The Unique Needs of Men With IC/BPS -  Interstitial Cystitis Network 

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The Unique Needs of Men With IC/BPS

Challenges Facing Men With IC/BPS Are Undeniable!

Spend a week in the IC Network offices and you might be surprised by the number of phone calls we receive from men struggling with IC symptoms. We’ve worked with physicians, military service members (command and enlisted), pilots (commercial and military), actors, stockbrokers, congressmen, space scientists, police officers, teachers, bus drivers and judges. Some have been in their teens while others are quite elderly. Most, though, are in their prime when symptoms strike.

It might surprise you to learn that almost as many men have IC as women according to the latest RAND Interstitial Cystitis Epidemiology (RICE) study. 1.8 to 4.2 million men have symptoms of IC making it far more prevalent than chronic prostatitis which is estimated at 2.1 million men in the USA.1 Yet, just like women, men often struggle to receive compassionate medical care, treatment and support.

The symptoms of IC can start gradually or suddenly. A man may notice that he can’t sleep through the night without getting up to use the restroom once or twice. Driving to school or work can become uncomfortable. Sitting through meetings or plane flights becomes a strain due to a constant sensation of urinary frequency or urgency. The hallmark symptom of IC, pain as the bladder fills with urine, becomes distracting and requires more frequent visits to the restroom. Some men simply ignore it under the mistak- en assumption that urinary symptoms develop with age while others may call their physician asking for antibiotics to treat what they think is a bladder or prostate infection.

men-goticaskmeIt is pain associated with intimacy, particularly ejaculation, that causes alarm and distress. Some men describe severe urethral irritation and/or burning. Others report that pain is concentrated at the tip of the penis or the shaft of the penis. At this point, men often wonder if they have developed a sexually transmitted disease. Yet, embarrassment of their symptoms and/or fear of having a prostate or testicular examination can be a formidable obstacle to asking forhelp. I asked my 90 year old father why men are so reluctant to talk with their physicians and he said “A problem with the penis would never be discussed because we believe it will be temporary. I would have only gone to the doctor if I saw something that I knew was very wrong, like blood in my urine.” Thus, expecting a man of 21 years of age to reveal that they are having bladder, prostate or sexual problems and then to undergo a testicular or prostate examination may be unrealistic. Yet, it is the physician who can clarify the diagnosis and offer treatment that can dramatically improve symptoms.

Diagnostic Challenges

Most men first visit their primary care providers who conduct routine urine and prostate examinations and it is at this point that many men find themselves misdiagnosed as chronic prostatitis patients. The “answer” is generally assumed to be a course of antibiotics which, over time, prove ineffective at resolving symptoms. After it becomes apparent that the symptoms are not improving and/or that “flares” continue to occur, primary care providers usually refer men to urologists. This is generally a step in the right direction. It is the urologist, with six years of additional urological training, who can better distinguish between bladder, prostate and a few other conditions which can cause urinary tract symptoms.

“…many clinicians think of IC as a ‘female illness’ and, therefore overlook the possibility of IC in their male patients.” —Robert Moldwin MD

Before the first appointment with a urologist, men should make a list of their symptoms, particularly anything unusual. How many trips to the rest- room are taken on average every day and night? Where is pain located? What does the pain feel like? Does anything trigger bladder symptoms or pain, such as sex or sitting down? Does anything relieve the pain? Are there any other medical conditions present, such as irritable bowel syndrome? The more clearly symptoms are discussed, the quicker a diagnosis may be made.

