/, Interstitial Cystitis Network Blog, Men's Health, Patient Stories, Pelvic Pain/Men With IC/BPS Speak Out – Tom’s Story With Interstitial Cystitis

Men With IC/BPS Speak Out – Tom’s Story With Interstitial Cystitis

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(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.

About the Author:

My Google Profile+ Jill Heidi Osborne is the president and founder of the Interstitial Cystitis Network, a health education company dedicated to interstitial cystitis, bladder pain syndrome and other pelvic pain disorders. As the editor and lead author of the ICN and the IC Optimist magazine, Jill is proud of the academic recognition that her website has achieved. The University of London rated the ICN as the top IC website for accuracy, credibility, readability and quality. (Int Urogynecol J - April 2013). Harvard Medical School rated both Medscape and the ICN as the top two websites dedicated to IC. (Urology - Sept 11). Jill currently serves on the Congressionally Directed Medical Research Panel (US Army) where she collaborates with researchers to evaluate new IC research studies for possible funding. Jill has conducted and/or collaborates on a variety of IC research studies on new therapeutics, pain care, sexuality, the use of medical marijuana, menopause and the cost of treatments, shining a light on issues that influence patient quality of life. An IC support group leader and national spokesperson for the past 20 years, she has represented the IC community on radio, TV shows, at medical conferences. She has written hundreds of articles on IC and its related conditions. With a Bachelors Degree in Pharmacology and a Masters in Psychology, Jill was named Presidential Management Intern (aka Fellowship) while in graduate school. (She was unable to earn her PhD due to the onset of her IC.) She spends the majority of her time providing WELLNESS COACHING for patients in need and developing new, internet based educational and support tools for IC patients, including the “Living with IC” video series currently on YouTube and the ICN Food List smartphone app! Jill was diagnosed with IC at the age of 32 but first showed symptoms at the age of 12.

11 Comments

  1. pearlish May 7, 2014 at 2:59 am

    Hi, have you ever tried natural treatments? Like marshmallow tea or a mint tea. It worked very well for me and for many IC patents. There are also Prelief after you eat acid foods. Are you doing a IC diet? it worked well for me.

  2. Celestina88 May 7, 2014 at 3:25 am

    Here in Italy the doctor are used to nurse IC with bladder instillation of ialuril and amikacine. It is showing good results long term. Obviously there are other drugs that are a useful suplement as laroxyl, rivotril… and other stronger. I use every evening a supplement that alkalinize the ph that contain baking soda and minerals. Hope my worda can be useful. Bye

  3. icnmgrjill May 8, 2014 at 12:36 pm

    Celestina… I understand the ialuril which, for our North American users, is a solution of chondroitin and sodium hyaluronate. But, why would they use amikacine, which is an antibiotic generally reserved for use in the treatment of very severe antibiotic resistant infections?? Have you been diagnosed with an resistant infection?

    Jill

  4. Pearlie May 10, 2014 at 4:29 am

    My IC story began when I was 38. (I am now 71) Eventually my “chronic inflammation” was diagnosed as IC in 2001. As the years went by it was becoming more and more painful. In 2004 I found myself in the office of the Head of Urology at our biggest hospital in Brisbane, Australia. So desperate was i that I almost pleaded with him to remove my bladder. He gently suggested we try something less dramatic. It turned out to be the best day of my life. The management plan was to have a cystoscopy once a year and as well as that I was taught how to instill an anaesthetic, (Marcaine), into my bladder using a catheter. Once I learned the knack it was a very simple thing to do. Within 5 minutes of putting it in the pain would be gone and stay that way until I would have to empty my bladder. I could use it four hourly but often the flare would have subsided and I was at first using it about 3 times a day. It took most of the stress out of my life knowing I could relieve the pain.

    After about 4 years we stopped the cystoscopies and I was using the Marcaine less and less. Now 10 years later I have only used it twice this year. Medically I don’t know if it makes any sense but it is almost as if the marcaine has healed my bladder. My future was looking so bleak but now I am feeling happy and confidant about the years ahead.

