It is with delight that we introduce urologist Dr. Elise De, who has spent the majority of her career working with pelvic pain patients. She spent the past five years developing the pelvic health program at Massachusetts General Hospital where she co-edited the fabulous new book, Facing Pelvic Pain. In March 2022, she joined the Dept. of Urology at Albany Med where she is developing a similar program. Dr. De specializes in urogynecology, pelvic medicine, reconstructive surgery, neurourology and voiding dysfunction in all genders. She cares for patients with pelvic organ prolapse, urinary incontinence, voiding dysfunction, neurogenic bladder (loss of bladder control resulting from a brain, spinal cord or nerve condition) and pelvic pain. She is chair of the Education Committee of the International Continence Society and works closely with the Society of International Urology, American Urological Association, and the International Urogynecological Association.
Facing Pelvic Pain is the first comprehensive review of conditions which can trigger pelvic pain and, in many cases, mimic the symptoms of IC. Can you share any interesting patient stories? Perhaps a patient who had been diagnosed with IC for years only to discover that something else was triggering their symptoms?
(Dr. Elise De) There are lots of interesting stories. Often, I receive a referral for interstitial cystitis in a patient who simply has pelvic floor dysfunction or another simple cause of pelvic pain. The diagnosis says more about the level of knowledge or interest of the referring physician. One story I have heard over the years is that of a woman who’s had a cystectomy (or hysterectomy) for pelvic pain and the pain continues after surgery. Sometimes when I send this patient for pelvic floor physical therapy the pain improves. Historically, we didn’t really understand that pelvic floor muscles could cause pain. Fortunately, there’s a lot of data supporting this now. Nowadays, a stepwise approach should always be taken, considering the least invasive interventions first.
In men, prostatitis and interstitial cystitis are obvious diagnoses assigned by urologists. But sometimes these men will have primary bladder neck obstruction, a simple tightness of the bladder neck muscle which can be treated with a medication called an alpha blocker, or pelvic floor dysfunction which can be addressed by pelvic floor physical therapist. Bladder neck obstruction can be present in women as well.
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?
(Dr. Elise De) When I see a young, otherwise healthy person, who has interstitial cystitis, irritable bowel syndrome endometriosis, heartburn, migraines, fibromyalgia, palpitations, TMJ, ringing in the ears, and asthma, I point out to them that it’s extremely unlikely that they would have developed all of these conditions independently. There has to be a common cause. We have published a paper regarding the fact that 2/3 of people who have multiple pain syndromes end up having a small nerve fiber neuropathy (SFPN). This is when the small nerves responsible for pain and organ function (different from the large nerves that pass through the spine and make the arms and legs work) are damaged. Sometimes this is due to an autoimmune disorder and sometimes due to a vitamin defi- ciency. A cause is found in 40% of cases. If we don’t find the cause, it’s very helpful to have a name for the problem, because in my experience these patients are most likely to hear from a physician that the problem is in their head. Central sensitization of pain is also a very important concept as the brain learns to anticipate pain and potentiates it as a misdirected survival response. We are learning more about peripheral neuropathy and central sensitization and their relationship to one another. These are real physiologic conditions that help to explain why people suffer so much.
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 wh