IC Awareness Month!
En Uppdatering!
Still going strong...
Mat App för IC!
Livet går vidare...
Vägen ut ur Smärta!
Hej alla IC-vänner!
Kämpar!
Bakterier!
Tack Frihetslängtan och Joker för erat otroligt informativa och fantastisk bra inägg om bakterier och odlingar! Det är ju helt galet att du (Joker) gått med en bakteriell infektion i 7 år utan att någon har förstått det inom sjukvården. Låter som en anmälan vore på sin plats och skadestånd på det!!! Jag blir så arg så jag hittar inte ens ord för det och att de har sagt att det sitter i huvudet känner jag så väl igen, har fått höra det så många gånger och för varje gång bryter det ner mig mer och mer. Det är fruktansvärt vad vi får utstå. Varför bli läkare när man saknar vilja att hjälpa och läka människor? Det ni har kommit fram till är ju verkligen revolutionerande och en fantastisk upptäckt! Jag och alla här vill gärna veta hur ni mår båda två efter behandling med antibiotika, om IC-besvären försvinner eller finns kvar! Jag håller tummarna!!! Så underbart det skulle vara, om IC visade sig bero på en bakterie trots allt, som går att bota med antibiotika! Jag skulle gärna vilja pröva de här avancerade odlingarna själv, jag vet bara inte vart jag skulle vända mig och hur jag skulle orka kämpa för att få igenom det. Men egentligen borde vi alla pröva detta! Här kan ni läsa Jokers och Frihetslängtans inlägg om ni inte redan gjort det!
Hej, jag sitter här med "Frihetslängtan"bredvid mig och vi tillsammans har något vi vill berätta för er. Jag "Joker" har gått med en bakteriell infektion i buken i 9 år. Jag har haft svåra urinvägsbesvär, med uretrit och diagnosen IC men också har jag haft kladdiga utrensningar genom urinvägarna. Slemmig urin som jag får krysta ut. Jag har hela tiden undrat och frågat vad det här slemmet är och vad det beror på. Men ingen urolog/gynekolog har trott mig utan sagt att "det sitter i huvet". Tillslut efter 9 år med detta vidriga kom jag till infektion på Huddinge. Där fick jag träffa den första intresserade läkaren som faktiskt lyssnade på mig! Hon sa att beskriver du det så, så är det så. Och gjorde en utökad odling på mig. Efter 7 dagar syns en bakterie som heter " Actinomyces Turicensis" på mig. Hon berättade att det ibland behövs göras både två och tre odlingar innan man ser bakterier. Ibland kan det ta upp till sex veckor för vissa bakterier att synas. De vanliga odlingarna ligger i två dygn!! Vilket då gjorts tidigare på mig genom åren och man har aldrig funnit någon infektion. I stället har man valt att operera bort min livmoder i onödan.
Så här gjordes min utökade urinodling på Infektion på Huddinge; jag fick lämna in sex odlingar. Morgon urin skulle det vara i alla. Två större plast kärl och fyra vanliga rör. Den lämnades in och efter att bakterien upptäcktes på den sjunde dagen, på tre av sex odlingar men lämnades kvar i ytterligare fem veckor för videre odling. Infektionsläkaren berättade att hon ringde till labb och bad om att de skulle särskilja den vanliga uretrafloran för att kunna se om bakterier gömde sig bakom den vanliga floran. Och det gjorde det! Fantastiskt att äntligen få veta vad jag suttit och krystat ut i åratal då denna bakterie sätter sig kroniskt. Jag har fått den av vården då den kan komma vid ingrepp t ex kirurgi. Eller som jag, när jag födde barn på Danderyd i mars-02, efter det kom dessa kladdiga utrensningar.
Infektionsläkaren berättade vidare för mig att urologerna inte känner till detta sätta att odla! Jag känner igen era historier om hur det är att bli illa behandlad, kränkt och förnedrad av urologer förrutom att försöka kämpa med den sjukdom som man dras med. Många gånger har jag önskat att jag slapp leva. Jag har fått installationer med silverklorid (blev mkt sämre) och outspädd DMSO (läkaren glömde skriva att den skulle spädas innan installation) vilket gjorde att jag blev mkt sämre i blåsan. På gyn på Danderyd när jag tagit bort min livmoder sa han till mig "att blir du inte bra nu, så kan du inte komma tillbaka. Vi har gjort vad vi kan här."
