction, interstitial cystitis (bladder disease), generalized bladder inflammation disease, and pelvic floor muscle dysfunction, making my pelvis a war zone. Most days the pain is excruciating enough to keep me bed-bound. I am unable to enjoy most of the social and physical activities that make up the essential pieces of life. I am sinking beneath the weight of chronic pain and near constant nausea.
After innumerable tests, consults, procedures, medications, and the gamut of western medical treatments/eastern medical treatments; my medical team has come to the conclusion that the only way that I will gain any improvement in symptoms is via a series of expensive bladder instillations, pelvic physiotherapy, and, finally, with surgery by a specialized endometriosis surgeon in New York City.
Every penny I have made working has gone into my expensive treatments and medications, none of which are covered by OHIP. I no longer have any savings-having spent it all on my medical bills. I also moved back in with my parents in order to put rent money towards my medical bills. I am reaching out for help as I feel this is my last chance at getting back my life.
Why go to the US? A Short Medical History
In December 2011, I had laproscopic excision surgery with an Endometriosis laproscopic surgeon in Toronto to remove the Endometriosis lesions, and confirm the diagnosis. Lesions were removed from several areas in my pelvis, and I was told I had a rare, more painful, type of Endometriosis. After several months recovery including treatment for a post-operative infection, I noticed that my pain was not improving. I went back to my surgeon who proceeded to try a variety of treatments and other pain specialists in an attempt to understand the nature of my additional pain. For over a year I tried everything he could think of-from painful nerve block injections; to expensive weekly acupuncture treatments; medications; and even a type of Eastern meditation and health care practice called qi-gong. After 3 pain specialists; 2 general surgeons; and countless specialists, my pain still had not improved. Unsure of what to do next, my surgeon felt there was a possibility that my Endo had spread to outside my pelvic wall and scheduled me for surgery with a general surgeon for June 2013. Upon visiting that general surgeon and being told I had a less than 30% chance of success, I decided to get a second opinion before going through with what was described as a 'difficult surgery'.
After much research, I decided to see a highly regarded US-based Endometriosis specialist for a second opinion. In May 2013 I saw Dr. Iris Orbuch for the first time. After a thorough examination, the likes of which I had never had before in all the years and all the doctors, she determined that I had developed Interstitial Cystitis, as well as Pelvic Floor Muscle Dysfunction. Both diseases cause pelvic pain that mimic Endometriosis. She also felt there was a chance that I did have some residual Endometriosis left, but strongly advised against my scheduled surgery. She also believed that there were a number of adhesions (scar tissue) caused both by the Endometriosis and by my previous surgery. She made it clear how crucial it was for me to see a urologist that specializes in IC; start pelvic physiotherapy; and find a new Endo specialist to monitor my progress (by this point my Toronto endo specialist had gone on medical leave).
Between May 2013 and September 2014 I was referred to and rejected by no fewer than 4 IC-specialized urologists and 4 Endo-specialized gynaecologists. A few specialists told me they were not taking on new patients; while others commented that my case was 'too complicated'. Meanwhile my pain was getting worse as I continued to receive no treatment for my myriad of conditions.
I felt hopeless. My family urged me to contact Dr. Orbuch and once again seek her advice.
I called Dr. Orbuch in New York City in the early spring, and she again reiterated the necessity of receiving treatment, as all of my diseases are progressive-and getting worse over time. At her recommendation, I sought adhesion and Pelvic Floor Muscle Dysfunction (PFD) treatment at a clinic in Miami, Florida. After an intensive, week-long, treatment therapy at the clinic I was told my PFD was an extremely bad case; and my adhesions were pulling my entire abdomen and pelvis to the right. The $10,000 I spent on the treatment helped to identify the problems, but did little to alleviate the pain.
So...in September 2014, after the multiple rejections by Canadian doctors, and knowing that my diseases were progressively getting worse, I knew I needed to act. I once again made my way down to New York City and Dr. Orbuch. She had also made an appointment for me with a well-known urologist, the first urologist I was to see, a year and a half AFTER my initial diagnosis of bladder disease. After a number of diagnostic tests and of examinations; the urologist, Dr. Stein confirmed my bladder diseases (IC and generalized bladder inflammation) and said I was in need of urgent intervention. He gave me a bladder instillation-which is when a cocktail of medications is introduced into your bladder via a catheter. He was very clear that I needed to have this instillation once a week, for a minimum of 6-8 weeks.
Dr. Orbuch's exam showed a large Endo lesion on my left uterosacral ligament, pulling the left side of my pelvis downwards. She also feels that there is Endo on or in my bowel, and possibly elsewhere in my pelvic cavity.
Surgery to remove this large lesion is necessary, and timing is critical. The untreated endo and pelvic inflammation has caused nerve damage-much of which cannot be reversed. The longer I wait, the more damage is done.
I need to have the weekly bladder instillations (OHIP covers only the practioner, not the expensive medication); as well as twice weekly pelvic physiotherapy (not covered by OHIP) all PRIOR to my surgery in the US in February 2015.
I CANNOT wait any longer as my disease will progress further and further, and I'm scared to think of what could come next. I also believe that Dr. Orbuch's extensive experience with my type of case makes her my best chance for success. I will never be 100% better; it's too late for that, but I want to have the best outcome possible. This disease has already taken years from me, I refuse to let it have one more.
I need these new treatments. I need this surgery.
I need your help.
Thank you, from the bottom of my heart, for your help.
- Maren Duesberg
- From Close Friend
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