Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Sex-Disability and Chronic Pain.

Apr 22, 2016 11:47 PM

So, a more personal topic now. I'm 36 and am in the prime of my life, I am quadriplegic and so when it comes to having intimate relationships it's been a long journey. I'm 4 years post accident and for the first 2 years there abouts I thought I would not be able to be intimate again, having to relearn how to use your body when your arms and hands are semi paralysed and the rest of you is paralysed from the chest down. I had been in a relationship with a guy for about 3 years but the relationship ended a few months before my accident. So naturally once I had started thinking about how life would be,my natural question was, how do I have sex if I can at all in the first place. It's been a journey of self discovery, I have had intimate relationships since, and learnt that even though there may be certain physical obstacles including Chronic pain that you have to deal with, that you can still be intimate and have those experiences you may have thought you might not be able to.I'm currently not in a relationship at the moment but, I wanted to tell people this because I didn't have anyone that I could find out anything from and when you have chronic pain and physical disabilities, especially in my age group or any age for that matter, you can feel and become so isolated that it is hard to imagine that you CAN have a "normal" life and relationships, I found that this sort of topic is not massively talked about because we can feel awkward when it come to "Sex" a lot of the time, but it is just a natural part of our life and should be talked about.๐Ÿ˜Š

Apr 23, 2016 12:38 AM

You are right JAHMAC perhaps that's why you've gotten many views and I am your first comment. And I am commenting because I believe the hard stuff needs to be talked about too. I am single, no significant other and due to my illness and chronic pain can't even think about introducing a mate into the mix of my life. For a person who is use to having things in order life has been out of order since the beginning of the worst part of my illness. I couldn't imagine being in a relationship with anyone. ๐Ÿ˜

Apr 23, 2016 1:41 AM

I am 59 and for 10 yrs, 98% of the time I have 0 Sexual interest. Nevertheless, I have had two long term relationships wherein sex itself wasn't an issue. There is intimacy and great fun, just not much sex, and I'm happy with that.

Apr 23, 2016 7:55 AM

I am 52.
My Neurologist gave me a book on this topic. I was shocked but this book has positions that are considered safe for my spine and cord. And instructions on setting up for coitus. It takes some planing and a partner that has the stamina to endure the set up but works. Also being a woman gone through surgical menopause I have to make other preparations to help with pain during coitus. Even few n far between.
Point is ask your doc an be open minded.

We all have issues some more than others. As a woman I know that my role in my home was to be the nurse, maid, cook, bottle washer and work on the farm๐Ÿšœ n a public job๐Ÿ›„. Well all that changed in 2009โ™ฟ๐Ÿ’ฅ๐Ÿ’ซ now I take care of just me and have to ask others to help me๐Ÿ˜”. And that is additionally draining along with the pain๐Ÿ’ฅ death of spouse๐Ÿ˜–. I happen to have a male friend now who knows in advance what they were getting into and am thankful that they are willing to put up with my mood๐ŸŽ† swings from dealing with the pain n not being able to be spontaneous like I use to be.

Sex is ร  mental thing they say๐Ÿ’ซ. There comes in the mental open mindedness.

You all have a bless day and I am going to be help ad get outside today and get some natural Vitamin D an go to my happy place. ๐ŸŒž๐ŸŽถ๐ŸŽญ๐Ÿ™

Apr 23, 2016 11:39 AM

This subject is very close to my heart.
As many women were I was under the impression as a very young adult that sex was this magical thing driven by what I thought must be love.
As I grew older and wiser I found what I thought was love was really lust and hormones.
After my divorce I felt like I would never be interested in sex really again because I wasn't feeling that same lust with another.
But given time and open communication I did learn and find a very true love in my now husband.
From the start of the intimacy between us there was always open and plan conversations as my husband has emotional and health related ED.
I was always suportive (in more ways then one ... lol) and we had a very healthy and passionate life in that department.
However now as I decline in strength and energy with all this daily pain I struggle with my part of supporting and taking part in the activities needed the satisfy a still very sexual man.
In addition my own self esteem is not good and my poor husband who has no idea when I may have the energy is left feeling like I have lost intrest in him sexually because HE is to much effort.
I feel notable for him and me.

Apr 23, 2016 11:43 AM

I feel horrible for him and for myself. It seems like such a large loss to learn how to have true loving intimacy only too have it slippy away.

Apr 23, 2016 6:31 PM

Thank you for sharing with us, I really think this is such an important subject!

Apr 23, 2016 8:54 PM

JahMac this is an important topic that probably everyone here has to some extent.

I have always been over active, very overactive, sexually until I was 36 (now 47). The pain started along with multiple other things along with absolutely no interest in sex. It has been difficult to say the least.

