Interstitial cystitis affects 500,000 people in the UK, who are told that there is no cure for it and they must live with it. Patients have often been on an exhausting route visiting GPs, urologists and gynaecologists with little success. They feel that the orthodox treatment seems to be purely symptomatic and unable to address the underlying cause of this very debilitating condition.
What is Interstitial Cystitis (IC)?
Interstitial cystitis is a very uncomfortable and stressful disorder, which is characterized by chronic urinary urgency (feeling the need to urinate immediately) and frequency (frequent urination) with or without pelvic pain. Symptoms of interstitial cystitis may vary among individuals and may even vary with time in the same individual. Many people have to live life around their bladder because of the unpleasant symptoms. The term “cystitis” refers to any inflammation of the bladder. In contrast to bacterial cystitis, which results from an infection in the bladder, no infectious organism has been identified in people with interstitial cystitis. Interstitial cystitis is diagnosed when the symptoms occur without evidence for another cause of the symptoms.
About 90 percent of patients with interstitial cystitis are women and the average age of onset is 40, though people of any age can be affected. Although interstitial cystitis has not been considered a hereditary disorder, multiple cases have occurred among some families, prompting further research into a genetic link.
Women with interstitial cystitis are more likely to have had frequent urinary tract infections and to have had previous gynaecological surgery than women without interstitial cystitis. Certain chronic illnesses have been described as occurring more frequently in people with interstitial cystitis than in the general population:
Systemic lupus erythematosus (Lupus or SLE)
Irritable bowel syndrome (IBS)
Vulvodynia (chronic discomfort in the vulvar area)
Interstitial cystitis has been classified into two forms, ulcerative and non-ulcerative, depending on the presence or absence of ulcerations in the bladder lining. Star-shaped ulcerations in the bladder wall are known as Hunner’s ulcers. The ulcerative (classic type) of interstitial cystitis is found in less than 10% of cases. Scarring and stiffening of the bladder wall may occur as a result of the long term inflammation, leading to a decrease in bladder capacity. Areas of pinpoint bleeding may be seen on the bladder wall.
What is the cause of interstitial cystitis?
No one knows exactly what causes interstitial cystitis but because the symptoms are varied, most researchers believe that it represents a spectrum of disorders rather than one single disease. One area of research has focused on the layer that coats the lining of the bladder called the glycocalyx. This consists mainly of substances called mucins and glycosaminoglycans (GAGs). This layer normally protects the bladder wall from toxic effects of urine. Researchers have found that this protective layer of the bladder is “leaky” in about 70% of interstitial cystitis patients. There is a hypothesis that this may allow substances in urine to pass into the bladder wall where they might trigger interstitial cystitis.
Potassium is one substance that may be involved in damage to the bladder wall. Researchers have isolated a substance known as antiproliferative factor (APF) that appears to block the normal growth of cells that make up the lining of the bladder. APF has been identified almost exclusively in the urine of people suffering with interstitial cystitis. Research is underway to clarify the potential role of APF in the development of interstitial cystitis.
Other theories about the cause of interstitial cystitis are that it is a form of autoimmune disorder or that infection with an unidentified organism may be producing the damage to the bladder and the accompanying symptoms.
What are the signs and symptoms of interstitial cystitis?
The symptoms of interstitial cystitis vary greatly from one person to another but have some similarities to those of a urinary tract infection. They include:
Decreased bladder capacity
An urgent need to urinate frequently day and night
Feelings of pressure, pain, and tenderness around the bladder, pelvis, and perineum (the area between the anus and vagina or anus and scrotum) which may increase as the bladder fills and decrease as it empties
Painful sexual intercourse (dyspareunia)
Discomfort or pain in the penis and scrotum
In most women, symptoms usually worsen around the time of their periods. Stress may also worsen the symptoms. The symptoms usually have a slow onset, and urinary frequency is the most common early symptom. As interstitial cystitis progresses over a few years, cycles of pain (flares) and remissions occur. Pain may be mild or so severe as to be debilitating. Symptoms can vary from day to day.
How is interstitial cystitis diagnosed?