Jag har fått höra av urolog på Huddinge när jag beskrivit mina symptom att "det du har finns inte. Man kan inte ha slemmig urin. Det sitter i huvudet." Jag började då att gråta för att jag kände stor rädsla och frustration då han inte lyssnade på mig och då tittar han på mig och säger "Psykakuten är en trappa ner." Vidare berättar han om sin fru, som blivit "lite deprimerad" efter hon fött barn och fått antidepressivt och blivit bättre. Diskriminering att dra alla kvinnor över en kam, vad hade han gjort och sagt om jag varit en man? Hade han gjort en ordentlig utredning på mig då?
Frihetslängtan:
Med vetskapen om hur infektionsläkaren hade hjälpt "Joker" så vände jag mig också till en infektionklinik. Där jag berättade för den läkaren hur de hade gjort på Joker. De ställde sig lite frågande men jag fick igenom odlingarna. Och jag lämnade även in en större mängd urin. På tredje odlingen på den fjärde dagen, visades det sig att jag hade streptokocker och man fann också ureaplasma urealyticum via PCR teknik. Detta är ju mycket intressant då man har gjort otaliga odlingar på mig genom åren, och aldrig funnit något. Har nu påbörjat antibiotika behandling för detta, och det ska bli jätte intressant att se hur mina urinvägar mår efter detta. Om jag blir frisk eller om jag fortfarande har problem. Så både "Joker" och jag kommer tillbaka och berättar hur det går för oss. Det viktiga och intressanta i det här är att hos oss har man funnit bakterier på fjärde resp sjunde dagen. Urologerna har sagt till oss bägge att det är ett inflammatoriskt tillstånd och inte bakteriellt. Vi har bägge symptombilden av PBS/BPS-IC. Vi har bägge haft synlig inflammation i slemhinnan, känsligheter och reaktioner på födoämnen, frossa etc Den enda skillnaden mellan oss är de slemmiga utrensningar som funnits hos Joker. Vi vill uppmuntra alla att få igenom, och kräva en ordenlig bakteriell utredning hos en Infektionsklinik.(eftersom urologerna uppenbarligen inte har någon koll på detta.) Vet att folk även tidigare har sökt sig till infektion med dessa problem, men det gäller att påtala att det ska odlas på detta sätt.
Vi vill gärna hjälpa andra så de inte råkar lika illa ut som vi gjort i vården, och vi vill att detta ska komma ut och spridas. Hör gärna av er och berätta hur det går för er, om det finns fler som går med bakterier p g a otillräckliga odlingar.
Kram och Lycka till!
Hej där!
Bli en IC-Diva!
Lessons From an IC Diva
How I’ve Learned to be Happy After 30 Years with IC.
by Nyeema
Det här fick jag i mailen från IC-Network! En kvinna som har levt med IC i 30 år och delar med sig av sina bästa tips på ett väldigt positivt och härligt sätt. Det kan vara väldigt svårt att hitta en sån positiv attityd när man har det så jobbigt som vi har det, men kanske kan vi fånga upp något av det hon skriver om! Kram från Silverfox!
I define IC diva as an IC survivor who manages to get through their life with grace and dignity.
THE IC OPTIMIST • SPRING 11 • 5
We IC divas have no regrets and no apolo- gies about our bladder condition and all the issues related to it.
I call myself an IC diva. In actual- ity I am part diva part hippie (a dip- pie!?) I didn’t research the true meaning of the word, “diva.” I made up my own definition. I define IC diva as an IC survivor who manages to get through their life with grace and dignity. We IC divas have no regrets and no apologies about our bladder condition and all the issues related to it. We trudge on...in heels if we can. At this age, I am mostly in flats and wedges. Yet I trudge, rather, I strut on learning lessons along the path to a more joyful life. Joy Now is my motto.
This article is dedicated to the young IC divas who are trying to bal- ance family, fun, fitness, love and career while dealing day in and day out with IC. What I am about to share with you will save you much trial and error. Though I consider myself to be ‘a work in progress’ there are things I have learned that have
made my life more joyful. Take heed and take notes.