In The IC Survival Guide, Robert Moldwin MD shared some of the unique challenges that men face in diagnosis. He wrote “The male IC patient often has more difficulty receiving a diagnosis and ultimate treatment than the female IC patient. The reason is simple, many clinicians think of IC as a ‘female illness’ and, therefore overlook the possibility of IC in their male patients.” The symptoms of IC are virtually indistinguishable from prostate disor- ders thus requiring a comprehensive assessment that distinguishes between the two organs. And, as Dr. Moldwin offered, “To make a diagnosis of IC even more problematic, it’s possible to have two problems at the same time, such as IC and a prostate that’s obstructing the flow of urine.”2

The American Urology Association (AUA) urges clinicians to perform a thorough history and physical exami- nation. They suggest that symptoms must be present for six weeks in the absence of infection. A physical exam ination of the pelvis should be performed to assess the pelvic floor mus- culature. A variety of tests can also be performed (cystoscopy, urodynamics, hydrodistention) to help clarify the diagnosis if needed.3

Several conditions must be ruled out, including:

Prostate Enlargement

Prostate enlargement (aka benign prostatic hyperplasia or BPH) naturally occurs in men as they age, the result of dihydrotestosterone which is produced by the testicles and stimulates prostate growth. If the prostate grows inwards it will eventually begin to block the flow of urine. He will have difficulty start- ing urination and poor urine flow. He may feel the need to strain and/or have a sensation that his bladder is still full. Men may find themselves using the restroom more frequently, yet only able to release small amounts of urine.

Because the flow of urine is restricted, the muscle in the bladder often pushes with more force. The downside? The bladder muscle becomes thicker, stronger and less elastic. The bladder muscles can contract at random times, causing sudden urgency and, in some cases, leakage. BPH can also lead to an inability to void (acute urinary retention) that will require immediate medical intervention and/or emergency care. Increased bladder infections and the develop- ment of bladder stones can also occur. When present, BPH should be treated at the same time that IC is treated. Oral medications (i.e. alpha- blockers) may be helpful. Surgical intervention (TUNA, TURP) may also be considered.

Seminal Vesiculitis

Located above the prostate gland, the seminal vesicles produce the majority of fluid released during ejaculation. Seminal fluid drains into the vas deferens where it is mixed with sperm. When the seminal vesicles become infected or inflamed they trig- ger symptoms very similar to IC including frequency, pain with or after ejaculation, pain with urination, testicular pain, perineal pain, low back pain, a sensation of bladder fullness and/or blood in the urine or semen.

The first indicator of vesiculitis is tenderness with touch. Physicians may also perform an ultrasound, CAT scan or MRI to identify enlarged vesicles as well as a culture of seminal fluid to identify the presence of bacteria. A number of treatment options are avail- able.

Prostate and Bladder Cancer

Advanced prostate cancer can trig- ger symptoms similar to IC. Prostate cancer is easy to screen for with the PSA blood test and a simple prostate palpation. Bladder cancer has been linked to both tobacco smoking (cigarettes, cigars and pipes) and exposure to various carcinogenic chemicals. Chemotherapy and radiation treat- ment have also been implicated.

Visible or microscopic blood in the urine is often the first sign. Symptoms can include pain with urination, a sensation of incomplete emptying, urinary frequency and urgency. A urine cytology test can be used to identify various bladder cancers. A biopsy of a possible lesion may also be obtained during a bladder hydrodistention. Early stages of bladder cancer are usually very responsive to treatment.

Chronic Prostatitis/Chronic Pelvic Pain Syndrome

There are four distinct categories for prostatitis, only one of which correlates somewhat strongly with IC.

Category 1 – Acute Bacterial Prostatitis is a severe infection of the prostate gland with symptoms of fever, chills, urinary frequency, urgency, low back pain and prostate tenderness during a rectal exam. Bacteria and white blood cells are identified via urinalysis. Antibiotics are used to treat the infec- tion. If the prostate is swollen and is blocking urine flow, urgent care and hospitalization may be required.

Category 2 – Men with Chronic Bacterial Prostatitis suffer with recur- rent, persistent bladder infections which originate from an infected prostate gland. Considered a rare dis- ease, it is identified via culturing of prostate fluid as well as urinalysis. Treatment requires a prolonged course of antibiotics, preferably ones the penetrate the prostate well such as fluoro- quinolones.

