The Beginning of My Journey

[L. Thomas]

Hopefully my IC story will encourage newbeeis so I have posted it here in addition to the Sucess Story board. IC can really be tough in the beginning, not only physical but emotionally as well. Maybe this will give you the support you need as you begin your journey. I look at IC as a journey, not a destination. This post is really long but it contains some information that might be helpful in addition to my story.

Please don't think IC is a fate worse than death

I consider myself one of the luckiest people ever diagnosed with IC. After reading all the horror stories that you have suffered for such a long time with no relief, I am reluctant to share my story with you.

I exhibited urge incontinence bladder spasms, involuntary flatulence and frequency issues after extensive pelvic surgery to correct multiple pelvic problems. Prior to surgery I consulted a urogynecologist for a second opinion. The first urogynecologist performed urodynamics that indicated bladder capacity and retention amounts within normal limits and recommended surgery for stress incontinence.

At the follow-up visit after surgery my gynecologist diagnosed urge and frequency incontinence and a vault prolapse. He prescribed Detrol and referred me to the 2nd urogynecologist for evaluation.

The 2nd urogynecologist ordered another urodynamics evaluation. The results after surgery greatly differed from the pre-surgery test. The urodynamics after surgery showed a bladder capacity greater than 600cc and residual greater than 250cc. His diagnoses was vault prolapse with frequency and urge incontinence. To address constipation and uncontrollable flatulence (I call it the “walking farts”) a rectal ultrasound and a rectal motility test were ordered. Can you belive that there are actually MD's that specialize in rectal ultrasound and rectal motliity? The results were within normal limits and no treatment was indicated. The urogyn prescribed physical therapy. PT was not the answer for me. He also wanted to do surgery to “take down the bladder sling” to correct the retention issues.

I discontinued the Detrol as it decreased my urine flow to a dribble and did nothing to improve the urge or frequency issues. I returned to my gyn to discuss my treatment after completing physical therapy. When a residual showed with-in normal limits (30cc) he was quick to admit that he was stumped . Because I had normal retention with this test, if I had the surgery suggested, my stress incontinence would have returned.

I know my gynecologist felt guilt because he thought he had caused my problems. The only symptom before surgery was stress incontinence and the new symptoms appeared so quickly after surgery. I am sure that is why he was so diligent in finding help for me. He then referred me to a 3rd urogynecologist. My gyn insisted that if this urogynecologist didn’t know how to treat my radical symptoms that he would know someone that could.

During my initial visit with the 3rd urogynecologist, who coincidentally was a specialist in IC, agreed with the diagnosis of vault prolapse, urge, and frequency incontinence. He also determined that on that day I had a residual of 300cc. In the past 10+ years of treating IC patients he recognized what seemed to be inconsistent symptoms for IC . He wanted to give me a “cocktail” to which I replied, “Some how I don’t think that will be as pleasant as it sounds”. It was a bladder instillation. I could tell immediately that it was going to work . I was diagnosed with mild IC. I left his office that day with the appropriate treatment that arrested all symptoms. The first 3 visits were to evaluate the effectiveness of the instillations and the next 3 were for learning how to do home instillations. I had follow-up visits at 6 weeks, 18 weeks, 24 weeks, 36 weeks. I now return for follow-up visits every 6 months . He feels that because I was diagnosed early and the treatment is effective that my IC will probably not progress.

My gynecologist admitted he had learned something. He said he would have never diagnosed IC in a thousand years and wanted my recipe.

I hope my “success” will help others. I do have to travel about 90 miles for follow-up visits as I live in a very rural area. I just use the trip as an excuse to shop in the “Big City”. I want to encourage those that are having problems getting relief to consider traveling a little further. It is well worth my trip.

My treatment is home instillations as needed (about every 3 days):
lidocaine 8cc
sodium bicarbonate 2cc
heparin 10,000 units

I have saved my self a lot of time and money because I keep a medical folder of all test results, radiologist reports from x-rays, MRI’s, and operative notes from all the procedures and surgeries I have had.. The folder is now a 3” binder. The MD’s always comment how helpful the information is to them. Sometimes I still have the test again but they have the results and can compare to the other results. If you ask MD’s for a copy of the notes they will give them to you. The hospital may charge but I think they have to give you 1 copy without charge. I keep this information for my knee problems too--6 knee surgeries TKA on one knee and looking forward...NOT..to another TKA on the other knee in a few years.

Thank you for allowing me to share my success story.

I hope that this story will encourage you. My urogynecologist agrees that the nature of the disease is unpredictable, there is no cure, diagnosis is difficult many times, and sometimes finding treatment can be difficult. But he is on my side. He told me that if I should need to do anything else not to worry he had "lots of tricks in his bag".

I don’t have any idea how many of you must feel because I was diagnosed while in an early stage of IC. As I read your post I literally am so thankful that I have been so fortunate.

My urogynecologist believes that IC is a lifelong condition with no cure but there are effective treatments can reduce or eliminate symptoms. He also says he is seeing a pattern that makes him believe that IC is a genetic disease that manifest itself after bladder trauma. Before the first visit with my urogynecologist I didn’t know anything about interstitial cystitis . I couldn’t even pronounce it.