Over the years I’ve created an unwritten checklist of traits folks must have and traits they must not have if I’m going to spend time with them. Not everyone can handle the privilege of spending time with an IC diva. I have such ‘checklists’ about many things in my life. After much experience I’ve found that some jobs, just like some people, are more com- patible with IC divas. There are characteristics that define good friends, good jobs, etc. Finding these good things in your life will help you on your own path to a more joyful existence. Here is what I have learned, from one IC diva to anoth- er:
Good Friends
Your “good friends” don’t roll their eyes or stand at the restroom entrance and yell, “Did you fall in?”
when you use the bathroom in every store at the mall. In fact, your good friends don’t care if you pop a squat wherever whenever. Mine will gladly play ‘look-out’ to see if anyone’s com- ing up the trail as I take care of busi- ness behind the bushes.
I am thoughtful when asking folks to wait for me so I try to be strategic and speedy. If we are near a restroom, wherever we are, I will usually take advantage of this and use it. And with as much pop a squat experience as I have, I am pretty darn quick about it too. I will usually take opportunities to run to the restroom while my friends are occupied with other things. As they walk to the cashier line, I run to the bathroom. Folks that comment constantly or huff and puff when I say, “I’ll meet you in the cashier line” don’t get to spend time with me again.
Good friends couldn’t care less about how many times you go to the
4 • THE IC OPTIMIST • SPRING 11bathroom. They understand and will gladly hold your bags and wait for you while on the look out for good buys or good food.
Good Job, Good Co-Workers
(psychos vs. sympathizers)
The “good job” doesn’t care that you are in the bathroom every half hour to an hour. They appreciate you as a hard worker and trust that you will get the job done. Good co-work- ers are the ones who also realize that you run to the restroom a lot and their reaction is, “So what?”
Co-workers who are to be avoided are the ones who have a restroom scorecard. They seem to keep better track of your bathroom trips than you do. And...they just won’t shut up about it! Comments like, “Wow, you sure go to the bathroom a lot!” or “Didn’t you just go to the bathroom?” really get on my nerves.
I don’t always “come out of the (water) closet” with my IC. If I have a close relationship with a co-worker, I may confide in them. Usually peo- ple find out once they have shared their scorecard with me once too many times. My general response to these psychos is, “Yeah, I pee a lot. It’s just my thing.” My facial expression and tone send the most important message: “Get a better hobby and don’t ever mention this to me again!”
Now, I realize that some people do actually care and want to know if I am ok. You can usually separate these sympathetic co-workers from the psychos. My experience has been that some folks are just bored, nosy and unhappy. These are the co-work- ers who tend to gossip and are always trying to find out how much personal information you will share. And then they run with it. It’s best to set your boundaries with these types right away or they can make your work life miserable. Try my psycho co-worker response mentioned above then ignore them.
The “best job” is one you can do from home and manage on your own terms. If your IC enables you to spend more time at home, be cre-
ative about the talents you have to offer the world and start your own business. Note the quote, “IC enables you to spend more time at home.” Sometimes being homebound can truly be a blessing in disguise. Work from home can be rewarding and ful- filling. You may be surprised at your ingenuity and entrepreneurial spirit. Some of our best talents are ones we take for granted. Get advice from trusted loved ones. Others may be better at seeing your talents than you are. Brainstorm, research and stay encouraged. You’ll find your niche.
Good Partner
Your “good partner” rubs your feet when you are flaring or just because they know it can be hard to get through an IC day of bathroom trips and pain surges. At a movie or any performance they are more than happy to sit on the aisle with you, facilitating bathroom runs. (Don’t you hate stepping on toes as you cross in front of folks at the movies?) When you cancel plans to go out due to IC related issues, your good part- ner will make dinner and wash dish- es afterwards. Many a night I have said, “No” to a night of long awaited love making. In response, my good partner is happy to hold me in his arms and make me laugh when I really wanted to cry. (Tears because I am in so much pain and tears because I sure hate to pass up an amorous encounter with my lover!) Yes, I really do have a partner like this and hopefully you do too. Hang in there single ladies and don’t settle for less. Life is too short.
