Meet the IC Expert – Dr. Elise De

In extreme cases, I have seen tethered spinal cord or sacral tumors misdiagnosed as interstitial cystitis. These cases are rare, but would be suspected if there is difficulty with leg muscles, bowel, or sexual func- tion at the same time. The worst case of I’ve ever seen was a 20 year old female who had suffered childhood sexual abuse. Her pelvic pain, which started during a growth spurt at age 14, was assumed to be psychological. She was overmedicated for most of her teenage years. In the end she had a tethered spinal cord, where the tip of the spinal cord is stuck at the base of the spine and the spinal cord ends up on tension. By the time we diagnosed her she had permanent neuro- logical damage from the waist down.

What common gynecological conditions can lead to both IC and pelvic pain?

(Dr. Elise De) We often see interstitial cystitis in combination with endometriosis, and both can lead to pelvic floor muscle tightness. It’s possible that the nerves serving both the gynecological organs and the bladder are cross talking and leading to elevated pain signals. It is also possible that they are triggering the brain to anticipate pain. Interestingly, treating both conditions is more successful than treating either alone.

Many IC patients have had hysterectomy, been placed on chemical menopause or are post-menopausal are unaware of how estrogen atrophy affects their bladder, urethra, vulva and vagina. Many continue to use bladder therapies with little luck. What are your therapeutic priorities for this group of patients?

(Dr. Elise De) If there is no history of breast cancer, I will use vaginal estrogen. The nerve endings have estrogen receptors and will be stabilized by its presence. It’s important to note that the estrogen takes about three months to work as it directs the body’s formation of cell layers. Just a simple list of vulvar irritants can also be helpful, for example, types of toilet paper and soap.

Men often complain of pain in their penis and particularly at the tip of their penis. Why does this happen? What tips can you offer to men who struggle with this type of pain?

(Dr. Elise De) Pain in the bladder, the prostate, and the pelvic floor muscles are referred to the penis and the tip of the penis. In these situations, I will recommend a multi factorial approach. We can evaluate whether the bladder neck or prostate is causing obstruction, and if so, to address this. Bladder sensitivity can be addressed with medications such as anticholinergics. Pelvic floor phys- ical therapy can help with the pelvic floor muscles. It can be helpful to employ more than one approach at the same time.

Men with pelvic pain, especially young men, face unique hurdles in receiving a comprehensive diagnostic workup as many urologists immediately assume prostatitis. What can a man do to assist in their diagnostic workup?

(Dr. Elise De) I think it is extremely important for any patient of any gender to be educated about their condition. Pelvic pain is so complicated that physicians are challenged. It also takes a lot of time to get the story straight. Without a positive culture, I would not treat with antibiotics. Symptoms suspicious for prostatitis might include bladder neck or prostate obstruction, pelvic floor muscle dysfunction, interstitial cysti- tis, and neurologic conditions such as a tarlov cyst or a systemic neu- ropathy.

There is considerable debate about the relationship, if any, between interstitial cystitis and overactive bladder. Do you believe that these represent the same condition?

(Dr. Elise De) This may come as a surprise to your readers, but I often will send people to your website even when they don’t have IC. Many of the treatments for overactive bladder work for IC and vice versa. For some of my patients, I tell them it’s not essential that we name the diagnosis, because we’re going to take the same diagnostic path. I am most likely to have this conversation when someone’s prior physician diagnosed them with interstitial cystitis and I’m not sure that’s what they actually have. It can be disappointing and unsettling when prior care is ques- tioned.

Why do so many IC patients, especially those whose symptoms began at younger ages, also develop irritable bowel syndrome, fibromyalgia or TMJ?

The role of both muscle and skeletal problems in triggering pelvic pain and IC symptoms is rapidly developing. What events or activities typically trigger pelvic floor muscle dysfunction?

