| Emotional Adjustment and Scleroderma |
 Hello, I am Janey Willis, ISN Guide to Emotional Adjustment. I know from experience that scleroderma can place unique demands on patients and caregivers alike. I have systemic scleroderma (SSc). It is common to suffer reactive depression with scleroderma. If you or someone you care about is having a difficult or suicidal time right now, call your nearest suicide hotline, or a doctor, or hospital. This is a medical emergency and it is okay to go to the emergency room or to call for help from your local police or fire department. The important thing is to make a call—any call—until you find help. | |
| Emotional Adjustment and Scleroderma (MAIN MENU) |
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| Sexuality and Scleroderma |
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| Overview of Sexuality and Scleroderma |
 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. |
| It 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. |
| Sexual Intimacy and Scleroderma. Scleroderma may change the way you feel about yourself. Feeling that you are different from everyone else can also lower your self-esteem. You may feel you're not as attractive or as fun as you used to be. Coping with CREST. AOL Hometown. |
| Erectile Dysfunction and Scleroderma |
 Scleroderma Care and Research Journal: Spring 2004. This free online PDF medical journal issue includes articles on Diagnostic and Management Preferences for Lung Disease in Scleroderma, and Erectile Dysfunction in Men with Scleroderma. SCTC 6-2-04. (Also see: Lung Involvement) |
| Erectile Dysfunction in Systemic Sclerosis: Effects of Longterm Inhibition of Phosphodiesterase Type-5 on Erectile Function and Plasma Endothelin-1 Levels, In men with SSc-related ED, once-daily tadalafil improved both erectile function and vascular measures of cavernous arteries. J Rheumatol 2007;34:1712-7. |
| Erectile Dysfunction: An Important Clinical Symptom Associated With Rheumatologic Disease. While ED is an important clinical symptom physicians of all disciplines should be aware about it. However, in patients where ED occurs first and more “typical” explanations like hypertension, diabetes and others were excluded, physicians should think about the possibility of an underlying autoimmune disease. J. Rech AB0523 EULAR 2007 (Also see: Autoimmunity ) |
| Penile cutaneous temperature in systemic sclerosis: a thermal imaging study. The results show that penile thermal abnormalities occur in almost all sclerodermic patients. Non-contact thermal imaging not only identifies thermal alterations but also clearly distinguishes between SSc patients and healthy controls and therefore could represent a valuable instrument in identifying early ED (erectile dysfunction) in SSc patients. PubMed. Int J Immunopathol Pharmacol. 2007 January-March;20(1):139-144. |
| Impact of Depression, Vascular and Fibrotic Changes on Development of Erectile Dysfunction (ED) in Men with Systemic Sclerosis. Patients with erectile problems have more extended fibrotic changes, which indirectly suggests that fibrosis of the corporal body may play the main role in the pathogenesis of ED in SSc. P. S. Ostojic. SAT0223 EULAR 2006. |
| Erectile Dysfunction and Scleroderma (scroll down). The potential for topical nitroglycerine to treat ED secondary to scleroderma is an interesting topic for future research. However, this therapy should be used only with caution until better understood. Correspondence. (Lower part of webpage) J Rheumatol. VOLUME 31: NO. 10 OCTOBER 2004. |
| Erectile dysfunction associated with scleroderma: a case-control study of men with scleroderma and rheumatoid arthritis. Erectile dysfunction (ED) occurs frequently in systemic sclerosis (SSc), is more common than in rheumatoid arthritis (RA), and occurs on average 3 years after disease onset. Raynaud's Phenomenon appears to be associated with ED in both SSc and RA, but is not necessarily an independent risk factor for ED in SSc alone. PubMed. J Rheumatol. 2004 Mar;31(3):508-13. |
| Erectile Dysfunction in Men with Systemic Sclerosis. The high incidence of ED in young SSc patients and the occasional concomitance of the onset of SSc and ED warrants further evaluation of a causal association. J. F. Marques Neto. AB0331 EULAR 2003. |
| Female Sexual Dysfunction |
| Female sexual dysfunction. In women, a diminishing sex drive, a loss of libido and even pain during sex disrupts her sex life. These symptoms describe ‘Female Sexual Dysfunction’ (FSD), a real medical condition that is very common and occurs often in women between 25 and 50 years. Dr Brigid Monda. The Standard. 12/07/08. |
| 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 |
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| 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... |
