Scleroderma Secrets: the Unmentionable Topics That Patients Hide

Scleroderma Secrets: the Unmentionable Topics That Patients Hide

Scleroderma and the Ordinary Girl
Writing about scleroderma is important. It helps to raise awareness, and with any luck, funding for research to help find a cure will follow. I believe that one of the most important sources of information comes from the patients themselves. There is nothing more real than reading the everyday experiences of someone living with the disease.

However, in my humble opinion, there is a list of subjects that are rarely discussed regarding this disease. I call them the scleroderma unmentionables — taboo topics that are too revolting and embarrassing to talk about.

I have noticed that I am comfortable writing about my pain levels, fatigue, medications, or insomnia in this column. However, I don’t really write about the unmentionables. So it’s your lucky day, readers — buckle up, because here we go.

Fecal incontinence, aka crapping oneself, can be part of having scleroderma. This unmentionable part of the disease results in having to carry around changes of underwear and flushable wipes, dreading the next social occasion, and continual washing and laundering. It makes life exhausting and complicated, on top of all the socially acceptable mentionable symptoms that everyone already knows so much about. (Incidentally, what about one of the tests associated with fecal incontinence — an anorectal manometrySounds like a fun wee procedure, right?)

Urinary tract infections (UTIs) are particularly common in those who are immunosuppressed. These frequent infections not only mean having to deal with physical discomfort, but there are also the associated odors, frequent toilet visits, and the impact they can have on our sex lives. How many times have my female scleroderma readers been asked by their nurses, “Are you wiping from front to back, dear? You must pay attention to your personal hygiene.” To which I always wearily reply, “Yes, I’m well aware of these things,” while feeling judged, unclean, and uneducated.

And then there is bacterial overgrowth in the GI tract (thank you, scleroderma!). This marvelous complication results in almost continual passing of wind, usually loudly and with an interesting presentation of assorted aromas. And while coughing or talking loudly can sometimes provide a distraction to the sound (not so much the fragrance), it can also present another conundrum for the scleroderma patient.

Unfortunately, bacterial overgrowth also produces horribly bad breath. So now coughing and chatting to others also becomes a problem. Knowing one has raging halitosis results in compulsive use of gum, gurgling breath freshener throughout the day, and a huge drop in self-esteem both in social environments as well as during intimate moments with your partner.

Which leads me to another topic that is often avoided: sex and intimacy. Scleroderma presents issues such as erectile dysfunction in men due to fibrosis and impaired circulation. Women experience vaginal dryness, not to mention having to negotiate decreased sex drive, joint and muscle pain, mouth dryness, diminished hand dexterity, fatigue, breathing difficulties, heart problems, gastrointestinal disruptions, smaller mouth size and depression. Romantic — not.

I have only presented a few topics on the scleroderma unmentionables list, but there are many others. Please understand these topics are actually NORMAL (but undesirable) symptoms of a horrible disease. To avoid acknowledging they happen does not normalize the awful, often daily experiences they present for scleroderma patients. Instead, they become secrets, and secrets breed shame — which is hugely destructive for the patient.   

I worry that we don’t have enough conversations about the scleroderma unmentionables. I’m not suggesting they are great topics for a dinner party. However, a safe place to begin may be within a scleroderma support group. Use this column as an introduction if you like, use humor, be straight up, present studies or flow charts — whatever works. But please, let’s not be part of the shame that these aspects of scleroderma have attached to them. It won’t help us in any way.


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

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  1. Elizabeth says:

    Thank You SO MUCH for writing this column, Kim!!!
    I had no idea these were all common to scleroderma–and apparently neither does my doctor. I have been complaining about vaginal dryness and the pain attempted with intercourse to my gyno for years, and every time she checks me, she tell me I have no problem with dryness. I don’t know what to do, because it is terribly frustrating (along with all the other problems some of which you mentioned above pertaining to any kind of sexual attempt). I’ve tried coconut oil (as my gyno suggested) but it does not help with the pain–thus inability to have intercourse. Any suggestions, please? Seems like this is the time to ask, since this is a specific column on “unmentionables.”

    • Kim Tocker says:

      Hi Elizabeth – thanks so much for your comments. I’m not a doctor but I’ve done a little research into the vaginal dryness issue. I’d encourage you to google “vaginal moisturisers” as opposed to vaginal lubricants. Moisturisers work differently and are for a different purpose. They can hep to make a difference. Replens is one brand, but there may be others available to you depending on where you live. I hope this helps. 🙂

  2. MJ says:

    Thank you! At times I have wondered if these items are unique to just me, so it’s so nice to read that others, possibly many others, have to deal with these unmentionables. Thank you for mentioning them! By doing so, you are saying “You are not alone!”
    Now we need a discussion on how people are dealing with these complications. Even though I’ve had scleroderma since 2003, finding solutions to some of its complications is a work in progress.

    • Kim Tocker says:

      Hi there MJ – Yes, definitely a work in progress, but so important to have things out in the open isn’t it?

  3. Thank you so much for enlightening me and I’m sure many others. Despite having almost all these problems many years before I was even diagnosed, and not knowing what was happening to my body, it all makes sense now. I have got to the point that I even suggest some of these problems might be related to Scleroderma to my doctors and most of them say that it’s highly unlikely? Unfortunately this just hilights the fact that 99% of doctors have no experience with the disease at all. Even my rheumatologist dismisses the idea . I had always thought that there was 20 additional other diseases going on when really it’s just the one. I learnt something very valuable from this article and it’s almost a relief to know that Scleroderma is the cause. I am extremely lucky in the sense that I am able to conduct my life well compared to others who are completely disabled by the disease. However all these annoying symptoms still have a huge impact on your life that people cannot see or understand. Once again thank you.

