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#1 annkd

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Posted 19 July 2007 - 05:55 AM

OK. I'm not sure where to begin. Maybe someone can tell me if there is a section here that might be informative. Yesterday my gyno told me that the scleroderma has made having "relations" with my husband a challenge because of scaring and other problems (this is really difficult to talk about). When I told my husband he was less than supportive. When I went on to tell him that it seems that every month something changes and I feel overwhelmed he said that maybe I was playing the victim.... I don't even know what that means? I am guessing that he is just plain ol'fed up with me and this disease. I'm feeling mad and sad both at the same time. Does anyone have any advice? Crying isn't helping. Thanks. -Ann

#2 jefa

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Posted 19 July 2007 - 06:14 AM

There is an article on the Support page on Emotional Adjustment which you may find helpful:

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

It seems to me that general communication is a bigger problem. Would it be possible to have him go with you to talk to your doctor? There are other articles on the Emotional Adjustment page which may be of help.

I feel lucky that my husband has been very understanding of the changes we have had to cope with, but in spite of that, we have also had our frustrations. You need to keep yourself strong and not let his lack of understanding get you down. You have an excellent support structure on this forum. I am sure others will share their experiences of how they have helped their partners to cope (or not). Hugs to you, Sweetie.
Warm wishes,
Jefa

Carrie Maddoux
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#3 Sweet

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Posted 19 July 2007 - 07:51 AM

Hi Ann,

I'm really sorry that you and your husband are not seeing eye to eye. I wish I could tell him this is a real problem. Carrie gave you two excellent links that I hope will help you explain this to your husband. Better yet have him read it.

My heart goes out to you, we're here for you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 annkd

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Posted 19 July 2007 - 09:23 AM

Hi Sweet - you are absolutely right - I will attempt to get him to read these recommeded sites. I wish I understood what was going through his mind. I ask and he is really disconnected. Thank you and this forum for all your support. I'll let you know if we make any progress. - Ann

#5 Margaret

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Posted 19 July 2007 - 02:47 PM

Ann ,

Why don't you reassure him that if/when he developes prostate cancer you would be there to support him?!?!? Good grief....marriage vows are suppose to be through sickness and health!!!

Margaret

#6 Shelley Ensz

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Posted 19 July 2007 - 03:44 PM

Hi Ann,

We also have a section of our site devoted to sexuality and scleroderma. It is very common to encounter some sort of sexual difficulties with scleroderma, but equally important to find satisfactory ways to accomodate them. Just because some things may be more difficult (or occasionally, impossible) does not mean that the joy, love, warmth and caring of the relationship should be impaired because of it. There are many ways to show and express love and to satisfy our partner's physical and emotional needs, as well.

It is easy for things to spin out of control with a chronic disease, and it is highly recommended for us to seek counseling if or when the illness is threatening one of our close relationships. Fear and frustration can quickly displace hope and acceptance!

Although it sounds very trite, and is very difficult, try to look at things from your spouse's point of view, I.e. how he must feel threatened and insecure by the rapid changes brought about by your illness. He probably needs more education about how the illness is affecting you, and conversations about ways in which you can work together to enhance your love life. I know it seems the focus should be on us when we are the ones having the illness; and it should be; but that's usually not how it works in reality and it is not in the least bit uncommon for spouses to get their noses bent out of shape as each new problem with the illness develops.

You will need to bring to bear all your coping skills not to just get through this, but to get through this with a stronger relationship. I know you can do it but I can't promise that it will be easy! Extra warm hugs to you.

Please see this link for more in-depth information:
http://www.sclero.or...-to-z.html#sex
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.

#7 janey

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Posted 19 July 2007 - 04:09 PM

Ann Darlin',
Here's a ((((((((((((big hug)))))))))))))))) for you. It looks like you have been given some great advice and links. Please take the time to read them. There's some great information.

I was where you are about 2 years ago. It was quite hard to deal with both physically and emotionally, but with lots of communication and experimentation, my hubby and I persevered. Just remember that there is more than one way to have physical relations. (If you know what I mean? :rolleyes: )

One thing that we all need to remember is that our partners' lives have changed also. No, they don't suffer the physical symptoms that we do, but their quality of life has changed just like ours has, so whenever we can - we need to give them some quality time and attention. My husband makes me feel special by taking care of me every day. So whenever possible, I do something special for him. We've been married 33 years and, believe it or not, we have the strongest relationship we've ever had.

I'll be cheering for you Darlin'. Please let us know how things go.

Big Hugs,
Janey Willis
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#8 annkd

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Posted 20 July 2007 - 05:06 AM

Janey, Shelly and Margaret (and all of you) - Thank you so very much for your kind words of advice and understanding. I agree that I need to understand where he is coming from. I really truly try to talk to him, but he is (as I said before) disconnected. This morning I asked him why he thought I played the "victim" and he said it had nothing to do with my illness. I asked him then, what he meant and he said that something that made absolutely no sense so I asked him to repeat it, maybe another way because I wasn't getting it. He wouldn't and that was that. I think I have hit a really rough patch in my marriage. I will try my hardest to make this work. I wish I could be stronger physically to match what energy I know I need to work on this...and a good sense of humor wouldn't hurt. Thank you all again. I'll check in now and then and let you know how things are going. Hugs, Ann

#9 TJ903

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Posted 21 July 2007 - 03:27 AM

There are so many things I would like to say to you, to help reinforce and strengthen you. Unfortunately they would seem shallow and hollow. Know that you are being sent happy thoughts and an extra measure of love. I am going through what you are right now as well and will follow this thread.

I'm not so strong, emotionally or physically and the help you get will help me. So for me you will be an inspiration and most helpful!!

Sending hugs - TJ

#10 debonair susie

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Posted 02 August 2007 - 01:41 PM

Boy, oh boy... this is another post I felt compelled to respond to.
I have Scleroderma, Sjogrens, etc and have been going through menopause (for, it seems... no less than 150 years :blink: ).
Margaret, you mentioned three words that hit me in the nose: Husband...Prostate cancer.... My husband has prostate cancer and COPD... one would think that his stamina would be an obstacle... not so! We've been married 21 years (in September) and his desire is just as great as it has always been... none of the above has hindered him... for that I feel fortunate, but am still frustrated that my desire has waned, along with my body.
Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)