Sexual Health and Living with Scleroderma| PatientsEngage

Submitted by Dr S. Patel on 22 August 2022

On World Scleroderma Day, Scleroderma India had organised an online conference. One session was a detailed discussion by Dr. Kaushik Bhojani, senior Rheumatologist, Mumbai on the effect of Scleroderma on the sexual health of Scleroderma patients and how they can address it to improve quality of life. This session is also applicable to persons living with Sjogren’s Syndrome and Myositis.

Scleroderma is primarily a disease of women although it can affect men and, in some cases, quite severely. So, when we talk about sexual dysfunction, we will talk about both sexes. This topic does not get addressed in a clinical consultation, maybe due to shyness by the patient and/or avoidance by the clinician. Sexual dysfunction is going to affect your quality of life in multiple ways. It is part of the illness and must be addressed.

Let’s start with women with scleroderma

Scleroderma causes tightness so just like one gets facial and skin tightness, one will experience tightness in their private parts as well. This tightness around the vagina and groin will hinder sexual exposure and prevent sexual activity. In addition, Scleroderma causes excessive dryness because the taut skin restricts the secretions of the sweat and oil glands. Lack of lubrication along with tightness turns into a terrible combination. Indulging in a sexual activity will then lead to pain, injury and discomfort. This will further cause fear and avulsion. The dryness can also cause the partner to get hurt. This will consequently have an affect on the relationship and psychological health.

Besides tightness, Scleroderma also causes contracture of the muscles and tendons resulting in stiffness and arthritis of knees, legs and feet. Another symptom to watch out for is Myositis (inflammation of the muscles) which is detected by the presence of an antibody called PMSCL (Polymyositis scleroderma). This presents as weak thigh & pelvic muscles, low energy, low lung function with breathlessness and fatigue. Majority of patients also suffer from secondary Sjogren’s Syndrome and have dryness of mouth and eyes. With parchment paper like feeling, how do you even kiss your partner? Patients have weak gums/teeth and acid reflux making a simple act of kissing very difficult. This causes the partner to be become overcautious and curb his desires in order to not hurt you. The female patient in turn thinks that the partner does not find her desirable or attractive anymore. All of this starts to trigger a negative thought process which may or may not be genuine. The male partner may become depressed either due to deep worry & concern or out of frustration.

How can the common symptoms be managed

Dryness: Use lubricants 30 to 45 minutes before the planned activity. You may lose the spontaneity because now you have to plan it, but this is a minor adjustment to be made. Use an anaesthetic-containing lubricant so you will not have pain and your partner will not get hurt. These lubricants are safe and often non-allergenic.

Reflux: Most patients are on some medication for GERD. If you are on just one morning dose, ask your doctor about an evening dose. You can take it an hour in advance.

Breathlessness: This purely depends on the patients’ lung function. It may help to be the passive partner and be loved rather than indulging in aggressive love-making. You can plan the sexual positions in advance, for example, man on top can cause chest & abdomen compression, so this can be avoided. It may also be useful to have a light stomach to steer clear of reflux and aspiration. All patients are advised to keep a gap of 3 to 3.5 hours between dinner and sleep time. Also have a dry meal in the evenings, avoid gravies/dals which are more likely to cause reflux.

Tooth caries: This occurs due to dry mouth. It can cause foul odor which can be addressed with sugar-free pastes. Artificial salivas are available too.

Tightness: Occupational therapy along with speech and Physiotherapy do help with mouth stretching exercises. This needs to be addressed before mouth becomes very tight and unable to open wide. This will cause access problems for Dentists and impact oral hygiene. Speech and occupational therapist use exercise like speaking with marbles in the mouth to help stretch the cheeks.

Exercises can also be done for vaginal stretching. Lichen sclerosus are areas of tightness around the vaginal wall and rectal area. This can be cut open in excessive cases. Sexual toys can be used for vaginal stretching too but make sure to use lots of lubrication and be patient as this is a slow process. If the clitoris becomes tight and dry, it can cause pain when stimulated. In such cases, you need to desensitise it, use anesthetic gels along with massage to make it softer. Forewarn your partner that foreplay might be painful.

Myositis: Remember that since the muscles are weak, thrust may not be as forceful and you may get aches/pains thereafter. Try positions on chairs ,stools or with lots of pillows to prevent muscle ache and tearing of the skin. Be careful because healing takes a long time. Communication with your husband/boyfriend is very important to make this all a smooth process.

Inter-personal relationships: Note that women need to feel desirable and need some TLC (tender loving care) for sexual functioning. Partners need to understand this emotional connection. Partners who are frustrated or critical can cause more depression for the patient. It may help to have both treating Rheumatologist and Psychologist on board for inter-personal conflict resolution. This will prevent further disastrous consequences like separation etc.

Men with scleroderma

As far as male scleroderma is concerned, there is lesser incidence compared to women but men can have more advanced disease. Men with scleroderma at some point, will end up with erectile dysfunction. This can cause as much frustration as for a female scleroderma patient. Men are less tolerant and usually want to address such issues earlier and faster. In men, the blood vessels become narrow in the penis lowering the blood flow and causing flaccidity. In addition, the penile muscles are tight and not elastic enough to sustain an erection.

Medications: One of the drugs used for pulmonary hypertension called Sildenafil or Viagra can also be used for scleroderma. Other agents available in this drug class are called Tadalafil and Avanafil. The way they work is by dilating the blood vessels in the penis just like they do to the lung blood vessels. They do so by stimulating the nitric oxide in the blood. These medications are effective in the early to moderate stage of erectile dysfunction. This again has to be a planned activity as some pills take an hour while others can take upto 4 hours to work.

Note: sildanefil does not improve sexual activity in women.

Other options are prostaglandins (available as cartridges or syringes) which the man can inject into the urethra. It is a gel-like substance, a tri-mix gel with a combination of a local anaesthetic to thwart pain. Although, it is a small pen-like device, if not injected right, it can hurt the urethra or urethral walls and cause bleeding. During sex, if it seeps into the woman, it can cause burning for her. So, it has to be timed correctly so that it is completely absorbed from the urethra before sex initiation. The tri-mix gel is injected into the base of the penis approximately 1-1.5 hours in advance.

Vacuum pumps and prosthetics are also available. The vacuum pump is a tube with an elastic band. The penis has to be inserted into the cylinder and negative pressure is applied such that the elastic band slides down to the base of the penis. This helps the veins to retain their blood to hold an erection. The success rate for a pump is 50-60%.

Men who are unresponsive to any of the above therapies, can opt for surgical procedure for penile implants with stimulators. It is a permanent erectile solution.