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Help & Advice needed on a personal issue.

3 posts in this topic

I am suffering with an embarrassing problem and hope somebody can help me or tell we where I can get any advice from.


I'm in my 20's and have been on medication since I was 18 for my scleroderma, not sure if this has anything to do with my tablets or its just due to my condition. Over the last couple of years I have been suffering with a low libido. I have never felt like this before and as its affecting my relationship with my partner. I really want to get it sorted now.


I have been to my general practitioner and they made me do a test but said there didn't look like there was any problems so nothing else was done.


I just want to know if anyone else has had this problem and if or what is the best thing to do next.


Any help or advice would be great.


Thanks in advance.

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Hello Louise


Bravo to you for discussing a difficult topic, I've no doubt you're not the only one dealing with this issue.


Interesting that your doctor did a test then dismissed the issue, I can only guess that the test was something to do with hormone levels because these can effect sex drive. What a pity your doctor didn't suggest anything else for you.


There are many possible causes such as fatigue, medication and self esteem issues all of which could be causes in their own right as well as being linked to scleroderma for example, fatigue is a scleroderma symptom, many of us are on numerous medications and some develop self esteem issues in response to the physical changes scleroderma can make to the body. Have a look at what the Mayo Clinic says about the issue including tips on how to broach the topic with doctors.


I think you're going to have to pursue the issue with your doctor in order to find the cause and don't be deterred, you're entitled to have the problem taken seriously.


Take care and keep posting.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Louise,


We also have a page on Sexuality and Scleroderma that is worth reading. So many things can cause a decreased libido, including depression and altered self-perception (I'm sick with this disease, how can anybody think I am attractive or worth loving?). Pain, even a low-level, hardly noticeable pain, can do it. Coping with the demands of every day life and the illness can do it. My hubby and I went through a dry spell (no pun intended) when his normal responses to me changed and I, of course, decided I'd become unlovable and my normal response to him then changed too. Not so, he was just afraid of hurting me or worsening my shortness of breath. Frank discussion between partners can really help.


Medications can certainly play a role in this and if you want, it is very easy to check side effects of medications online. Two sites that list complete information are and Most pharmacies don't include the complete package info when they refill a prescription, but I believe you can ask for it and most places will give you all the printed material the drug companies include. (This should be free of charge.)


This is an issue that is worth persevering to find a solution. Sometimes major medical centers can provide free or low cost counseling for people who are having any kind of relationship difficulty as a result of illness.


Best wishes,

Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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