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Scleroderma affecting my Sex Life

sex smear test systemic sclerosis

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#1 Dee L

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Posted 04 July 2015 - 12:34 AM

Hi all

 

I recently saw a post on another site regarding smear tests being very painful but I haven't seen any posts or literature regarding how Scleroderma affects the 'vagina' on this site so I wanted to share my story.

 

In summary I was diagnosed with Scleroderma in 2008, had a crisis in 2011 which was diagnosed as heart and lung failure resulting in having myocarditis and lung fibrosis, started new treatment regime including cyclophosphamide, rituximab and mycophonolate (which I still take) and I am delighted to say I have not only come through the other side but there has been evidence of the lung improvement.

 

I lead a good life, am not as fit as I once was but it doesn't stop me getting on, however............there are still symptoms which I find frustrating such as Raynaud's, reflux causing regurgitation (despite being elevated in bed) and even more frustrating is how my sex life is being affected.  My GP is very understanding but is reluctant to say it is due to Scleroderma, she thinks the cause is due to dryness (post menopause) but it doesn't matter how much lubricant I use, the pain is excruciating and unbearable and even causes bleeding.  Luckily I have a very understanding husband and there are lots of other ways to be intimate :wink: 

 

It would be interesting to hear if other people have similar problems and how they overcome them?

 

Have a great day

 

D x

 



#2 Joelf

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Posted 04 July 2015 - 09:54 AM

Hi Dee,

 

I'm sorry to hear that you've been suffering with pain, bleeding and discomfort.

 

Unfortunately, Scleroderma can affect every aspect of sexuality, and I've included a link to our medical page on Sexuality and Scleroderma which includes one of Amanda's videos on the subject.  I've also found a thread on Vaginal Dryness which I hope you'll find helpful and interesting.

 

Kind regards,


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#3 Shelley Ensz

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Posted 04 July 2015 - 01:56 PM

Hi Dee,

The medical term for painful intercourse is dyspareunia. Your issues sound significant, especially with bleeding. See the Mayo Clinic article on this at http://www.mayoclini...on/con-20033293

It would be a good idea to get a thorough exam with a gynecologist, and then also to report this issue to your scleroderma expert, but likely there is no different treatment if it is somehow caused by scleroderma or its complications.

Also be sure to maintain a close physical bond with your partner, no matter how many work arounds you need to employ. Counseling can also help restore affection whenever physical impairments are throwing a damper on things, which I mention for others who might stumble across this thread. It sounds like you are still keeping the home fires burning. ; )
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Amanda Thorpe

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Posted 04 July 2015 - 07:21 PM

Hello Dee

 

I was just discussing this very issue with two other ladies with scleroderma a few weeks ago! Thank you, thank you, thank you for having the courage to actually posting your concerns. You would be amazed how common this problem is but few feel able to raise it.

 

My husband and I have been together for over twenty years and our "ripping each others clothes off" phase has passed, quite naturally and of its own accord. Let me say that we totally enjoyed it at the time but that's just not where we are at now, I am nearing 50 and he is in his 60's and we just want to do things differently and as I've said countless times different isn't necessarily a bad thing.

 

Of course there is one essential to adapt to the problems scleroderma causes in this area and that's a strong, loving relationship underneath. The first year after my diagnosis, my husband and I weren't physically intimate for a year, an entire year. Now I know that some people would see that as a free pass to go play in another field at worst and indulge in self pity at best but we had none of that because of the quality of the underlying relationship. When I first became ill and Michael tried to find other caregivers it took a good few years before he succeeded, finding initially that many woman had been abandoned and many men windowed. Tragedy, disaster, disease just bring out what is already in the relationship.

 

So for us the intimate part of our life was changing anyway, that it had to continue to change because of scleroderma didn't therefore seem that alien. I know that we both feel this part of our life is now more meaningful, more emotionally intimate and even more about the other person. Our faith has always helped us keep this part of our relationship in context, even during the "ripping each others clothes off" phase we saw it as an expression of the relationship not the focus of it.

 

Finally a euphemism, let's just say that there is more than one section on the menu and maybe it's time to check out the starter or dessert courses rather than just ordering from the main courses? At least you still have a menu to choose from, some don't even have that. I know you know the importance of remaining physically close, talking openly without blame and without self pity and to focusing on what you do have.

 

Thank you again Dee for raising this issue and I hope that you and your husband find a way through, he must be very proud of you and vice versa.

 

Take care.


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#5 Dee L

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Posted 05 July 2015 - 08:48 PM

Thank you all for your responses.

 

I will follow up on the links you have provided Jo and Shelley - thank you.

 

Amanda, love your euphemism, it really made me laugh.  You are right also about the strength of relationship, this illness has actually brought us closer together (despite the intimate aspect).  For years I had been a very independent person never asking for help with anything and when I suddenly became unwell I had no choice but to let others do things for me.  After a few months it dawned on me that my husband was actually enjoying looking after me and when we discussed this he admitted that he hadn't felt needed until then!  Profound words indeed.

 

Take care

Dee

 

 



#6 Amanda Thorpe

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Posted 12 July 2015 - 11:33 AM

Hello Dee

 

That's so marvellous and just goes to show that in some ways, scleroderma actually works for us. It's life Jim but not as we know it!

