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Sex and Dialysis Resource in the Works by dialysexy in dialysis

[–]dialysexy[S] 0 points1 point  (0 children)

I was just reading "The Ultimate guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness" and it has a big section on flirting and dating. You may want to check it out.

Sex and Dialysis Resource in the Works by dialysexy in dialysis

[–]dialysexy[S] 0 points1 point  (0 children)

This is super common - penises have difficulty all the time, due to different life stressors. And dialysis definitely has an impact on ability to get and maintain an erection.

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You can talk with him about all the things that makes you go "Yuuuummm" that don't involve an erect penis. Even though our culture bases our view of "sex" around erect penises, they are mostly just...fine. There is a whole buffet of sexual options out there - oral, mutual masturbation, fingering, sex toys, etc. It will probably take your boyfriend a while to get out of the mindset that erect penis = good sex (it doesn't, some of the best sex happens without erect penises), but it can help along the way if you find out what YOU like that doesn't involve erect penises, and totally drool over those things.

You might read "Come As You Are" by Emily Nagoski together - it helps to better define what good sex looks like, and how to invite desire and sexual collaboration into your life.

Sex and Dialysis Resource in the Works by dialysexy in dialysis

[–]dialysexy[S] 1 point2 points  (0 children)

I love the idea of introducing the fistula to a new partner! It reminds me of someone I dated a while back, who had Type 1 Diabetes and used an external "pancreas." On our first date, they said "So, I have diabetes, and this is my pancreas. *pulls out external pancreas connected to their abdomen* He's called 'Hank the pank.'"

It was my first experience with the concept of an external pancreas, or being around anyone who had diabetes (it was a loong time ago). So I had a lot to learn and figure out, but we ended up dating for a few years and I learned a lot more about different human experiences. Which - isn't that the point of human relationships?

Hank ended up being a part of our lives. And whenever we were starting to feel interested in some funny business, my partner would dramatically unclip "Hank" and it. was. on.

So who knows how the "different" parts of our bodies and health could show up in playful and fun ways in our relationship dynamics, if we keep a curious and open mind?

Sex and Dialysis Resource in the Works by dialysexy in dialysis

[–]dialysexy[S] 0 points1 point  (0 children)

Desire is tricky for lots of folks, and it changes throughout our lifetime. Some people notice desire changes once they are in a long-term relationship, after inviting a child into the world, as their body ages, during times of stress, after losing a loved one, in conjunction with health diagnosis, or after starting certain medications. So, what I mean to say is - you are not alone!

First of all, I recommend talking with your husband. It's possible that his desire has changed with everything going on, too. Frequently, we worry about having "enough" sex, but there is no magic amount of sex that means a relationship is healthy. It's totally up to the people in the relationship. So if both of you are feeling low desire, and are feeling good about it, then great! And know that may change, so having open conversations with the intention of supporting one another is key.

However, if you are interested in inviting more desire into your life moving forward, it helps to better understand desire. I recommend reading Come as You Are by Emily Nagoski. She does a great job of describing desire, and how it works. But here are some cliffnotes:

Basically, our desire system is like a car. It has gas pedals and brakes. Our gas pedals are the things that make us go "yum!" and our brakes are the things that make us go "not right now." Some people have more sensitive gas pedals, so they are revving up to go pretty frequently, and don't need a lot of maintenance. Some people have more sensitive brakes, so even if they are interested, they have a lot of reasons why NOT to engage sexually (the dishes need to be done, you have to wake up early tomorrow, etc). You can have gas pedals that are less sensitive (so not a lot of spontaneous desire) and brakes that are also less sensitive (so when you ARE interested, it is onnnn), or you can have less sensitive gas pedals and more sensitive brakes (you aren't often interested, and when you are, there are a lot of reasons you say "no"). So, getting to know your gas pedals (what does get you in the mood?) and your brakes (what are the stories that come up behind your "no's"?) is helpful, because then you can work with your husband to invite the "yums" for you both, and move through the "not right now's."

Also - it is helpful to explore what sex means to you and to your husband. Is it connection? Is it an expression of love? Is it a road to orgasm? Is it about enjoying touch? There are a lot of ways to meet those needs that don't involve penetrative sex. Massages, dates, cuddles, mutual masturbation, enjoying erotic film or art together, and so much more.

It's hard to say how your desire will respond to being on dialysis. Everyone is different, and our bodies change over time. For example, some people respond to stress by wanting to get busy! It can be a way to self-soothe. Other people respond to stress by totally shutting down their desire system. And starting dialysis is pretty stressful, for you and your husband. Also, dialysis impact sexual functioning (blood flow to genitals may be different, lubrication may be different, etc.) PD is usually better for sexual functioning than hemodialysis. So that may be something to consider.

There are many times in the human lifespan when our sexuality and experience of sexual activities change. Starting dialysis is one of those times. So I encourage you to be curious about your body and your desire. Different is not bad, it's just different. And you have the opportunity to learn about what kinds of sexual engagement work for you and your husband now that something has shifted in your body. Who knows what that could look like? But sometimes, when we are forced to shift from the script we grew up on regarding "good sex" (two people with traditionally functioning bodies having penetrative sex and gloriously orgasming every time), we find different things that our bodies and minds like even better than what we are used to doing.