(Dr. Elise De) For me, pelvic floor muscle dysfunction is always the first thing I suspect in pelvic pain. If it is not the cause, is often a contributor. I’m like a broken record. It’s very easy to examine these muscles during a pelvic or rectal exam. Anything can cause pelvic floor muscle spasm and the person who has it might not understand the muscles are tight. A urinary tract infection, a fall on the coccyx, a traumatic event, a bunion leading to uneven balances of weight in the pelvic floor muscles, a knee problem, or scoliosis. A trained pelvic floor physical therapist can almost always help, and if he or she cannot, it definitely helps with the diagnostic work up. With COVID, I have seen a rise in problems associ- ated with sitting all day. It is impor- tant to protect the coccyx from strain and to pay attention to the ergonom- ics at the workspace as we have had fewer reasons to get up for the desk this year. Lastly, many people find this therapy intimidating. I would recommend going to at least one visit to learn more about the muscles.

With new research demonstrating that chronic overlapping pain conditions may be the result of continuous fight or flight (aka the sympathetic nervous system), what is your treatment priority for these patients?

(Dr. Elise De) That is an interesting question. I like to approach the situation from all angles, including physical and psychological therapies. In these folks I would most certainly look for small fiber neuropathy to reassure them with a diagnosis if we can get one. It is essential to consider mind body interventions for central sensitization of pain. I have heard that meditation and other strategies can make a big difference. I’ve also seen that patients really benefit from teaching their brain to understand that they are not in danger. Systemic medications can help reduced neuropathic pain. Overall, the more contributors we can treat, the better the pain will be overall.

Why do so many pelvic pain and IC patients struggle with anxiety? Is uncontrolled anxiety worsening their bladder and pelvic pain symptoms?

(Dr. Elise De) I’ve always wondered this. I think some of it again traces back to the nerve endings. But if you think about the mind-body connection, if you’ve ever been close to getting in a car accident, afterwards your whole body is reacting. Pain does the same thing. Especially with respect to the bladder, the mind-body connection is like a superhighway. For our entire lives we’ve perceived sensation and made decisions based upon this, for example whether it’s appropriate to urinate. So when the messages are out of whack, the brain is still making decisions.

Pudendal neuralgia appears to play a role in many IC patients, as demonstrated by PGAD and sciatica. Unfortunately, many urologists appear unwilling to diagnose or treat this. Which specialist normally manages pudendal neuralgia? What therapies appear to be the most suc- cessful, particularly for patients who have pain while sitting?

(Dr. Elise De) I have to admit pudendal neural- gia is extremely difficult. There are four locations where the nerve can experience compression, and without pelvic EMG, it’s difficult to determine where. There are very few people specialized in this EMG. There are a few people around the world who are good at the surgeries for puden- dal nerve decompression, but not many. The first thing I would do is pay careful attention to the seating surface and two only ever sit on cushions. Stand up when pain starts. Pelvic floor physical therapy can be helpful if it is a muscle compressing the nerves. Neuro modulating med- ications such as gabapentin can be helpful. Pain specialists who are comfortable performing pudendal nerve blocks would be the first step beyond this and thereafter release of nerve entrapment with an experi- enced surgeon.

Do you believe that IC is an autoimmune disease?

(Dr. Elise De) This is an age old debate. Does it have to do with a lack of connection among the cells lining the bladder, exposing the nerves underneath? Is it more of an allergy prone condition, or is it based on the pain fibers of the nerves? I definitely think small fiber polyneuropathy is part of the picture in many people with IC, and autoimmune disease is associated with small fiber polyneuropathy. We are starting to learn more about these conditions and their relationships.

There is considerable debate about the role of chronic bacterial infection. Fans of Dr. James Malone-Lee suggest that IC is not a real disease and that most IC patients are misdiagnosed. What are your thoughts about this debate?

(Dr. Elise De) IC is most certainly a real disease. How disheartening for someone suf- fering with IC to hear that it isn’t real. I’ve seen terrible misuse of antibiotics in people with IC/bladder pain syndrome. In fact, overuse of antibiotics can lead to small fiber neuropathy. A person should only ever be prescribed antibiotics based on culture and standard evidence.

Do you support the use of long- term antibiotics for IC patients?

(Dr. Elise De) Never.