  5. steve333 May 10, 2014 at 5:13 pm

    I find that MSM capsules and Just Barley capsules have helped the most. I also take magnesium malate/citrate at night along with a bunch of supplements during the day including probiotics, digestive enzymes, fish oil, etc

  6. Barryd May 10, 2014 at 5:32 pm

    After 3 years of misdiagnosis from supposedly the “best urologists”. I finally got my diagnosis from Keck Med Center, USC. Dr. S Boyd knew my problem almost intuitively, IC. We began Elmiron, which really was a money pit with no real success. But it is the treatment of choice, unfortunately. If it works for you, thank God. I went through a series of standard installations with no success at kaiser permanente in southern ca. I must point out that my doctors at kaiser are grads of USC and Dr. Boyd and are terrific. I have received 4 distension sand the seem to work well for me. I realize up to six weeks of minor to no flare ups. When I am flared, it is miserable. Ice packs, heavy narcs (methadone, 10 mg every 6 hrs.) actually helps me live a semi normal life. I find that 24 to 36 hrs of methadone builds up a “resididual”effect which lasts me up to 5 days. The use of time released meds are not effective for me because you are taking them regardless of severity of flare ups. It may lessen the pain, but I feel like I’m walking around in a fog. And while I am 69 yrs old, I own my own business, so retirement is not an option. I have to be alert and when I take methadone, I simply work from home or on the computer. I expect to begin a course of self installations shortly and will report back on the success or failure. Every one is different so I encourage you to try every thing in order to manage this insidious disease. Aloe vera, tums, IC diet all helps. Good luck and God bless!

  7. Noraisha May 11, 2014 at 1:20 am

    Hi Barryd,I am 63 years old I have IC since I was 40.I have learned how to suppressed the pain with natural stuff.Have you ever tried cystoprotek,desert havest aloe vera,colostrum,fish oil,Digest-seb,probiotic, prelief, coffee enema,and the most important off all is IC diet.This is the stuff that I took to put my IC under control and pain free.

  8. Andrea N May 11, 2014 at 10:40 am

    Hi Tom – have you heard of the LEAP diet – it is written up in the most recent issue of IC Optimist magazine. For some it has been very helpful with fine-tuning the diet approach and reducing inflammatory triggers.

  9. igsthemusical June 18, 2014 at 4:26 pm

    Hi Tom – This is my first post on the network. September 17th is not such a great day for either of us. That’s when the burning in my urethra started in 2009. It hasn’t stopped since.

    Luckily, I was diagnosed within three weeks.

    We both followed very similar paths in trying to help ourselves with this disease. At the present, I have mostly weaned myself off of narcotics and am using a new-ish drug called Hyophan that numbs that bladder and the urethra.

    I can’t say that it’s a godsend yet, but it appears that I am having considerable relief. Catch me after I’m finished weaning myself off of narcotics so I can know if it is as good as I think it is.

    I have other conditions, so pain is a way of life for me. It’s a constant struggle to keep a positive outlook. I’m blessed to have the support of a wonderful partner and great friends, but this type of pain is so pervasive that it can eat at you.

    I’ve found that MINDFULLNESS MEDITATION has helped a great deal.

  10. emeraldlinda2 August 7, 2014 at 10:11 pm

    My wife registered with the forum a few days ago while I am having my flares ,8 days total. But she joined the network a year ago. I am fortunate my wife of 47 yrs is a retired MD, who never stopped searching for something to relieve my pain, urgency and sleep deprivation. I am 70 yrs old and i was diagnosed 3 yrs ago after suffering for 7yrs, and my Urologist did Botox injection.,E-stim implant. 7 days ago I started having flares and my wife gave me a round the clock pain killers like Hydrocodone, Tramadol, Ativan, Elavil, Alleve, plain tylenol. I so depressed and my wife was very concern, what a big CHANGE from a very jolly guy to a drugged one.
    But WATER is my number one treatment, and the IC diet. I found a very special bread without spices( no soy lecithin, vinegar, citric acid or any preservatives or artificial coloring) 2 days ago.I am taking now a new prescription Myrbetriq( sample given by Dr. Hsiao).
    I have not tried Yoga nor Mindfulness Meditation, but my wife is urging me to try it. I am a very giving person so I am very sensitive if no reciprocation. With that trait, my Urinary bladder is affected.
    It has been 3 days now I am FREE of drugs but today I had lunch where I am not sure of the seasonings.So this evening I have frequency and urgency. So food is the culprit
    I am very grateful to Jill and the IC network for all theirs work. Of course to my supportive wife for her research with the IC Network and First of all My Faith in HIM.

  11. emeraldlinda2 August 7, 2014 at 10:41 pm

    Attention: icnmgrjill

    I just saw in the Facebook site, that you are giving away a new book Proactive. Do you still have some?
    Can we get one?
    thank you !

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