Because the symptoms of interstitial cystitis are similar to those of other disorders of the urinary system and because there is no definitive test to identify interstitial cystitis, doctors must exclude other conditions before making a diagnosis of interstitial cystitis. Among the disorders to be excluded are urinary tract or vaginal infections, bladder cancer, bladder inflammation or infection caused by radiation to the abdomen, eosinophilic and tuberculous cystitis, kidney stones, endometriosis, neurological disorders, sexually transmitted diseases, urinary tract infection with small numbers of bacteria, and, in men, chronic bacterial and non-bacterial prostatitis. Medical tests that help identify other conditions include a urinalysis, urine culture, cystoscopy, biopsy of the bladder wall and, in men, laboratory examination of prostatic secretions.
What is the orthodox treatment of interstitial cystitis?
Orthodox medication The principal type of oral medication is Elmiron, which is chemically similar to the substance that lines the bladder. It is believed that Elmiron assists in the repair of the bladder. Even after therapy has begun, patients may still experience symptoms for some time because the sensory nerves in the bladder have been hyperactive, and it takes time for the nerves to return to their normal state of activation. Doctors recommend giving up to one year of this treatment in mild interstitial cystitis and two years in severe interstitial cystitis before deciding if the drug is effective or not. Between one-third and two-thirds of patients will improve after three months of treatment.
Other oral medications that may be used to treat interstitial cystitis along with Elmiron include antidepressants, aspirin and ibuprofen (both of which may make symptoms worse in some patients).
Bladder Distension Bladder distension is sometimes is used for therapy of interstitial cystitis. It helps reduce symptoms in approximately 20-30% of people with interstitial cystitis. When it is effective, the relief of symptoms persists for three to six months after the procedure.
Bladder Instillation (Intravesical therapy)
This procedure may also be called a bladder wash or bath. During a bladder instillation, the bladder is filled with a solution that is held for varying periods of time, from a few seconds to 15 minutes, before being drained through a narrow tube called a catheter.
In severe cases of interstitial cystitis, intravesical solutions may be administered along with Elmiron to provide relief until the oral medication has had time to take effect. Other drugs that have been used for bladder instillations include dimethyl sulfoxide (DMSO, RIMSO-50), heparin, sodium bicarbonate, and hydrocortisone (a steroid). Treatments are given every week or two for 6 to 8 weeks, and repeated as needed depending on symptoms. Most people with interstitial cystitis who respond to DMSO notice an improvement in symptoms 3 or 4 weeks after the first 6 to 8-week cycle of treatments.
Other Surgical Procedures for Interstitial Cystitis
In severe cases of interstitial cystitis that do not respond well to oral medications or to bladder distension or instillation, more invasive surgical procedures may be attempted. A procedure known as sacral neuromodulation has been shown to be effective in controlling symptoms in some people with interstitial cystitis. The term “neuromodulation” refers to an alteration of the nervous system. In sacral neuromodulation, a device is implanted that allows for electrical impulses to stimulate the nerves in the sacral (lower back) area. Sacral neuromodulation is believed to work by inhibiting the hyperactive signals from the sensory nerves within the bladder wall. For sacral neuromodulation, a wire from an electrical impulse generator is implanted in the sacral region of the spinal column. If there is relief of symptoms, the impulse generator can be implanted beneath the skin in the region of the buttocks. A remote control programmer allows the patient to adjust the impulse frequency and power to provide optimal relief of symptoms.
Therapies that also have been used include transcutaneous electrical nerve stimulation (TENS), a form of neuromodulation that does not involve surgical placement of wires or an impulse generator. With TENS, mild electric pulses enter the body for minutes to hours two or more times a day either through wires placed on the surface of the lower back or the suprapubic region, between the navel and the pubic hair, or through special devices inserted into the vagina in women or into the rectum in men. It is believed that the electric pulses may increase blood flow to the bladder, strengthen pelvic muscles that help control the bladder, and trigger the release of hormones that block pain. TENS is generally more effective in reducing pain than in reducing urinary frequency.
