The future is looking bright for Interstitial Cystitis patients as new treatment developments are in the works. Thanks to the RAND Interstitial Cystitis Epidemiology (RICE) study, urologists and researchers have discovered that Interstitial Cystitis is more prevalent than once thought and doctors will have better methods to diagnose and treat IC with. Philip M. Hanno, MD, MPH, professor of urology at the University of Pennsylvania in Philadelphia says that the higher rate of prevalence should “stimulate the drug development, since the market may now be large enough for new products to be profitable. It should also spur academic and government-sponsored research to serve this significant population.”
One of the treatment approaches to be further studied is the use of Elavil, or amitriptyline, for the early stages of IC, which is a medication already used to treat the illness. The study is being conducted to help evaluate whether the use of amitriptyline can make a difference in the overall course of the illness if it has been diagnosed and treated in the early stages.
New treatment approaches to be studied include the use of Botox (botulinum toxin A) injections, a Chinese herbal therapy that contains a nerve-targeting plant alkaloid and acupuncture. According to Dr. Hanno:
“These are both very small studies, but they are interesting and may get more researchers interested in doing bigger, placebo-controlled trials or even looking at potential new medications based on Chinese medicine. That session will also include a report from a group of researchers working on phenotyping IC or characterizing different patient groups. It may help us with selecting proper treatments and also learning about what the cause of the disease is.”
Unfortunately, the process of getting new treatments approved is a long and expensive task with several studies, trials, and everything else that’s involved. Interstitial Cystitis patients currently only have one FDA-approved treatment method to rely on for their IC symptoms and that is Elmiron, which was approved back in 1996. It’s time we have more options available to us.
I was diagnosed with IC at the beginning of 2005 after numerous tests and visits to two urologists. The second urologist wanted to definitively diagnose me as having IC by conducting a bladder installation within his office, although I presented most of the classic signs of IC such as painful sex, overactive bladder, food sensitivities, IBS, and vaginal and bladder pain and discomfort. I spent over three years researching both Western and holistic treatments, using my own body as the proverbial guinea pig in the hope of one day helping other women with IC. The main factors in getting my IC to a manageable level include: acupuncture, a strict zero yeast elimination diet, and natural antibiotics. I found that the combination of care from Western and TCM doctors to also play a vital role in my change from a nearly suicidal woman with severe vaginal and bladder pain to someone that barely notices any of the IC-related pain and symptoms mentioned above. I believe that the latest advancements in helping IC patients is both timely and exciting given that there are a least a million women in the U.S. alone who suffer from IC.
Hi carin- can u please tell me exactly which supplements
And diet you followed? Did u take any western meds that
Were helpful?
Thanks
Caroline in chicago
Yes.. I would like to know specifically what the meds were that helped you. Please inform?
I’ve been doing much Internet research on IC and as the disease itself i find so many different “versions” if you will on what it is and how to avoid flares ect!
Is there any real info or guidelines to follow for how to manage flares being that there seems to be a common thing going on here,that a LOT of ICers are now drug sensitive!
Also how much research has gone into looking at how Candida effect the body,including the bladder!
Around the area I live in the Drs look at you all crazy like and dismiss that just like your a crazy person!
Even though from my experience so far NOT ONE understands IC to begin with so why count out any possible cause.
I’m getting little to no help from my medical community and I’m in a flare as I write this!
Tired!
In pain!
Help
Hi This is great news and particularly in the UK where treatment options seems to be poor and confined to ant-spasmodics and if formally diagnosed following invasive testing , elmiron.
I have Interstitial cystitis and what helps me is drinking lots of water, having a bland diet and also a specific brand of aloe Vera capsules. I have also had some success with famotodine. I feel that this antistamine must be effective to reduce inflamation. Attempting to go as long as possible before voiding also seems to calm symptoms. I hope this helps someone.
Rebecca From Michigan November 9, 2016
Also suffering from Interstitial Cystitis. This is one miserable nightmare of a condition to live with. Thought I was cured of this bladder condition, but it came back on me months ago, after suffering depression and stress with the loss of my dog. I also have Candida too.
I have had ic since I was forty. I’m m 56 now. I believe that if you have candida you need to do everything you can to reduce candida. No alcohol or sweets. Eat wholefoods as much as possible. I’m vegan but that came later for other reasons. I also decided that flooding my bladder with water did not work for me. Honestly I’m felt like it just taxed me bladder. And my bladder needed a rest. I have a normal life. In the beginning I didn’t think that was possible.
Linda in Kentucky, I was diagnosed with IC in 2000. I had a high stress corporate job. At that time the doctors were treating me for UTI and the antibiotics were only making me worse. A Nurse practioner told me to go to a uralogist and they did a bladder distinction to diagnose the IC. It’s been 17 years. I take acidophilus, a pro-biotic every day along with 1,500 mg of magnesium tablets. For me I have found that the gel caps bother me. I have been gluten-free, dairy-free and mostly grain free too for 3 years. That has helped out a lot. I flare in the Spring and Fall with the allergies, and with too much acid in my system. It can be an aweful disease to deal with.
