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MomWithPots

Touchy Topic - Intimacy Issues...

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Excuse the title..couldn't think of appropriate wording :)

I know sex is usually a private topic and I hope it's ok to post about it here, but I'm curious if anyone else has any issues. During intimacy, I experience symptoms such as numbness (legs and hands) and nausea. Afterwards I have episodes of shaking and I have a hard time getting my body temp back up..I don't see my husband much due to work and travel and with these symptoms it makes me want to avoid any relations at all. My husband is very understanding, But it still takes a toll on our relationship of course. He has even accused me of not being attracted to him and using my illness as an excuse..its frustrating for us both!

Does this happen to anybody else? Any insight is greatly appreciated!

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I haven't had a relationship since all this started so I can't give any first hand feedback. But this topic has come up at least 2 other times since I've been on the forum. You describe similar issues to the other posts. You may want to do a search. Hang in there.

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Thanks Katie, for pulling these up! It is a touchy topic but sharing experiences could help make things better. If you find it difficult to discuss this with your partner, or just for better understanding, it could be helpful to write down what your sexual relation does to your body and ask him/her to read. It could help your partner understand. At a quiet moment you could discuss what it means to both of you and hopefully you will find options that work for the two of you.

I dont experience the numbness but find my heart racing very uncomfortable.

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Physical exertion of any kind is not easy to handle for me - that includes this issue too...

However, I am really puzzled by one fact: Whenever (no exception!) I get very potsy from physical activity (just "normal" ones), right afterwards my libido gets literally on overdrive.

There must be a kind of biochemical process triggering this. No doc ever could give me an idea about the cause, everybody was very much surprised...

And I personally don't like this phenomenon at all, it really bothers me, to be honest...

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Word for word..

Things I find that help... Don't shower a few hours before hand... Have plenty of powerade zero , keep the room cool, take it slow. Normally ours is around the weekend when I can rest a bit more

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I've noticed that my hands start to get tingly because obviously you're breathing quite differently than normally. I think what I experience is like a hyperventilation deal. Also my bp is often much lower afterwards (which is typical of anyone, not just people with POTS). Definitely take things slow!

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Interesting with the tingling hands, never had that. But the soles of my feet get very tingly.

And yes, BP and HR goes down afterwards, which is not bad...

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My challenge has been a feeling of being overstimulated, and then I am vulnerable to a surge of sorts after. I have had a couple incidents that concerned me.

Maybe another challenge is just the feeling of not being as fit. Possibly a guy thing. I have to be more selective than before, and there are limitations.

I would only encourage to continue to find a way, and to try not to let this illness take that from you two. I realize that may be easier said than done.

Concerning the comments your husband has made, we do have this silly need to be needed. Consciously all of it can be rationalized, but there is no switch to cut the feelings on and off. He may struggle between a desire to be considerate and the feelings he cannot help.

I am sorry the two of you have this challenge. The intimacy is important, and especially when you are young. I hope the two of you can continue to find ways to enjoy each other. For you and him.

This can be a touchy subject, so I hope that I have said nothing out of the way.

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I also experience physical challenges associated with having sex. My legs shake and I tire quickly. Afterwards I feel completely trashed and pretty useless. Much worsened OI symptoms and extreme exhaustion. I have wondered for me if this is a mast cell triggered response. I am on a prescribed mast cell cocktail but it doesn't seem to help with this issue. I have found that having sex at night and being able to sleep the post sex symptoms off helps as opposed to having sex in the daytime and having to try and function afterwards. I also have thermoregulation issues so the room temp has to be just so. It can be very frustrating I know.

Janet

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Excuse the title..couldn't think of appropriate wording :)

I know sex is usually a private topic and I hope it's ok to post about it here, but I'm curious if anyone else has any issues. During intimacy, I experience symptoms such as numbness (legs and hands) and nausea. Afterwards I have episodes of shaking and I have a hard time getting my body temp back up..I don't see my husband much due to work and travel and with these symptoms it makes me want to avoid any relations at all. My husband is very understanding, But it still takes a toll on our relationship of course. He has even accused me of not being attracted to him and using my illness as an excuse..its frustrating for us both!

Does this happen to anybody else? Any insight is greatly appreciated!

If it becomes a big issue, i'd consider using a chemical such as clonazepam to prevent your symptoms.

It can prevent those kind of shaky flares, or bring you back after "exertion" problems.

Exertion causes extreme flares for me.

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