Other surgical procedures that may rarely be performed to treat severe interstitial cystitis include peripheral denervation (disrupting the nerves to the bladder wall), bladder augmentation to increase bladder capacity, and cystectomy (bladder removal) with diversion, or re-routing, of urine flow.
The Herbal Treatment of Interstitial Cystitis
The aim of the treatment is not only to alleviate the symptoms but, where possible, to find any underlying issues, which may be fuelling the IC. By taking a very detailed history, the practitioner can better understand the pathology of each woman’s IC and thereby address the underlying issues. Every woman’s experience of IC is different and must be treated accordingly rather than with a set protocol or a one-size-fits-all approach. Herbal Medicine treats the whole person and not just the symptoms.
Interstitial Cystitis is a very complex and debilitating condition. It has probably taken a long time… perhaps years… for the body to reach the point, where IC becomes inevitable. This could have been for a variety of reasons with several body systems involved. The chronic inflammation in the bladder and its repair is the most challenging part of the body to treat as it is always in constant use. The complexity of this illness dictates that treatment is given in stages, addressing both the underlying weaknesses in the body and the symptoms. The treatment for IC takes both trust and dedication to achieving a good clinical outcome.
Patients, who start this treatment within a year of diagnosis, usually report that their pain becomes more manageable after six weeks. For patients, who have had IC for longer, it takes longer to notice an improvement. It is very much team work with the patient working with the practitioner to successfully get through the various stages of treatment, which address underlying issues and strengthen body systems.
To help prevent flares, patients are advised to follow a strict diet. Every patient’s experience of IC is different so there are no set treatments. Instead, treatments are tailored to meet each patient’s unique needs. The practitioner formulates a personalised herbal prescription for each patient. This approach gets the best results and is far more effective than a one-size-fits-all approach.
Patients usually report subtle changes after the first six weeks of treatment. They are asked to keep a detailed diary, which is discussed at every consultation. It is not unusual for patients to report that they have less pain after the first six weeks. Some report that the increase in pain and the severe flares around the time of their period have disappeared. Patients have reported that the shooting pain on sitting has gone and that they urinate less frequently and the bladder feels calmer.
Where patients have experienced IBS type symptoms, there is usually an improvement within this initial period. For example, some patients will report a reduction in the number of bowel movements per day. Some report less flatulence. Patients also report an improvement in general health, whilst the treatment progresses. They say they have less achiness, less headaches, less menstrual or menopausal symptoms.
The stress and depression that this condition causes is also treated, which again usually leads to less pain and better control of symptoms. Within the first six weeks of treatment, it is not unusual for patients to report that they feel calmer, with their mood better than before. At this stage in the treatment patients may see an improvement in their sleep. Some report that they are sleeping deeper and so have more energy. For others it can take longer to feel comfortable at night.
Every patient responds differently to the herbal treatment. Some patients may react very quickly to the treatment, whilst others may take longer. It is therefore impossible to estimate how long treatment will take. However, in most cases it takes around a year. Patients do suffer setbacks from time to time and this can be brought on by stressful situations in their life. When this happens, the herbal prescription can be modified to give the patient more support. Patients report that this flexibility in the treatment is extremely beneficial and they say that they feel so much better than they ever did on the orthodox treatment.
One patient’s testimonial says” It was explained that we had to rebalance my body and calm the inflammation thus allowing healing to take place rather than giving the body drugs to mask the pain and intrusive procedures to merely ease the symptoms. I was also advised about what I should and should not eat so my condition would not get worse. The treatment is in stages and I have regular check ups to see how the treatment is going and if I am ready to go to the next level of treatment. After 2 weeks I could notice a dramatic improvement and this continues to be the case. Thanks to this approach I have an excellent understanding of the condition and what my body needs to be able to beat it. I would strongly recommend anyone suffering from interstitial cystitis to try herbal medicine. I know the pain and anxiety it causes and hope that many more women discover like I have that they are not resigned to that suffering, there is a way forward with herbal medicine.”
There are no quick fixes with this natural approach to treating interstitial cystitis and progress is slow but patients report a sense of recovery and, by tracking the subtle changes in their diary, they can actually see how much progress they are making.