Category 3Male Chronic Pelvic Pain Syndrome (MCPPS) – The vast majority of men (85%) diagnosed with prostatitis fit into this category, known as male chronic pelvic pain syndrome. They experience all of the symptoms 1 and 2 (pelvic pain, testicular pain, penile pain and pain with ejaculation) but no infection is found in urine or prostate fluid.

Category 4Asymptomatic Inflammatory Prostatitis is the diagnosis when inflammation is found in the prostate yet the man has no symptoms. Usually, this is found during another routine medical procedure such as a biopsy to rule out prostate cancer. No treatment is usually offered in this case.

Pelvic Floor Dysfunction (PFD)

The muscles of the pelvic floor region are a well known source of uri nary, bowel and sexual discomfort. Weak muscle tone can trigger inconti-nence and/or a decreased ability to become aroused, orgasm and/or ejaculate. Tight, hypertonic muscles can cause urinary and/or bowel frequency, urgency, retention, sexual dysfunction and/or pain. IC pain, often described as ground glass or razor blades, worsens as the bladder fills with urine and is then relieved, sometimes only slightly, after urination. Pelvic floor pain often persists throughout the day. It has been described as sharp or dull, shooting, stabbing or burning. Strong pelvic floor or bladder spasms can occur at the end of urination.

PFD can occur after a car accident, fall, jamming the crotch on the bar of a bicycle, prolonged sitting on hard surfaces, prolonged motorcycle or bike riding, heavy weight lifting and even poor posture. High levels of anxiety and/or stress can also provoke muscle tension. Diagnosis requires an assessment of muscle tone. Physicians and physical therapists usually evaluate tension in the legs, hips, buttocks and low back as well as the pelvic region.

Physical therapy is the treatment of choice, along with a healthy dose of muscle relaxation exercises. Beaumont Hospital (Royal Oak, MI) has produced a relaxation CD, Guided Imagery to Enhance: Chronic Pelvic Pain or Prostatitis Relaxation, for men struggling with pelvic floor tension currently available on the ICN Mail Order Center.

Pudendal Nerve Entrapment (PNE)/Pudental Neuralgia

The hallmark symptom of pudendal nerve entrapment (PNE) is pain when the hips are flexed, such as sitting, squatting, exercising and bicycling that may be relieved when standing up. PNE can cause pain in the penis, scro- tum (or the labia in women), perineum, rectum as well as urinary symptoms and sexual dysfunction. One man called the ICN office complaining that when he sat down the base of his penis began to vibrate violently and painfully. Other men and women have report- ed similar experiences, as if they are sitting on a cell phone on vibrate, particularly after sitting for a long period of time. This is known as a fasciculation and can occur when a nerve is compressed.

Dr. Stanley Antolak, one of the nation’s leading specialists on PNE, offered “Most patients have a history of active high school sports, adult jogging, cycling and gymnasium workouts requiring repetitive hip flexion. Symptom onset is usually insidious, difficult to identify and occurs 1-2 months after initiation of trauma. A single precipitating event such as squatting to lift a heavy object or prolonged cycling may be identified.”4 Traumatic accident, compression, friction and chronic constipation are also potential causes.

Dr. A Filler (Institute for Nerve Medicine) has outlined four major subtypes for PNE based upon the location of the entrapment.5

Type I – entrapment at the exit of the greater sciatic notch in concert with piriformis muscle spasm
Type II – entrapment at the level of the ischial spine, sacrotuberous ligament, and lesser sciatic notch entrance
Type III – entrapment in association with obturator internus muscle spasm at the entrance of the Alcock canal
Type IV – distal entrapment of terminal branches.

Treatment is somewhat controversial. Some clinicians recommend a course of physical therapy while others use surgery to reduce the entrapment. If a ligament is severed, however, it may be difficult to resume old activities such as lifting weights. A thorough review of the potential benefits vs. risks must be explored. In his study, Dr. Filler reported a 50-100% improvement in pain and function in 87% of the patients who participated, most within the first four weeks of surgery.6

A Customized Treatment Plan

There are a wide variety of diverse treatments now available to men struggling with bladder symptoms including various oral medications, physical therapy, bladder instillations and, for the more severe patients, experimental therapies such as Botox. Surgery is rarely considered. A one treatment fits all approach is simply not effective. Some patients have mild symptoms while others more severe. Some have Hunner’s ulcers while others have very mild bladder irritation. Some have pelvic floor tension while others may have other relat- ed conditions such as IBS. Physicians now strive to treat the “whole” patient by creating an individualized treatment plan.

