The podcast began with introductions by our guest moderator, Samuel Hughes, and our guest speakers, Janet Dean, Yolanda Rodriguez and Dr. Benjamin Greenberg.

The session began with a general introduction to bladder, bowel, and sexual issues that can arise after acute non-traumatic spinal cord events.

Dean: Persons with neuro-immunologic conditions often have neurogenic bowel and bladder caused by an injury to the spinal cord. Bowel and bladder issues can range from urgency and frequency to the inability to empty the bladder or have a bowel movement without assistance. In order to create a bladder management program it is important to be evaluated by a urologist with knowledge about neurogenic bladder. A thorough evaluation generally involves testing such as a kidney and bladder ultrasound as well as urodynamic studies. Rehabilitation specialists often do management of neurogenic bowel although there are some gastrointestinal doctors that are familiar with neurogenic bowel. Evaluation involves a rectal examination to determine the function of the rectal sphincter. Once a thorough evaluation is completed a plan can be made for management of your specific issues.

Rodriguez: Primary sexual dysfunction results from direct injury to the spinal cord (decreased libido, reduced or altered genital sensations, decreased vaginal lubrication, problems in achieving or maintaining an erection, and diminished ejaculatory force/inability to ejaculate, and decreased orgasmic response. Secondary sexual dysfunction results from various symptoms that may be caused by TM (fatigue, spasticity, bladder and bowel problems, and pain). Medications side effects can also cause secondary sexual dysfunction as well. Tertiary sexual dysfunction is used to describe effects caused by psychological and cultural responses (body image, role change). Intimacy and Sexuality Questionnaire-19 (MSISQ-19) will help evaluate b/w primary, secondary, and tertiary dysfunction.

Q: How can I tell if my 4 year old with TM has any sensation to be potty trained?

Dean: Potty training a young child with TM can be challenging, especially if the child was not potty trained prior to TM. I would recommend evaluation as outlined above. If your child is unable to tell when his bladder or bowel is full or if they need to use the bathroom they will have difficulty potty training. If your child can feel when they have a full bladder or bowel, regular potty training techniques can be used. Obtain a potty-chair or commode chair that they can get to or be placed on and see how successful they can be with potty training. For social reasons it is important for children to be continent of bowel and bladder at least by the time they start kindergarten. If they are not successful with traditional potty training, an alternative method of emptying the bowel and bladder will need to be developed so your child can be reasonably free of accident by school age.

Q: My son suffers from chronic UTIs and is on continuous Bactrim. Will cranberry pills help and how long can he take the Bactrim without it harming him?

Dean: Using an antibiotic to prevent urinary tract infections is controversial. On the one hand, it may prevent symptoms for a period of time while you are taking it, on the other hand it may just kill the weak bacteria and allow the strong bacteria to survive, eventually causing UTI’s that are more and more difficult to treat. Drinking lots of fluids, emptying your bladder completely every 4 hours during the day (8 hrs. at night), using good hand washing if you are on a catheterization program and managing constipation are the best ways to manage frequent urinary tract infections. Frequent urinary tract infections can be caused by bowel constipation as stool can press on the bladder or urethra and cause difficulty completely emptying the bladder. An abdominal x-ray to evaluate constipation can be done. If you are constipated, changes to your bowel management to promote more effective emptying may help to decrease urinary retention and urinary tract infections. Cranberry tablets, Vitamin C and d-mannose are supplements that people have found helpful in reducing urinary tract infections.

Rodriguez: I would further discuss with your urologist. Determine cause of UTIs (urinary retention?). If current urologist is unsure how to proceed, determine if there is a neuro-urologist available for consultation. Ensure that child is drinking ample water, decrease caffeine or bladder irritants, practice timed voiding, initiate or increase catheterization if needed, if cathing, review proper technique, single use Foley catheters only especially since there are recurrent UTIs. Depending on the age and mobility of the child – ensure basic hygiene. Cranberry juice/tablets have been shown beneficial to promote bladder health – including in pediatrics — discuss dosing with urologist according to age/weight of child. Daily antibiotics may be needed for a specific time; however the need for ongoing use should be discussed routinely, especially if person is building resistance to varying antibiotics. Determine if there are other alternatives that have not been considered at this time.

Q: I can handle my bladder during the day, but my problem is that at night I have to urinate off and on and am not aware of it. I wear Depends but would like to get to a point where I can wake up when my bladder needs to empty. Are there any strategies to help achieve this?

Dean: You could talk with your urologist to see if there are medicines that may help you with this. Maybe a medicine at night to relax your bladder a bit or possibly a medicine that causes you to produce less urine at night.

Rodriguez: Limit fluids approximately 3 hours before bedtime. For acute nocturia – evaluate for UTI (enlarged prostate, sleep apnea, diabetes and heart failure can also lead to nocturia). Review medication list. Are you on a diuretic? See if you can take it earlier in the day.