All of my doctors have made me aware that the nature of this disease is unpredictable and that old or new symptoms can appear from out of the blue. All my medical professionals are approachable and truly have my interest at heart. I do not worry about “what if something happens” because my PCP, gynecologist and urogynecologist or their nurses are available 24/7. They are really there because I have used the numbers, after hours, on weekends and at midnight. I know I will always have the help I need when I need it. Do I feel lucky? No I believe in the power of prayer, and so do they.

2006 Update:
Instills are still the only treatment I need to control all IC symptoms. I recently had another urodynamics to determine the extent of my vault prolapse. Results show that my bladder retention was within his “normal limit” of less than 125cc. The capacity is still 600+cc. and that will not decrease.

I had extensive pelvic reconstruction in 2004, that included and ooprhorectomy and repair of bladder, small intestine, large intestine, and uterine prolapse. I developed valut prolapse a few months after surgery. My urogynecologist wants to wait until my symptoms are more bothersome before doing the surgery for vault prolapse. Hopefully this will take care of everything. When I have that surgery I think that I will have had everything repaired that can prolapse.

2007 Update
6 month follow-up: Everything is still going great. The number of instills has basically stabilized at 3-4 a week. All symptoms are controlled with treatments. I have no food sensitivities so I am able to eat any thing I want (which is to my disadvantage because I do).

I know ths is a long post but the remainder of this post is concerning my urogynecologist and an interview.

I have had several ICers PM for more information about my urogynecologist. This link tells more about him:

http://www.genobgyn.com/Physicians/tabid/53/Default.aspx?PageContentID=2

This is a portion of an interview with my urogyencologist published in:
JOURNAL OF GYNECOLOGIC SURGERY

What is the prevalence of interstitial cystitis? Has that been increasing or decreasing? Why?
Trying to get an actual prevalence number for interstitial cystitis is extremely challenging. Many studies over the years have attempted to quantify the prevalence. One of the difficulties is that there is not a universally agreed upon, specific criteria set by which the condition is diagnosed. It remains a clinical diagnosis.

The important point here is that the understanding of what interstitial cystitis represents has been changing tremendously, and, as the understanding of the condition has changed, we see that prevalence estimates continue to increase. This likely reflects the paradigm shift in our understanding of the condition rather than an actual prevalence change. We just were not very good at recognizing it and diagnosing it in the past.

Patients with classic, severe cases were the only patients previously considered to have interstitial cystitis. These patients had such severe pelvic pain and urinary symptoms that it was dramatically and negatively impacting their quality of life. What was completely missed was the far greater category of patients who had only mild symptoms—
mild overactive bladder symptoms, symptoms that overlap with endometriosis and recurrent urinary tract infections. We now understand that many of those patients actually have early, mild interstitial cystitis.

That is reflected in the very different prevalence numbers today. Somewhere between 9 and 15 million women in the U.S. alone report having chronic pelvic pain. This is a very significant issue. About 40% of all laparoscopies are done to evaluate and work-up chronic pelvic pain, 12%–15% of hysterectomies are done to work-up chronic pelvic pain, and 1 out of every 6 patients referred to a GYN center is coming for evaluation of chronic pelvic pain. Gynecologists have historically been very good at thinking of and evaluating patients for endometriosis. However, the bladder component of that pelvic pain was often missed until recent years. There are data to suggest that up to 70% or more of female patients who have chronic pelvic pain may have a bladder component to that pain.

Why is it important for gynecologists to screen for this disorder?
In gynecology, over the past couple of years, we have been using the term “screening” in a less traditional sense—that is, screening the pelvic pain population for pain of bladder origin, as opposed to screening asymptomatic women. The reason it is so important for gynecologists to be thinking about bladder origin pain and taking the next step of screening those patients is that these doctors regularly diagnose and treat patients with chronic pelvic pain that may, in fact, have a bladder component. When that component is overlooked, patients may return to the gynecologist over and over again despite receiving various treatments for their pelvic pain.

We see patients who have had two, three, and even four laparoscopic procedures, perhaps progressing to the point of total hysterectomy, and, yet, they do not have improvement in their pain, and sometimes it even gets worse. On average, women will tend to have symptoms that progress for 5–7 years. They may see 6–8 different providers as they try to get answers and treatment for their pain, and, most
of the time, you will find that they have not been specifically evaluated for bladder origin pain.

What is the appropriate screening approach?
It is important to understand that bladder origin pain surrounds us in every gynecologic setting. If physicians are not thinking of bladder origin pain, then they will have little chance of picking it up.

We have two very good, validated screening surveys to use—PUF (Pelvic Pain Urgency Frequency Questionnaire) and ICSI (Interstitial Cystitis Symptom Index)—that take only a few minutes to complete and can point to those patients that need more specific evaluation for interstitial cystitis. The next step is physical examination, and the important point here is to check for anterior vaginal wall or bladder-based tenderness.