In the UPOINT phenotyping diagnostic system, men are evaluated in six categories:

  • U – Urinary Symptoms: Is the patient retaining urine and/or strug- gling with urinary symptoms such as frequency, urgency or pressure?
  • P – Psychosocial Symptoms: Is the patient struggling with depression, feeling helpless, hopelessness, anxiety or catastrophizing?
  • O – Organ specific: Does the patient have any organ specific pain or discomfort, such as pain as the bladder fills, tenderness of the prostate?
  • I – Infection: Is there any evi- dence of infection in urine or prostate secretions?
  • N – Neurologic/Systemic: Does the patient have any other pain syndromes such as IBS, vulvodynia, fibromyalgia?
  • T – Tenderness: Does the patient have muscle tenderness in the abdomen or pelvis?

Based upon the results, a multi-modal treatment plan is usually suggested. Medication such as alpha blockers may be prescribed to reduce frequency. Support services are suggested and essential for men struggling with anxiety or depression. Hunner’s ulcers and/or other organ specific conditions may require specific treatment such as laser therapy. Infection is treat- ed with antibiotics. Physical therapy can help reduce muscle tenderness. If any other related conditions are contributing to his discomfort, such as IBS, then they would be treated as well.

The AUA Guidelines for the Diagnosis and Treatment of IC also provides guidance to patients and providers as they consider treatments specifically for the bladder. AUA emphasizes that the improvement of patient quality of life is the key goal of therapy and consideration should be made for a treatments invasiveness, potential adverse events and the reversibility of a treatment. As a rule, treatment should begin with generallysafe “conservative” therapies. If no improvement is found, “less conservative” treatments that may have more risk of side effects and adverse events can be explored. Surgical treatment is rarely suggested and only under specific circumstances because it is irreversible.

First Line of Defense – Diet Modification

Studies have demonstrated that 90 to 97% percent of patients experience a worsening of their symptoms after eating various foods and beverages, particularly foods high in acid, caffeine and alcohol. Pouring lemon juice or alcohol on an open would sting and thus we believe a similar effect occurs on a tender bladder wall, especially for patients with more severe bladder ulceration. Diet modification is the
first line of defense and it works.

There can be significant barriers for men who work in various occupations where a limited diet is routine. Members of the military, police offi- cers, physicians often rely on coffee and soda throughout the work day. Finding lower acid and decaf beverages can be difficult yet it’s worth it. Many men report that their symptoms improve after removing various foods from their diets.

Learn more about diet in the ICN Diet Center

Stress Can Worsen Bladder Symptoms

Researchers are studying why active duty military members (men and women) returning from combat operations in Iraq and Afghanistan appear to have increasing rates of IC. One theory is the role of stress. Several studies have found a direct correlation between stress levels and symptom development: the higher the stress, the more intense bladder symptoms.8 The research is supported by thousands of patients who have shared that their symptoms worsened during periods of high stress such as job loss, family conflicts, death in the family, etc. Reducing stress and/or developing better stress management skills is vital and effective. Rather than talking it out as women do, men often prefer to reduce stress in different ways, such as through exercise, better nutrition & hydration, relaxation/meditation and/or reducing overscheduling.

Sexual Pain and Muscle Tension

Some men with IC and CP/CPPS struggle with sexual dysfunction, including pain with ejaculation, erec- tile dysfunction and/or a lack of confidence in the ability to maintain an erection. Most clinicians believe that this is the result of pelvic floor muscle dysfunction.