Q: After spinal cord injury or disease that affects bowel and bladder function, is there any long-term damage done to those systems, for example, cancer or kidney infections?

Dean: There is some evidence of increased rate of cancer in those with indwelling catheters – suprapubic and Foley.

Q: I have been using the Magic Bullet suppositories for a few years. Is there any way to retrain the bowel so that I can stop using them? 

Dean: If you think your bowel function has improved you could try weaning off of the suppository. If you are unsuccessful at having a bowel movement every other day you should be sure to administer a suppository.

To wean off suppositories:

1. Cut in half and use that for 1-2 weeks.
2. Then go to every other day for a couple of weeks.
3. Continue along this line until you are no longer using suppository.
4. Main point to note: only change one thing at a time when working on an issue and give it time to work – a couple of weeks – before evaluating and starting another change.

Q: I have a suprapubic catheter with limited success. I dislike using the bag. Is there anything that can stop me from leaking between emptying?

Dean: You will need to understand why you are leaking. Is your urinary sphincter weak? Is your bladder able to hold an adequate volume (350-450cc for an adult)? Is your bladder spastic? What is your fluid intake? If you have had you suprapubic tube for a long time attached to a leg bag, your bladder capacity may be very small as it never had to fill up. You will need to know how much urine your bladder hold before it leaks and then adjust your fluid intake and how often you empty your bladder through the tube. If your bladder is spastic, you could ask your doctor about using a medicine that would relax your bladder to allow it to hold larger volumes. I would not expect or recommend you go much longer than every 4-5 hours without emptying you bladder.

Rodriguez: Catheter valve is a valve at the end of the catheter used in place of a drainage bag. Urine is stored in the bladder and is emptied through the catheter straight into the toilet or bag. There are two kinds of bags: a leg bag and a bag used while you are in bed.

Q: As functionality returns down the spinal cord through PT, water therapy and time, will bowel, bladder and sexual function return?

Dean: The lowest level of the spinal cord controls bowel and bladder functions. If signals are blocked almost anywhere along the cord, unfortunately bowel and bladder function is often affected. If you are recovering function below the level of your injury, I would remain optimistic that you will recover bowel and bladder function.

Rodriguez: Some patients may have full, partial, or no recovery. However for those patients who do not have full recovery there are a myriad of options available to cope and overcome these changes. Bowel, bladder and sexual function changes can impact quality of life; it’s important that you discuss your concerns with your doctor and I would recommend seeking professional counseling as well.

Q: How effective are bladder Botox injections? What are the expert’s thoughts on nerve stimulators for the bladder?

Greenberg: Botox is effective but with risks. Dosing is an art with much guess work. Too much Botox can cause a patient to need to self-catheterize.

Greenberg and Dean: Bladder stimulators can improve relaxation, but we have seen an increase in failure rates after 1-2 years – not sure why. It just quits working. It is good for overactive bladder, but does not work with dysfunction of the sphincter muscle. Older models may not be compatible with MRIs, but there may be ways to get an MRI with the newer models in place. Need for future MRIs is an important consideration when thinking of getting a stimulator.

Q: What are sexual side effects of the different neuropathic pain medications and how do you manage those side effects?

Greenberg: This is more in antidepressants – especially SSRIs – rather than the anti-epileptics like Neurontin. May need to take trial periods off of a drug to discover if it is what is causing unwanted side effects. If sexual dysfunction is an issue on SSRIs, the addition of bupropion can sometimes be considered.

Rodriguez: What should you do if you are experiencing sexual side effects? Medications may be indirectly causing loss of libido (fatigue, depression, constipation). Plan sexual activity as medications are wearing off. Stress/Worrying can make things worse. Communicate with your partner and be educated. Be aware when reviewing medication side effects there are several that cause dry mouth. This may potentially also increase vaginal dryness. Rates of sexual dysfunction observed in clinical practice may be higher than those reported in product information but it is still believed that in many cases only a minority of the people taking the medication will experience sexual difficulties. The three most common medication-induced sexual side effects include: decreased sexual interest (libido), decreased physiological arousal (including lubrication in women and erection in men), and delayed or blocked orgasm. Sexual side effects are typically less reported and evaluated by healthcare professionals, so advocate for yourself.

Q: What are the sexual side effects of sedatives and sleeping pills like Ambien, Sonata, Halcion, and Xanax?

Non-benzodiazepine hypnotics side effects:

1. Ambien/Zolpidem – There have been reports of decreased sensitivity to touch and other sensations, they can also cause decreased libido, erectile dysfunction, or inability to achieve orgasm.
2. Sonata/Zaleplon – It can also cause aggression, agitation, hallucinations. Take it right before bed. Reports of erectile dysfunction were few.
3. Lunesta/eszopiclone – Change in libido is a side effect.