Pain control is a very delicate topic today. Using the CDC guidelines as justification, many pain patients have been fired by their clinicians and/or forced off of opiate medica- tions, even when used in low doses. Does your book cover pain manage- ment? What advice would you give to patients who are struggling with severe pain every day but who cannot find a provider to help them?

(Dr. Elise De) Unfortunately, it is very easy to get labeled as a drug seeker in this envi- ronment. It is also very easy to get stressed and to be impolite with office staff when in pain. It is impor- tant to try to maintain a courteous relationship with one’s current pain management specialist even if seeking a second opinion. There are contracts in most pain management offices, and it is essential not to break them. Multiple overlapping options for pain medication are explored in table form in chapter 12. There are creative options that can help people who have traditionally received opiates in collaboration with a good pain management specialist, for example suboxone and methadone. I actually have not prescribed a narcotic since 2017 and have managed to treat or resolve pain in hundreds of people, in collaboration with my multidisciplinary colleagues.

Some patients struggling with pelvic pain immediately assume that surgery must be performed. IC patients, for example, often ask their doctor if they can remove their bladder. How often is surgery necessary for the typical IC patient?

(Dr. Elise De) If pain can definitely be localized to the bladder rather than the sur- rounding organs, and everything else has been tried, bladder removal can help. In my practice which has many people with pain, we probably do this about once per year. The Treatment Map at www.facingpelvic- pain.org can show the reader just how many different options are out there prior to having an organ removal. The organ removal is the last step.

Of the oral and intravesical “IC therapies”, with which do you find the most success?

(Dr. Elise De) These medications are all listed in table format in chapter 12, as well as in the Treatment Map. If someone has difficulty starting the urinary stream I will use an alpha blocker. This helps relieve the stress on the bladder. Anticholinergics and phenazopyridine can also help. The tricyclic antidepressants most cer- tainly have a role. I use bladder instillation therapy in people who can self-catheterize without extreme pain, But I don’t use instillations as often as one might think. I find most people don’t wish to come to the clinic for these therapies. If we can identify bladder irritants, certainly I love using diet as a modality. Botulinum toxin to either the bladder or bladder neck and sacral neuro- modulation can be helpful.

Interestingly, the pain medications aimed at neuropathic pain such as gabapentin, pregabalin or duloxetine can be very helpful. It is essential to keep track of what has been tried in the past to know what to try in the future.

How can a patient work with a doctor who doesn’t believe that their pain is real or that IC is a real condition?

(Dr. Elise De) I don’t think that is a good situa- tion for a patient. If forced, the best one can do is to educate oneself about the diagnosis and to suggest things to the doctor. Whereas I have always believed in my patients, over the years, my patients with IC have educated me a great deal. Knowing what has worked for them, in combi- nation with my continued reading, has helped me with future patients.

Some IC patients report that their symptoms began in childhood, often at a very young age. Any idea why that would occur? Genetics? Injury? Hormones? Bedwetting?

(Dr. Elise De) I don’t have a perfect answer here, as no one has a crystal ball on this one. But when I hear this in the history, I often think of allergy or small fiber neuropathy is having a greater role. There are genetic causes of neuropathy for example. Interestingly, I often see similar symptoms in parent and child, although it may be more severe in one or the other.

What advice and/or encouragement could you give to parents with children struggling with IC symptoms?

(Dr. Elise De) I would suggest believing in yourself and your child. The pain is real. Keep very careful track of the records in an organized format. Continue to seek specialists who are earnestly trying to help. Don’t be offended if you are quizzed about the possibility of abuse. This is simply the responsibility of the provider. Definitely look for autoimmune disease, rheumato- logic disease, or small fiber neuropathy if there are systemic symptoms, and tethered spinal cord or Tarlov cysts if not. Educate yourself and your child as best you can. As the story becomes more complicated, the best chance for success is knowing as much as possible. Do not give up hope, and be sure to have firm but empathetic boundaries on behavior with your child. Discipline and education should remain priorities. Ideally a pediatric psychologist with experience in medical disease would help support your child and your family through the challenges associated with growing up with pain.