    • Elizabeth says:

      Hi, Sara. Unfortunately what you are going through is what most of us with scleroderma go through. We are mis-diagnosed for years by paternalistic doctors, and we end up fighting for ourselves until we find a doctor (usually a rheumatologist) who actually knows something about scleroderma–or knows someone who is and is able to refer us to him/her. It is time to find a doctor who actually knows about this disease and isn’t treating you like a widget on his/her examining table, but actually cares about finding help for you…someone who says “I do now know anything about the disease, but my first priority is to you, so I will find someone who does know, because I want to follow my Hippocratic oath, not to do you any harm.”

    • MJ says:

      Just wanted to mention a couple of things that have helped to improve my QOL by addressing a couple of these issues, primarily the incontinence and the bacterial overgrowth. Since the incontinence has been worse at some times more than others, I started keeping a diary of what I ate and found that gluten-free crackers/chips/breads made it really bad. I started eating bran cereal with a little whole grain and stopped eating crackers, and saw a significant improvement. For the bacterial overgrowth, a serving of Greek yogurt everyday is helping tremendously. Hopes this helps others.

      • Tracy says:

        Long before diffuse scleroderma was diagnosed, I had many tummy, cramping, sneezy, difficulty breathing, sinusy, issues and was allergy tested to find I was allergic only to MOLD! Which happens to be everywhere – especially in our foods. So that means anything fermented which causes all of your mentioned food issues, especially crackers. Check that list, modify it to fit your needs and I hope you’ll find relief. The main issue causes bacterial overgrowth (which is more than abundant anyway) and painful cramps & gas! The fermented list is LONG! I have given up a lot of my favorites to find relief and if I MUST have something, I am prepared for the consequences: for example, an evening planned for staying in instead of putting myself in the public forum.

    • Ca.grl says:

      Bingo. I am not a Dr., just giving my BODIES Experiences(constipation). I live in L.A. so I go to Cedars motility clinic. I get medication from Canada(Resterol),good old Miralax and patience.My worst time is nights.
      Find Dr you can talk too! Lots of causes, if have scleroderma more than likely you have another autoimmune disease. Have you had a smart pill(motility)or a defectogram(can be admistered different ways which affects results or methane test? Heard of SIBO diet or FODMAP diet.
      Fluids important as is exercise.Walking is easiest. Arthritis Today is a great magazine.
      Prolapse GI tract, hemmorroids(injection treatment-painless)fissures, rectocele, adhesions- so many other causes specific to each body. Many avenues to explore so don’t give up. Just don’t be quiet!!!!

  4. Ann Jackson says:

    Feaces incontinence is the one of many symptoms I have due to this condition that effects my life more than anything else. When I am out I am constantly looking for toilets. I dare not wear trousers in case of an accident as I have no knowledge. Most times incontinence pants hell but not always. I dont like staying anywhere again because of possible accidents. My husband is wonderful and supportive and holds me gently as I cry and just says its alright dont worry . I am in the process on writting a food diary and have been taught the exercises. I love bright coloured clothes but no only ware dark colours. ButI am ggrateful for being a life and looking forward to the birth of my 3rd grandchild in October.

    • Kim Tocker says:

      Hi Ann, hang in there, faecal incontinence is a challenge in this disease, and can be difficult to manage, although you sound as if you are doing the best you can. I’m encouraged to hear that you have a beautifully supportive husband. Great idea for the food diary and the exercises. Sometimes it is remarkable what you can learn simply by keeping a food diary, it really helps when problematic foods are eliminated from the diet. Once again, hang in there and wishing you all the best. Thanks so much for your message 🙂

  5. Kathryn says:

    Great article – thank you! I am so glad to have discovered this site. I no longer feel alone and inadequate for having had so many symptoms, for so long, before one curious doctor put it all together and called in a rheumatologist. You rock.

  6. Holly says:

    I’ve always said that this disease is very humbling. Farting, burping, along with the diarrhea is for 80 year olds, not us youngsters. My incontinence started when the manufacturer of my immunosuppressant drug was changed from Teva to Strive. I was allergic to something in the new pill and it wrecked my stomach. So, beware of changes to your medication.
    Diet plays a large part in my incontinence and keeping a diary helps to pinpoint the problem foods. For me, it’s anything that has artifical flavoring, perservatives, or processed foods. Great post!

  7. Reglois says:

    I know this thread is old but the relief to read that I was not just old and incontinent. Even the specialist doesn’t believe that it is one of the symptoms, had X rays and the finger machine type test, also tested doubly positive for SSc in two blood tests BUT despite all the symptoms I have, dry eyes and mouth, teeth coming loose, horribly itchy ears and all over manic itching, double incontinence, swollen itchy legs, hair loss, sore joints, the other symptoms could be my other lung problems, (pulmonary fibrosis, emphysema, bronchiectasis)fatigue, breathless ness, dizziness, coughing, chest pain, feeling like my bra is three sizes too small. No real skin involvement yet, though my feet are very shiny and sole on left foot uncomfortable due to *pebbles*. They ant to do more tests to rule out Systemic Schleroderma !! They now want to do a small operation on my mouth to see if my salivery glands are defective as a cause of my chronically dry mouth, NO, I have refused. I live abroad so there is a bit of a language barrier, my language skills didn’t encompass medical terminology before all this 18 months ago. I don’t want any more tests over this horrible disease, mostly because I don’t feel believed and besides the other diseases will get me long before this does. Have recently refused all treatment for anything bar low dose of steroids for the cough, it helps a lot. What I would like to know is has any one anything that lessens the itching, trying not to tear myself to pieces. I fear that because of my refusals I shall soon be dropped from even follow ups.

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