My husband (who is actually my ex-husband) and I have been through everything from heartache to his infidelity and then some. We have had discussions on this and while not speaking for him I can tell you he has expressed that for him sex is losing its spark because he knows how much it hurts me. He says how can I enjoy it when I know you are in pain the whole time?

Kamel can you share the name of the book?

Apr 24, 2016 12:39 AM

Thanks for sharing Shammagren, "How can I enjoy it when I know you're in pain the whole time" having talked with a few friends from pain management and also when I was in my group therapy after rehab, this sentance came up A LOT. It's still difficult, when you try to let your partner know that he isn't going to cause you any pain(the times when you genuinely don't have pain) it causes them to feel a whole host of feelings as they will often feel like you're trying to make them happy by saying you're ok, they feel guilty. It's a far bigger "Thing"...... So Complex, yet communication is so important but often is the first thing to go because we can feel awkward.

Apr 24, 2016 3:20 PM

Shammagren
Safe Sexual intimacy and spinal cord injury? it is about 15 pages long blue in color. He gave it to me is why I said talk to your Neurologist. Not sure where he got it from.

Apr 24, 2016 4:23 PM

I've had no sex drive for years. Now add in pain and gah! I feel for my Hubby who is the love of my life and very supportive. Having been sexually abused and raped in my past is probably what robbed my sex drive and maybe medication for seizures. I try to when I can for Hubby but he feels so bad because he knows I make myself and doesn't want me to have to feel that way. Poor guy.

Apr 24, 2016 5:05 PM

Thanks kamel my neurologist dismissed me as inoperable learn to deal with it and no bending, lifting or twisting. I did a quick search online and found everything from descriptions to videos of fully dressed people showing examples of positions.

Apr 24, 2016 5:14 PM

Our way is a bit off the "normal" path...

We are polyamorous, so when I just can't say go to a movie I'll suggest He take so and so.

As far as sex, my stamina is SHOT....COPD...and He has ED to boot from meds and they left Him in afib for an entire day.

So, on the rare occasions we do it with me on my side. Yayyy

Other times we can use other methods...like electrics..it is an e-stim unit placed on either partners intimate parts also has insertable metal attachments....yummmm

If you have those little machines that chiropactors and massage therapists use to stick on your back and dull the pain..I suggest trying it...works way better than a hitachi.

There are also sitting thrones that are great if He lays on His back and you squat over His face.

Side note....we are a Male/female pansexual primary couple with other boyfriends and girls...please feel free to swap genders around

Apr 24, 2016 6:13 PM

Gibber, I feel for your situation it is so difficult to find that emotional/intimacy balance.
No on likes to feel like they are making their loved one uncomfortable for their own pleasure.
While at the same time no one wants to feel like their loved one is suffering because of them.
This is something my husband and I talk about and we both try to change the way we look at intimacy.
We choose to get pleasure FROM giving.
It is much like the mindset change we all go thru to learn to leave in pain everyday because we simply have to.

Apr 24, 2016 6:29 PM

That's great advice Missmisery thank you.

Apr 24, 2016 9:00 PM

๐Ÿ”บShammagren
Humm sounds like doc has issues. I have a 4/8# limit they did my FCE n said I was too unstable on my feet and short of it same here. Might look at one of the medical journal s for more advice ? Tell the doc that this is a topic that needs to be addressed before you try something new and exciting, challenging and get hurt doing it.

Apr 25, 2016 1:12 AM

Thanks missmisery,great Advice, finding the right balance

Apr 25, 2016 6:28 PM

Again, thank you so far to all who have contributed to this post, it's not an easy post to discuss, but it's good to push your comfort zones,especially when we all have chronic pain, despite what diagnosis we have, we all experience this and probably wonder, wanna ask questions. Hopefully others who read will feel they can contribute too if they wish, as adults together it's good to be able to ask me hints we may not talk about with even closer friends or other family.๐Ÿ˜Š

Apr 26, 2016 11:33 AM

Me Hints= Us Things !!!

Apr 27, 2016 4:47 AM

Thanks for starting this discussion.
A few years ago I felt like my husband was going die in the middle of our intimacy. So our time for each other became less frequent. But now its been six months.
My depression, firomyalgia, arthritis and planar faciatis make it very difficult. But his depression chronic pancreantitis and servere back pain makes intimacy nearly impossible.
My occaisonal good days do not match his good days. We are 51yrs old and this pain makes it terrible.

May 20, 2016 9:06 PM

Does anyone else feel like they want to share? I know this is a topic which may be hard to talk about. For me it's so hard being quadriplegic , it took me awhile to understand my body, my new 'me'
I won't lie, I get upset and wonder will I have another partner who is there for 'me' and fully accepting of my disability, who doesn't see just my wheelchair. This way of thinking is natural, but it's so important to remember all that we accomplish daily and for me, my last partner (post injury) made me feel like I was me again,and not just a disabled person first!! There is so much more to me,yourselves than disability, ill health, and being reminded of that by someone who loves/cares for you is one of the best rehabilitations you can have!!!

