My experience with Intermittent Self-Catheterisation (ISC)

ISC has changed my life
I wrote a long reply to this thread twice now, but it keeps deleting - quite frustrating

Thanks for this forum I’m grateful for how it has given me my life back, with the promise of an even better future

#3924 by relicmeister

I am posting this on behalf of relicmeister who had technical problems trying to post it. Andrew

“The Dramatic Effects Intermittent Self-Catheterization is having on my Life”…relicmeister

The following is an account of my experience with Intermittent Self-Catheterization (ISC) and how, along with medication, my life is improving greatly as a result.
I’m 66, married (my second) I have 3 adult children (my adult stepson), and I have a successful career working for the same technical company for 45 years and counting.

From my teens on I have suffered with secondary paruresis, and also parcopresis, which together have caused substantial limitations and complications to my life. Although I went through CBT for several years in my early adulthood, there were no significant improvements, and as a result I turned to alcohol and prescription drugs in an effort to cope with my anxiety and mild depression.
I can’t recall when or how it started that I became unable to urinate in public settings, and how or when I started obsessing over my bowel functions, but it resulted in many avoidance and workaround behaviors. At some point, I found myself in situations where the need to (but inability) to urinate resulted in a panic attack severe enough to cause PTSD. A couple were on long day trips, one was a plane trip from NJ to Las Vegas, a couple were as a hospital patient following a surgical procedure. In one instance I had complete urinary retention and needed to return to the ER and was catheterized, although they didn’t use a Foley in-dwelling catheter as the doctor thought the retention was caused by the anesthesia of the operation (it might have contributed to it). As a result of these traumatic experiences, I began to restrict fluids, and I also began to develop a fear of waking up from sleep with a full bladder and having a panic attack, dreading a possible ER visit. Over the years I was able to cope with my extreme paruresis with the coping methods I’d developed but this caused much residual stress and lifestyle limitations, not to mention the strain it caused on my marriage. It was typical for me to even have dreams where I would be seeking a “safe place” to urinate. I would wake often to pee in order to manage subconscious anxiety.

Last year I decided to go to a high-priced hypnotherapist, but that was a complete waste: it was like he was giving a performance but of no therapeutic value. I tried to find a psychiatrist but all that was suggested was group therapy for stress management so I left after the intake appointment.
Worried about an upcoming family trip and beach vacation, I saw a urologist who said there was nothing wrong but suggested pelvic training and therapy which I didn’t even consider going to. I did ask my primary care doctor to put me on an antidepressant and he prescribed pristiq. After a month I asked him to change it to fluvoxamine which helps with OCD and anxiety/panic which I still take and has been helpful. I also asked him for tamsulosin (aka flomax) but he wouldn’t prescribe it. I also had lost weight and my blood pressure was much higher than normal for me- all a result of my mental state.

Over the past few years I was having more situations where I couldn’t urinate at work, or in the course of any social event, or on the occasional out of state trips to see family, where the anxiety was so great I couldn’t wait for it to end. The lengths I needed to go to feel able to pee were getting more and more ridiculous (usually a wooded area) and even then the panic would be so great I’d be shaking and my heart would be beating a mile a minute. At work I was denying myself any fluids and on my lunch would drive several miles to a wooded trail then returning to work. This past summer my panic attacks were so severe I would sometimes not even be able to urinate in my own home: walking to woods near my house to go. At this level of anxiety, the thoughts I was having were not even rational: I was in a severe negative feedback loop and prone to extreme panic attacks. Even when I wasn’t experiencing the worst anxiety, I developed the habit of going to the bathroom frequently, to keep my bladder as empty as possible. If at work my mind started having doubts I could become quite anxious even when my bladder had little within it. At that point the urine retention was so great I had to leave in order to find relief.

