Scleroderma and your sex life

Sexual difficulties can manifest in women with scleroderma, but in particular those with Sjogren’s syndrome.

There aren’t many studies on women’s sexuality when disabilities or disease are present, which is a shame: just because you have a physical challenge doesn’t mean you don’t feel sexual desire or are asexual.

There is a lot of information about fertility, pregnancy and other aspects of the scleroderma-affected woman, but precious little on sexuality as a stand-alone subject. Here’s all we’ve got.

What is scleroderma?

For those of you not familiar, scleroderma is a connective tissue disease, with ‘sclero’ and ‘derma’ simply meaning ‘hard skin’, caused by too much collagen.

This usually affects the hands and face, which doesn’t do much for your self-confidence as your two most visible areas, but it can also affect your internal organs and tissues. It is an incurable autoimmune disease.

How does scleroderma affect the vagina?

It can affect your vagina in several ways. The first is a closing over of the vaginal entrance, and a tightening and thickening of the vaginal tissue. This can make it pretty hard to have sex without pain.

The other issue is vaginal dryness, particularly of concern if you have Sjogren’s syndrome, which attacks your exocrine glands (salivary, mucosal and others).

How does scleroderma affect sexuality?

There are many other issues that might affect your ability to be sexually active, including, but not limited to, joint, gut and mobility issues.

A research study conducted by Chris Saad et al in 1999 examines how many women with scleroderma have Sjogren’s syndrome, how many women with scleroderma experience vaginal dryness, how informed are women with scleroderma about the sexual effects of Sjogren’s syndrome, and the pertinent question of whether healthcare providers discuss the sexual repercussions of their condition with their patients.

Bhaduri et al (1995) studied the sexuality of 60 women with scleroderma and a control group of 23 women with rheumatoid arthritis and systemic lupus erythematosus. Since their diagnosis the women with scleroderma had significantly fewer orgasms than the women in the control group, and the orgasms were less intense, by a significant portion. This is a massive problem. The women with scleroderma were also significantly more likely to suffer from vaginal dryness, vaginal pain ‘of no fixed origin’ (dyspareunia) and vaginal fissures or ulcerations.

There are many aspects of scleroderma that affect your sexuality, including reflux if you lie back, urinary incontinence, bowel issues such as diarrhoea, and medication side effects.

The direct impact on your vagina itself may be skin tightening and thickening, musculoskeletal changes that make sex difficult or the vagina inaccessible, muscle weakness, changes in skin tissue appearance and texture, and of course changes in natural lubrication.

Masturbation is also difficult, along with certain types of contraceptives. Women with scleroderma are also much more likely than other women to go through early menopause, and develop breast, cervical or uterine cancers. There is also a greater chance of strange bleeding. Related kidney disease can impact libido and fertility.

So just when you thought your (sex) life was over…

None of these things means you can’t be sexual, but they mean you will have to work a little bit harder. It is very typical for any type of illness to really put a damper on your sex drive, but conversely, being well-adjusted with your condition and used to its effects means you can usually plan ahead.

Naturally you can get amongst it by yourself (and should, just to keep everything moving!), however having a caring partner who is willing to adjust to your needs is a wonderful thing that can boost your sexual juices.

How do I counteract the effects of scleroderma on my vagina?

This is the million dollar question, but it also depends heavily on how you would like to be using your vagina.

A good-quality lube is imperative if you want anything to go inside your vagina smoothly. This includes tampons, fingers, toys or penises. It could make the difference between pleasure and pain, so choose your lube with great care.

You may need to use a vaginal dilator also.  

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Jessica Lloyd - Vulvovaginal Specialist Naturopathic Practitioner, BHSc(N)

Jessica is a degree-qualified naturopath (BHSc) specialising in vulvovaginal health and disease, based in Melbourne, Australia.

Jessica is the owner and lead naturopath of My Vagina, and is a member of the:

  • International Society for the Study of Vulvovaginal Disease (ISSVD)
  • International Society for the Study of Women's Sexual Health (ISSWSH)
  • National Vulvodynia Association (NVA) Australia
  • New Zealand Vulvovaginal Society (ANZVS)
  • Australian Traditional Medicine Society (ATMS)