A Comprehensive Guide to Interstitial Cystitis - Jill Peters-Gee

May 21, 2024

Diane Newman interviews Jill Peters-Gee about her comprehensive book on interstitial cystitis (IC). Dr. Peters-Gee discusses her motivation for writing the book due to outdated resources and new information from the MAPP Network. She explains the terminology confusion between IC and bladder pain syndromes (BPS) and emphasizes the need for phenotyping to tailor treatments. They discuss the importance of identifying flare-up triggers and how the book aids both patients and healthcare providers with up-to-date information. Dr. Peters-Gee also highlights the significance of cystoscopy in diagnosing ulcerative IC and addressing associated conditions. The interview concludes with praise for the book, "IC Journey to Wellness," as an excellent resource for those affected by IC.


Jill M. Peters-Gee, MD, Retired Urologist, IC Journey to Wellness, The Interstitial Custitis Association, Farmington, CT

Diane K. Newman, DNP, ANP-BC, BCB-PMD, FAAN, Adjunct Professor of Urology in Surgery, Perelman School of Medicine, University of Pennsylvania, and Former Co-Director of the Penn Center for Continence and Pelvic Health, Philadelphia, PA

Read the Full Video Transcript

Diane Newman: Welcome. I'm Diane Newman. I'm a nurse practitioner and I'm medical director at UroToday.com. And I'm here today with a guest, Dr. Jill Peters-Gee, who wrote a really excellent comprehensive book on interstitial cystitis. And I asked her here today to talk a little bit about her background. She's been in urology for many years, but also why she decided that a book such as this was needed.

Jill Peters-Gee: Thank you, Diane, for inviting me to meet with you today. So I am Dr. Jill Peters-Gee. I'm a urologist. I trained in Michigan, did my residency at Henry Ford and then ultimately moved to Connecticut and spent most of my career in Connecticut doing women's health. So after I retired, I founded the Connecticut IC Support Group. And for the group, I put together a resource list of references that they could refer to. And I realized that the last good book on IC written by a urologist or someone who treated IC was over 20 years ago and there was a lot of new information that has come out, especially from the MAPP Network, that really hadn't been disseminated to patients or to providers. So that was the impetus to write the book.

Diane Newman: Yeah, and let's talk a little about, we say IC, so interstitial cystitis, but there's some confusion over the name of this condition, correct?

Jill Peters-Gee: Yeah, the terminology IC is actually a disease and we think of it as ulcerative interstitial cystitis as a disease of the bladder. Everybody else is really bladder pain syndromes, which we call BPS. Patients refer to themselves as IC. And because of insurance reasons and disability reasons, the terminology that has stuck with the patients is IC. But technically, the 10% to 15% of people with ulcers should be called interstitial cystitis, the disease of the bladder, and the other 85% really are bladder pain syndromes, which is a syndrome of symptoms.

Diane Newman: Now, in your book you really do some nice reviews of the new stuff that's coming out, right, 'cause there have been a lot of advances. Talk a little bit about a few of those because you mentioned the MAPP, which was an NIH-supported network looking at phenotyping in that, but there's been a lot more growth in this area as far as identifying this problem and what can be done, correct?

Jill Peters-Gee: Correct. The problem with IC or bladder pain syndrome is that there's no one treatment that fixes everyone. There's a lot, it's a huge heterogeneous group of people. And even our research has been looking at the big group and not moving forward. There hasn't been an FDA-approved drug in decades. So the MAPP Network focused on trying to look at subtyping or phenotyping the large group, and tried to focus in on different aspects from a research standpoint and it really made a lot of headway. So there's a tremendous amount of information that has come out of that. And the book basically is focusing on how do you take that big group and divide it down into smaller groups so that you can be more focused and directed on your treatments.

In the '80s and '90s, everyone was focusing on the bladder, the bladder had to be the source of all the symptoms. So we researched mast cells and GAG layer and C fibers and all the things that we... And we learned a lot about those people who had a bladder-centric phenotype. But even then, there were people who had, in that group, they had symptoms coming from outside the bladder. And so the therapies didn't work for them because they didn't have a bladder source of symptoms. So the book basically takes it and breaks it down, you can have a bladder source of symptoms, you can have symptoms coming from outside the bladder such as the muscles, the fascia, the nerves. And the key thing I think that the MAPP Network has shown us and the research since then is the role of the brain and the central nervous system, the upregulation that can occur when you've been barraged with chronic pain and inflammation for years.

Diane Newman: Tell me a little bit about the practice that you had. So you saw women of all ages, correct, with IC?

Jill Peters-Gee: I finished my residency in '90 and I moved to Connecticut in '91, so most of my practice was there. In '98, I joined Women's Health Connecticut, which was a huge group of 240-some gynecologists, and our division was the urology group. So our practice was called Women's Health Specialty Care. But we did care for men who had very specific conditions that our group was the only one treating, such as the first InterStim, the first Botox, and the IC patients. So I had male IC patients, but I didn't see general male urology; it was a female urology practice. Because of that practice and because I was the first female urologist in Connecticut and part of this large GYN group, I had a lot of pelvic pain patients.