May 21, 2016 4:22 PM

A subject everyone thinks about but most are to embarrassed to talk about.

It is rough when I can get my mind set that I want to it seems like my meds take the physical wanting away. Then of course the pain aspect of how to do it without pain or limited pain. I don't remember the last time I had sex with my husband. Hell I don't even remember the last time we just had intimacy. I don't remember the last time I was hugged without saying owww. The last time he tried to curl up with me I moved his hand multiple times then had to move because being in one position hurts me. Ughhhhh.

May 22, 2016 1:35 AM

That's heartbreaking. People need intimacy. I can't imagine how much of a strain that is on your relationship. Here's a mental hug for you. Let's hope for a miracle.
Nanci

May 24, 2016 2:07 AM

I've been away from the forums for a while, symptoms have gotten worse but still no diagnosis.

Recently, I've come to the edge of a potential relationship, but am encountering some major difficulties in terms of my symptoms stopping the relationship from moving forward. He knows I'm consistently in pain, and he's gentle, but I still won't let him touch me. Part of it is pain, but part of it is PTSD and I don't know how to move past it.

May 24, 2016 8:35 AM

It's not something you just move past. Or get over. Have you considered therapy? I spent years in therapy for ptst. They can teach you some very helpful coping techniques. Sorry you struggle too.

May 26, 2016 12:43 PM

It is difficult, and I can relate to everything I have read on this topic. Dry eye, dry nose, horrible dry mouth, dry skin & dry you-know-what are not conducive to good sex. We have addressed some of this with him going on a mission for Moisture at the RX. He went back again and again while we tried more product. We about laughed ourselves silly over some of the stuff being sold. Just as he was ready to balk at going back to RX, we found "Good Clean Love" a startup company here in the northwest. All natural, originally made in the woman's kitchen from her garden herbs, if you are are interested.
I will say on occasion we somehow hit the big nerve to my
leg which is very unpleasant and starts a big pain cycle for me. I realize that it is important in a marriage for your partner to have intimacy, I try my best to make it happen. To be honest it is not anyway near as often, but i am not the way I was any more

May 26, 2016 1:21 PM

Coconut oil works wonders. *Blushing

May 27, 2016 2:36 AM

Thanks for this post , me and my partner are having a hard time dealing with the effects of my fibromyalgia and dengentive disc disease as I'm in pain constantly..... He's scared to even come near me in case he hurts me and I'm getting annoyed because of the lack of intimacy *sigh
I have tried to explain to him I am in pain no matter what he does or doesn't do and I want to enjoy a good *sex life but he just can't seem to wrap his head around it :(
I had a hysterectomy 3 and half years ago at the age of 33 and was hoping that would give us the no worries kind of love life but seems my body had other ideas lol ..... I do think communication is key in these sorts of topics and I'm lucky in the fact me and my partner talk and laugh all the time

May 30, 2016 2:22 PM

Being in pain for so many years and being on the medication I'm on has taken away my Desire to even be bothered with sex. I don't get the urge to even seek out that "release" that I used to so enjoy. It must be at least 10 years since I've even had sex.. LOL!!! That being said, the other day I woke up (I don't remember dreaming) and actually woke to having an orgasm.. Hmmm, what a way to wake up!!!๐Ÿ˜ณ I have no idea where that came from but I'm pretty sure that'll be the last for another 10 years.. Oh well, such is life.

Jun 04, 2016 11:36 PM

It makes us realise how we all have very similar circumstances but also our experiences can be quite different, or how we feel about intimacy and relationships.

Jun 06, 2016 5:13 AM

Crazy Red maybe you and your partner should go back to basics and do more foreplay instead. This could build his confidence and there's no pressure to make physical love until your both ready again. Hope things work out.

Jul 08, 2016 8:19 PM

Here you Scrossy....๐Ÿ‘๐Ÿพ๐Ÿ‘๐Ÿพ

Jul 09, 2016 12:14 AM

Okay here is an idea if you are seeking to be intimate with your partner, masterbate in front of each other, help each other, talk sexy, lightly caress, if it goes deeper or you both want more .. there ya go, at least you are touching, talking,still be intimate. Much love and many "O's" nnn so forth....

Jul 09, 2016 2:04 PM

Okay, I know this reply was right out there...I hope you all are okay today.if that post offended anyone by that word..it surely was not meant to. Love and Blessings,Terri

Jul 09, 2016 6:09 PM

I doubt it Terri....We're all using correct 'terminology' so no one should care, it's a natural part of most of our lives xx

Jul 12, 2016 8:43 PM

๐Ÿ˜Š

Nov 27, 2016 4:58 PM

Stagefrightgirl

Ready to start relieving your pain?

Join Community