News & Blog
Managing IC Care – Doctor’s Forum
From the spring 2016 issue of the ICA Update.
A pelvic pain specialist explains the role patients can play.
—Jennifer Yonaitis Fariello, MSN, CRNP
Fariello received her undergraduate degree in nursing from Thomas Jefferson University and her master of science and nurse practitioner degrees from University of Pennsylvania in Philadelphia. She is currently enrolled in the Human Sexuality Education doctoral program at Widener University in Chester, Pennsylvania.
Fariello is a member of several professional societies, including the American Urological Association, the International Pelvic Pain Society, the International Association for the Study of Pain, the American Association of Nurse Practitioners, and the National Association of Nurse Practitioners in Women’s Health. She is also active in the Interstitial Cystitis Association and the Naonal Vulvodynia Association.
She has presented at numerous professional meetings and has co-authored articles for journals, including OBG Management, Journal of Urology, and Journal of Female Pelvic Medicine and Reconstructive Surgery. She has co-authored chapters in a newly published international textbook on interstitial cystitis: Bladder Pain Syndrome: A Guide for Clinicians. Most recently she was one of three faculty members who helped develop and implement a CME educational program for healthcare providers about interstitial cystitis through the ICA and AUGS: Conquering IC: Identification and Management Strategies.
Fariello spoke with ICA Update about helping IC patients take an active role in managing their condition, the value of differentiating symptoms, and why support groups are so important.
Q: What is your practice like?
We are a nurse practitioner-run center for pelvic medicine within a urology practice. We get referrals from gynecologists, urogynecologists, and urologists. We do trigger point injections, and we work in conjunction with physical therapists, with pain management specialists, psychotherapists, rheumatologists—it’s very multi-disciplinary. We refer to our urology colleagues when patients need a cystoscopy or other procedures done; otherwise we primarily manage their care.
Usually our patients have been diagnosed and tried the basic treatments, which are just not working for them. Or they have pelvic pain symptoms and they’re just not getting anywhere with other people they have seen.
A lot of times, I see IC patients who also have pelvic floor dysfunction and vulvodynia. It’s kind of like a triad.
Q: How do you start working with IC patients?
We go through different theories and etiologies, symptomatology, and the treatments that are available. The urologist is always present at the first visit to meet the patient in case they need to have a cystoscopy or work with them. We go through all the treatment options and we build a treatment plan. We also give the patient written information—here are some good websites and books, etc. Then we bring them back in four to six weeks to see how they’re doing
Q: How do IC patients feel about their condition when you first see them?
A lot of them show up and say, “I was told I have IC and I’ll always have it,” and they get scared. I try to explain that IC is a chronic condition, but the challenge is that they hear that and they don’t hear the rest of the things you’re telling them. I’m finding that a lot more patients are doing research on their own, compared to 12 or 13 years ago, which is helpful, because if they have a little information, they’re more open to hearing that there are things that can help.
We try to calm their fears by telling them how it can be managed—how most of the time different behavior modifications can help people feel better. We say even though it’s a chronic condition, most people can get to the point where they can live productive lives.
It’s important to set realistic expectations. It’s true that a lot of times patients have to watch what they’re eating or take medication every day. We also tell patients they’re going to have flares, and that we’ll help them deal with their flares.
Q: Given how long it takes IC patients to be diagnosed and find appropriate treatments, how do you help patients who are frustrated?
A lot of IC patients have seen so many clinicians before— we’re often a tertiary referral. People have seen five to seven people before they get to us, and nothing has worked, and often they believe nothing is going to help.
They’ve had pain for 10 years and nothing’s helped before, and why should something help now? Or maybe it helped a bit and then the pain came back.
It’s really about getting them to a better place. One way to do that is helping them differentiate—maybe it’s not all your bladder; maybe it’s your pelvic floor and no one’s ever checked that. Then it’s about getting them to see the right people.
Q: How do you help patients to take an active role in managing their condition?
We initially focus on things that might help them in those first few weeks, until they start to learn about how their body responds. Everyone’s a little bit different. If we find their muscles are very tight—for both men and women—or if a woman’s vestibular glands are very sensitive, we might tell them to soak in a bath a couple of times a day with Epsom salts or oatmeal. It all depends on what they’ve tried before. Other options include oral medications, suppositories and muscle relaxants, and topical creams.
The first weeks are crucial. If patients start doing something and they have more pain, they tend to stop it. But if you give them tools that will help them feel better and mitigate some of that pain, they’re more likely to continue.
Another key issue is physical therapy. People often say they only went two or three times and never went back. Just telling them that they’re going to feel worse after physical therapy in the beginning and making sure they understand that the pain will eventually get better can help.
When we send people to physical therapy, we tell them to take a bath, or to use valium suppositories, or to fill a glove with ice and see if that helps after PT. Just letting them know that yes, it may feel worse at first, but here are some things you can do afterwards, makes a big difference.
Q: What do you focus on when patients come back for the follow-up visits?
I tell them it’s good that they even came back. That shows they didn’t give up.
Some people respond to oral medications right away, others need to go on to intravesical instillations. If something isn’t working, I always tell them there’s usually something else we can try.
Q: How do you help patients manage care between visits?
Often people say they have recurrent urinary tract infections and they’ve never had a positive culture. A lot of times local primary care physicians and urologists will just hand out antibiotics. So we tell them if they think they have a UTI to make sure they send a culture and not take antibiotics until they get the culture back.
A lot of times, I’ll give patients a prescription and a sterile cup. Then they’ll take their own sample to the local lab and call me to let me know they dropped off a sample so I know to look for the results. That gives them freedom. They don’t have to go to another doctor’s visit. If they do have culture-proven recurrent UTIs, I then give them a short-course antibiotic to take as soon as they collect their urine while we are waiting for their cultures to come back.
Q: What treatments do you encourage patients to try themselves?
If patients respond to anesthetic intravesical instillations, they can do them themselves at home or have a family member help with a catheter. We always do a series in the office first to make sure they respond to the treatment and are able to void without difficulties afterwards. Once this is established, they can do it themselves.
Some people are fine with it. Some people don’t want to do it. Some have a family member help them. It’s very individualized.
Q: What are biggest challenges to managing IC?
We know with IC there are many comorbidities, so just managing everything is a challenge. It used to be that your primary care provider coordinated everything. Now I think the patient really takes their care into their own hands.
It seems like once they get to a specialist who knows IC, patients already know who to go to for their other conditions. Still, we go through the questions when we first meet someone—are you constipated? People will say they’ve been constipated for years, and their pelvic floor is tight. Well, if you push and strain and make the pelvic floor tighter, that means you have to get it under control. You have to take it piece by piece, and this is all part of the puzzle.
We have a great network of people who know how to deal with patients who have these comorbidities. We’ll give them the names, but they have to take the initiative.
Q: What else do you do to help patients manage their condition?
I refer them to support groups. It’s a great way to discuss their condition with other people, and they can bring their family members if they choose. I also refer patients to psychotherapists who deal with chronic pain issues all the time.
Having an outlet is really important. When people have been dealing with this for so long, it affects so many different aspects of their well-being—physically, mentally, emotionally. It affects their relationships with family members, with their friends. They don’t go out as much and don’t have as many social supports. If they don’t have an outlet, it really takes its toll after a while.