Interview Transcript 5.23.17
Carin Willis interviews Amy Evers, IC Patient
Carin: Can you please tell me a little about your experience with chronic pelvic pain?
Amy: I have had IC for 12 years and I have had 20 surgeries including having an Interstim device surgically inserted but nothing of the surgeries or treatments have helped with the severity of my IC symptoms and pain. I normally urinate up to 60 times a day and I am unable to sleep due to the constant need to void. IC has disrupted my life forcing me to live with extreme pain and I have lost jobs due to the pain and symptoms and I have been fighting to receive disability insurance.
Carin: I am sorry to hear that. Can you share what other integrative treatments you have tried for your IC?
Amy: I have tried diet modification (IC elimination diet).
Carin: How did you hear about using stem cell treatment for IC?
Amy: I heard about it on The IC Network and on your blog (www.icpbssupport.com) where you interviewed Dr. Elliot Lander of The Cell Surgical Network. (www.stemcellrevolution.com)
Carin: For full disclosure, Dr. Lander is one of Bridge for Pelvic Pain’s Founding Board Members. Bridge for Pelvic Pain is a nonprofit I founded 3.5 years to help people with chronic pelvic pain conditions including IC.
Can you please describe your experience of being treated with non-embryonic stem cells for your IC pain and symptoms?
Amy: The stem cell procedure costs $10,000 and is considered ‘experimental’ in the U.S. so it is not covered by insurance. I want IC patients to not be put off by the price as Dr. Lander was able to work with my budget and my town held some fundraisers to help cover the costs of my treatment and travel expenses.
I flew to California with my husband for stem cell treatments with Dr. Lander. I will provide more details about the specifics of the treatment later on in this interview. I was Dr. Lander’s 61st IC patient to be treated with stem cells since he began his stem cell treatment protocol. I had a great experience with Dr. Lander and his entire office staff.
Carin: That is wonderful that you had support of your entire community to try integrative stem cell treatments for your IC. Can you please share more details about the procedure and perhaps what surprised you about your experience that you want to share with other IC patients considering having stem cell treatments?
Amy: The first part of the process is meeting with Dr. Lander and having him answer all of my questions and being able to understand every part of the process thoroughly.
I want patients to know that for the first part of the procedure you are offered anxiety medication. I would suggest taking it if it is offered to help to relax your body. After taking the anxiety medication I was taken to the procedure room which was the same room as the exam room. The next step in the process is to get a lidocaine injection which is a little painful. After the lidocaine injections they did a mini liposuction procedure in order to remove stem cells from my abdomen.
The stem cells are taken to a lab where they are ‘prepped’. This process was about a 30 minute wait. The nurse let me know that they were able to extract about 33 billion stem cells from the harvest site. They are looking for 2 ‘types’ of stem cells ‘average’ and ‘highly concentrated’ which are bright red in color. After the 30 minute wait the prepped stem cells were injected back into my body via I.V.
Next I was given stem cells through pelvic floor injection directly int the pelvic floor in a circular motion which is done to help heal the urethra. I was told to physically move my body on the table in order to move the stem cells throughout my pelvic floor.
I want patients to know that the procedure does have a moderate amount of pain involved but it does eventually go away.
Carin: Wow! Thanks so much for walking us through the stem cell procedure. How are you feeling now that you are a few months post stem cell treatment?
Amy: I feel that the stem cell treatment along with continuing with the IC Elimination Diet is helping with my IC pain and symptoms. At this point it has decreased my day voided by 31% and overall I feel better and I have more energy.
Carin: That is wonderful news, Amy! What are some final thoughts you want to leave for other IC patients considering stem cell treatments for their IC?
Amy: Stem cell therapy should not be considered a ‘cure’ for IC, but a tool in your toolbox of integrative approaches. I would also tell patients to not give up and to keep searching for treatments that might help them. I am very grateful for Dr. Lander and his team!
Carin: Thanks again Amy for reaching out to share your experience with stem cell therapy. Part of the work that we do at Bridge for Pelvic Pain is teach that each patient is unique like a snowflake so therefore integrative treatments that are unique to each patient is key! Thanks again and we wish you continued success in treating your IC.