Sexuality and Scleroderma

Author: Janey Willis. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer.
Video Overview of Sexuality and Scleroderma
Erectile Dysfunction and Scleroderma
Female Sexual Dysfunction
Vaginal Dryness
Pregnancy and Scleroderma
Personal Stories
Sclero Forums Discussions

Overview of Sexuality and Scleroderma

Sexuality and Scleroderma Video
Video: Sexuality and Scleroderma

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Scleroderma can affect every aspect of sexuality, for both men and women. Men often experience erectile dysfunction (ED) as the first sign of systemic scleroderma. ED is due to fibrosis and impaired circulation. Women frequently develop vaginal dryness. Both men and women may experience decreased sex drive, joint and muscle pain, mouth dryness, diminished hand dexterity, fatigue, breathing difficulties, heart problems, sensitivity to cold, gastrointestinal disruptions, smaller mouth size, TMJ, and depression. (Also see Scleroderma Videos)

I Love You cake by Shelley EnszIt is very important to share these concerns with your doctor(s) and to find ways to compensate for the effect of illness on intimate relationships. Healthy partners often interpret decreased sexual desire or abilities as diminished love and affection. This is a great time to get back to the basics, like saying "I love you," playing romantic music, and writing notes of affection. See Related Books for ideas on how to promote discussions and keep the intimacy in your relationship.

Intimacy and Scleroderma

Chronic illness and sexuality. In a life restricted by illness, sex can be a powerful source of comfort, pleasure and intimacy, and an affirmation of gender when other gender roles have been stripped away. For patients with chronic illness and their partners, a satisfying sex life is one way of feeling normal when so much else about their lives has changed. The Medical Journal of Australia.

Erectile Dysfunction and Scleroderma

Men With Erectile Dysfunction Are Twice As Likely to Have Heart Disease, Study Says. Those with erectile dysfunction were twice as likely as men without the condition to have a heart attack, stroke, or die of a heart problem. Time Healthland, 06/11/2018.

Erectile Dysfunction (ED) in Systemic Sclerosis (SSc). ED is a major issue in SSc as it is observed in around 80 to 90 % of men with this connective tissue disease and it greatly impacts the quality of life and should be actively addressed as a common complication. PubMed, Curr Rheumatol Rep.

Nailfold capillary abnormalities in erectile dysfunction (ED) of systemic sclerosis (SSc). Neither the presence or absence of abnormal capillaroscopy findings nor the subdivision into early, active and late patterns is associated with coexistent ED in SSc. PubMed,Rheumatology. (Also see Nailfold Capillaroscopy for Scleroderma)

Penile involvement in Systemic Sclerosis: New Diagnostic and Therapeutic Aspects. Long-standing SSc is almost always associated with the presence of some degree of ED, because of micro and macrovascular disseminated damage through cavernosal penile arteries and capillaries and subsequent cavernosal fibrosis. International Journal of Rheumatology.

Female Sexual Dysfunction

The impact of primary Sjögren's syndrome (SS) on female sexual function. The genital disorders secondary to SS can strongly alter the quality of female life both physically and psychologically as they alter sexuality. PubMed, Minerva Ginecol, 2020 Feb;72(1):50-54. (Also see Symptoms and Complications of Sjögren's Syndrome)

High Burden of Sexual Dysfunction in Female Patients (FSD) with Rheumatoid Arthritis (RA): Results of a Cross–sectional Study. FSD apparently is highly prevalent in female patients with RA, affects all subdomains of sexual function, and is most likely underestimated in daily clinical practice. PubMed, J Rheumatol, 2019 Jan;46(1):19-26. (Also see Symptoms and Complications of Rheumatoid Arthritis)

Medications and Sexuality

Sexual health in hematopoietic stem cell transplant recipients. Sexual dysfunction is a commonly described but relatively often underestimated complication after HSCT. PubMed, Cancer.

Vaginal Dryness and Sjogren's Syndrome

Vaginal Lubrication in Women with Scleroderma and Sjogren's Syndrome. Sexual difficulties are often experienced by women with scleroderma, particularly those with Sjogren's syndrome. S. Chris Saad, Ph.D, J.E. Pietrzykowski, Sheila S. Lewis, B.S., Arlene M. Stepien, M.S.N., R.N.C., Virginia Anne Latham, R.N., B.S., Shelley L. Ensz, Carol Wetherell, and Andrew E. Behrendt, Ph.D. Expired link. Sexuality and Disability, Vol. 17, No. 2, ISSN 0146-1044, Kluwer Academic, Summer 1999. (Also see Sjogren's, and Shelley Ensz)

Sjogren's Syndrome: A Guide for the Patient The Gynecology section of this page has information also applicable for women with scleroderma.

Pregnancy and Scleroderma

It is very important to consult your medical team if you are contemplating a scleroderma pregnancy, since medications may need to be adjusted beforehand, and specific risk issues can be addressed.

Many systemic scleroderma patients are able to successfully bear children, however it is always considered a "high risk" pregnancy and extra monitoring and precautions are necessary, both before and during pregnancy.

Common sense must prevail, of course. Patients with rapid onset or severe internal organ involvement may need to postpone pregnancy until the symptoms abate or toxic treatments are completed. Depending on the situation, a few people may still be advised to forego pregnancy plans altogether, or to select another route to parenthood (such as adoption or surrogate parenthood).

For more information and research on Pregnancy and Sclerderma, Autoimmunity and Pregnancy, Medications, and Male Infertility, see our ISN page : Pregnancy and Systemic Scleroderma

Personal Stories

Fred: Future Spouse of Scleroderma Patient I met a girl five months ago and immediately fell deeply in love with her…

Kathy R: Localized Scleroderma I was diagnosed with Localized Scleroderma when I was six months pregnant with my son in 1965. It started at the time with blotches on my right arm…

Marina: Diffuse Scleroderma I was sent to a rheumatologist who spent one and a half hours checking me while explaining this rare and incurable autoimmune connective tissue disease in a nut shell…

Sclero Forums Discussions

Vaginal Dryness: Lovely isn't it? I've been have some vaginal dryness for a year now. Honestly, I thought vaginal dryness was just inside the vagina, didn't realize it meant the outside areas too…

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