Finding a diagnosis. I will get better if I can only get that definitive diagnosis. All will be well. I can live my life again.
Diagnosis. The magic word. The cure-all. The everything. The penultimate.
A verifiable diagnosis can be life-altering and life-changing for sure, but for some, it is a term to vocalize to family members without much more direction than saying the words out loud.
Many diagnoses do not have a firm definition. They can leave a person feeling more despondent and more frantic to get a grander understanding of what is wrong with them.
Sometimes getting a diagnosis can lead to more unanswered questions.
When I attended the International Pelvic Pain Society conference a couple of years ago, a world-renowned urologist was discussing the diagnosis interstitial cystitis (a feeling of pain or pressure in the bladder) and stated we have a better plan of care for terminal cancer than we do for this debilitating bladder syndrome. We diagnose and tell patients that they just have to live with it- but we need to do better.
We, as medical providers, need to find that specialist that can help you.
You, as that particular patient, need to do research and find that specialist that can help. Many specialists I know around the country have a passion and HUGE empathy card towards patients with their diagnosis of personal interest.
When I treat patients with involved pelvic pain, I don’t refer them to any pain management doctor- I refer them to a doctor I have personally screened and know for a fact has a passion and interest in treating pelvic pain.
Please know that there is a person out there that will be able to help. Sometimes, it takes a little more reaching out, researching, writing, and calling than the normal person- but there is hope and help.
One quick and easy thing you can do is a google search of the body part where you have pain.
But not just regular ol’ google – GOOGLE SCHOLAR.
Pick out your body part that has pain, for example- bladder pain.
Go to Google Scholar and search the term “bladder pain and treatment.”
Google Scholar will search for peer-reviewed articles from scholarly journals. This will bring you quickly to the experts in the body part region you seek more answers from.
My example popped up 30,100 articles pertaining to bladder pain and treatment. The first article discusses the American Urological Association (AUA) guidelines for interstitial cystitis/bladder pain. The guideline’s main author is Phillip M. Hanno. With a quick google search, I found Dr. Hanno, which is a urologist that specializes in chronic pelvic pain that works at Stanford Health Care.
Bingo! Another quick google search easily found Dr. Hanno’s email address. Many authors provide their email addresses within the articles themselves, so no google search is required.
Now that you have his email, you can write this expert and ask him if he recommends any medical practitioner in the region you live in that specializes in bladder pain. Or you can ask if they provide phone consults.
You can see if they are in fact still practicing medicine or are only doing research. If they are only doing research, they may take the time out to answer you and point you in the right direction anyway.
Your next step is to repeat this with every doctor/researcher you can on the first search page on google scholar search.
I will say that randomly choosing this topic for this blog post to my surprise, about 7 articles down, there was a wonderful article published in 2018 titled, “Successful Treatment of Interstitial Cystitis/Bladder Pain Syndrome in Women with Provoked Vestibulodynia.” The main author R. Rubin is Dr. Rachel Rubin, an esteemed urologist who is a very powerful advocate for helping patients with unresolved bladder pain. She is an up and rising star in the urology world and the most up to date in treatment for Painful Bladder Syndrome.
Doing this simple search brought me to an expert! A physician that could provide not only hope but answers with a direct treatment plan. Dr. Rubin has a presence on Twitter. She is easily accessible digitally, it just takes the extra effort finding the means to reach her.
I want you all to never give up and always persevere, no matter how hard of a battle this ambiguous diagnosis may seem.
You can become a PAINNILATOR!
Next week, we will continue our discussion of the word diagnosis and how having one with a direct treatment plan can debilitate one mentally and how to overcome this hurdle.
Prayers to all the victims of Hurricane Dorian.