How does VHL affect sexual feelings
or behavior in a relationship?

Notes from VHLFA eGroups Chat

-- Dr. Ron DeMayo, a licensed psychologist from Florida who is also a certified sex therapist, and Dr. Gary Wood, a clinical psychologist from Florida who has VHL, met with a group of  chatters in the VHLFA eGroups chat room Sunday, January 9, 2000.

Dr. Wood: Feelings about yourself and your body, particularly sexual feelings, are important to all people. These feelings, and in particular sexual interaction with intimate partners, can be especially challenging for patients with chronic disease. VHL patients are not unlike other people with chronic illness, and may have normal feelings about upset about sexual feelings and behavior. In some instances sexual dysfunction may develop, requiring professional intervention.

Dr. DeMayo: Sex therapists like to say that human sexuality is a sexual interaction, a behavioral interaction, and an emotional and interpersonal interaction. Some people even consider sexuality to be a spiritual interaction. Anything that affects us in any of these realms will influence sexual function. Chronic illness can affect each of these realms through changes in our body image, interaction with our spouse or life partner, feelings of despair or depression, and for some people chronic illness can have a spiritual aspect to it.

Chatter: But can pain become some dominant that it interferes with this emotional interaction, so that no sexual feelings can come?

Dr. DeMayo: Yes, that’s very common in people with chronic illness. Especially chronic pain can interfere with sexual function. Pain can directly interfere with the neurological pathways involved in sexuality and more importantly chronic pain can be extremely fatiguing and distressing, which interferes with human sexual desire. In fact loss of sexual desire is one of the most common sexual complaints of people with chronic illness or chronic pain.

Dr. Wood: In some cases people may actually feel more pain as a result of sex, making you feel like you are being punished for what is usually pleasurable. That can result in more conflict in someone, and then they become upset about being upset.

Dr. DeMayo: That’s a good point. Sexual problems are often a secondary by-product of chronic illness, not a direct result.

Dr. Wood: There are not so many direct problems in VHL, but many secondary assaults. Very few of the tumors cause any direct sexual dysfunction, but pain and worry have an impact on sexual response. When there is a direct dysfunction, we might be able to help the person with the direct problem. But when it’s secondary or psychological, it’s more vague and requires a diagnostic work-up, a conversation with a licensed professional psychologist to try to identify the source of the problem. It may not be noticed by the primary care physician.

Dr. DeMayo: Probably won’t be. I guess an example is with tumors in the lower spinal cord, there might be some dysfunction. If there is chronic pain, that in turn might present problems.

Chatter: How does one make the pain go away so that sexual desire can come? This is purely mental, I suppose.

Dr. Wood: Perhaps you can describe your situation. Pain is not necessarily in your head, it can be very physical.

Dr. DeMayo: You might want to ask your gynecologist for a referral. They will frequently know someone who specializes in sex therapy.

Dr. De Mayo: Certainly pain related directly to an illness can cause a condition called vaginismus. Vaginismus is a condition where the muscles of the vagina have involuntary contractions during intercourse which can make intercourse painful or even physically impossible for the sufferer.

Dr. DeMayo: Gary, so much of male sexual response is visually mediated, I wonder how your blindness affects your sexuality.

Dr. Wood: I lost my sight at 17, and I am now 53. Since I have been blind I have been very sexually active and there is no interference with sexual function. However, when you are totally blind you depend almost totally on imagery. I would say that 75-80% of the time it’s touching. I’m a very sensual person with a lot of energy, and it has been very challenging to manage my overall sexual desires and feelings within the context of my overall life and marriage. I’ve been married twice, and in both marriages one element of my marital problem was a loss of some sexual activity on my part. I have no doubt that it was in part because of the loss of visual stimulus.

Dr. DeMayo: If you were my client I would suggest that you read or re-read some of the classics in sexual literature, which helps one to bypass the visual.

Dr. Wood: I love voices, live voices, literature that I listen to, movies. Nothing has happened to my imagery, which is a separate part of the brain. But it’s hard for me to image detail, colors. If I’m with a female partner and she tells me what color she’s wearing, I may not conjure up the right image. But you can have normal feelings and desires when you’re blind, you just have to work at it.

Dr. DeMayo: It sounds like your blindness has forced you to make some of the adaptations we all have to make as we age – that I have made too as I age, and as my wife ages. My response was originally based on her looks, and now it’s based on deeper love and sharing – and thank God for that, because I’ve aged too! Thankfully we’ve gotten over that.