If the muscles are tight and tender, it makes sense that ejaculation would provoke the most discomfort because that is when the strongest muscle spasm occurs. On the other hand, if the muscles are weak maintaining an erection can become difficult. The good news is that pelvic floor dysfunc- tion can be treated successfully with physical therapy. In a study of 55 impotent men, 40% of those who practiced pelvic floor exercises every day for six months regained normal function.9

It’s worth noting, however, that there are many other potential causes of erectile dysfunction that should be ruled out. Erectile dysfunction is one of the early warning signs of heart dis-ease. Atherosclerosis, a blockage of the arteries that can occur not only near the heart but also in the pudendal and hemorrhoidal arteries, can limit blood supply to the penis. Low testosterone, often the result of obesity, can result in ED. Both hyper and hypothyroidism should also be ruled out.

Dr. Heather Howard, a clinical sex- ologist in San Francisco, represents a new emerging medical specialty, therapists who work with individuals and couples who suffer from a short or long term medical condition that impacts sexuality. She offered:

“If you experience physical pain, you might consider yourself lucky to be able to do just one thing on a regular basis that brings both you and your partner pleasure. You might choose to endure the least painful sexual option to satisfy your partner, or you might choose to avoid any touch because it could lead to painful sexual activity. If you are feeling like your options are limited, working with a clinical sexologist who understands chronic pain can help you to expand your options and find satisfying sexual activities for both you and your partner.”10

In addition to emotional support, sexologists like Dr. Howard can provide practical information, suggestions and advice on how to reclaim and restore sexuality and intimacy. They are certainly worth consulting if sexuality is becoming a struggle.

Depression & Anxiety are Common

The UPOINT phenotyping program for chronic pelvic pain uses depression and catastrophizing as one of its assess- ment criteria because multiple studies over the years have confirmed that depression and/or anxiety are fairly common in men and women struggling with interstitial cystitis and chronic pelvic pain syndrome; one study showed that 13% of men with CP/CPPS and 23% of women with IC had depression and/or panic disorder.11

Left untreated, depression and anxiety can not only worsen a patients quality of life, but also their bladder symptoms. Thus, compassionate and prompt treatment is essential. Men, however, often find it difficult to reveal that they are struggling.

One of the mysteries currently under study is why patients with depression and anxiety disorder appear to be more prone to develop bladder disorders like IC. The answer could be simple genetics. Researchers studying anxiety disorder made an unusual discovery. In a genetic linkage study, they determined that some families with a high rate of panic disorder also had high rates of bladder problems, thyroid disorders, migraine and/or mitral valve prolapse suggesting a strong genetic connection.

Urology researchers were intrigued by those results and sought to determine if IC patients had a similar corre- lation of related conditions which, indeed, they did. Patients with IC and their first degree relatives had a significantly higher prevalence of panic disorder and other disorders of a possible autonomic origin.12 Thus, for men struggling with anxiety or depression, it’s important that they know that this is not their fault. It could simply be genetics.

Men and women experience depression quite differently. According to the NIMH, “men are more likely to feel tired, irritable and to to lose interest in their work, family and hobbies…and although women with depression are more likely to attempt suicide, men are more likely to die by suicide.”13

The good news? Depression is very treatable! The first step is working with a medical professional (i.e. your doctor or a mental health professional) so that some basic lab tests can be performed that might rule out another cause for the depression. My brother, for example, was not a particularly happy, social guy for much of his 20’s and 30’s. Yes, he was out of the Navy, in grad school and starting a career as a college professor but a trip to the physician determined that he actually had low thyroid levels that his doctor thought were genetic. (All the women in our family have hypothyroidism. He is the first man who was diagnosed.) The change in his emotional health and personality could not have been more dramatic. After beginning thyroid therapy, he was happier, more social, better able to focus and really enjoy on his career. Thus, it’s worth verifying that no other medical conditions are in the mix.

A variety of medications are certainly available for both depression and anxiety but asking for a referral for a class (i.e. Phobease, Anxiety Management, Stress Management) or some support services from a counselor is essential, especially if you don’t have good support at home.