I spent over 3 years in horrible pain back in 1993-1997 from undiagnosed IC. It took me going thru 6 urologists before I found a doctor who helped me and didn’t write me off as crazy or drug seeking. I refused to be treated like a Med School cadaver, and you should too.
They tried all kinds of chemical installations, Elmiron had just been approved and made it worse for me, they took a bladder biopsy and that made it 100 times worse for 7 months after (I barely slept and was becoming suicidal trying to raise a teen and keep my job and health insurance). Stress seems to play a HUGE role, I went to anger management classes after 3 of my doctors ganged up on me and force me to go, they said I was an A personality type. I’m glad they forced me to go and learn how to meditate and do visualization.
I had lost 70% of my bladder capacity. The only chemical that ever helped me was instillations of chloropactic (which you have to have general anesthesia for and bladder stretching) But this only gave me a much milder version and then after a few years of this chemical a few times a year I finally got small remission periods.
I managed to get back most of my bladder capacity by doing bladder training (or basically hold your pee till your gonna bust) but in about 2 years it worked and my bladder was a more normal size again.
I found out about a supplement called L-arginine and this was like a miracle for me. But I also gave up JUICE, yes you heard me, JUICE, especially cranberry. I used to drink tons of cranberry juice, some orange juice, apple, grape. I rarely drank a pepsi or other soda. Drinking water made it so much worse too. (And I also developed frequent calcium oxalate kidney stones from not drinking enough water, especially when my bladder was very small from the damage of IC).
I decided to document what I drank and went to Pepsi and Gingerale and my bladder kept getting better. I know, it is weird, but for me, anyway, it worked. I took L-arginine for about 1-2 years and I mostly drink milk or gingerale. I can now drink 3-4 16oz bottles of water a day without pain, but still have to run to the bathroom as that water runs right thru me. I don’t drink cranberry or citrus juice now for almost 20 years and have been in remission. I still take a daily L-arginine. I don’t know if this weird (and a bit unhealthy change in what I drink will work for anyone else, but it got rid of the pain, My urologist said back when he diagnosed me that I was the worse and most severe case he had seen in someone so young. ]
Even sex took a backseat in my life. But the trade off was worth it, cause I’m alive and pain free. I chose this last sacrifice after meeting a woman at support group who was injecting lidocaine into her urethra every time her and her husband had sex and she was still suffering miserably.
I’m saddened to see that they are still only shoving Elmiron at patients and anti-depressants 25 years later. 🙁 Sadly it’s a hit and miss game, but you have to treat it like a food allergy and try taking certain food, drink and physical activity out of your life for a while to see what kind of improvement you get. And I don’t mean for a few weeks or months, I mean like for 6 months to a year. I pray for anyone who suffers from this horrible and painful disease, it can drive you mad, I thought about having my bladder removed early on, but when I read a lot of people suffered ghost pains in their bladder area after surgical removal, I chose not to do it and I’m glad I didn’t. I hope maybe some of my weird experiments listed here might help someone else to find a quiet and normal functioning bladder again. And I never take for granted being able to pee without horrific pain. For me it’s a blessing.
I haven’t had a chloropactin treatment since 2000, that’s 18 years ago. And No, I’m not saying you have to be celibate for the rest of your life, you just can’t have sex like a teenager or 20 something. LOL
Good Luck to everyone and I hope this helps someone.
I have had IC for over 40 years yes 40 years. Here in Australia treatment is limited and doctors who understand even more limited.
There is no financial help for those who want to try Elmeron and out of the financial reach of many . I have tried everything. DMSO awful made me flare for weeks, Bladder stretch I passed blood for about 4 days and was in agony for 3 years !. I have tried antihistomine, but it puts me to sleep, Ditropan, took weeks for my body to accept it, and then it only had minimal positive effects and now 12 months on the effects no longer help. I tried aloe vera capsulas, again cost a fortune and did little to help.Now on Endep, yes it works it really does BUT oh my goodness the side effects are beyond horrendous. Hot flushes, dizzy spells , weight gain, memory loss, so tired I feel like a zombie, huge headaches to name a few things. Just to many to continue. Surely Surely there has to be something that does not have all these side effects that will fix this horrid illness.PLEASE someone out there fine something to help us.