Chatter: In my situation, back pain makes every position painful, making it impossible for me to enjoy sex at all.

Dr. DeMayo: Yes, well I have worked with a number of patients specifically whose back pain has interfered with their sexual response. What seems to work in these situations is changing some of our expectations about sexuality. Whereas before sex may have been something that happened spontaneously, perhaps sex now needs to be planned for and scheduled. Look for those days of the week or times of the day when our energy levels are high, when we’re feeling good about ourselves, when our pain medication is at its maximum effectiveness. It is also important to slow down the pacing of our sexuality. Spend time in preparation with a warm bath or a massage and give ourselves time to enjoy ourselves. And perhaps we need to shift our focus from multiple orgasmic sexual performance to simply enjoying a sexual experience with our partner, which may or may not include orgasm. Obviously it’s very important for the partner to be knowledgeable about the person’s illness and to be included in their treatment. This includes knowledge about how the illness affects the person’s sexuality. Often the partner must also adjust their perceptions and expectations about sexuality. They perhaps need to lower their expectations about spontaneity and accept the changes in their partner. This often entails a grieving about lost functioning.

Chatter: In my situation there is no clear evidence for the physical pain and it can’t be explained. It is probably from previous brain and spinal surgeries, but the doctors can’t explain it.

Dr. Wood: It’s often difficult to get doctors, partners, and others to understand you’re in pain. That doesn’t mean it’s not real.

Dr. DeMayo: Pain is a subjective experience, and it can’t be fully documented. Perhaps we’re looking at a communications issue, more than a sexual issue. Have you let your partner know how you’re doing? How does your partner respond to hearing about your pain? I worked with a woman whose husband did not accept her severe back pain, and complained frequently about her lack of sexual response. In addition, he had very little patience for her complaints of pain. What worked for this woman was to develop a more supportive social network of friends and family with whom she could discuss her pain, and then try to prioritize sexual experiences with her husband once or twice a week. On the days she thought she might enjoy sex she would plan for that – time the taking of her medication, save up her energy, and focus on sexual imagery during the day in anticipation of her husband coming home.

Chatter: My husband knows and is very considerate. But the loss, the grieving you talked about – I can read it in his eyes, and then there is more pain – this time emotional pain – for me.

Dr. DeMayo: Yes, the grieving process can be very difficult. Part of the relationship is making your partner happy.

Dr. Wood: There is a focus in psychotherapy called grief therapy. In the case of sexual situations, it’s important to have a sex therapist who understands grief.

Dr. DeMayo: It’s the old adage about whether the glass is half empty or half full. If you focus on what is lost, you will prolong the grief process. In my experience, it is better to focus on the sexual enjoyment you both can still share and to use this crisis in your marriage as a time to re-explore your sexuality and perhaps grow into new areas of sexual expression.

Dr. Wood: Ron, what about relaxation exercises?

Dr. DeMayo: Anything that can relax the spasm in your back pain would be an aid to sexuality.

Dr. Wood: This could be anything, ranging from tensing-and-releasing a series of muscle groups, to hotpacks, massage – whatever works. So much of relaxation is a result of one’s thinking pattern. Often what aggravates pain, and may even cause pain, is the thinking style of the individual. For example, people who tend to think absolutistically – in black-and-white terms – may have more tension and pain. In contrast the person who has more flexibility in mind, greater tolerance of themselves and others, who look at the world more tolerantly, have more chance for relaxation. I think one of the unfortunate consequences of pain -- and complications around sexual and other matters -- is that if things don’t go well, the person may withdraw further. When, in fact, assertiveness – asserting one’s thoughts and feelings – is a better thing to do.

Dr. DeMayo: The risk is that this couple would become discouraged and stop trying to make this very difficult adjustment. You mentioned that any position is painful. I assume that you are referring to the typical positions for genital intercourse. I wonder if you have tried pleasuring each other in other ways – oral sex, mutual masturbation. Perhaps you can focus on making yourself comfortable in the bed and allow it to be your husband’s challenge to make himself comfortable and decide how he wants to pleasure himself. This means that you need to feel comfortable with that yourself.

Dr. Wood: Give yourself permission not to perform but to be a companion.

Chatter: It seems stupid, I know, but I can’t relax. I’ve tried so many different things. And now I think that VHL takes up so much of my mind that there isn’t room for anything else – and I’m not a black-and-white thinker!