What are the main treatment options and what are their advantages/disadvantages for individual patients?
We know that diet plays a very significant role in interstitial cystitis; in particular, spicy and acidic foods and foods that are high in potassium are a source of symptom flare. We provide education and information on how to modify the diet to minimize symptoms. We also know that stress plays a tremendous role in interstitial cystitis, and stress management should be a component of treatment. Many patients with interstitial cystitis will develop significant pelvic floor dysfunction; we need to be aware of this and employ the expertise of specialized physical therapists that can help the patient.

More specifically, there are only two FDA [Food and Drug Administration]–approved treatments for interstitial cystitis. The only oral medication is pentosan polysulfate sodium (Elmiron,® Ortho-McNeil Pharmaceutical, Raritan, NJ). The other treatment is DMSO, dimethyl sulfoxide, for intravesicle installation. Elmiron, as an oral approved agent, provides a foundation—an important starting point for treatment.

Over time, it helps a patient rebuild or resurface a defective or deficient protective lining in the bladder. Intravesicle installations have also become an important part of the treatment plan, but, these days, we have moved past DMSO in many cases to heparin cocktails, which typically contain heparin, lidocaine, and a small amount of sodium bi-carbonate. We instill this directly into the bladder, and it provides almost immediate relief to patients who are really in significant pain.

Elmiron does not have a single drug–drug interaction. Even patients who require anticoagulation are potential candidates for this drug. There are really no contraindications to either Elmiron or intravesicle treatments unless a patient has previously had a reaction to one of the agents.

When should a gynecologist consider doing in-office cystoscopy or hysteroscopy?
The physician’s office is the ideal setting for cystoscopy and hysteroscopy in a majority of cases. The type of equipment available these days—we utilize Olympus (Olympus, America,Orangeberg, NY) or flexible fiberoptic scopes in our office—make these procedures tolerable for patients, causing a minimal amount of discomfort. The combination of the convenience— with less time lost from work and family—and the cost savings compared to the operating room make office-based procedures preferable. General gynecologists receive a fair bit of exposure to the use of diagnostic hysteroscopy in the office setting these days.

Cystoscopy, however, continues to be an area in which gynecologists do not receive adequate training. In many cases the difficulty in training gynecologists has been fueled by turf battles involving urology and urogynecology. I think we will see a progressive trend toward more and more of these procedures in an office based setting for diagnostic purposes. The health care system is already heavily burdened, and the cost-savings on the health care system side and the recovery and morbidity issues on the patient side place the advantage in favor of an office-based setting. The advantages from the physician’s perspective include the ability to provide a very important service to patients and to do so in a time- and cost-efficient manner.

As a next step, I think we will see a push toward the treatment side of the equation. We have already seen this with bulking therapy, as we now routinely do these procedures in the office setting, whereas several years ago most of these were done in the operating room. Female sterilization and even next-generation slings being developed for urinary incontinence will continue to focus on more minimally invasive approaches with a possibility of at some point moving these into an office-based setting as well.

What types of equipment are needed?
We use a variety of scopes. From a purely diagnostic standpoint, the Olympus flexible fiberopticscopes offer tremendous image quality for the doctor and unbelievable tolerability for patients When it comes to procedures, such as bulking therapy, this requires a different scope, and we use a rigid cystoscopy set-up designed and built for bulking therapy. For physicians who have not yet moved to office-based treatment procedures, the range of flexible scopes available is the optimal way to go for the diagnostic side of the equation.

How do you choose the distension medium? Do you use an anesthetic?
With regard to bulking therapy you can use either normal saline or sterile water as the distention medium. To do these procedures in the office, as long as a patient has someone accompany her and she does not have to drive herself home after the procedure, we usually have the patient take a 5-mg dose of diazepam to provide a little bit of extra pelvic-floor relaxation. The drug also helps reduce anxiety. When the patient arrives in the office we simply use topical Lidocaine (Amerian Regent, Shirley, NY) jelly that we place in the bladder neck with a little catheter for about 10 minutes. That is the only type of anesthesia we use. Some physicians will also inject some Lidocaine into the per urethral tissue but we do not do that routinely and we find that patients do extremely well.

Are there special documentation needs for these procedures? What type of patient records do you use in your office?
As we see the push to do more of these procedures outside of a formal operating room setting and in more of an ambulatory setting, documentation becomes an important issue. As a general rule, we try to maintain the same level of documentation for any of the procedures we do in the office as we would if we did them in the operating room. We have patients sign a full consent form reflecting all of the basic risks involved, which we keep in the charts as a part of the permanent records, and we talk through the process with patients ahead of time. Whether for hysteroscopy or cystoscopy or any of these other procedures, that is a very important template to follow considering the medical/legal climate in which we practice.
REFERENCES
1. Giordano D. Twentieth Congress Franc. De Chir 1907;506.
2. McGuire EJ, Lytton B. Pubovaginal sling procedures for stress incontinence. J Urol 1978:119:82.
3. Ulmsten U, Henriksson L, Johnson P, Varbos G. An ambulatory surgical procedure under local anesthesia for treatment
of female urinary incontinence. Int Urogynecol 1996;7:8.