Hi, I was diagnosed 3 years ago with IC. It is a devastating illness!!! Inially I was terrified, as it made it’s debut while. I slept. It is insidious. The pain was so over the top I couldn’t get to the ER fast enough. When it became more frequent in my life & I kept running to the ER, they informed me that I had better learn to manage my pain elsewhere. During this time I had gone to 5 Urologists & finally by the 6th, I found the one I have now, who specializes in IC. One of the other Urologists had told me he couldn’t help me, but gave me some samples of a medicine he said might help. He was right. It’s called Uribel. Without this medicine I would not be able to live a normal life. I take 1 pill every 4 hours. It is a godsend!! But it is extremely expensive!!! Sometimes I get bellyaches (like period pain), but they’re minor compared to what it could be. There are other meds manufacturered by other companies that are in the same category as Uribel, but they’re just as pricey. This medicine turns your pee blue & isn’t covered by Medicare because they won’t cover combination drugs, and it is made up of a combination of drugs. My hope is that this type of medicine would be made available to everyone that suffers from this vile disorder.
Interstitial cystitis/bladder pain syndrome (IC/BPS) is a chronic pelvic pain syndrome characterized by pain, pressure, or discomfort perceived to be related to the urinary bladder, that lasts more than 6 months with at least one other urinary symptom such as frequency or persistent urge [1]. Because other diseases can provide same symptoms, the exclusion of infection or other identifiable cause(s) is mandatory, as well as further investigation to document possible overlapping of multiple conditions [1, 2]. In the clinical setting, a shorter period of 6 weeks duration was proposed to allow early diagnosis and treatment
The term BPS alone is considered the most appropriate, because the related clinical diagnostic criteria are more inclusive than those based only on cystoscopy and histological findings, which does not recognize up to the 60% of patients. On that basis, some guidelines does not further require cystoscopy for the diagnosis [1, 3-5]. The BPS is defined by clinical symptoms and is based on the hypothesis that women affected by this condition are a homogenous group having a disease with the same etiopathogenesis, with subgroups distinguished by positive signs [5].
IC diagnosis requires cystoscopy with bladder hydrodistension and/or some peculiar morphological findings in bladder biopsies. The findings of cystoscopy can be glomerulations or Hunner lesions; meanwhile, histologic evaluation of mucosal biopsy can show inflammatory infiltrates, granulation tissue, detrusor mastocytosis, and/or interfascicular fibrosis
Noteworthy, often patients refer to the gynecologist based on the chronic pelvic pain that characterizes the disease. In this scenario, an appropriate gynecological evaluation is of paramount importance to exclude other pathologies, such as endometriosis [2, 6-8]. Endometriosis is able to present with similar symptoms and can directly involve the bladder [9], and not rarely the two conditions are overlapping
However, the correct identification of symptoms and the exclusion of other pathologies as well as the suspect of an overlapping condition are important to appropriately refer the patient to a urologist or urogynecologist
The improved understanding of the BPS pathophysiology has raised the numbers of diagnosis, although the variations over time of BPS diagnostic criteria has meant that epidemiological studies reported different statistics on prevalence [5]. Based on the less and the most inclusive definitions, the BPS prevalence in women was reported ranging between 0.83% and 2.71% [12]. Similarly, the 6.53% vs. the 2.70% of women who met symptom criteria, respectively based on high sensitivity vs. high specificity definitions
Although the growing body of evidence about the IC/BPS clinical presentation and pathophysiology, the real etiopathogenesis is not completely understood as well as the role of the different cystoscopic/histologic presentation. These factors limit the available evidence-based treatment options, that are of paramount importance to maximize treatment outcomes since the early stages of the disease [5, 14]. Noteworthy, the early diagnosis has a key role in the syndrome [15], that is a pain syndrome and can determine a pelvic cross-organ sensitization worsening symptoms and hardening management and resolution
The ideal treatment should match as much as possible with the pathophysiologic causes of the IC/BPS, but the scarce evidence limits this approach with the majority of available treatments primarily targeted at symptom control [5]. Treatments strategies have traditionally focused on the bladder, that is considered the primary end organ and source of pain, where most of the IC/BPS symptoms seemed to manifest. Nevertheless, the growing body of evidence on the IC/BPS pathophysiology suggested a multifaceted nature of the disease with systemic components [16].
The conservative management of IC/BPS represents the first-line treatment option. Behavioral and diet changes, psychological stress management, urogynecological exercises, and heat or cold therapy represent the first therapeutic strategies [3, 17]. All these interventions are available only after adequate patient education, that represents the first actual step. Patient needs to be made aware about the bladder function, what is known about IC/BPS, that multiple trials may be required before acceptable symptom control, that often multiple simultaneous approach are necessary, and that specific behavior might improve or worsen IC/BPS symptoms [18].
