Q & A: Finding Better Relief Webinar


Presentations by Barry Jarnagin, MD, and Ragi Doggweiler, MD
June 5, 2010
Nashiville, TN

This page is also available in PDF format. View the taped webinar.

Causes

Is IC autoimmune? - I heard that 30% of IC patients develop lupus.
We do not know the cause of IC and are not sure how many patients with IC have autoimmune syndromes. The early epidemiologic study that looked at this showed the percentage was tiny; however, the percentage was high compared with the rate in people who don’t have IC. There are many different reasons that a patient may present with IC and other conditions. Read more about lupus and IC.

Please elaborate on the concept of an insult in chronic pelvic pain.
Many experts in IC, endometriosis, and irritable bowel syndrome (IBS) believe that some insult probably starts the cascade of chronic pelvic pain. In IC we believe that surgery, urinary tract infections (UTIs), and any kind of trauma to the pelvic floor may trigger the onset of symptoms. There may be some inflammatory condition that kicks off the cascade and starts this process. More research is needed to confirm these theories.

Does an abnormality in collagen contribute to pelvic floor dysfunction?
There are collagen differences related to genetics that predispose women to prolapse issues, but this is not the same condition as pelvic floor dysfunction (PFD). Here’s some additional information about PFD.

Is there a relationship between taking tetracycline long term and IC?
We do not know if there is an association between these medicines and IC. Many IC patients report having taken antibiotics for past sinus infections and/or recurrent UTIs; however, was it the recurrent infections or the antibiotics that triggered their IC? We do not yet know. It is also possible that it may be a combination of both.

Are there any connections between IC and prior use of Accutane?
At this time, we are not aware of any connections between IC and prior use of Accutane.

Symptoms

Secondary pelvic spasms have come on in the last seven years and I am using exercise and vaginal suppositories made of Valium for relief. Are there other treatment options?
There are many different approaches for pelvic spasms. Work with your doctor. Talk about when the spasms come on and what appears to trigger them. Try avoiding things (food, stress) that may trigger a flare. A physical therapist specializing in pelvic pain may also be helpful to you. (Keep in mind that pain may initially get worse with physical therapy.) Yoga is helping many of IC patients as well. Spasms normally do not need surgery!

Every time I have a bowel movement, I have an extreme flare of IC. What do you think is wrong?
The bowel and bladder have connecting nerves. It is not surprising that you experience discomfort with bowel movements. Ask your doctor about ways to keep your bowel habits healthier. This may also help to control your IC symptoms. Consider seeing a gastrointestinal (GI) specialist and physical therapist who specializes in pelvic floor dysfunction.

Treatments

What do you find effective for frequency?
A combination of things, not just one thing, is the best approach to control the urge “to go” often. InterStim is effective for some, pelvic physical therapy works others, and sometimes, medicines known as anticholinergics help once your IC is controlled.

How are bladder spasms treated? Does InterStim have any value for spasms?
There are different reasons for bladder spasms. Talk with your doctor to learn what treatment options may be best for you. Bladder spasms can be treated with medications, sometimes with diet, and sometimes InterStim helps control them.

What is the best cocktail for bladder instillation?
There are no studies demonstrating that one bladder instillation is better than another. Your doctor and you need to figure out which instillation works best for you. Some use Marcaine and heparin. Heparin is an anti-inflammatory and Marcaine is an anesthetic. Others use Elmiron or lidocaine instillations. Often a combination of medicines called a bladder cocktail is the best option.

Do you have InterStim patients who are still in chronic pain?
InterStim has not been approved for pain but for voiding dysfunction. Pain persists for some IC patients who have these implants. Patients with InterStim may also need to see a physical therapist, stick to their IC diet, and figure out strategies that help them live their life. This means finding what hurts you and what helps you. This varies from person to person. It is a discovery!

For me, Lyrica causes severe swelling and weight gain. Do other patients experience these side effects and should I continue to take it?
Lyrica is a medicine that is prescribed for pain. If it is helping with your pain, then you have to decide if the side effects are worth the benefit. If you get only side effects and no benefit after several weeks on Lyrica, talk with your doctor to decide if continuing to take this medication makes sense.

I had a hysterectomy for endometriosis and then developed pain. I am in a pain cycle that is daily. I have limited my diet to a few foods. IC is dominating my everyday life. I cannot take Elmiron. I do self instillations, and I have retention with Elavil.
You would do well visiting a pelvic pain clinic with pelvic physical therapy/trigger point injections and potentially other treatments added. A multidisciplinary and multimodal (combination of treatments) approach may be best for you.

I have had IC for 16 years and also suffer from generalized anxiety/social anxiety. My doctors have not been able to find a medication to treat these conditions because everything flares my IC.
This is where the multidisciplinary approach is vital. There needs to be medication and cognitive therapy, best done by someone who is an expert in these health issues. Some IC healthcare teams include a psychiatric nurse practitioner. Your IC doctor can work on the IC and the psychiatric nurse practitioner on the anxiety. Your situation is not uncommon. Most patients who have long-term health problems combat depression and anxiety.

