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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 andScleroderma Video
Presented by Amanda Thorpe

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

Maintaining Intimacy. When you are in pain, the last thing you probably want to do is be intimate with your partner. But, it is important to remain close to your loved one. A healthy intimate relationship can positively affect all aspects of your life. WebMD.
Sexuality: Chronic Illness and Your Sex Life. Suggestions for keeping your sex life healthy if you have a chronic illness. FamilyDoctor.org
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. MJA 2003; 179 (5): 263-266.

Erectile Dysfunction and Scleroderma

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, 2013 Dec 5. (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

Sexual activity and impairment among women with systemic sclerosis. Seventeen percent of the patients were sexually active and not impaired. Arthritis Care and Research, 2011 Nov 10.
The association of body image dissatisfaction and pain with reduced sexual function in women with systemic sclerosis (SSc). Pain is an important indicator of sexual function among women with SSc. Body image dissatisfaction was not independently associated with sexual impairment and appears to be less important factor than pain in determining sexual function. Future research should focus on isolating specific sources of pain that may be amenable to intervention in order to improve sexual function. Ruby Knafo, Rheumatology, January 27, 2011.
(Not) talking about sex: a systematic comparison of sexual impairment in women with systemic sclerosis and other chronic disease samples. Women with SSc, particularly those with dcSSc, have high levels of sexual impairment compared with women with other chronic diseases, where sexual function has received greater attention. Ruby Knafo. Rheumatology. August 19, 2009.
Sexual Dysfunction among Women with Connective Tissue Disease. The Female Sexual Function Index (FSFI), consisting of six domains was used to assess the multidimensional nature of female sexual dysfunction among women with scleroderma. Our results show a high prevalence of sexual dysfunction among female scleroderma patients compared to a healthy control population. Erica Anderson (IngentaConnect) Current Rheumatology Reviews, Vol 5, No 2, May 2009, pp. 126-132(7).

Medications and Sexuality

Stem cell therapy takes a toll on sex lives. A long-term study showed that sexual dysfunction is a major problem that does not fully subside after a type of stem cell therapy called hematopoietic cell transplantation, or HCT. This is true in both men and women. Reuters UK. 09/28/07.

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. Myalgia.com.

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...
Go to Sleep Disorders and Scleroderma

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