Tuesday, January 27, 2009

Post Polio Syndrome

Over the last several months, I have read and heard about many PPSers having difficulty with various urogenital problems. Such problems as urinary frequency and urgency, stress incontinence, recurrent urinary tract infections (especially in females), sexual impotency, and failure to achieve orgasm are more common. Many PPSers are reporting these difficulties as beginning some time after they were diagnosed with PPS.

Of course these problems can result from other causes. In males, urogenital problems might be caused by prostatic hypertrophy, medication side effects, psychological factors, and other organic causes. In females, these problems might be caused by weakened bladder wall muscles resulting from childbirth, hormone irregularities, medication side effects, psychological problems, and other organic causes.

Nevertheless, there seems to be more PPSers with urogenital problems than would be found in a similar age group of non PPSers.

There is little in the post polio medical literature about urogenital problems, but I believe more medical articles and research will be forthcoming. There are three articles worth citing. One article appeared in the Journal of the Wound, Ostomy, and Continence Nurses Society, Vol. 23, Number 4, pp. 218-223, July, 1996 issue. This study was a survey conducted by Jonathan S. Vordermark, MD and his associates at the Texas Tech University Health Sciences Center. This study consisted of a survey of 242 female and 88 male post polio patients. The table below reveals the results of new or late onset neurologic symptoms.

Female (242) Male (88)
Fatigue 93.4% 72.7%
Reduced endurance 88.4% 75.0%
Muscle wasting 53.7% 47.7%
Pain 82.2% 48.9%
Involvement of muscles
Previously affected 78.5% 60.2%
Previously unaffected 48.3% 30.7%
Nature of symptoms
Stable 45.5% 47.7%
Progressive 38.0% 28.8%
Debilitating 8.3% 3.4%

The next table reveals significant urogenital problems for PPSers compared to non PPSers.

PPS Non PPS
Female (211) Male (65) Female (13) Male (17)
No. % No. % No. % No. %
Change in bladder function 110 52.1 24 36.9 4 30.8 1 5.9
Change in sexual function 64 30.3 21 32.3 0 0 2 11.8
Frequency (8 or > voids/day) 79 37.4 17 26.2 4 30.8 3 17.7
Nocturia (2 or > voids/night) 73 34.6 15 23.1 2 15.4 2 11.8
Hesitancy 118 55.9 49 75.4 4 30.8 8 47.1
Urgency 134 63.5 31 47.7 6 46.2 5 29.4
Intermittency 137 64.9 43 66.2 6 46.2 7 41.2
Postvoid dribbling 95 45.0 40 61.5 4 30.8 4 23.5
Decrease force of stream 33 15.6 21 32.3 1 7.7 2 11.8

Admittedly a control group of 13 women and 17 males is small, but nevertheless, in every category the PPS patients had a higher percentage of reported urogenital problems than the non PPS patients, particularly in the area of changes in bladder and sexual function, nocturia, urgency, and postvoid dribbling.

Erectile dysfunction was reported as severe (no erections) in 20 of the men (24.1%). Nine of these men were 55 or younger. 12 men (14.5%) reported poor quality erections, and 50 men (60%) reported occasional erectile dysfunction. The women reported a 30.3 prevalence of change in sexual function. Sexual changes may possibly be due to weakness of the pelvic and lower abdominal muscles, fatigue, back or lower extremity pain, and generalized debility. Obviously, some of these same factors may contribute to sexual dysfunction in males.

Genuine stress incontinence (example, urine leakage with sneezing, coughing, laughing) was seen in 36.3% of the survey population. Sixteen of the PPS women with urinary incontinence underwent surgical repair for urinary incontinence and experienced a 60.5% success rate.

There was another article published by the Dept. of Neurology at West Virginia University in Muscle Nerve, July, 1996, pp. 811-818. This article indicated that some "old polios" experience neurogenic muscle hypertrophy which is mostly pseudohypertrophy. This might be the result of overworked muscles and these muscles are weakening from overwork. Thus, the muscles of the bladder and external sphincter may be weakening as other muscles are weakening.

The third reference article is from the Kessler Institute for Rehabilitation in New Jersey. This article is written by Dr. Richard Bruno who is one of the more active researchers in investigating the problem of fatigue in PPS. His article is entitled "Sex and Polio Survivors." He states that most PPSers seldom talk about sex, possibly because most grew up in the fifties when sex was not openly discussed. During this same time, discussions regarding sex among the disabled was even more inhibited. Dr. Bruno states: "It amazes me still how many survivors tell me that they have never, ever discussed the fact they had polio with their spouse, let alone the experience of having had polio - God forbid - their feelings about it."

If we denied and hid our disability as much as possible, did we deny the awareness of our sexual feelings as well. I think not. Afterall, polio left us with our sensory nervous system intact and the ability to experience sexual arousal and orgasm. Also our reproductive organs were unimpaired. According to Bruno, 77% of polios married and a large percentage had children. I will not discuss the implications of changes in body image, attractiveness, or handsomeness due to the damage of polio. That will be the topic of another article. I am concerned about the apparent sexual dysfunction brought on by PPS. Sexual stimulation and sexual intercourse involves the expenditure of energy and we are lacking in reserve energy. Thus the experience of fatigue may dampen the desire for sexual pleasure and impair performance. If one has a spouse or sexual partner, communication with that spouse is essential in attempting to improve your sexual experience while dealing with PPS. Otherwise the old rules of society may come back to haunt you because of PPS. Bruno quotes these old rules as:

  1. If you are disabled, you are not attractive.
  2. If you are not attractive, you can't be sexual.
  3. If you can't be sexual, you shouldn't have sexual feelings.
  4. Wear flannel pajamas and sleep on the couch.

If your partner is able bodied, I would suggest encouraging your partner (whether male or female) to take a more active role in the sexual act. The less muscle exertion expended by the PPSer will probably allow for greater pleasure and a longer sustaining of arousal. Many female PPSers are menopausal or post menopausal. Replacement hormones may help deal with some of the emotional lability of menopause and post menopause as well as be medically helpful. In some cases, a low dose of testosterone may help some women increase their libido. A consultation with a gynecologist or endocrinologist would be recommended. Men with erectile function dysfunction should consider a urological or medical evaluation. Another aid to sexual success is the use of a personal sexual lubricant such as Astroglide (I do not own Astroglide stock).

Remember also that a large part of sexual fulfillment is in the mind. If your mind can still be stimulated or aroused, then there is hope for life in the old body despite its apparent dormancy.

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