Some spouses don’t understand or believe that many struggles of IC. One man called our office in tears after his wife called him a failure for going out on disability. In our eyes, she was the failure. Accidents and illnesses are a fact of life and the vow “in sickness and in health” is how we hope most spouses will treat any disease, whether it be IC, cancer or a broken hip. Their role is to provide support and nurturing to the injured or ill spouse. Thus, if you aren’t getting the support that you need, it’s very important that you find someone to talk with, whether it be a good friend, minister, psychologist or med- ical professional.

Improving diet and nutrition can also help improve your mental outlook. Researchers at Ohio State University found that the consumption of Omega 3 fish oils not only decreased inflammation but also anxiety disorder.They encouraged eating foods that are high in omega 3’s such as salmon, flax seeds, walnuts and scallops.14

Most patients with IC have moments when they feel as if they have done something wrong. For men, this is particularly important because men often carry the weight and burden of their families on their shoulders. They are taught that it’s their responsibility to fix things and when some- thing occurs that they can’t fix, this can create tremendous stress and shame. As a support group leader, I remind patients that there is no shame nor blame attached to IC. This is not your fault and you should not carry that extra burden on your shoulders. Be gentle to yourself. Developing IC is like being in a car accident, it just happened.

If you have a moment where you feel especially vulnerable and/or might be struggling with suicidal thoughts, please call your doctor. They need to know that your IC has become over- whelming. You can also call the National Suicide Prevention Lifeline at: 1-800-273-8255.

References

  1. “The Prevalence and Overlap of Interstitial Cystitis/Bladder Pain Syndrome and Chronic Prostatitis/Chronic Pelvic Pain Syndrome in Men: Results of the RAND Interstitial Cystitis Epidemiology Male Study” The Journal of Urology, Volume 187, Issue 4, Supplement, Pages e29–e30, April 2012.
  2. Moldwin R. Interstitial Cystitis Survival Guide. New Harbinger Publications 2000 p. 131
  3. “AUA Guidelines Diagnosis and Treatment of Interstitial Cystitis”. American Urological Association. 2011. Retrieved 18 October 2012.
  4. Antolak SJ, et al. Therapeutic injections of the pudendal nerve define the symptoms of noninflam- matory chronic pelvic pain syndrome. Western AUA Section Meeting Abstract – October 2002
  5. Filler A. Diagnosis and treatment of pudendal nerve entrapment syndrome subtypes: imaging, injections, and minimal access surgery. Neurosurg Focus. 2009 Feb;26(2):E9.
  6. Filler A, Diagnosis and treatment of pudendal nerve entrapment syndrome subtypes: imaging, injections, and minimal access surgery. Neurosurg Focus. 2009 Feb;26(2):E9.
  7. Friedlander J. et al. Diet and its role in inter- stitial cystitis/bladder pain syndrome (IC/BPS) and comorbid conditions. BJU International. BJU Int.
    2012 Jan 11.
  8. Rothrock NE, et al. Stress and symptoms in patients with interstitial cystitis: a life stress model. Urology. 2001 Mar;57(3):422-7.
  9. Dailey K. “9 Rules for Stronger Erections” Men’s Health website. http://www.menshealth.com/ mhlists/rules_for_erections/
  10. Howard H. “Pelvic Pain” Center for Sexual Health & Rehabilitation website. http://sexualrehab.com/About-Pelvic-Pain.html
  11. Clemens JQ, et al. Mental health diagnoses in patients with IC/BPS and CP/CPPS: a case/control study. J Urol. 2008 Oct;180(4):1378-82
  12. Theoharides, T. Panic Disorder, Interstitial Cystitis and mast cells. J Clin Psychopharmacol 2004;24:361-364
  13. “Men and Depression.” US Dept. of HHS, National Institute of Mental Health Publication #QF11-5300
  14. Osborne J. “Self-Help Tip: Reducing Anxiety & Inflammation with Omega-3’s” Interstitial Cystitis Network E-Newsletter, November 2011
    

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.

