Scope... and still no Dx

[born2swim]

I'm the kind of person that likes to avoid as many meds as possible. I don't want to take meds unless necessary. I'm going to give this Elmiron some time to work, keep following up with my doctors, etc. I won't turn it down if I'm getting nowhere...

How long did it take for it to work for you? I really hate being tired, and right now the sleep deprivation is killing me! I have a very busy life and can't afford to be tired, but I also can't afford to cope with this constant need to pee. I don't hurt without my period, but I can't stand that need to pee all the time.

[geel]

When my bladder "seized" (for lack of a better word) up on me in December 06 I was in a panic mode for about a week or so. Then I just started to accept that it was going to be like this and then I relaxed a bit. It was scary though. How long have you had this urgency problem? Is there something in your diet that you eat or drink everyday??? (For example yogurt,cereal, at breakfast) maybe eliminate it, even if it's not on the list of no nos and see if that helps. For myself I just started holding it until I couldn't hold it anymore. I didn't have the patience or toilet paper to go all the time even though I could have, let me tell you! By then end of the month things got a little better. I've been on Elmiron for a month plus had bladder streched so I am feeling okay. I'd give it 2-3 weeks at least. I think I probably pee more than the average person but its okay for now. Keep hanging in there!!!!!!!
Ellen

[L. Thomas]

Research my Urogyn completed last year( for ALERCON sp?) shows that symptoms rated on surveys such as the PUFF are as accurate predictor of IC as most of the invasive procedures.

I had urge (when you don't know that you have to go until it is too late to get to the bathroom).
I always felt "full" or that I still needed to go even when I just got off the toilet.

(I really don't call "thinking" I need to go urge).

With my treatment I don't feel "full" all the time and I do feel the urge before it is too late to get to the bathroom.

[born2swim]

I tried searching what you suggested, but I couldn't find anything... do you think you could send me a link? Thank you!

[born2swim]

Well... I tried the IC diet and that didn't do anything. I added back "avoid" foods (except for juice, sour/acidic things, and caffeine) and that hasn't made anything worse.

I noticed some urgency/frequency symptoms in November 06, then it subsided a bit, peaked again in December, then barely subsided... then January 07 rolled around and I was in misery. It was unbearable January/Feb... March I learned to deal with it better. The less I move, the better. I had so much pain with my periods they stopped them and put me on Seasonique, but a month long period proved to be hell. When they started me, I should have had my period that week... and I was so sick that I couldn't eat/drink for 4 days (gag on water or brushing my teeth even). My urgency/frequency didn't improve with dehydration and they gave me 2 full liters of IV fluids before I made any urine (was going to the bathroom, straining, but nothing there to pee). I have been on Elmiron for just over a week... and I do feel a tiny bit better, but I still have that frequency/urge... it's just a weaker signal (if that makes sense). I know that straining isn't helping and when I can I try to hold it for as long as I can (wear a pad those days just in case). I have never leaked anything, but I'm terrified that it will be a new symptom

I see a uro-gyno PA next week (the MD is hard to get into, month wait, but they wanted to get me in ASAP to get my history/physical and get more tests scheduled).

I hope this office can help me!

Thanks for all your help!

[L. Thomas]

I tried searching what you suggested, but I couldn't find anything... do you think you could send me a link? Thank you!

I don't have a link but this is part of an interview with my urogynecologist. His research was with Alercon (sp?). I don't know where you could find the research. I don't think I will get in "copyright trouble" because I am not selling this information, although it is plagiarism.

JOURNAL OF GYNECOLOGIC SURGERY
© Mary Ann Liebert, Inc.
An Interview with Jeffrey R. Dell, M.D.

JEFFREY R. DELL, M.D., is the director of the Institute for Female Pelvic Medicine and the director of Urogynecology and Reconstructive Pelvic Surgery at Generations ObGyn, in Knoxville, TN. He received a Bachelor of Science degree in chemistry from Southwest Missouri State University, Springfield, MO, and his M.D. degree from the University of Minnesota School of Medicine, Minneapolis. MN. Dr. Dell completed an internship and residency in obstetrics and gynecology at the University of Tennessee, Memphis, TN. He has extensive postgraduate subspecialty training in the areas of urogynecology and reconstructive pelvic surgery and directs a surgical preceptorship program through the Institute for Female Pelvic Medicine.

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.

—Interview by Vicki Glaser
Address reprint requests to:
Jeffrey R. Dell, M.D.
Generations ObGyn
9430 Parkwest Boulevard
Knoxville, TN 37922
E-mail: [email protected]
146 Interview Journal of Gynecologic Surgery

[glassd18]

I had a very painful urethra when I had my cysto, but it subsided after the test. IC symptoms can move around. Some days my symptoms are more urethral, with burning around the vaginal, and anal area, and other days it's more frequency, urgency, and hesitancy. Very seldom do I have all of these symptoms together. IC is a crazy disease!!! You should of course rule out all possibilities. I had a CT Scan with contrast, vaginal exam, two ultra sounds, ghonnohrea test (STD test), pelvic MRI, and finally a cystoscopy w/o hydro. I hope you feel relief soon!!

[born2swim]

Thank you L. Thomas for all that information! I found a link for one of the questionaires, so I'll do that and bring it to my uro-gyno appointment on Thursday!

[born2swim]

IC is definately a crazy disease, and a terrible one at that. I will see what the uro-gyno wants to do in terms of testing next week. Hopefully he (well his PA that I see first) will have some ideas or has seen this before. It baffles my doctors that my urethra is the only painful thing going on, getting worse with my period or physical manipulation, but it has never burned and it doesn't hurt when I'm not menstruating except for a dull ache. Weird. I hope they have some answers soon...