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cmartinez

Dysautonomia & Intimacy

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Hi everyone,

My girlfriend was diagnosed with EDS, dysautonomia, and POTS within the past couple years. I too am a "spoonie" but with my own health issues so when it comes to health affecting everyday life I have a large amount of empathy. I love her very much and want to learn as much as I can about what's affecting her and why.

We've been together for 4 years and slowly over time her interest in sex has disappeared. At first I thought it was because of me, like something was wrong with me, not good enough or attractive. But then she was diagnosed and here we are now. We're still having a difficult time maintaining sexual intimacy, now so more than ever. She has never mentioned anything about sex making her feel hot or in pain (as I've read on other forum threads here), simply that she just doesn't feel a sex drive anymore. She mentioned it could be due to nerve damage with her dysautonomia, and that it could possibly be irreversible. She's tried to get me to have an open relationship so I can fulfill my needs elsewhere but I don't want that. My heart belongs to her and her only. I feel like I've run out of options but I'd like to continue doing whatever I can to help the situation. She also suffers from really bad ADD so getting her to actively talk to her doctors about this has been difficult. I came here to ask if anyone has suffered these side effects of dysautonomia and have you found any solutions? Any advice for a partner who sincerely cares for their lover's well-being, but genuinely misses the closeness/intimacy we once had?

Thanks!

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I definitely noticed that my desire to be intimate took a bit of a dive after my diagnosis.  I think, for me, it was difficult to have a drive when I felt so poorly all the time, and especially when I barely had energy to get out of bed.  Over the years, it has gotten better, and, especially after figuring out how to get back to exercise, it helped with the energy levels. I am probably still not back to where I was pre-POTS, but things are definitely a lot more like they used to be.  I think some of that was also me mentally coming to terms with how different my life was, and how differently I felt I had become.  I fortunately don't have any nerve issues that hinder how it feels for me, but I can see how that would change things if that is the case for her.  I definitely think openly talking about it is good for both of you, and perhaps, she might want to discuss with her OBGYN.  I know that a lot of times, diminished libido can be effected by hormone issues, and perhaps there is something she can try to see if it helps, birth control, hormone therapy, etc.  If not, maybe you guys can do other things that create intimacy without the actual sex.  Massages, cuddling, that kind of thing?  Not the same, I know, but definitely might help with the lack of closeness.  

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I noticed my sex drive disappeared for a while. It is back a little more and it may just take time. For about a year I didn't want sex in any form, then one day I just wanted it. Just be patient, supportive and loving. It sounds like you are doing what you can. I wish you both the best of luck.

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I would work on finding out what she can tolerate, intimacy wise. Like this might be TMI but personally I need certain things to feel okay. The room has to be cold, I can't just have eaten, i can't be on top because i get light headed, sometimes I have to take breaks. I've been with my BF for 6 years and he's accommodated everything I need and understand, it took a lot of the guilt away of not being able to act like a 20 something year old with a high sex drive. I hope that makes sense. Talk to her about it.

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Hi. In my last relationship (we are still friends), my interest in sex did wane after a while, mainly because of the fatigue of the POTS/EDS and other issues. The dysautonomia also affects the lady parts and can change the level of sensation there. Also if I o******d, it made my health symptoms much worse. It was a bit tricky. Hugging was important for both of us and that never waned. Making sure your partner is well enough and if in the right mood is important. 

We did find that lying in the spoon position was less demanding on the body. I think finding a good position that doesn't cause pain or other symptoms is a good idea. Talk it through and see if you can find a way that suits both of you without pressure. 

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Focus on the good days with her illness to be intimate. I agree with TCP. Try using also fore play for intimacy such as cuddling, hand holding, kissing, finding the right position, lubrication, what ever works between the two of you.  

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