(Updated April 2011)
Readers have sent NM some tough questions in recent months. For the following six queries, we recruited a panel of experts in spinal cord injury and women’s health. As always, consult with your physician to pursue a course of action, but since your doctor probably isn’t on our panel, perhaps these leaders in the field can give you a starting point for reclaiming your health.
– The Editors
Dr. Amie B. Jackson is a physiatrist with a practice in spinal cord injury and other spine disorders. She is chair of the Department of Physical Medicine and Rehabilitation at the University of Alabama at Birmingham School of Medicine and assistant medical director of Spain Rehabilitation Center. In 1988 she founded the Reproductive Health Clinic for Women With Disabilities, which was the nation’s first reproductive health clinic for women with disabilities.
Dr. Marca L. Sipski-Alexander is medical director of inpatient acute rehabilitation services at Renown Rehabilitation in Reno, NV. She is the former chief of SCI Services at the Miami VA SCI Unit and project director of its Center of Excellence in Functional Recovery in Chronic SCI. She has served as the project director of the South Flordia Model SCI System, housed at the Miami Project of Cure Paralysis, University of Miami School of Medicine. Dr. Sipski-Alexander has had a longstanding interest in understanding how spinal cord injury affects female sexual function and in determining methods to improve sexual responsiveness.
Dr. Carol J. Bennett is a clinical professor of urology at the University of California, Los Angeles, and chief of urology at the Greater Los Angeles VA Medical Center. Formerly she was chief of urology at Rancho Los Amigos Medical Center, where she published extensively on urology and male infertility. She is also the author of numerous articles evaluating the use of bladder substitution, as well as the long-term response of the neurogenic bladder in SCI.
Menopause or Dysreflexia?
Q: Is there any information relating SCI and menopause? I had my first hot flash in April 1998. It was mild and I didn’t connect it with menopause. The weird part was that I only flushed on my left side. As the symptoms progressed, I began sweating – again, only on my left.
In November 1999 the symptoms began to be discomforting and I started taking Estroven – over-the-counter soy estrogen – with good results. But within six months the symptoms escalated to the point of interfering with daily life. Sometimes I couldn’t tell if it was menopause or dysreflexia. I only sweat when I’m sitting up, so I lie down a lot. The sweat runs down my face and neck and I freeze – on the left. I spent much of this past summer either under a blanket or lying out in the sun, I stay flushed most of the time. People are always asking if I’m sunburned. The increase in skin temperature keeps my face dry and itchy. I don’t have night sweats or insomnia. In fact, I seem to sleep more – maybe because I lie down so much.
I have had minimal, short term relief with Delestrogen injections. Subsequently, each period has been worse, with heavier flow and increasing clots. My gynecologist has suggested uterine ablation or hysterectomy, but I’m not going there yet. Besides, that won’t “cure” the problem.
My husband has been very patient with me, but now even I can see how all this is causing me – and my family – emotional stress. Is it uncontrollable with the usual therapies because of the SCI? Do you have any suggestions? Is there any literature we can access? Is there someone out there who can help?
A: There is very little information about the effects of menopause on spinal cord injury and vice versa. Many postmenopausal women who come to the UAB Reproductive Health Clinic for Women With Disabilities, will describe symptoms such as hot flashes, sweating, flushing, sleep and mood disturbances, headaches, blood pressure swings and pulse changes. These changes may be pain – should be explored. Also, musculoskeletal changes such as lumbar stenosis, scoliosis or hip subluxation below the level of injury may develop with aging and may worsen dysautonomia while sitting. Pressure sores and gynecological disorders may cause chronic dysreflexia symptoms. Hormonal fluctuations may also contribute.
Once the cause is determined, it can be treated. Often this will eliminate or lessen the sweating episodes. If no new problems can be found, then treatment of the post-menopausal symptoms may be tried using a combination of a hormonal regimen and medications used in autonomic dysreflexia. Hormone requirements should be chosen based on efficacy of treatment with minimal side effects. Careful examination of the cardiovascular and skeletal benefits of hormone replacement therapy should be weighed against side effects and risks for each woman. Autonomic dysreflexic medications are more limited. Transdermal scopolamine patches and oral fludrocortisones acetate (Florinef) have been used in the past, but side effects such as a slowing of bowel movement with impactions and water retention can be significant.
The above question and problem is frustrating for many individuals with spinal cord injury. It underscores the need for more information on how the consequences of aging following spinal cord injury affect the neuro, endocrine and cardiovascular balance in women.
— Amie B. Jackson, M.D.