Good Kids
“Good kids” help out extra when they see you are in pain...even if you think you’re hiding it well. If they’re old enough your kids have been around you enough to know when you’re not feeling well. When you say, “I’m going to lie down. I’m really tired for some reason.” They translate that into: “Mom’s IC had her up all night and running to the bathroom all day and that’s why she needs to lie
down.” They are aware you’re in pain and they really can understand. As selfish as teenagers may seem, they love you and want to help.
Sometimes they are just waiting for you to ask for help so they can feel like they can do something for you. My son warms my heating pad, better known as “my comfy thing,” on a regular basis.
We are our children’s best teach- ers. Do them a favor and teach them to care for others. Teach them empa- thy. Ask for help.
Be Good to Yourself
Most important of all, IC divas:
forgive yourself for not making it to all the parties, festivals and other events that you may not always feel well enough to attend. Not everyday is an aerobic exercise day. It’s ok, eat less and do a little extra exercise next time. Appreciate the here and now no matter what it brings.
Sometimes the pain has to become life affirming. I know it sounds crazy. (Who really wants pain in their life?) But since we have it, let’s allow it to teach us something.
My pain teaches me that I’m still here and I’m strong enough to get through it without resentment, with- out guilt and with true peace and love in my heart and gratitude for the life I have. I know it sounds like a load of crap. This is the hardest part and it doesn’t always come easy. It’s work but it takes a huge unde- served load off of your shoulders and allows you to just take care of your-
self and get better. It is the best thing you can do for your mental health. So, forgive yourself so you can move on to healing. Sometimes my best medicine is to forgive myself then relax in a comfy chair, with a hot pack and a comedy DVD!
Conclusion
The things I have just discussed are not ideals. They are realities for me. I admit am always working on the guilt and gratitude part!
Sometimes when I am in the midst of severe pain or staying at home when I have been looking for- ward to attending an event it’s a challenge to be grateful and not feel like I am letting someone down (including myself). But I am a work in progress and far from perfect. Believe me it’s taken 50+ years to get where I am.
All the info I’ve given here comes from me working toward living a happier life on a daily basis. I make an effort each day to move further and further towards joy and away from whatever it is that makes my
life less joyful. I hope that these things I have shared will help you make you’re life happier right now, whatever your age. Joy Now.
Author
Nyeema is an IC diva and tree- hugging hippie who gets pedicures in massage chairs as often as possible (“Excuse me, but before you polish, I need to go to the restroom”). She also enjoys the outdoors and gardening. She was diagnosed with Interstitial Cystitis at 20 years old and at 50+ (who’s counting?) is focused on her f’s: family, fun, fitness, fabulousness (yes, it’s a word) and financial freedom. (Feel free to add another f). How’s your f’s?
Breaking News!
lease help us share this vital new resource by printing both this summary and the guidelines out to share with all of your medical care providers.
Download the AUA Guidelines here!
What is an AUA Guideline?
With its mission of improving the knowledge of urologists around the USA, the AUA occasionally releases documents that assist urologists in the diagnosis and treatment of various urologic diseases. We are thrilled that they devoted almost two years to the creation of a new set of guidelines for interstitial cystitis. They are intended to instruct clinicians and patients how to recognize IC/BPS, make a valid diagnosis and evaluate potential treatments.
Why is it important?
Have you ever had a physician tell you that there were no treatments for IC or a family member who said that IC was a figment of your imagination? How about a physician who refuses to provide pain care? This document provides desperately needed education for medical care providers, patients, family members and the community at large.
Who drafted it?
In 2008, the American Urology Association convened a diverse panel of more than a dozen IC researchers and medical care providers to draft the guidelines. The effort was led by panel chairman Phil Hanno MD (Univ. of PA). An additional 84 peer reviewers reviewed the final document before it was approved by the AUA Board of Directors in January 2011. None of the participants were compensated by AUA for their work.
How was it created?
The panel performed a systematic review of IC research studies published from 1983 through July 2009. Using this research "evidence" as well as "clinical principles" and "expert opinions" offered by the panelists, the guidelines consist of 27 statements to guide a patient through diagnosis and treatment.