Dr. Wood: Good! I’m glad you’re not a black-and-white thinker. Sometimes recurring thoughts of distress can have a similar effect on pain whether you’re a black-and-white thinker or not. Sometimes we use thought-stopping techniques to interrupt persistent unwanted thoughts.

Chatter: Concerning position, I’m not talking just about genital intercourse, but anything including oral sex and just caressing. Isn’t it possible to reach a mental state where pain has no meaning?

Dr. DeMayo: That’s an excellent question.

Dr. Wood: Some of the para-psychologists and religious leaders around the world, especially in Buddhism, argue that you can reach certain spiritual states.

Dr. DeMayo: I don’t know that it’s possible to completely ignore pain sensations. What I have found helpful is distracting ourselves from the pain stimuli. In this respect sexual response itself can be a great distractor. When you are alone, are you able to suspend thinking about the pain and focus on your own response? Rather than learning a technique to stop thinking about the pain, can you think about something else, and make that temporarily more important than the pain?

Chatter: I even tried Transcendental Meditation (T.M.) for that. I learned it with a general practitioner, and he told me I’m too nervous for a technique like that.

Another Chatter: I remember learning Lamaze breathing. Is that what you mean? It’s not about pretending the pain doesn’t exist. Rather it’s simply not focusing on it, but focusing on something else that you find pleasurable.

Dr. Wood: That’s a good example. That type of breathing is a physical act that takes concentration. Sometimes individuals that have a nervous system that is more rapid, someone who is prone to be nervous, may need more individualized attention. A licensed psychologist who specializes in sexual dysfunction and pain might offer you more strategies and techniques consistent with your values. Keeping in mind your tradition of faith and spirituality is always very important.

Dr. DeMayo: In your case, the sexual response would be like the mantra (focus phrase) you practices in TM. Mantras don’t completely clear our minds of other thoughts, but they give us a reference point to return to when we find ourselves distracted. One way we try to accomplish this in sex therapy is through a process we call "sensate focus". Sensate focus is a graduated series of sensual massages beginning with very light touch in non-sexual areas and then progressing to much more intimate sexual sensations. The goal of this process is to help us focus on our sensual response, not orgasm. It frees us of our "performance anxiety" which is the fear that we are not functioning well sexually. This seems to be part of the problem.

Dr. Wood: I would challenge you to view your disease as an aspect of your personality and body and begin to think of yourself as being in charge of your disease, even though it’s difficult. Any time one views themselves as dominated by something they cannot control, such as a disease, this complicate recovery and successful adaptation. And in this vein, self acceptance, whatever form that takes, is important -–spiritual, psychological, social.

Chatter: I have spoken with another woman with VHL who has the same issues in her relationship, so it would seem to be connected with VHL. I’m okay about having VHL. The sexual difficulties are just a side effect which can cause marital problems.

Dr. DeMayo: That’s a good way to look at it.

Dr. Wood: Congratulations. I’m glad that the knowledge of your disease does not distress you.

Dr. DeMayo: In my experience, the person with the chronic pain makes the successful adjustment and adaptation sometimes months or years before their spouse is able to. Your spouse cannot accept these changes until you do.

Dr. Wood: Consultation with the spouse around the disease becomes even more critical. Whenever there are intimate partners, and differences exist in their levels of awareness and understanding, it often takes a third party to facilitate the communication.

Chatter: VHL doesn’t distress me. I think I handle it very well. But I have my doubts about my husband. He’s very considerate, he’s a wonderful man. But when I read the pain in his eyes, and realize I am not fulfilling his needs, that’s difficult.

Dr. DeMayo: It’s very difficult to feel that we are letting our spouses down in some way. We all want to be Mr. or Ms. Right.

Dr. Wood: Some things we can’t do anything about – loss, grief. Thomas Jefferson once wrote a letter to his family saying that while he understood many things in this world, he never understood grief. We don’t have any explanations for it. Part of living with a disease is acceptance of the loss in our spouse’s eyes.

Dr. DeMayo: …and shifting the focus away from what you are no longer able to give him, shifting it to what you are still able to give him, and making a commitment to continuing to make any necessary changes.

Chatter: Didn’t you say too that this is a normal part of the aging process for everyone?

Dr. DeMayo: Yes, it’s accelerated for people with chronic illness, but it’s the same process.

Chatter: Many times there are issues we need to attend to in ourselves before we can enjoy others fully.

Moderator: We would like to thank Dr. Ron DeMayo and Dr. Gary Wood for their time today and for a very interesting session. I gained many valuable insights, and I hope you did too. Thank you very much.