 

Take care.


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#7 quiltfairy

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Posted 12 July 2015 - 01:03 PM

I had a boyfriend for awhile, but when the pain in our intimate life came he just could not handle it.

He was also a truck driver and the worst part for him was that if anything happened to me he may not be able to get here soon enough. Since then I have not been in a intimate relationship. I have decided that I don't want to go with the pain of breaking up again when things happen. I have many friends, but I prefer no relationships. Maybe it is unfair of me to say that no man wants to come into a relationship to care for a woman with a disease such as ours.

I hope that you who are in relationships can have great ones.

#8 xxx

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Posted 14 July 2015 - 10:07 PM

Hi everyone!

 

Not quite the same subject, but an intimate one nevertheless!  I went through the menopause and finally had my last period approx 5 years ago..............until...........last week :dont-know:

 

Is this another side effect of scleroderma?  I contacted my GP and have an appointment next week to have an assessment!  

 

Any advice please!!!



#9 Joelf

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Posted 15 July 2015 - 04:47 AM

Hi Mothergoose,

I'm afraid I would be a bit concerned about having a period so long after the menopause and I'm glad to hear that you have an appointment to see your doctor.

Please note that I have no medical training, but I've never heard of Scleroderma causing a period-like bleeding after the menopause. There could be bleeding for any number of reasons, many of them harmless, but it's something that definitely requires further investigation.

Kind regards,

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#10 Amanda Thorpe

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Posted 17 July 2015 - 02:56 AM

Hello Quiltfairy

I am really sorry to hear that. You're quite right though, this disease doesn't just affect the person with it.

Take care.
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#11 Amanda Thorpe

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Posted 17 July 2015 - 03:08 AM

Hello MotherGoose

I am with Jo, you're right to see the doctor because I have never heard of what you describe in association with scleroderma. I have heard, as women do, that bleeding after menopause is not normal and merits a doctor's appointment.

Please let us know what happens and take care.
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#12 xxx

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Posted 17 July 2015 - 05:12 AM

Thanks all!  Will let you know what happens!

 

Regards



#13 Shelley Ensz

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Posted 21 July 2015 - 06:38 AM

Yes, Mothergoose, I agree with everyone else, please hie thee to a doctor. It is not normal to have vaginal bleeding after menopause so it requires evaluation in order to rule out serious causes. I'm hoping yours is caused by just-one-of-those-things but we are here for you whether it's a fleeting, normal thing, or more than that.

 

Dee, I can really relate to your husband. My late husband was a fantastic caregiver for me, and I found it to be deeply rewarding whenever I was able to return the favor and provide caregiving for him. There's something about telling a person you love them versus showing them by stepping up to the plate for difficult things, that is deeply satisfying. 

 

Of course, it's not right to base a romantic relationship entirely on one person "helping" another, because then its more of a pseudo-need-to-be-needed love. But I was thrilled to have the inner satisfaction that I was truly loving, and that I was joyfully honoring our vows of "in sickness and in health" in the same way he had. It added a depth to our love which made it even richer and more satisfying to us both. Just don't let it devolve into a purely caregiver/patient relationship, as that can very easily happen.

 

We kept the home fires burning, with lots of daily affection and love notes to each other even on our pill containers. We merrily worked our way around all sorts of physical obstacles like oxygen tanks, permanent catheters, IV lines and bags, ports, chest drainage tubes, casts, etc.  We'd give the heads up to his hospital nurses that we were serious whenever we employed a Do Not Disturb sign. We held private luau's in his hospital room, and even used battery operated candles so his oxygen wouldn't explode.

 

Love isn't something to find. It's something to make.

 

:hug-group:

 

 


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#14 Dee L

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Posted 22 July 2015 - 08:51 PM

Shelley.......that is beautiful....I am sure you miss him very much x



#15 Amanda Thorpe

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Posted 23 July 2015 - 03:13 AM

Shelley Ensz you saucy minx! How fabulous, dodging the oxygen and other obstructions!

You're so right, the most difficult thing when I became I'll was the inability to demonstrate how much I love my husband. I used to do so many practical things for him, from ironing his shirts to serving breakfast in bed. Nowadays I am able to do a few things for him again but have had to accept, as has he, my limitations.

Bend or break and we have found that we're a very bendy couple! All aspects of our relationship are different nowadays and yes, we think better!

Take care.
Amanda Thorpe
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#16 Shelley Ensz

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Posted 23 July 2015 - 03:34 PM

Yes, Amanda, I agree it's tough to not be able to show our love the same way, when illness intervenes. I really dwelled on the topic when I was bedridden so long.

What really struck me then was that we both madly loved our parrot, Webstergirl, who was comprised of about 2 ounces of feathers, went potty anywhere she wanted, and never worked a day in her life. She was basically worthless!

So I figured, I brought more than two ounces to the table. I at least tried to be careful about where I went potty. And I would simply have to accept that I was loved anyway, for who I am rather than what I could do. One thing I could do, just like Webstergirl, was love with all my heart and try my best to show it.

When we can't do love, we can still be loving. We can be there for others, in fact, maybe even more so as we aren't distracted by our super busy life anymore.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.





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