What's their definition of IC/BPS?
They chose to use the definition first established by the Society for Urodynamics and Female Urology.
"An unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes."
Is IC more than just a bladder disease?
Citing several studies which explored the related conditions found in IC patients, the authors explored several theories, one of which is "IC/BPS is a member of a family of hypersensitivity disorders which affects the bladder and other somatic/visceral organs, and has many overlapping symptoms and pathophysiology." IC could be a primary bladder disorder in some patients and yet, for others, may have occurred as the result of another medical condition. The answer remains elusive.
Symptoms
The guideline emphasizes pain as the hallmark symptom of IC/BPS, particularly pain related to bladder filling. Pain can also occur in the urethra, vulva, vagina, rectum and/or throughout the pelvis. Urinary frequency is found in 92% of patients with IC/BPS.
Urgency is an often debated symptom because it is the primary symptom of overactive bladder, a condition often confused with IC. Yet, the authors make a critical distinction. Patients with IC experience urgency and then rush to the restroom to avoid or reduce pain whereas patients with OAB experience urgency and rush to the restroom to avoid having an accident or becoming incontinent.
Diagnosis - Hydrodistentions No Longer The Standard
The authors urge clinicians to perform a thorough history and physical examination of the patient. Symptoms should be present at least six weeks in the absence of infection for a diagnosis to be made. A physical examination of the pelvis should be conducted for both men and women and "the pelvic floor should be palpated for locations of tenderness and trigger points."
Several conditions should be ruled out, including bladder infection, bladder stones, vaginitis, prostatitis and, in patients with a history of smoking, bladder cancer. Additional testing, however, should be weighed with respect to their potential risks vs. benefits. They offer "In general, additional tests should be undertaken only if the findings will alter the treatment approach." Cystoscopy and urodynamics, for example, are to be considered if a diagnosis of IC is not clear. The authors do note that cystoscopy helps to rule out other conditions which can mimic IC symptoms, such as bladder cancer or stones.
The presence of Hunner's ulcers on the bladder wall will lead to a diagnosis of IC however the finding of glomerulations on the bladder wall during hydrodistention with cystoscopy is often vague, variable and consistent with other bladder conditions, thus the panel suggests that "hydrodistention is not necessary for routine clinical use to establish a diagnosis of IC/BPS." Hunner's ulcers are described in an acute phase "as an inflamed, friable, denuded area" or in a more chronic phase "blanched, non-bleeding area."
Pain Management
The guidelines are extremely proactive when it comes to pain acknowledgement and management. The authors offered "Pain management should be continually assessed for effectiveness because of its importance to quality of life. If pain management is inadequate, then consideration should be given to a multidisciplinary approach and the patient referred appropriately."
Pain management can include the use of various medications, physical therapy and/or the relaxation of tense, painful muscles, biofeedback and a wide variety of other options. The guidelines encourage physicians to refer patients to other pain specialists if they are unable to provide an effective pain management strategy.
Treatment Goals & Principles
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, the panelists suggest that treatment should begin with generally safe "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.
Grade A = have well-conducted clinical trials and/or exceptionally strong observational studies.
Grade B = have clinical trials that have weaknesses in their procedures or generally strong observational studies.
Grade C = have observational studies that are inconsistent, small or have other problems which could influence the data.
Specific treatment choices should depend upon the patients current symptoms, patient preference and clinician judgement. In addition, it is not unusual for patients to be using multiple, concurrent treatments. If patients have not shown improvement in their symptoms after multiple treatments, the panelists suggest that the diagnosis of IC should be revisited to determine if another underlying disorder (i.e such as pudendal nerve entrapment, endometriosis, etc.) could be present.
The guidelines emphasize the importance of evaluation and tracking a patients progress using a voiding diary and/or other surveys. They suggest that ineffective treatments be stopped after a "clinically meaningful interval." Only effective treatments should be continued.
First Line Treatments - Should be offered to all patients
- Patient Education - Patients should be educated about normal bladder function, what is known about IC and that multiple therapies may need to be tried in order to find symptom relief.
