Getting to the Bottom of Pelvic Pain

Hysterectomy, interstitial cystitis, and pelvic floor dysfunction. It seemed like some bizarre mid-evil torture trifecta. The early signs of pelvic floor dysfunction and interstitial cystitis (IC) were there before the hysterectomy but just undiagnosed. The IC was definitely latent but during post-op reared its nasty little head and decided to crash the party in a big way. I am hoping through this blog to detail my journey of fear, frustration, research and hope so that maybe my efforts will help even just one person understand the mystery behind some of these conditions and the path to healing. I’m not a medical expert but I firmly believe we have lost control of managing our own health and that the present health care system has multiple barriers that inhibit patients from even getting a real diagnosis. Are providers’ hands tied because of insurance mandates? Or have patients been dissected into body parts based on specialty practices where essentially there is no coming together or meeting of the minds to really and truly solve the patients’ problems? Do doctors only want “easy” cases with clear cut treatment protocols? And who out there is really paying attention to relevant research and coming up with solutions outside of the box? Has the electronic medical record halted real doctor-patient interactions? With limited appointment slot times, is it simply just a challenge to navigate the EHR and answer the mandated questions before really delving into the patient’s presenting problem?

First, I would like to say that I have met many doctors who have been great advocates for patients like me who have been a challenge to diagnose. I have learned that it is much better to have a physician/provider say they don’t know but are really invested in trying to figure it out versus a provider who simply says the tests are negative and let that be the conclusion of that mystery. Or else they just refer you to another specialist and never really circle back to you the patient.

In retrospect, my condition may have begun about 4 to 5 years ago with the first appearance of blood in my urine. Multiple urinalysis tests failed to identify any infections. At one point, I was placed on antibiotics as a precaution, but it was a typical two week dosage. My symptoms subsided for several months before appearing again. I believe the reason any flares weren’t prolonged was because I was following a strict diet for recurrent systemic candida (another red flag!). Eventually I ended up in the ER on the evening of January 1, 2016. I’m not a fan of going to the ER but unrelenting abdominal and back pain had forced me into the fetal position on the bathroom floor with little hope of being relieved of the pain anytime soon. When I presented to the ER, they suspected kidney stones and performed a CT scan, blood work and urinalysis. Although no kidney stones were found in my urine, the CT scan revealed an inflamed trail in the urethra down which it was assumed a stone had passed as well as a kidney stone still present in one of my kidneys. The passing of a kidney stone seemed a somewhat plausible explanation and my pain had completely subsided the following day. It also made sense since it was just a few weeks before when I had experienced horrible pain and blood in my urine, with the urinalysis being negative for infection. After my ER visit, I figured that perhaps I had passed a kidney stone on this occasion, too.

Looking back, I am certain that these instances of searing pain were the result of my unlined bladder being exposed to some particularly acidic food. After doing tons of research on interstitial cystitis, this makes sense to me. According to some of the research I found, interstitial cystitis is really an imbedded biofilm infection that is undetected by standard urinalysis tests. The reason this type of UTI goes undetected is because the bacteria is coated in a biofilm, allowing it to almost “ hide” and continue to do damage to the bladder while it goes untreated. The body tries to expel the infection by shedding the bladder lining. So ultimately if you’re not treating the undiagnosed infection, your body will try to defend itself by shedding the bladder lining and never really healing. On my end, I constantly felt abdominal pain with bouts of horrible flares with visible blood in the urine. Every time I went to the doctor or ER for these episodes with or without visible blood in the urine, all the urinalysis was able to detect was blood in the urine and never an infection. Hence the doctors were always perplexed and I eventually ended up with the IC diagnosis by exclusion. It took multiple trips to the primary care, gyn, urologist and uro-gyn to get that diagnosis. I can’t help but look back at all the appointments and procedures that were a waste of my time and the providers’ time and not to mention the hit to my pocketbook and HSA. I’m sure the insurance company would’ve been much happier too with an earlier diagnosis.

Another body defense mechanism is to contract the abdominal muscles, leading to pelvic floor dysfunction. This was actually the first disorder I was able to pinpoint and seek treatment and answers. Once I was diagnosed with the pelvic floor dysfunction, it led to the diagnosis of IC. Many sufferers will find these conditions go hand in hand. This is why I firmly believe that IC must be properly tackled to allow the body to heal.

It makes sense that once your bladder is no longer infected, the lining will be rebuilt thus leading to less pain. Less bladder pain means you subconsciously stop contracting the pelvic floor muscles in response to that pain. There is no quick fix but slow and steady discipline and a lot of support from family, friends and the right providers. Your bladder lining takes 6-7 months to rebuild itself, which really can occur only in an infection free environment.

Anyway, in the midst of all this confusion, anxiety and sometimes outright anger, I learned a lot and hope to pass some of what I’ve learned on to help others too who are looking for answers. (Sometimes when they’re not even really sure of the question). I’ll reference some of the sites that have been a big help to me. I hope to keep expanding on what I’ve learned and keep learning even now. For the next several posts, I’ll go into a little more about some of the symptoms and conditions in the hopes that some of these things trigger you to think “Hey! That sounds like me!” I’ll talk about how I eventually found the right information to figure it out and how to pursue getting the right testing done. I’ll be sure to include tons of resource links to help you explore on your own. I’m glad you found this page and good luck on your journey! Remember you took the first step by really questioning what you’ve been told and have started looking for answers. You can do this!