For my second blog I thought it might be important to share some of the resources I found that made it possible for me to start healing on my own. I have been fortunate to patronize the offices of many fine physicians in both traditional and alternative medicine practices. I believe traditional medical providers have their hands tied by insurance mandates and regulatory practices. This is why I have had most of my success through alternative medicine. Health savings accounts allowed me to pursue my diagnosis and treatment without jumping through all the hoops imposed by insurance’s bureaucratic red tape.
After my second abdominal surgery to remove necrotic tissue (left over from an abscess that developed after my hysterectomy), I was baffled by delays in recovery and chronic pain. It seemed like everything was getting worse! I couldn’t sit for too long without discomfort and numbness and I frequently had to alleviate the pain by laying on my back or side. Still the pain persisted in my hips and back, causing an aching sensation. I had occasional bouts of blood in my urine which led me to believe that something had gone wrong with the surgery. My “ah-ha” moment was stumbling across a book in Barnes and Noble which was discouraging to say the least but confirmed to me that I needed a pelvic floor evaluation. My ob-gyn concurred and I was referred to a pelvic floor physical therapist. Once I did have my initial evaluation, it was confirmed that I had pelvic floor dysfunction.
So in case you’re wondering what exactly is pelvic floor dysfunction, here’s my description in a nutshell. The muscles comprising the pelvic floor essentially contract to strangle or entrap the nerves in the abdominal and pelvic region. Another commonly used term is pudendal nerve entrapment.
There are many reasons that you may be subconsciously contracting muscles in your lower abdomen, but the end result is a perpetual state of contraction that over the years worsens to the point that dedicated intervention is needed to reverse this “fight or flight” protective response. I’ll delve into the pelvic floor dysfunction for another blog but don’t worry, I’m not going to leave you hanging. If you want to start addressing the pelvic floor dysfunction now, look for posts related to resistance stretching techniques such as kihara or dynamic contraction technique. While yoga and other relaxation therapies may ease the pain somewhat, these regimens may be too “passive” and only provide temporary relief. Your muscles have to be retrained and “pulled apart” to undo the damage. Not only that, your fascia is also involved and proper resistance stretching will help alleviate traveling pain, were you essentially move the tension to another part of the body.
Anyway, I don’t want to delve into it too much for now. Basically, it’s important to understand that your body is under attack, involving the bladder and the muscles and nerves in the pelvic floor. I’ll help you start working on healing your bladder pain. It can be hard to distinguish between the bladder pain and the pain from the pelvic floor dysfunction, but more than likely it is both. That may seem discouraging as both conditions are debilitating in and of themselves and having two can seem daunting.
As I mentioned before, it was the pelvic floor dysfunction diagnosis that I received first and began pursuing treatment with a pelvic floor physical therapist. After going through a few treatments with her and learning more about my diagnosis, I began to feel there was some hope in getting better. Sometimes just even having more information can make something seem less scary. While going to the PT, she encouraged me to see a urogyn. I had inquired of my urologist before about getting a referral to a urogyn clinic but he didn’t think it was necessary since I wasn’t experiencing any bladder leakage. This is a common misconception that pelvic floor conditions only result in weak pelvic floor muscles that can cause leaks. My urologist failed to take into account that I was presenting with symptoms that were the opposite such as not completely voiding my bladder when I went to the bathroom. On the advice of my PT, I pursued the urogyn appointment, where once again I had a standard urinalysis that did not show infection in my urine, but traces of blood were evident. The pelvic floor dysfunction was confirmed and another cystoscopy was recommended. I had already had several through the course of my condition due to the repeated blood in the urine and the history of kidney stones.
Once the cystoscopy was completed and it was confirmed that there were no bladder malignancies or cancer, I was diagnosed with interstitial cystitis which in my case was a diagnosis by exclusion.
I worked with my PT who was very knowledgeable about IC and addressed as much as I could by controlling my diet. I first followed a bladder friendly diet which basically was to avoid foods which caused bladder irritation. Foods on the “no” list were citrus fruits, caffeine, and acidic foods. I focused on calming my bladder. I still continued to experience breakthrough inflammation, bleeding and bladder pain. Deciding I needed to do something more, I found many blogs online where people with my condition had resorted to the autoimmune paleo protocol diet. I adhered to an even stricter version which was low FODMAP. Even with low FODMAP, though, I still needed to eliminate items on the list that would increase bladder pain so I frequently cross-referenced the two lists to come up with the best combination. Needless to say, the list of what I could eat was reduced to about 20 foods. As I often told people, grocery shopping became much easier! I didn’t need to make a list before going to the store. The whole focus of the diet is to reduce inflammation.
I still wasn’t satisfied that I had completely solved the problem. It seemed bizarre to me that all of a sudden, out of the blue, my body was attacking itself. I knew everything traced back to a really aggressive UTI I had during Thanksgiving. During this UTI, I actually saw bits of bladder lining in my urine. Once I had supposedly “cleared” the UTI, I still felt like I had one anyway. I made so many trips to walk-in clinics almost hoping that they would find an infection because I thought that would end my nightmare. All of this led me to pursue so many doctors. I was ready to accept the first “problem” that they found as the possible cause of my pain, hence, the discovery of the complex ovarian cyst that resulted in the hysterectomy and was the start of this internet detective medical mystery research. I eventually found the website Live UTI Free which I encourage you to peruse and read as much as you can. It is here that I learned about biofilm infections, DNA sequencing for urology, and Ruth Kriz, a nurse practitioner with IC who has given others like me and you the hope that we will get better.
Once I came to understand that it was an embedded or biofilm infection, I googled the hell out of it. One of my biggest finds that enabled me to start treating myself (until I could find a provider capable of treating me) was coming across a PDF that I am including as a download below. I have yet to find links to the groups listed on the PDF for occult biofilm bladder/embedded biofilm bladder infection. Anyway, this one PDF is something I constantly refer back to when I am having a flare or uncertain about supplements to incorporate into my regime. I have been on the supplement protocols for over a year now. I have had a lot of progress. My alternative medicine practitioner is aware of how I am treating with the biofilm protocols and supplements. My last labs showed improved progress. It is a journey of persistence. My advice to you is to read the file and follow the guidance set forth to first kill the bacteria and then destroy the biofilms. As indicated in the article, I worked on getting my bacterial levels down before introducing any biofilm busters. Manage your expectations and remain diligent. Be sure to stick to a diet that does not feed the bacteria. Keep your carbs at a minimum and avoid irritants. Good luck! I will provide some tips on other supplements and new things I am constantly learning. You’ve got this!
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