Vaginal Burning, Poor Drainage
Q: I am in desperate need for someone to help me with my problem. I am a female, 20 years post injury, C5-6 incomplete quad with sensation. I have had vaginal burning for the last 15 years being in a chair. My gynecologist puts me on vaginal creams. He also puts me on the yeast medication Difflucan. This, however, raises my blood pressure.
I also have had a problem with my catheter draining into a leg bag. It won’t drain well. My catheter drains well into a night bag when I’m lying down, sitting in a commode chair or sitting in my sports chair.
I had a cystoscopy in December. I didn’t have any stones. The urologist said to switch from a size 16 to a 20 inch catheter. I had an 18 size catheter put in the third week of December. It still didn’t help my leg bag drain any better.
I went to a second urologist during the first week of January. All he suggested was to use a size 20 catheter. I hyperreflexed when a size 20 was attempted to be put it.
When I take Diflucan, I get good drainage into the leg bag when I’m sitting. The pill, however, gives me a headache. It also gives me other side effects.
A: This question is really regarding two separate issues. The first is about chronic vaginal burning. This type of burning may or may not be related to vaginal pathology. Vaginal pain and frequent discharge may occur in women with mobility limitations who are seated the majority of the day in their wheelchairs. The frequent antibiotics used for urinary tract infections and the moist perineal environment often affect the normal genitourinary microorganism concentrations. Vaginosis (a syndrome in which certain types of bacteria overgrow the normal bacteria and cause discharge and pain) and vaginitis (infections and inflammation from yeast, protozoans or other bacteria) must be accurately diagnosed to ensure proper treatment. Unfortunately these may recur frequently.
Often individuals with spinal cord injury have burning pain in the sacral or perineal regions related to the actual damage to the spinal cord neurons. Treatment is difficult with often disappointing results. Gabapentin, tricyclic antidepressants, antiseizure medications, muscle relaxers, clonazepam, spinal cord stimulators, and epidural and sympathetic blocks are only a few interventions that have been tried with varying degrees of success. Many times a combination of these can be tailored to individuals with minimal to moderate alleviation.
The problem whereby the catheter does not drain is another issue. To rule out any pelvic or genitourinary pathology, it is often appropriate to pursue studies such as urodynamics, an intravenous pyelogram, or a CT scan of abdomen or pelvis. Once any new pathology is ruled out, changing the catheter type or material may be helpful. Also, periodic daily rinses with normal saline or commercially prepared bladder irrigation solutions may alleviate the problem. Increasing the catheter size should be avoided as it cannot only exacerbate dysreflexia, but may also promote a patulous (expanded) urethra. If the problem of poor drainage is worse with particular positioning, it is possible that anatomical barriers such as pressure from collapse of pelvic supporting structures, or slippage of the uterus may be responsible. An increase in pelvic muscle tone and spasticity may also contribute.
Assessment of neurogenic urinary and genital problems must always be a dynamic process in women with spinal cord injury. Procedures such as urinary diversion or placement of a suprapubic may be indicated even many years after one type of bladder management has been satisfactory up to that point.
— Amie B. Jackson, M.D.
Orgasm – For Everyone?
Q: Someone in a chat room told me about orgasm for women with complete SCIs – something involving the vagus nerve. Is this for real, and how does it work? Does it work for everyone or are there other factors? Also, some stimulation I’ve tried led to dysreflexia. How can I avoid this?
A: Orgasm does occur in women with spinal cord injuries. In fact, most women with spinal cord injuries, including those with complete injuries, appear to have the neurologic capability to achieve orgasm. Only those women with low level, complete paraplegia who do not have any sensory, motor or reflex function in their lower sacral nerve roots seem to be neurologically unable to achieve orgasm.
The neurologic pathway that allows orgasm in women with SCIs is still uncertain; however, based upon the research described below, it is my feelings that orgasm is a reflex response of the autonomic nervous system, similar to when your bladder or bowels move reflexively. It may also be possible that the sensations associated with orgasm occur solely via the autonomic nervous system and do not require a connection with the brain. I do not believe the vagus nerve has anything to do with it.
In a study published in the Annals of Neurology in January 2001, we had 69 women with SCIs of all levels and degrees of injury try to stimulate themselves to orgasm. They could do whatever they wanted, were provided with a vibrator and an erotic video and had up to 75 minutes to achieve orgasm. Approximately half of the women were able to achieve orgasm; however, it took women with SCIs about a half hour to achieve as compared to 15 minutes for the nondisabled women. All of the women with SCIs stimulated their genitals to achieve orgasm and chose to use the vibrator.