My family trip was disastrous and so was our beach vacation, although the latter put me on a course to a life changing solution. The beach vacation started out fine, but my pee anxiety was so severe I couldn’t even go in the hotel room. I was peeing in a dark stairwell into a urinal and in dense shrubs on the beach dunes. This was so disordered that eventually even they didn’t work and two days before we were supposed to go home I woke with a full feeling in my bladder, but this time I went directly into a panic and by noon I decided an ER visit was the only answer. My wife had taken a long walk on the beach and by the time she got back I was in great discomfort. We drove to the nearest hospital and they finally saw me around 3pm. I was so tense they had a lot of trouble getting the catheter in but finally did; a Foley in-dwelling catheter which they said had to remain in until I saw a urologist. The amount of urine drained was 600 ml. The catheter was uncomfortable but I didn’t care cause my anxiety was relieved. We decided to go home early and I made an appointment for the urologist the next week at which I was prescribed tamsulosin. I worked for 7 work days with the Foley in and they removed it on the next Wednesday morning and I had to return in the afternoon to prove I could urinate on my own (which I could). The urologist told me that I shouldn’t have any further problems, but I convinced him I needed to be trained in clean intermittent self-catheterization to be used as needed which he agreed to. Having watched many ISC videos I knew what to expect and the training was easy. So easy I couldn’t believe it. They said a prescription for 4 catheters per day was placed with a supplier in Oklahoma who called to ask what kind I wanted and what the insurance would approve etc. and I chose Convatec Gentleglide hydrophilic catheters which I tried with the samples given by the urologist and were fine.

They came in like 24 hours- all 120 of them. I decided what I would do is perform self-catheterization about once a day in order to get the technique down pat and to be fully comfortable with it. Next I began to catheterize at work so I would gain confidence in a real world situation. So far I’ve been doing it while seated but will soon try it from a standing position. I’m fully confident I can perform intermittent self-catheterization anywhere- a convenience store bathroom, restaurant bathroom, as guest in someone’s home, on an airplane- anywhere.

As soon as intermittent self-catheterization became something I could perform on my own whenever it would be needed, all panic attack symptoms disappeared, and my anxiety levels dropped to near zero. I felt massively relieved and I knew this for me would be a game changer. Not only did the dread of getting through the work day go away, I was comfortable at work all day. I no longer restricted my fluid intake and looked forward to a large soda with my lunch. My appetite improved dramatically, my focus at work improved, and my normal sense of humor returned.
In my home life, I started looking forward to doing things with my wife that I used to worry about getting through, and going places I used to consider off limits - way out of my comfort zone. A whole new world is opening up for me because of ISC.

Because I had long been in the habit of keeping my bladder from becoming full in order to fend off anxiety, I’m currently in the process of retraining my bladder to be able to hold more urine. I’m making a conscious effort to delay urinating until I really have to. I’m using a urinal when I’m home to measure my outputs and trying to by estimation keep my urine outputs over 300 ml, especially for catheterizations and to work my way up to being over 400 ml for catheterizing. I tend to wake often through the night and I’m making an effort to not urinate every time I wake, if I’m comfortable enough to wait. Delaying urination seems foreign to me and is going to take some time getting used to.

In addition to the SSRI (fluvoxamine) and the Tamsulosin, I am also now taking a low dose of Gabapentin, which has been shown to have some benefit in the treatment of paruresis at least in one limited study. Together, these medications appear to be beneficial with minimal side effects. Much more impactful, however, is the availability of intermittent self-catheterization; the impact being nothing less than life changing. Knowing that ISC is an option, panic has disappeared and my anxiety has diminished to the point where the actual need to catheterize will likely be limited to the exceptions like day trips, social situations like eating out or visiting friends/ family, air travel, vacations, new and unfamiliar places, etc. Given the severity and length of time I’ve suffered with secondary paruresis, as well as my age, I’m fine with using ISC to enable a more enriched life rather than to have an expectation that I could use gradual exposure and CBT to become able to urinate in public settings. The liberation made possible with ISC improves my quality of life more than I ever believed possible, and I’m grateful for the situation that led to this outcome. I’m also grateful for this forum and those who also posted of their experiences with intermittent self-catheterization.

I realize this was a very lengthy posting, and I hope it benefits others in need. I might post again as I have more experiences and go more places.

relicmeister ( Bob)

#3946 by andrew

I'm scared about embarking on this journey but mentally I'm getting there.I do need to do this because I have retention.So glad its working for you.
Any urologist referrals welcome
Thanks again

#4178 by Anonymous

I'm so nervous about starting.
Any tips on best cats to use, I'm quite mobile and would hope to get up to your
speed soon after starting.
Thanks and please message me
Steve

#4179 by Anonymous
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