As we head into the end of Interstitial Cystitis awareness month, I wanted to shine light on the topic of men living with Interstitial Cystitis/Bladder Pain Syndrome.
Many studies show that IC/BPS is 2-3x more common in individuals who identify as women than men. However, the difference between men and women may not really be as high as we may think, as some men diagnosed with chronic prostatitis or similar conditions may actually be living with IC/BPS.
Real life example: When I was struggling with my pelvic pain and chronic UTIs in my 20s, a male friend of mine opened up to me about his own chronic bladder and pelvic problems. I was shocked and sort of relieved to have found someone with symptoms that I could relate to. Our pain and symptoms were incredibly similar but he was diagnosed with chronic prostatitis and I was still being told I had chronic UTIs.
For IC Awareness month, I connected with a fellow blogger and male IC warrior, Michael (Mazoli) and was happy to hear he wanted to share his journey and perspectives on living with this condition with The Happy Pelvis community.
So without further ado, I’d like to introduce you to Michael (Mazoli), who is from Louisiana, USA.
Hello, my name is Michael (also known as Mazoli), and I was diagnosed with Interstitial Cystitis (IC) or painful bladder syndrome in 1995. I started a blog to share my experience with IC, and hopefully, lend support to others with IC or for that matter, anyone suffering from a chronic disease.
Michelle, thank you for this opportunity to share my story with your readers. One of my main goals in life is to bring more awareness to this condition. Another important goal is to provide a support system for anyone with IC. Without a great support system, I do not think anyone can successfully managed this disease.
So here is my story and thoughts about living with Interstitial Cystitits/BPS…
I started having symptoms of pelvic pain, urinary urgency and frequency. As most of us think, you go to the doctor; tell him or her your symptoms, and then you take medicine and you feel better in a few days. I was treated for a prostate infection with antibiotics for over 12 months.
So, in addition to IC, the antibiotics destroyed my intestinal health. All of the good bacteria in my gut were pretty much gone. I went to doctors for a little over a year before I got my diagnosis of Interstitial Cystitis. I was so relieved. I thought that now that I finally had a correct diagnosis, my doctor could fix it.
I was so wrong.
Over the years, I have had a long list of medical treatments and have taken just about every type of prescription you can think of for IC. I have had many cystoscopies, some with a biopsy and some without. The doctors wanted to rule out bladder cancer. A cystoscopy is often used to diagnosed IC and is used to stretch the bladder. I have had weekly bladder instillations with DMSO and other medication cocktails over the years. I have gone to a physical therapist for pelvic floor therapy. I took Elmiron which is a drug specifically developed for IC at two different periods of time.
I tried acupuncture. I also went to a physical therapist for dry needling. I had two prolotherapy procedures done (very painful). I had Botox injections in my bladder wall. I was even convinced to have a transurethral resection of the prostate (TURP) twice! A TURP is a surgical procedure that involves cutting away a section of the prostate.
I tried a series of nerve stimulation procedures where a fine needle is inserted near a nerve just above the ankle and an electrode is placed on the foot. A mild electric current is passed through the needle to relax the nerves that control bladder function in the lower back.
I considered having an Interstim device implanted where a tiny electrode is placed near the nerve in your lower back, which is then attached to a pacemaker sending mild electrical pulses to the nerve that helps control erratic bladder function. I called people who had this device but, in the end, I decided against it.
I have been on a long list of medications over the years. Here are some of the medications I have taken: Elmiron (pentosan polysulfate sodium), Elavil (amitriptyline), Lioresal (baclofen), Neurontin (gabapentin), Ultram (tramadol), Pyridium (phenazopyridine), Uribel (methenamine), (diazepam) suppositories, etc.
I even had a doctor tell me that he thought that my bladder needed to be removed. He said he had other patients that had a bladder removal and had great results. The doctor said that he did not want me to be scared to do the drastic surgery and live a life in pain. I did not go forward with that surgery.
As you can see, I have been willing to try just about anything to help control my symptoms. I have learned a few things over the years. First, get a doctor that is interested in treating IC. Most urologists say they treat IC, but you should look for a doctor who has a special interest in this challenging disease. Also, find a doctor that becomes invested in you and your well-being.
The right doctor should be someone who is willing to listen and try new treatments or procedures. The doctor that is right for you should be interested in reading the latest research and studies relating to IC. Of course, always do your homework/research before agreeing to any procedure or medication protocol.
One of the most important tools you can have for dealing with IC is having a great support system. You need to be able to count on family, friends, blogs, clergy/congregations and IC support groups when you are having a bad day or week or month. Another suggestion is do not overlook naturopathic remedies and supplements. There are tons of articles on the Internet that highlight the benefits of supplements, minerals and vitamins. And lastly, watch what you eat. Some of the IC diets out there are so comprehensive you would not be able to eat much of anything. My advice to you is start a food diary. Write down what you eat in a day and put a comment of how your IC symptoms are that day. Find out exactly what foods bother your bladder. The general rule is to stay away from acidic foods.
And lastly, there are several studies being conducted on IC and how to treat the symptoms. I am hopeful that one day IC will be a thing of the past.
I hope this post was informative. Feel free to reach out to me.
My blog and contact information can be found at https://treatinginterstitialcystitis.com/.
Michelle, thank you for your efforts to raise awareness about Interstitial Cystitis. Also, thank you again for giving me this opportunity to share my story.
Mazoli