- Self-care - Patients should learn about and avoid specific behaviors that can either worsen or give them more control over their symptoms, including: water intake, diet modification to avoid irritating foods and common flare management methods (i.e. the use of heat or cold to relax pelvic floor muscles, the use of meditation or guided imagery to reduce muscle tension, the avoidance of some exercises, tight fitting clothing, constipation treatment, etc.)
- Stress Management - While stress does not cause IC, it is well known to increase IC symptoms and heighten pain sensitivity. The guidelines encourage patients to be aware of their overall stress levels. Stress management and/or better coping techniques should be practiced regularly, perhaps through use of stress management classes and/or the help of a counselor as needed.
(Editors note - A study released in early 2011 found that cats struggling with feline interstitial cystitis experienced a reduction of their symptoms and became healthier when their stress levels were reduced. This comes as no surprise to the vast majority of patients who have learned, first hand, that high stress can trigger an IC flare. Source: Stella JL, Lord LK, Buffington CA. Sickness behaviors in response to unusual external events in healthy cats and cats with feline interstitial cystitis. Journal of the American Veterinary Medical Association. 238; 67-73, 2011)
Second-Line Treatments
- Physical Therapy - If experience and knowledgeable physical therapy staff are available, appropriate physical therapy techniques should be used "to resolve pelvic, abdominal and/or hip muscular trigger points, lengthen muscle contractures and release painful scars or other connective tissue restrictions."Kegel exercises and exercises aimed at strengthening the pelvic floor are NOT recommended. Why? In pelvic floor dysfunction, muscles are often too tight and kegel exercises act to increase rather than reduce muscle tension.
(Editors Note - Two books are available which describe pelvic floor treatment in depth, including a variety of home exercises that can be used to resolve symptoms. Ending Female Pain by Isa Herrera PT and Heal Pelvic Pain by Amy Stein PT)
- Pain Management - "Pain management should be an integral part of the treatment approach and should be assessed at each clinical enoucnter for effectiveness," the guidelines encourage. With respect to the use of pain medications, such as narcotics, the authors suggest that while the risk of tolerance and dependence is possible, only rarely does addiction occur. They offer "It is clear that many patients benefit from narcotic analgesia as part of a comprehensive program to manage pain." Yet, they also state that the use of pain medication alone does not constitute a sufficient treatment plan. Pain management should be just one component of treatment.
- Oral Medication Options
- Amitriptyline (aka Elavil) has several studies reporting strong success in reducing IC symptoms yet side effects were highly likely with the potential of disrupting a patients quality of life, particularly sedation, drowsiness or nausea. Side effects were the primary reason why patients stopped using the medication. Grade B
- Cimetidine (aka Tagamet) acts to inhibit acid production in the stomach. Two long term studies reported that 44% to 57% of patients experienced improvement in their symptoms with no adverse events reported, making this a viable second line strategy. Grade B
- Hydoxyzine (aka Vistaril, Atarax) had mixed research studies, one of which reported that 92% of patients experienced improvement yet those participating patients also had systemic allergies. Other studies found much more modest effectiveness (i.e. 23%). Adverse events were common and generally not serious. Grade C
- Pentosan polysulfate (aka Elmiron), the only oral FDA approved for IC, is the most studied medication currently use with five placebo controlled clinical trials. The results were clinical significantly (21 to 56% effectiveness). Roughly 10 to 20% of patients experienced side effects that were "generally not serious." Pentosan may have a lower efficacy in treating patients with Hunner's Ulcers. Grade B.