Benzodiazepines side effects:

1. Halcion/Triazolam – Changes in libido
2. Xanax/Alprazolam – Decreased libido; difficulty ejaculating or having an orgasm.
3. Restoril/temazepam – Changes in sexual desire or ability.
4. Klonopin/clonazepam – Decreased sex drive, difficulty ejaculating or having orgasm, erectile dysfunction.
5. Be sure not to abruptly stop taking these medications.

Q: Is yohimbine effective in women or men with sexual dysfunction caused by TM?

Rodriguez: The yohimbe bark extracts and supplements labeled yohimbine that are sold in health food stores and through the Internet contain varying amounts of yohimbe as well as other ingredients. Yohimbine hydrochloride is a standardized form of yohimbine that is available as a prescription drug in the United States. There is limited and conflicting data available and if taken, care IS needed as it can cause increased anxiety and it also may interact with certain neurological medications. A discussion of medication dosage is also needed as higher dosages have been associated with priapism, changes in blood pressure, seizures, etc. It MAY have some benefit in certain people (treatment of: ED, anorgasmia, loss of libido). Some suggest that it may be more effective for those patients with psychological vs. physical sexual dysfunction.

Q: What is known about erectile and ejaculatory dysfunction in men with TM that is different from men with age-related ED and how are they treated differently? Do TM patients have a different reaction to drugs like Viagra and Cialis?

Greenberg: There have been no formal studies, but experience seems to indicate that the effect is lower than in other populations. May not have enough sensation to achieve climax. Generally ED meds alter volume of blood flow, which may not be the problem with TM patients. They do not augment diminished sensation.

Rodriguez: If you are able to obtain an ejaculation, you may notice reduction in volume, force, and/or sensation. Penile vibratory stimulation (PVS) is used in spinal cord injury patients. With this method, a vibrator is placed at the tip of the penis, triggering a reflex ejaculation (high vs. low amplitude vibrators). Would also recommend reviewing medication list to determine if you are on a medication that may be contributing to sexual dysfunction.

Q: The UK, New Zealand, and Australia warn against fathering a child while taking azathioprine (Imuran). Labeling in the US warns against pregnancy but not fathering a child. Is there solid evidence one-way or the other?

Greenberg: While there are warnings against women using this drug when trying or being pregnant, there have been NO studies that have looked at effect on fetus if father was on it. Animal studies indicate there is probably low risk of birth defects or chromosomal abnormalities when father is on drug. Might consider going off drug for a short time in order to harvest sperm to freeze for in vitro fertilization.

Q: I am a 58-year-old female, paraplegic after TM at T4. Do you have any advice about sexual function or stimulation as I have very limited sensation?

Rodriguez: Body mapping: without judgment or guilt take the time to explore the exact location of pleasant, decreased, or altered sensations over your entire body so that you can direct your partner to areas that feel good vs. areas that cause discomfort. There are FDA approved devices that help increase blood flow over time – Eros Therapy is a conditioning routine to restore blood flow to clitoris and genitalia and to increase orgasms, vaginal lubrication and overall sexual satisfaction. Eros Therapy is available by prescription only. Make sure to use plenty of lubrication water-based lubricant. Avoid synthetic based lubricants as they can further cause vaginal dryness. Talk to a sex therapist about psychological aspect of sex – include your partner as well. Talk to your partner and have patience and a sense of humor. Clitoral and vaginal vibrators are available commercially. May want electronic, wall powered vibrator as these typically have higher voltage.

Q: I am a 56 year old female with TM for 8 years. My periods stopped after the third year following the TM event. Is that from the TM and will I still go through menopause?

Greenberg: If there is a change in cycles, always check hormone levels. Symptoms of menopause are often masked by TM symptoms. There is no known link between TM and menopause.

Q: Is bladder augmentation a potential consideration for neurogenic bladder?

Dean: This is used after prolonged spasticity – bladder cannot expand and can’t hold much volume and used mainly in pediatric population. Not used so much in adults as other treatments are used first.

“Take home” points

Dean: Get a thorough exam by a specialist familiar with neurogenic bowel and bladder before pursuing treatment. You want to make sure you are targeting the right problem. Constipation can cause bladder issues.

Rodriguez: Make sure you can identify if root of sexual dysfunction is primary (physical impairment), secondary (side effects of drugs) or tertiary (something else – maybe environmental or psychological). Plan Sex. Focus on enhancing intimacy vs. achieving erection/orgasm. Make sure to use plenty of water-based lubricants. Get routine gynecologic/prostate exams.

Greenberg: These are topics that are difficult to talk about but are of vital importance to your quality of life. Please bring your concerns up in your clinic visits. Please advocate for yourself.