Pelvic floor relaxation exercises (placing knees against the chest, reclining with spread legs, or squatting) and bladder training have also been shown to improve symptoms increasing intervals between urinations and void volume [20, 21]. Although all of these approaches are able to improve IC/BPS, the psychological support with appropriate coping strategies and stress management has a key role in these women. IC/BPS symptoms are reported related to stress [22-24] and depression similarly to other chronic pain syndromes [25-28]. Psychological, emotional, and social support resulted in an improved health, quality of life, and symptoms
The utility of pelvic floor physical therapy for the management of BPS is related to the hypertonic pelvic floor muscle dysfunction reported in affected women, although it is not known if these alterations are primary or secondary to IC/BPS [29]. Physical therapy is aimed to release the myofascial trigger points and the connective tissue. Randomized controlled trial reported an improvement in pain, urgency, frequency and quality of life (QoL) for women who underwent myofascial physical therapy as compared to women who underwent general therapeutic massage [30]. These results were confirmed by further studies investigating the effectiveness of physical massage in BPS, that can be usually recommended for most patients
Similarly to physical therapy, because of safety and relatively affordability, acupuncture can be considered an option in women affected by IC/BPS based on studies suggesting the effectiveness of the technique, although the evidence is limited and more data are required [11, 29, 33-35].
Conversely, conflicting results are reported about the effectiveness of transcutaneous nerve stimulation. The transcutaneous stimulation of peripheral sensory nerves aims to modulate the pain impulses and has the advantage of being available in outpatient setting. Nevertheless, it requires continuous and daily use for months to achieve modest symptoms improvement
The only oral medication approved by the U.S. Food and Drug Administration (FDA) for treatment of IC/BPS is the pentosan polysulfate (PPS) [36]. PPS is a synthetic sulfated polysaccharide, which therapeutic function is supposed to be the reduction of urothelial permeability by reconstituting the glycosaminoglycan (GAG) layer of the bladder urothelium, that is thought to be compromised in patients affected by IC/BPS [5]. The symptoms of IC/BPS are supposed to be related to urothelium abnormalities caused by the disruption of the GAG layer overlining apical cells, which normally regulate the passage of cations and protects the urothelium from bacteria and toxic substances
PPS is one of the most studied therapies for IC/BPS, and different studies, randomized controlled trials, and meta-analysis supported the improvement of symptoms with PPS treatment as compared to placebo, with the reduction of pain, urgency, and frequency [39, 40]. Nevertheless, more recent randomized controlled trials provided conflicting results, reporting no statistically significant differences of symptoms between PPS treatment and placebo [41, 42]. On that basis, the Royal College of Obstetricians and Gynecologists (RCOG) no longer recommend PPS for treatment of IC/BPS considering the undemonstrated efficacy and the adverse effects of diarrhea, vomiting, rectal bleeding and alopecia [43]. Nevertheless, it is still recommended in other guidelines, although recognizing the limited evidence
Tricyclic antidepressants have a wide range of interactions with different pattern of neurotransmitters receptors. Among them, Amitriptyline is the most studied for the treatment of IC/BPS and act blocking the reuptake of released serotonin and noradrenaline, histamine 1 receptors, and acetylcholine receptors. It is supposed that the urgency and frequency symptoms are alleviated by the anticholinergic effects, meanwhile interaction with neurotransmitters reuptake may have an analgesic effect
Different studies reported an improvement of symptoms ranging between the 50% and 70% in the treated group as compared to placebo, although efficacy is directly related to the dosage as well as side effects, such as nausea, constipation, dry mouth, weight gain, blurred vision, lightheadedness, and sedation
Mast cells infiltrates and detrusor mastocytosis are reported in patients affected by BPS with histological signs of IC, and it was supposed that the mediators released in hypersensitivity reaction by these cells may lead to urinary symptoms
Among them, cimetidine and hydroxyzine were the most investigated so far. Cimetidine (H2 antagonist) was related to a significant improvement of suprapubic pain and nocturia as compared to placebo in a randomized controlled trial, although the histology of the bladder biopses was reported unchanged [21, 50, 51]. Hydroxyzine is a H1 antagonist with anticholinergic activity, that reported in different observational studies an improvement of symptoms up to the 90% of treated patients, with sedation representing the primary side effect. Conversely, in a randomized controlled trial these results were not confirmed
Other than histamine, leukotriene plays a key role in the activation of mast cells and eosinophils [52]. In patients with IC/BPS higher levels of leukotriene were identified in the urine of women with detrusor mastocytosis, supporting a potential key role of these mediators in the pathophysiology of IC/BPS [53]. In line with this evidence, montelukast, a leukotriene receptor-1 antagonist, was reported able to improve symptoms of patients affected by IC/BPS in a pilot study and in a case report
In addition to mast cells infiltrates, in women affected by IC/BPS infiltration of the bladder mucosa by CD4 T lymphocytes and eosinophilic leukocytes was reported. This inflammatory components suggest an autoimmune pathogenesis of the disease, and humoral or cell-mediated mechanisms targeting the bladder mucosa may cause the episodic exacerbation of the IC/BPS