Interestingly, we asked the women to describe how their orgasms felt. I then tested my colleagues to see if they could tell which descriptions were from the women with SCIs and which were from the nondisabled women. They were unable to tell the difference. In addition, when we looked at the heart rates, blood pressure and breathing responses of the SCI and nondisabled women, they were similar.
So if you would like to achieve orgasm but have not yet been able to, my advice is to try to masturbate. Be patient. Even though you may not feel on the surface that you are touching yourself, internal sensations may still occur. I wouldn’t expect anything to happen the first time or even the second because you have to feel comfortable with what you are doing and learn to do what works. Also, remember if it took you 10 minutes to have an orgasm when you were nondisabled, it will probably take 20 or more minutes now. Just start exploring your body and try to enjoy. Then when you are ready, bring in your partner (make sure you are comfortable talking to your partner about sex and trying to have an orgasm, etc.), a video, or whatever turns you on and continue to explore things. Eventually, you should find yourself having orgasms again.
Having said this, it’s possible you won’t achieve orgasm. There are many reasons for the inability to achieve orgasm, above and beyond spinal cord injury- medications that impair your function – medications that impair your function, depression and even an inability to relax. Partner issues are also a common problem, and it’s important to have your partner work with you, know you want to have orgasms and what type of stimulation you like. One of the most common reasons for women not to achieve orgasm is thinking too much about trying to have an orgasm, about other things going on in your life. One of the big things to try and prevent is something called “spectatoring,” where instead of just enjoying your sexual activity you spend the whole time thinking about what you’re doing, how you look or whether you will have a bladder accident. Spectatoring often prevents women from having fun during sex.
With regard to dysreflexia with sexual activity, that has been reported to occur. In all the women we studied, however, it never happened, so it shouldn’t be expected. If you have a problem associated with dysreflexia and sexual stimulation, it is probably that the stimulation is so great it may be damaging your skin and would be painful if you were not paralyzed. I suggest stopping the event immediately and the next time making sure you and/or your partner are gentler with the stimulation. Also you may have a bladder infection or another problem contributing to causing your dysreflexia.
To sum up: Try, be optimistic and see what happens.
— Marca L. Sipski-Alexander, M.D.
Q: I am at my wit’s end! As a T11-12 incomplete para, I generally rely on intermittent catheterization for urination. Because I have some sensation, I rely on that instead of the clock to tell me when I need to go. Most health care professionals raise their eyebrows when they hear how often I go – four to five times during the day, four to five time during the night is an average! This system has been working for me for the five years (as of today!) that I have been disabled, and I have remained for the most part infection-free. The problem is that I go through periods of almost total incontinence. I will need to go once an hour or more, and still sometimes get to the bathroom all wet. Last night I woke eight times to do catheterization and still woke to soaking wet sheets at 4:30. I do not want to rely on diapers since this is only an occasional problem and I have had all kinds of skin problems using adult diapers. What can I do short of tearing my hair out?
A: You need a thorough urologic evaluation including urinalysis (which I understand has been negative in the past), cystoscopy, and videourodynamics. I would also be interested in what medications you are taking if any, how much you drink a day, your fluid intake in relation to your incontinent episodes, and what you are drinking (caffeine products can cause urine frequency). The incontinence in your situation is probably caused by one of several mechanisms. Your leakage is likely due to fluid indiscretion, neurogenic overactive bladder, poor bladder compliance (stretchability), or urethral “incompetence.” The tests outlined above will assist your urologist in figuring out your particular cause for incontinence and to design a treatment program for you. As an example we often see that spinal cord injured patients collect fluid in their lower extremities during the day when up in their wheelchairs because of delayed venous return of fluid to the heart. These patients usually will note increased leg swelling or edema. At night when they are recumbent, the fluid returns to the heart and on to the kidneys which excrete the excess fluid. Wearing TED hose through the day can decrease this problem.
— Carol J. Bennett, M.D.
Aging and the Suprapubic
Q: I am a 42-year-old female with a C6-7 spinal cord injury. I was injured in June 1969 and had suprapubic surgery in September 1969. This Suprapubic has allowed me to lead a fairly worry-free life when it comes to bladder problems. Over the last couple of years, however, bladder spasms have been causing me to leak through the urethra although I am also urinating through the Suprapubic catheter. I used to be able to go for five weeks without changing my catheter. Now, I’m lucky if I go two weeks. I use a silastic catheter. I have been taking Ditropan for 15 years or more. My new urologist switched me to Ditropan XL in November 2000. This did not really improve my situation. I have been having cystoscopies regularly since 1969. I have had biopsies to check for bladder cancer and they have been negative. Last week, my urologist switched me to Detrol. It is too early for conclusions but the bladder spasms continue to occur.