- Bladder Instillation Options
- DMSO (aka RIMSO-50), the only FDA approved bladder instillation for IC, is one of three considered a second-line therapy. Several studies were reviewed with various levels of success ranging from 25% to 90%. "If DMSO is used, then the panel suggests limiting instillation dwell time to 15-20 minutes" because longer dwell times are associated with more significant pain. Grade C
- Heparin instillations have been studied using various concentrations and treatment modalities (i.e. 10,000 IU heparin in 10cm3 sterile water 3x per week or 25,000 IU in 5 ml of distilled water 2x per week) with intriguing results. The 10,000 IU study showed a 56% improvement at 3 months, whereas the 25,000 IU study showed a 72.5% improvement at 3 months. No placebo controlled studies have been done. Adverse events were infrequent and apparently minor. Heparin is frequently combined lidocaine to create an instillation popularly known as a "rescue instillation." Grade C
- Lidocaine instillations have also been studied in various dosages, cocktails and/or treatment schedules. The guidelines include several formulas for various cocktails that can be used, often including sodium bicarbonate, heparin, lidocaine and/or triamcinolone. Adverse events were typically not serious, earning this treatment option a Grade B
Third-Line Treatments
- Hydrodistention with cystoscopy may be considered if first or second line treatments have no provided relief. The panel ONLY recommends low-pressure (60-80 cm H2O) and short duration (less than 10 minutes) procedures to reduce the risk of bladder rupture. Grade C
- Hunner's ulcers can be treated with fulguration (laser or electrocautery) and/or by injection oftriamcinolone into the ulcer . One observational study reported 100% pain relief and 70% reduced frequency from 2 to 42 months after heat treatment. Laser studies showed similar effectiveness however, in both cases, ulcers may require additional treatment. One triamcinolone treatment reported that 70% of patients experienced a sustained improvement over 7 to 12 months. Grade C
Fourth-Line Treatments
- Neuromodulation is not FDA approved for IC treatment but has been used for the treatment of frequency urgency. Neuromodulation can occur at the sacral or pudendal nerve with studies confirming that pudendal stimulation appeared to provide greater symptom relief. Long term follow up data is not available. Grade C
(Editors Note - We're stunned to see the panelists conclude that adverse events related to neuromodulation appear to be minor and this is the one area of the report that we strongly disagree with. A review of the FDA MAUDE database for adverse events reveals hundreds of severe complications ranging from MRSA infection, difficulty walking, device malfunction and, in the past two years, more than a dozen reports of fatality. We will be inquiring of the panel if they are aware of this federal adverse event data.)
Fifth-Line Treatments
- Cyclosporine A is an immunosuppresant that has been studied in two small trials with IC patients with solid results. One study compared CyA with pentosan and reported a 75% improvement in patients using cyclosporine, as well as a 50% decrease in frequency. The results of two additional studies found sustained pain relief that lasted one year or longer. Unfortunately, there is potential for more severe adverse events, including immunosuppression, nephrotoxicity, high blood pressure, increased serum creatinine and others. Grade C
- Botulinum Toxin (BTX-A) injections into the bladder may be considered if other therapies have not produced improvement, however "the patient must be willing to accept the possibility that intermittent self-catheterization may be necessary-post treatment," often for several months. BTX is not appropriate for patients who cannot self-catheterize. Grade C
Sixth-Line Treatments
- Surgical intervention, such as urinary diversion, substitution cystoplasty or cystectomy, may be considered for patients who have found no relief with all other therapies and/or have developed a severe, unresponsive, fibrotic bladder. "Patients must understand that symptom relief is not guaranteed. Pain can persistent even after cystectomy, especially in nonulcer IC/BPS." Patients with small bladder capacities under anesthesia and the absence of neuropathic pain appear to have a better response to surgical treatment. Grade C
Discontinued Treatments
The panel suggests that the following treatments should not be offered due to the lack of effectiveness found in studies and/or the risk of serious adverse events. In these cases, the risk appears to outweigh the potential benefits.
- Long-term oral antibiotics
- Intravesical Bacillus Calmette Guerin (BCG)
- Intravesical Resiniferatoxin (RTX)
- High pressure, long duration hydrodistentions
- Systemic glucocorticoids
Download The Guidelines
Download the official AUA Guidelines for IC/BPS at:
Ladda ner dem och ge till din urolog! ♥
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Behandling!
(1) Dr. Parsons (UCSD) "Therapeutic Solution"
- 40,000 U heparin
- 8 mL 1% lidocaine or 2% lidocaine
- 3 mL 8.4% sodium bicarbonate
The instillations are used 3 times a week for two weeks and can also be used to fight flares. Results are exceptionally promising. Dr. Parsons reports that he has seen a 94% positive result for patients after just one treatment. For 50% of patients, that lasted between 4 and 40 hours. At the end of two weeks, 80% of patients had a sustained improvement.
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Sist men inte minst en fantastisk video om dem behandlingsmetoder som finns!