Diane Newman: All ages, right, so we see-

Jill Peters-Gee: All ages. Well, I got referrals from the pediatric group. So the PEDs would start with the pediatric urologist and then get referred in if they felt they had IC.

Diane Newman: The chapter that I found really fascinating was the one on flare-ups. Talk a little bit about that because women, that's actually, when they contact us, "What am I going to do?" They can't deal with it anymore. So talk a little bit about what you talked about in flare-ups.

Jill Peters-Gee: I think the key thing with flare-ups is trying to identify what your trigger is. So by journaling, that can be a good way to start sorting out, is it from a dietary change, is it from stress, is it hormonal, is it because you have constipation? You started a new medication for another thing, you held your urine too long, going to the dentist and holding your urine for a prolonged period can actually trigger a flare just like you just had a hydrodistention and you have a flare of symptoms right after that hydrodistention. So if you can start identifying the triggers, that's the first part. And then, I think having a plan takes that anxiety away because what we see is patients kind of snowball. They start having an exacerbation of whatever symptom it is, burning, frequency, pain, and then they get anxious and the brain kicks in. So now the brain, that sympathetic nervous system is all revved up, and it's just creating this snowball effect.

So I think the physiological quieting techniques, and then there's specific things that we can do based on the phenotype, and that's where I think it helps to know what subtype you have. So if your symptoms are coming from the bladder, you have a bladder phenotype of one type or another, then a bladder instillation with an anesthetic, et cetera, might help. But if you have a muscle phenotype, a bladder instillation isn't going to do anything. You want to do something that's going to focus more on the muscles, muscle relaxers, heat, stretching, again things that can, Valium suppository, things like that. If you have a nerve phenotype, it's different, so knowing your phenotype and what may be the source of your symptoms, I think, is the key to treating your flares.

Diane Newman: Tell us what else you think is really important that you want to impart from this book because you have really a lot of good information. I have to tell you that I know you wrote it for individuals who have interstitial cystitis, but as a nurse practitioner, I found it extremely helpful and very informative and like you say, very up-to-date-

Jill Peters-Gee: Yes.

Diane Newman: Because there's been a lot of changes in this field.

Jill Peters-Gee: Yes. When I was researching, I realized that there was a tremendous amount of new information even in the past three years. So what the book is trying to do is help patients identify which subtype or subtypes they may have. Most people have more than one, but also to include the data, the hard research that supports what I'm saying in the book. So there are over 80 citations with current references, in part so the patients can bring it to their healthcare providers, but also so that healthcare providers know that there's data behind what's being presented, and it brings everyone up-to-date with where we're at in thinking with IC.

The other takeaway is really the ulcerative interstitial cystitis, the AUA Guidelines. We have good algorithms for treating ulcerative IC, but you do not know if you have a Hunner's lesion or a Hunner's ulcer if you don't look. And cystoscopy is not required to make the diagnosis of IC. The data that was gleaned from the MAPP Network is really that age plays a big role with ulcerative IC. So only 4% of individuals under 50 may have ulcerative interstitial cystitis, but 20% in those 50 to 70 and 55% in those 70 and over.

So I think that if you have a patient who's 50 or over, I personally think that men should have a cysto because there's a lot of data that suggests that there may be a higher prevalence of ulcerative IC in that group. Or if you have a woman with endometriosis in their history, you really should be just looking at the bladder. I think cystoscopy is important in those patients.

And then, the second thing that I have talked about in the book are what's called associated conditions. If you have a patient who you've gotten their pain under control, but they're still having frequency and urgency, it's possible that they have something like overactive bladder. If they have a urethral phenotype with lots of urethral symptoms and they're still having burning, their frequency is better, their bladder symptoms are better, but they're still having lots of burning, they may have genitourinary syndrome of menopause. So we can't forget that IC patients also have voiding dysfunction, obstruction, prolapse, endometriosis, menopause, and other things that we need to address. You need to address all of the phenotypes, the associated conditions, and recognize that the brain is probably playing a role, and there's a central sensitization occurring that we, I think, as urologists have been missing.

The MAPP Network has shown 44% of IC and bladder pain syndrome patients have at least one chronic overlapping pain condition such as irritable bowel, fibromyalgia, or vulvodynia, which would suggest that 44% of the IC patients' brains have become hypersensitive. So we have to address that, and we don't. We focus on the bladder and forget that you have to quiet the nervous system. And I think that's something that we've not done well.

Diane Newman: And it's true. And I think that is a really new concept that we have to get across because you're right, it's complex. It's just not, like you say, bladder-centric.

Well, thank you so much, and I'm here because I really found this fantastic resource, IC Journey to Wellness by Dr. Jill Peters-Gee. Thank you very much-

Jill Peters-Gee: Thank you.

Diane Newman: For allowing me to interview you, and if you have this condition, I think this is really a great resource. Thanks.

Jill Peters-Gee: Excellent. Thank you very much for having me today.