I have a full-time job and have had to endure many hours of sitting in wetness, which is not pleasant nor healthy. This leads to a number of questions (below).
Mary E. Munroe
A: Your experience with your Suprapubic catheter is unfortunately not at all unique. While no one can deny that s/p tubes are convenient, they are fraught with complications the longer they are used as a method of bladder drainage. This is particularly true in the high pressure, hyperreflexic bladder which, given your level of injury, you probably have. This is because the catheter is a constant source of irritation and colonization if not outright bladder infection. This in turn causes bladder wall thickening, and diverticula which leads to deceased compliance (stretch), increased hyperreflexia, and the cycle continues. Anticholinergics can initially ameliorate this effect but eventually are of little consequence. Detrol tends to be even less effective than oxybutinin (Ditropan) for this problem. I’ll answer your questions one at a time.
Q: Have there been any studies done on long-term suprapubics, especially on women?
A: Yes. Here’s one: Bennett, C.J., Young, M.N., Adkins, R.H., Diaz, F.: “Comparison of bladder management complication outcomes in female spinal cord injured patients,” Journal of Urology, 153: 1458-1460, 1995.
Q: Have there been any studies done on long-term use of Ditropan?
A: Yes. The same study – Bennett, et. Al. – looks at the use of oxybutinin as part of the evaluation of this group of women.
Q: My urologist has mentioned the possibility of surgically enlarging the bladder by using intestines. Is this a viable solution?
A: Yes, this is perhaps the best long-term option. The goal is to create a large capacity, low pressure reservoir. Optimally this would either be created with a stoma for catheterization or by incontinent draining into a bag from an abdominal stoma. In either case one of the goals of surgery should be to leave you free of the indwelling catheter. You will require videourodynamic study, renal ultrasound, cystoscopy, urinalysis, and creatinine determination prior to surgical consideration. These types of procedures are in a sense designed for each patient with consideration given to cathing ability, the need for use of orthotics to successfully catheterize, etc. the competency of the bladder neck needs to be assessed as well. Patient motivation and lifestyle also have to be taken into consideration. [Editor: For more on this topic, see Bladder Matters, December 2008.]
Q: Is being a woman in her early 40s, possibly pre-menopausal, a possible cause for my bladder spasms?
A: There is no evidence that menopausal status is the cause of significant bladder dysfunction. Rather the long-term indwelling catheter appears to be the culprit.
Q: This is a long letter, but there are a lot of us old quads out there who are experiencing lots of changes in our lives as we grow older. What other options do I have?
A: The options are padding or intermittent catheterization with anticholinergic treatment. The latter is not likely to be effective without augmentation if the bladder is significantly damaged from long-term catheter usage. Another solution might be an implant that uses functional electrical stimulation to evacuate the bladder.
— Carol J. Bennett, M.D.
Q: I had a baby in December and ever since then I’ve had a weird kind of pain or tingling feeling all up and down my right leg. I know it must be a mental thing, but even when I try to get it out of my mind, it still hurts or feels weird. I’m a T10-12 paraplegic so I know I shouldn’t be feelings anything, but I do. …
Someone who had their leg amputated die to diabetes and an infection said she had it too after they had amputated her leg. Is mine phantom pain?
A: Many physiological changes occur during and following pregnancy and delivery. Unusual sensations often are common for women with and without spinal cord injury and can be muscular, endocrine or neurological in origin. In women with spinal cord injury, pain may be referred from areas above the level of injury. It may also result from peripheral nerve or sacral nerve irritation from pelvic anatomical changes as a result of the pressures from growing baby or during delivery. Spasticity is certainly affected during pregnancy and labor and especially in the postpartum woman who is breast-feeding. Anecdotal case histories of postpartum syringomyelia – when fluid-filled cavities develop in the spinal cord – have been encountered in our reproductive health clinic. There is no causal linkage, however, between pregnancy and development of syringomyelia.
Complications such as pelvic or femur fractures can occur because of disuse osteoporosis. Another risk is intramuscular swelling when a blood vessel breaks, which is a particular problem for women with paralysis because of the lack of sensory feedback in the mechanisms that preserve the structural integrity of the blood vessels. These, of course, can lead to pain syndromes. Phantom pains may occur as well. Once all diagnoses are examined, then appropriate interventions may be undertaken. Pain medications or treatment modalities may be initiated provided caution is taken if the mother is breast-feeding. Many times the pain syndromes that occur after pregnancy, labor and delivery are self-limiting.
—Amie B. Jackson, M.D.