I am having frequency 45 times a day and vulvar pain. Which treatment choice have you seen making the most improvement? I also have cold chills as my pain goes past a 7.
Sometimes, patients with this much pain need some five to seven different treatments over the course of several months to break the cycle such as a combination of instillations, Elmiron, and InterStim. You may also need cognitive therapy. You may also need an antidepressant.

What are treatments to increase bladder capacity?
The first step is to figure out why your bladder capacity is low. If your baldder is fibrotic, the bladder capacity can be expanded. If your bladder is overactive (requires emptying every 100 to 150 ccs or 3 to 4 ounces), urodynamic studies can determine if it is the pelvic floor muscles that need treatment and if instillations with a local anesthetic can be helpful. For some patients with low bladder capacity, physical therapy is helpful.

Does pudendal nerve dysfunction occur in IC?
Some IC patients have pudendal nerve dysfunction. The pudendal nerve is probably related to the chronic inflammatory pathways in the pelvis. However, surgery on the pudendal nerve is not the answer for everyone. For many patients with this dysfunction, trigger point injections or CT guided injections can be helpful.

What are the upper limits of safety with Botox injections into the pelvic floor? What is the effectiveness and success rate?
Currently Botox is experimental. Treatments typically wear off in six months. Though there are many protocols for injection into the bladder, there is no standard dosage. Most of the literature suggests utilizing two ampoules. However, we have to standardize this over time. Not all IC patients benefit. Some go into urinary retention and are not pleased with the results. It is case by case.

It has been recommended to remove our 23 year-old son’s bladder. What are your thoughts on this?
Surgery for IC is a last resort option. This is a big intervention and can be very traumatic for a patient.

Do you think cystoscopy with distention helps with a flare?
Yes in some cases, cystoscopy with distention can help with a flare.

Complementary and Alternative Therapies

How well does acupuncture work for IC?
IC is not a condition that has one cause and one treatment. Some patients get great benefit with acupuncture. Others do better with medications or hypnosis or homeopathy. Many patients do best with a combination of treatments. However, no two patients are alike.

To learn if complementary and alternative treatments might work for you, find a clinician who is certified in acupuncture. Check out www.medicalacupuncture.org and www.nccaom.org.

Do you recommend hypnosis? How well has it worked with frequency or pain?
Hypnotherapy can be very helpful with pain, and you can learn to hypnotize yourself and learn to control your pain on your own. However, there is not one approach that is the solution for everybody. If you go on the webpage of the American Society of Clinical Hypnosis (ASCH) you can find a practitioner close to you.

What happens in physical therapy?
If you have ever had low back muscle spasms, neck spasms, a muscle problem, you know that muscle needs to be lengthened and the spasm worked out. This requires kneading, massage, palpation, trigger point palpation, and other techniques. The only difference between the pelvic muscles and other muscles is that these muscles are more difficult to reach.

Look for a physical therapist who is specially trained to treat IC and chronic pelvic pain. Contact the American Physical Therapy Association, www.womenshealthapta.org/plp/index.cfm, 800-999-APTA, ext 3229.

Why do we do pelvic floor muscle massage after injections? In other muscles we wait two days.
Trigger point injections and physical therapy are done immediately after the injection, because at this point the muscle is ready to get trained. One risk in waiting two days is that the effect of the injection will be reduced because the muscle is not relaxed.

Is it a good idea to experiment with homeopathic remedies? Can they be dangerous or unsafe?
Some homeopathic remedies are safe and appear to help. Others are safe with questionable effectiveness. Others can have adverse side effects. It’s a good idea to discuss all therapies that you try with your doctor. Read more about IC and complementary and alternative medicines.

Pain Management

Is there a role for chronic opioids in IC pain management?
The best approach is a combination of treatments. Some people do well without opioid medicines, but others require more pain management. It is your choice. There may be times that you need pain medication.

Regarding conscious pain mapping: If it is bowel related, how can you tell when doing the mapping? Strictly by touching the bowel?
Pain mapping is done by the doctor touching and grasping the intra-abdominal viscera and peritoneum in an attempt to reproduce the patient's pain. This special laparoscopy can also be done in a conscious patient, who is then usually able to interact with the surgeon to help identify the source of the pain.

Long-term effectiveness and diagnostic accuracy of conscious pain mapping has not yet been established.

If mapping bowel pain, the determination is made by strictly touching the bowel.

Having suffered chronic pain for over 40 years and after having hundreds of tests and missed diagnoses, how do I live with all the overall body pain?
Finding a solution for 40 years of chronic pain may take a while.

Some pain may always persist, and pain meds have the unpleasant side effects of making you tired and weak.

Look into meditation and find routines that you can do on your own. Sometimes little things like listening to certain songs, writing letters to friends to distract from pain, being active in support groups, and helping others. Self hypnosis or meditation or prayer may some relief. Finding a good counselor to help find peace inside you could help.

Many little things that help can make a difference, but it is not going to happen overnight.

Posted August 25, 2010