Sexual health in scleroderma

For a man to achieve an erection satisfactorily for penetration, three important systems have to be working properly. These are the blood supply, and the nervous and psychological systems.

If one of these systems is damaged, it is difficult for a man to attain and maintain an erection:

Blood flow – for an erection to take place, special erectile tissues have to be filled with blood and this requires a good blood supply. Systemic sclerosis can decrease blood flow to the erectile tissues, meaning they do not fill with blood properly.

Tissue changes – erectile tissue relaxation enables the penis to fill with blood during erection. However, the fibrosis (thickening) process that takes place in systemic sclerosis reduces the ability of the erectile tissue to relax, meaning erections do not occur.

Also, signals from the brain to the penis can be interrupted by nerve damage, again meaning erections fail to occur.

Depression and anxiety – being diagnosed with systemic sclerosis can cause great anxiety and can result in some people becoming depressed. This can lead to a lack of stimulation in the area of the brain that causes the arousal required for erection to take place.

Medical conditions such as diabetes, kidney disorders, psychiatric problems, neurological disorders, trauma, and surgery to the pelvis can also cause erectile problems.

If you have a sexual health issue, don’t hesitate to seek help either from your GP or urologist. The problem is common and there are things that can be done to combat it.

If possible, try to get support from your partner in seeking help, as this is an issue that concerns both of you.

You will need to consult with a specialist who will talk through your medical history and give you a physical examination, so that they can come up with an individualised treatment plan for you. They may need to run some tests, including taking blood samples for hormone deficiencies and blood sugar levels.

They may suggest psychosexual treatment, to help you better understand the causes of the problem. This treatment may involve cognitive behavioural therapy, or the ‘sensate focus approach’, which encourages couples to undertake a series of exercises at home to encourage intimacy. It’s worth noting that these treatments can be difficult to access on the NHS.

Your specialist may also suggest physical treatments:

• Oral tablets such as sildenafil (Viagra) enhance the natural process of erection. Viagra can’t be taken by men with certain health conditions, so always speak to a doctor before taking it.
• Vacuum devices can be placed over the penis and suction applied, resulting in an erection. Then a constricting ring is placed around the base of the penis to stop blood from flowing back. This takes a bit of planning, so sex can’t be spontaneous.
• Injections – patients can induce an erection by injecting themselves at the base of the erectile tissue. This is a really successful technique, but some men are reluctant to try it because penis pain can be a side effect of prostaglandins. Also this can result in long-lasting erections that may need medical intervention.
• MUSE (Medicated Urethral System for Erection) involves inserting a drug pellet into the urethra using a plastic applicator. Men who use this method are advised to pass urine just before inserting the pellet as this lubricates the urethra and eases insertion. The disadvantages of MUSE are that it requires manual dexterity, takes a while to start working, and the drug itself (rather than the insertion) sometimes causes pain.
• Implants or penile prosthesis are two rods inserted inside the shaft of the penis, causing the penis to be permanently erect, or causing an erection as required, depending on which rod is chosen. Implants require an operation for the rods to be inserted, so this is usually done as a last resort for those who have not had success with other treatments. The disadvantage of having this is that once it fails and has been removed, no other treatments will work. It is a very expensive procedure and there can be mechanical problems.

All these treatments should only be tried after speaking to a specialist. Changes in lifestyle, such as cutting down on alcohol and stopping smoking, can also go a long way in solving some of the problems.

‘Sjögrens syndrome’ or ‘sicca syndrome’ often accompanies systemic sclerosis. This causes dryness of the mucous membranes, typically leading to dry eyes and a dry mouth. The vagina can also be affected, and with less lubrication during arousal, sex can be uncomfortable, or even painful.

This is the usual reason for vaginal dryness in women with scleroderma.

However, it is important to exclude other causes such as the menopause or local infection as different treatments may be helpful for these. Occasionally the problem can be caused by other conditions such as lichen sclerosis et atrophicus that resembles morphoea – a type of localised scleroderma. Your GP or local well woman clinic will be able to help arrange the right tests and treatments for you.

• Vaginal lubricants, such as KY jelly, Aquagel, Replens or Senselle, are completely harmless, and can be bought without prescription at any chemist.
• Try to relax. If you are expecting intercourse to be painful, your vaginal muscles will instinctively tense up and intercourse will then be even more difficult. Find something relaxing that works for you.
• Local anaesthetic jelly can help. Apply it to the vaginal entrance about ten minutes before intercourse so that you can feel confident that it will not be painful. 2% lignocaine antiseptic gel comes in single-use sachets (on prescription) and is safe to use.
• Smooth plastic dilators can open up the vaginal entrance and help you regain your confidence for intercourse. They come in a series of sizes, to enable you to improve things gradually. These are called “Amielle Trainers” .
• Operations on the vaginal entrance are occasionally appropriate, but this is not usually helpful for women with systemic sclerosis, as the scar tissue from the operation wound would make things even more uncomfortable. If you would like advice on this, ask to be referred to a gynaecologist.

If simple remedies have not proved helpful, you may need more help. Larger hospital gynaecology departments will have a “Vulval Clinic” where they can investigate the problem in more detail and consider the use of steroid ointments. You can ask your doctor for a referral to this.

Remember to be patient. If you have a problem that has been building up over a few years, it may need some time and care to correct it – but there are always ways of making things better.