Taina Vahtera
Physiotherapist, Masku Neurological Rehabilitation Centre, Finland

Summary

During pelvic floor therapy for bladder or bowel problems patients with MS occasionally disclose to their physiotherapists sensitive details of their personal sexual experiences. Physiotherapists have been trained to support the integrity of the patient´s body image. They have, however, not been trained to meet the needs of individuals who assume that their sexual problems or difficulties in their relationships with partners can be alleviated. In these matters, physiotherapists should not have to rely on their intuition alone. There is a real need for training in appropriate professional methods to discuss sensitive issues that arise in the patient's mind when the therapist unavoidably touches intimate areas of the patient's body.

Leena,37

"I have been so disappointed with myself for a couple of years now. As a woman, I mean. I don't understand what's wrong with me. Before, I always used to like to making love and I really enjoyed it. Nowadays, in these situations I feel like an outsider, because I don't feel anything at all! I certainly want to make love to my husband, but I don't know whether I'm lubricated or not. I never told him anything about it, because I thought that there is something terribly wrong with my body. I've been faking my orgasms. And afterwards I've been so ashamed about it. I don't think I'm normal, am I not a woman any longer? This is so depressing."

This is a quotation from Leena who is 37 years old. She did not have any general difficulties with body movement, but did have problems in her pelvic floor area. She suffered from constipation and stress incontinence. Her main problem, however, was markedly decreased sensation in the pelvic floor area. At the time of this interview, she was attending an adaptation training course at a Rehabilitation Center.

The kind of disclosure described above is very common. Contact sensations in the pelvic floor sometimes bring hidden and painful experiences and feelings to the surface. Most frequently, these have to do with the person´s sexuality, body image or relationship with her spouse or partner. Many MS patients suffer from diminished sensation in their sexual organs. Reduced libido and insufficient vaginal lubrication are often associated with the disease. These problems are inimical to sexuality and may cause further problems. Urinary and bowel symptoms make the patient feel embarrassed, and have a significant detrimental effect on the patient´s social life. The symptoms associated with sensory problems often interfere with the patient’s sexual life and confuse her sexual identity.

Anne,22

Sometimes the pelvic floor physiotherapist encounters very practical problems:

"I am very happy with my boyfriend. He has accepted my illness so well. But we have a major problem. You see, I have rather big problems with my spastic legs. I can relax them with stretching, but when we make love my legs get tight and tense, which makes intercourse difficult. It is difficult enough with my problems, but in addition, my boyfriend is hemiplegic on the right side. Would you please help us solve this problem?"

Anne has had MS for five years. She uses a walking frame and a wheelchair for longer trips away from home. The urinary problems include frequency, urgency, weakness of pelvic floor muscles, and difficulty in relaxing them.

The physiotherapist can use her basic professional knowledge to deal with such functional problems by suggesting suitable positions for foreplay and intercourse, but it is not easy for the patient to talk about private matters. Pelvic floor therapy sessions seem to be a natural setting for the patient to ask for help. If the physiotherapist herself feels relaxed and is open to discussing intimate problems, the patient does not feel ashamed to speak about her sexual problems. On the other hand, if the physiotherapist herself feels embarrassed, the patient is not likely to initiate any talk about these problems.

Lisa,60

Lisa has had MS for 20 years. She has several forms of pelvic floor dysfunctions: urgency, night-time and daytime frequency, incontinence, sensation of incomplete bladder emptying, need for assisted emptying of the bladder, sometimes faecal incontinence. Her genitals have dry mucous membranes. She is able to walk over a distance of few meters indoors using a walking frame, but most of the time she uses a wheelchair. However, the most difficult aspect of her life is her relationship with her spouse.

"Actually, I was not quite honest when I told you that my bladder problems are my greatest concern. As you mentioned, I have suffered from lack of lubrication for years. I think that's why I feel pain during ntercourse. Right? My husband has always been quite quick whenever we have sex. We have never talked much about love making during our relationship. I have not enjoyed sex, it has been like a duty to me. Talked? About that, with him? NO! Never! Well, maybe it was a little exciting and fun when we were young, but not any longer... Now, when it has started to be even painful, I feel like being raped every time. I'm so sad, I don't know what to do. Our relationship is not very good at all. I've been thinking about divorce, but I don't know… What do you think? I need his help so much every day, you see. Anyway, he helps me a lot every day. This is the first time I tell this to anyone. No, I don't want to discuss it with the psychologist, and you must not tell anybody about this."

In these unusual situations, a physiotherapist may feel helpless or incompetent to treat the patient adequately. A physiotherapist should have a sensitive but professional approach in these situations. There are many difficult questions waiting to be answered.

Subjects such as those described in the above cases are delicate to the patient. Often, the patient does not want to share or discuss these problems with anyone else, such as a psychologist. During pelvic floor therapy, the patient’s problems emerge in a very natural way, and it may be difficult to start the discussion again with a new person and in a new setting. This does not, however, mean that the physio-therapist should not try to recommend that the patient should contact a psychologist, who is better equipped to help patients with their grieving and adaptation processes.

During their professional training, physiotherapists are told how they can support the integrity of the patient and her body image in the changing situations caused by the disease. However, physiotherapists are neither professionally nor specially trained to help individuals cope with their sexual or marital problems. When manipulating a patient´s intimate parts or discussing sensitive matters, the therapist often has to rely on her intuition and personal know-ledge based on her own sexuality. There is not much educational or training foundation to rely on. Very often the only way to help a patient is to listen to and empathize with her.

The use of pelvic floor physiotherapy in the treatment of bladder and bowel problems is a difficult and very rewarding area of physiotherapy. The patient usually gives most positive and grateful feedback to her physiotherapist.

By explaining what is happening in the body, the physiotherapist provides the patient the tools to work on her problems. This work is demanding. Based on my own experiences, especially physiotherapists who are involved with pelvic floor treatments need specific education both on their own sexuality and on sexual problems in general. The therapist should also have specific and continuous support available for her/him to continue this work.

References

1. Vahtera T, Haaranen M, Viramo-Koskela AL, Ruutiainen J: Pelvic floor rehabilitation is effective in patients with multiple sclerosis. Clinical Rehabilitation 1997; 11: 211-219.


2. Foley FW, Sanders A: Sexuality, multiple sclerosis and women. MS Management 1997; 4:1-9.