2 Comments

  1. bchboy328 May 10, 2014 at 9:04 pm

    Amazing documentary. I got my second wife (still newly weds) to read this. My step by step struggles to find a diagnosis was almost indentical. I went to a clinic due to strong urge and frequency along with some pain. A prostate exam revealed a bad infection of my prostate. I was put on Cipro for two weeks, and then back to same doctor after symptoms persisted. Another dose of Cipro (this time for 4 weeks). At the end of those four weeks I started to notice pain as bladder filled and emptied with slight relief after urination. This is when I went to a urologists and he found mcroscopic amounts of blood in urine but no infection or sign of in my urine. Months would go by with a myriad of tests including (urine retention using ultrasound I think, an ultrasound of my prostate, and another round of antibiotics(doxycycline) for three months, etc). Then the urologists after an initial diagnosis of chronic prostatitis he decided to do a hydro with cystoscope and biopsy. Two weeks later the lab results confirmed a diagnosis of IC. Then the Instills started along with Elmiron (which I am no longer capable of handling due to side effects of GERD and Acute Gastritis after GI tests done at another clinic. And this was after taking Elmiron for over three years at 3times a day. As the years progressed the pain increased and the urgency and frequency would vary. I was put on Tramadol, Hydroxizine, and Amtriptyline along with Gelnique which did help some. The little help lets me somewhat function during the course of my day, but sex is an almost no go as it causes a severe flare afterward. Unfortunately doing any kind of physical activity usually causes flares. I was a police officer when initially diagnosed which just under a year from initial visit with urologists for prostate infection that would not go away back in 2003.

    I have ups and downs with my IC, but this past January of 2013 to May 2013 was the most excruciating at which time my urologists office put me out on medical leave in order to try to hel calm my bladder (by not having to wear duty belt and vest with the added weight). My usual routine prior to this leave during the past few years would consist of me staying in bed on all of my days off just to be able to continue to work. I have tried homeopathic approaches, gabapentin, and other medicines as well. None worked and some just gave me too many side effects.

    I filed for medical disability/retirement in May, and was forced to leave my employment early as paperwork was delayed until August before a review was started. I received good news in December, and was finally awarded my medical retirement after 16.5 years of service. I would say I still have good days and bad even after retirement. Having arthritis in both hips doesn’t help much either. I believe not having to sit for long periods, carry all that extra weight and stress on pelvic area, and much reduced stress will eventually and hopefully put my IC in remission. But I have not seen it to this date. So I just continue to take my Tramadol, Amtryptiline, and hydroxizine nightly to at least let me function somewhat normally (have a life). I do appreciate what you and your website have done for those of us who struggle with IC on a daily basis.

  2. rado10 May 15, 2014 at 3:51 pm

    Please put this in male forum if there is oneTook me 6 years of Pain and 2 unnecessary operations before I was dianosed with IC and Hunners ulcers. Got a fliguration and hydroextension at the Mayo Clinic in Jax ,Fl that gave me relief for 3 months before the ulcers came back. I got no followup after my operation and n suggestion of taking Elmiron to help keep the ulcers from coming back. I could not even get a scriptfor Elivil,hydrozine or some kind of lodocaine cocktail to help my pain instead I was given sliver nitrate to take for a week one of the few items the Aul says not to take , waht a dissapointment they were all they want to do is cut your bladderout put a hole in your side and a bag on you leg.There are no IC doctors in Jacksonville Fl. Had to go to Atlanta. Insurance drug plans are such a bad joke the only pain relief I get recently was the Parsons cocktail from Innovating Compounding,My so called insurance wouln’t cover 1 penny of it,I appealed to Medco only to be denied.Things are just fundmentally wrong if your on Medicare do not get First Life and Health medco.Does anyone on Medicare have a insurance that pays for cocktails that actually relief our pain made by Compounding Pharmacies. Also has anone discovered a cure for the burning pain that males with IC get at the moment of orgasam instead of fireworksI am trying ivalium suppositores

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