(Editors Note – The plight of men with interstitial cystitis has never been fully told due to the misperception that IC/BPS is a woman’s condition. In our Spring 2013 IC Optimist, we published a dozen stories from men struggling with IC. A professional chef, Tom’s story shares how difficult it can be for men to receive a correct diagnosis and, sadly, receive pain care.)
I joined the IC Network in 2007 while searching for more information about IC. I joined the forums and did a lot of reading but I did not post anything until recently. I would like to commend you for the tireless work that you do and for providing your members excellent information and timely support. Your site helped to give me hope that someday there might be a way of lessening IC’s impact upon my own and others lives.
I woke up at 6:15 AM on September 17, 2002 in excruciating pain. I had just finished driving from NC to NH after visiting my children. Maybe it was the long drive, maybe it was the stress that I had been going through or maybe it was just the price paid for being a chef for so many years, but IC became an integral part of life. I say this, but IC did not really become a part of life then because it took many years to diagnose this. In 2002, IC was not even thought of when looking at men and what ails them. My primary care physician is an internist who does have a good way of looking at things.
We looked at all the normal things that you look at when pain in men is in that region. There were so many tests with so much frustration and so little to show for in results. I have gone through colonoscopies, upper and lower GI’s, MRI’s, X-rays and the list goes on and on. At this point, I was frustrated, my doctor was frustrated and the woman who had been a great part of my life for fifteen years was telling me that this was in my head. The issue was that the pain would not go away and the frequency and urgency made it difficult to sleep.
As a chef you train yourself not to use the bathroom until you have a down moment on the line. Maybe this helps me to deal with it during the daytime. There just are times that no matter how much you need to go you cannot leave the kitchen. In the long run, I think that this is better because it forces my bladder to expand. At night, there is nothing to distract you from the pain and pressure so you do wake up from the slightest amount of liquid in your bladder.
During one visit to my primary care physician, he told me that he had tested me for everything that he could possibly think of and was not sure where to go from here. Towards the end of the appointment, he said there was one thing he had not tested me for and that was IC. He explained that 98% of all cases were found in women and he had not wanted to waste my time but would I be willing to be tested. The test was to do a bladder distention with a biopsy. This was done and he told me that the results indicated that I have a moderate to severe case of IC. I have been to urologists who specialize in IC and have been tested a few more times to receive the same answer. Now that I knew what I had it was time to start figuring out how to treat it.
I wish that the fact that I had IC changed my home life but it did not. I was looked on as having something wrong in my head and not with my body. In short without going into details, this eventually led to the end of our lives together. Was it IC solely? No, it was not, but it played a great part in the decisions that were made.
I am not sure how others who live with chronic pain handle their lives but I know that there came a point in time where it was difficult just to stand much less to accomplish anything. Again, being a chef, this is not an acceptable situation. So you work through the pain, live with the pain and figure out how to function with the pain, but your life is miserable while going through this. When you do not have support of a loved one it is even harder to deal with. It is especially difficult when you have nursed your loved one through some very difficult times prior to this happening to you.
You also begin to question who and what you are. Pain is different with each person. I think that I have a pretty high threshold for pain, but nothing in life prepared me to life in pain constantly. Now you get to the question of “What is the quality of your life?” At some point you have to deal with the pain issue. That is lessening the pain. Here we begin the really bad side of medical care.
“I told Mom about my IC and told her that I thought she might also have it. Sure enough, her urologist did some tests and connected the dots of her symptoms with my diagnosis and concluded she also has IC.”- —Kevin
I am in pain and I need something to make this pain livable. This, in many cases, is a very difficult conversation to have with a doctor. Due to the Federal laws and the common perception in both the medical community and society today, the use of pain relievers is more than frowned upon. When you ask a doctor for something for pain, he thinks that you have a drug problem. When your spouse sees you using pain relievers, she thinks you have a drug problem. But when you do not use any, you have no quality of life. This is kind of a catch-22 for those of us withIC. Ideally I would love to live life without using anything for pain, but I know that is no longer possible. I have been through physical therapy, have massages, use acupuncture and other remedies. I still find I need to use something to soften the pain so that I can function.
I currently use Elmiron 3-100mg daily and still do not know if this helps or not. DMSO treatments have done little to help me. Hydrodistention has not helped either. The roxy/oxycodone does, at least, allow me some semblance of life. Let me go off on a tangent here. The typical way that this proceeds is that your primary care handles the prescriptions or you are sent to a pain clinic. I have done both. Both want you to be on a time released version of whatever they decide to prescribe you. For some this may work, for me it did not.
When you have a medicine in your system that is released over time and keeps a steady stream going you develop a tolerance quickly. It then requires more and more to cover the same amount of pain. I have a fast metabolism so it was three tablets a day instead of two. In nine months my dosage tripled and I decided that was enough. I went through the withdrawal you go through when you have been on any narcotic pain reliever for an extended period of time. I did without anything for six months to first make sure that my system was clean, that this was not an addiction and to allow my nervous system to reset itself.
The next on the list was Tramadol. This is one nasty medication. For me it made me sick and I was hospitalized. It is here that I decided that I would take control of my own regimen. The pain clinic insisted that I either be on time released oxycodone, morphine or methadone. I wanted none of these. I returned to my primary care physician, signed a narcotic contract and went to an IR form of oxycodone. This allows for peaks and valleys in the medicine and has made it to where I do not seek increased amounts for the pain. Is it as effective as it was at the beginning? No, but I have found a level that allows me to maintain a life without an ever growing amount of medication. How the medical profession deals with pain and how they make their patients feel is an area that needs to be addressed. Maybe there are medications coming down the road that will deal with pain without the side effects of narcotics or the even worse drugs, like Neurontin and Effexor®.
How is life now? I can function as a chef and, in my personal life, pretty well. For the most part I have found a balance that works for me on most days. Coming off a three week flare-up I was questioning this though. It is the flare-ups that hurt the most.
The other issue of not feeling sexual or wanting to have sex at times hurts my current relationship. While I have tried to explain IC and what I am going through and even shared written information with her, she wants to think that it is more what I think of her, that I have lost interest and soon. We do have sex and a fair amount of it at times. There are times that I am in too much pain to think of sex. Beyond this though life goes on. All of us keep hoping for a treatment that works and you look forward to tomorrow.
Jill, thank you for all that you do to support all of us with IC. You have been a great help to all of us.