Welcome back to my “Never Bet Against Occam” series. If you haven’t read the first twelve posts yet you can do that by clicking the link. If you don’t own a copy of this book yet, you can buy one right now by clicking here.
It’s definitely a must-have for those of us with mast cell activation issues. I’ve been going through it chapter by chapter, reviewing each one to see how they apply to my own mast cell disease. I’m sure a lot of it will resonate with you, too!
I’m up to the 16th chapter which is all about the genitourinary or GU tract. Ugh. Many of us have issues with things like bladder pain, also known as interstitial cystitis, urinary tract infections or UTI’s (and even pseudo UTI’s!), kidney problems, painful urination, vaginal and testicular pain and problems, etc. and he covers all of this.
I’ve certainly had my fair share of problems with my own GU tract and had several “but the tests are normal!” urinary tract (not) infections over the years. At the time of my diagnosis I was having severe kidney and bladder pain and multiple episodes of what I fondly refer to as the “invisible ice pick guy” stabbing me straight up my vagina. I would have so much pain, especially when urinating, that it made me cry but, again, the tests always came back normal!
So very frustrating. In men they may have prostate issues, painful urination and testicular/urethral pain. This can all related to mast cell activation. True infections can also be caused by MCA, which I’ll get to in a bit.
Dr. Afrin explains it well:
Just as in the respiratory and GI tracts, the symptoms of mast cell disease in the GU tract are most commonly those of inflammation, and sometimes fibrosis (which, in truth, is just another aspect of inflammation that’s not usually recognized as inflammatory), in one segment of the tract or another.
I am glad he mentions the part about fibrosis being inflammatory because I’ve also always had fibrocystic breast tissue that was excruciatingly painful at times. Once I got diagnosed with MCAD and treated, this went almost completely away, along with my bladder/kidney/urinary/vaginal issues.
It is like a miracle, really. These things were all so very painful in and of themselves and when put together, along with everything else everywhere else, I was miserable! The medicines and avoidance of triggers keeps it ALL pretty well in check, thankfully.
In my experience, painful urination (medically called “dysuria”) is one of the most common such symptoms, and because physicians are conditioned in their training to associate dysuria with infection, many times MCAS patients who are having flares of disease in their GU tracts are assumed to have a urinary tract infection (UTI) even though routine urinalysis and urine culture show little to no evidence of infection.
That has been my experience and my daughter’s as well. This is partly why I believe she also has mast cell issues going on. Doctors still offer antibiotics, though, when there is no sign of infection whatsoever, which is dangerous and wrong. They need to learn and understand that we can have these symptoms from sterile inflammation alone.
There’s some research out there to back all of this up, of course, including here and here. In a research article titled, The role of the mast cell in interstitial cystitis, they point out that while not all patients with IC have mast cell disease, many do. They also explain how mast cell activation plays a role:
The bladder mast cell contains many granules, each of which can secrete many vasoactive and nociceptive molecules. A number of conditions, such as extreme cold, drugs, neuropeptides, stress, trauma, and toxins, can trigger the mast cell to secrete some of its contents; they, in turn, can sensitize sensory neurons, which can further activate mast cells by releasing neurotransmitters or neuropeptides. Additionally, the mast cell can directly cause vasodilation and bladder mucosa damage while also attracting inflammatory cells, thus causing many of the problems seen in interstitial cystitis. The mast cell appears to be involved in the pathogenesis of interstitial cystitis.
How do you treat interstitial cystitis in mast cell patients?
Specific mast cell mediators should be assayed as possible diagnostic tools, and potential mast cell inhibitors should be tried under controlled conditions to determine the extent of therapeutic benefit.
In other words, take your medicines.
Dr Afrin gives some real life patient experiences and has this to say at the end of the chapter:
…chronic inflammation and other immune dysfunction from MCAS can easily lead to true infections, too. There is increasing literature suggesting that mast cell disease can drive acute and chronic kidney disease and perhaps even kidney fibrosis (scarring).
This explains why some of us get actual infections and some don’t.
It’s not just about pain or infection, either. He has found that mast cell dysfunction can reduce libido and even cause infertility. Mast cell disease can cause low sperm count and when treated properly can lead to a successful pregnancy.
So that’s good news for patients hoping to have children. Of course, then the question is, does this run in families? Unfortunately, it does in mine.
Good luck, and make sure to take those medicines! 🙂