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Scleroderma and Sex: The Issue No One Talks About

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Scleroderma killed my sex life. Eventually, my marriage died, too. Today, my life is beautiful nonetheless!

Situations like this sometimes happen and still, we hardly ever hear about them. Sex isn’t a taboo subject. At least it shouldn’t be. Yet, even in this day and age, there are often stigmas surrounding discussing our sex lives and any amount of personal details, so people don’t talk about it.

This needs to change. Whether people admit it or not, sex is a big part of our lives. It’s a big part of our relationships. However, some generations are often still very hush hush about sex in general with staunch beliefs that sexual intercourse should only happen behind closed doors, self-pleasure is “nasty” – that there’s something wrong with us if we practice this, and our sex lives are something we should never talk about.


This isn’t everyone of course, but clearly is still more common than not.

People still feel uncomfortable talking about their sex lives – especially when it’s “broken.” Like it’s something they did wrong. Or they should be ashamed about.

You know I’m right. How many other articles have you read like this? How often do you discuss your sex life (or lack thereof) with your doctor? When’s the last time they asked you if things were OK in the bedroom? When’s the last time you asked them if what you’re experiencing is a symptom of your disease?

If I’ve been having sexual dysfunction issues for years – I’m sure others have, too!

In my first marriage, I experienced a fulfilling sex life with few issues other than the common ones related to two adults working full-time jobs with long commutes while attending college, etc. – at the end of the day sometimes you’re just too tired so you don’t make sex a priority. My sex life was still fairly active and healthy.

After being diagnosed with scleroderma, going through high dose immunoablative chemotherapy and having my “mid-life crisis” at the age of 27, I changed as a person and that marriage couldn’t withstand those changes and therefore ended, as we then wanted different things from life.

When I was in my next relationship we too experienced a fun, healthy sex life. In the beginning. As my disease progressed, intercourse became uncomfortable and eventually painful. Not just because my joints and my body hurt, but also because my vaginal tissue had changed as well.

That’s not to say I could no longer reach climax, because that’s not the case.

The issue was not solely tissue dryness either. Our body parts no longer fit together like they once did. My vaginal canal had begun to change. No amount of lubrication eased the troubles or changed this fact.

Next up, due to the chemotherapy I went into “chemically induced menopause” – at the age of 29. Literally overnight. One month I had a period. The next month, I did not and I haven’t had one since. Now, not only had my vaginal canal changed in elasticity, I was truly as dry as the Sahara and had zero sexual desire.

Despite this, we did our best to keep our sexual relationship alive. It was a struggle. Our last sexual intercourse was while we were on our honeymoon. It was excruciatingly painful. I cried. He cried. We both wanted it to work, but I couldn’t handle the pain and he couldn’t handle hurting me.

We didn’t give up – just because I couldn’t have intercourse didn’t mean we couldn’t have a sex life. For the next six years we continued working to keep this part of our relationship afloat. It was work. A lot of work. We experienced peaks and valleys in our sex life. We tried a myriad of alternatives. We spent a lot of money. We went on a lot of trips. We saw a therapist. There are a multitude of activities you can enjoy to have a sex life without having actual intercourse. It turned out to be a lot of fun to be “forced” to try things we might not have otherwise dabbled in.

Here’s the thing though… and this takes a big, huge piece of honesty with yourself and understanding of life and human nature. Innate human nature. While oftentimes women can give up the act of intercourse and still be completely satisfied sexually, men are different. They are just wired different. In my opinion, it’s not fair to ask a man, in the peak of his sexuality, to just stop. Just turn off the need for intercourse. Some are willing to try – because they love their partner that much.

Some can do it. Some can’t.

In our case, we gave it a good effort and though most of our relationship was good, it wasn’t strong enough to withstand this.

At first I was devastated. Truly. I was sure I’d not be able to function in life successfully because my husband had been such a huge help for me. We had dressing routines. We had travel routines. We had house task routines. All things that didn’t require conversation anymore, they really were just part of the daily motions. It was smooth. Like a well-oiled machine.

When that was “taken away,” I struggled. I struggled hard. My heart hurt. I cried a lot. There were days I hated him for “being so selfish.” Days I hated the idea that someone else was going to fill my shoes and get to experience all of the good parts of him. The entire package. After all, we truly were best friends. Not just in the cliché way – we really were. I hated the idea that someone else was going to get to fulfill dreams we had talked about.

As time has passed, I have come full circle to a place I could never have imagined myself in. I have regained my independence. I enjoy living alone. Not everything is easy. A few tasks around the house are impossible without help – it’s OK to ask for help. I have a newfound excitement and joy in life knowing I am doing this on my own, when I once thought there was no way that I could.

woman wearing blue wig

I am a problem solver by nature. I’ve never let scleroderma be the reason I don’t do the things I want to. Initially it may slow me down, but I usually learn how to adapt and move on.

This is no different. Scleroderma may have changed my body and made sexual intercourse impossible. This in turn led to the end of my favorite relationship – this is true.  Still, it’s not the end of my story. It’s just the closing of a chapter, so that a new one could begin.

I will always persevere and rock on.

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Thinkstock photo via LuckyBusiness.

Originally published: September 20, 2017
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