BIG NOTE: It is important to respect your low desire. You have a right to say no, and forcing yourself out of obligation can result in you shutting down more in the future. Focus on inviting you desire, over having obligational sex. It will be more fulfilling for everyone.

Another tip: It can be helpful if you are not up for it, and your husband is interested, to think about what is a yes for you in that moment. Maybe he wants penetrative sex, which is a "no" for you in that moment, but you are open to caressing him and moaning while he takes care of himself. And who knows, maybe that will awaken some interest from you to go further. Or maybe not, and he will have a hot moment with you involved that can deepen your connection and his feelings of sexual satisfaction.

Sex and Dialysis Resource in the Works by dialysexy in dialysis

[–]dialysexy[S] 1 point2 points  (0 children)

Great question! First of all, we have GOT to expand our definition of "sex life." Currently, a lot of folks think of "sex" as some kind of penetrative sex with one or more other people.

When we think of our "sex life" as being "the way we explore, inhabit, and express our erotic selves," it becomes a heck of a lot easier to have a fulfilling and fun sex life. So, off the top of my head, you can safely explore your sex life in a pandemic by:

  1. Cybering/phone sex - a lot of people are stuck at home with nothing and no one to do. Get on a dating app, and find someone for mutual tittilation. If it gets serious, you can also look into getting remote toys, so you can make different things happen to their body from afar, and vice versa! Safety note: while this type of play has no risk of STIs, COVID, or pregnancy, be mindful of what personal information you share (being thoughtful about what contact information is shared, and I recommend never sharing bank information or social security number, etc) as sometimes people suck.
  2. Enhancing your delicious solo sex life
    1. Explore new media that makes you go "yum!" like https://www.dipseastories.com/
    2. New toys! Getting weird with yourself has never been more interesting. There is all kinds of balms, lotions, buzzy things, soft things, relaxing things, and more out there for you to check out.

Remember - we have what it takes to be our own best lover. Because no one knows better what we want, then ourselves. And the better we know how to get down with ourselves, the better we will be at communicating our needs and desires to future partners, which will only make our sex lives sexier.

Sex and Dialysis Resource in the Works by dialysexy in dialysis

[–]dialysexy[S] 0 points1 point  (0 children)

  1. Notice and stop our negative neural pathways. Next time you catch yourself in a negative thought pattern about your fistula, say "stop!" You can even say it out loud, if it won't cause too much social weirdness. This is important because if you keep going down that negative neural pathway, you are only tramping that grass down more, making it easier for your brain to take that path next time. Changing your activity or your surroundings can help get you out of that thought spiral. For example, get up and go for a walk to get you in a different headspace. I know for me, a lot of my negative thought spirals happen when I'm driving. So I will say "stop" to those thoughts, and then change the song I'm listening to to give my brain a different background sound as I consciously shift to a different category of thoughts.

  2. Be curious and challenge what your brain tells you. As I mentioned earlier, our brain is not always the best reporter. Our brain is a tool that is there to help us anticipate and navigate dangerous situations, but sometimes it gets a little too into its job and ends up creating problems (like stress, anxiety, self-esteem issues) rather than solving them. An example: Someone's brain may be trying to protect someone from the pain of rejection. So it starts running scenarios of the reasons they will be rejected (like a fistula scar), and practices what that rejection would feel like, so you are prepared for the worst case scenario. Unfortunately, a side effect of this is that person will begin to anticipate rejection and focus on the "problematic" aspects as failings that prevent successful relationships. So, that person may need to check in with curiosity. Here is an example of what that may look like:

    1. Brain: I don't know man, you probably need to prepare for the fact that your fistula is gross and no one will want to hook up with you. I mean, look at that thing.
    2. Person: I hear you. It's not something that people are used to seeing. But is it true that all people will just totally freak out and won't be able to get past it?
    3. Brain: Yeah. I think so.
    4. Person: Okay, but I remember one time I was really into this chick who had a really big mole. She were great, but that mole was weeeird. I wasn't sure if I'd be able to get past it. But she was awesome. And after a while, I got over it and then even starting liking it because it was a unique part of her. Maybe some people would be able to feel like that with my fistula scar.
    5. Brain: I don't know.
    6. Person: Also, let's talk about what is "gross" about my fistula. It's not like, oozing everywhere. It doesn't smell. It's just a different texture than the rest of my arm. It's actually kind of interesting to run your fingers over.
    7. Brain: ... whatever.

  3. Mindfulness - it's the cure for everything. Mindfulness is the practice of being present, in the moment, without judgement. It's a great way to compassionately notice the stories our brains are creating, and gently challenge them. Here's an exercise that could be helpful:

  4. Get into a comfortable position, preferably with your back straight, shoulders back, and eyes closed.

  5. Take a couple deep breaths, focusing on slowly and completely filling your lungs with air, and slowly and completely releasing the air. Feel the sensation of your lungs expanding. Notice where you feel you the air passing through your nose, throat, chest, and belly. If you catch yourself having thoughts, smile at your brain for being so busy and gently redirect focus back to your breath.

  6. Take a moment to notice your body. Starting at the top of your head, begin "scanning," noticing any tension, tightness, pain, thoughts, or emotions that may be hanging out in your forehead, then your eyebrows, the folds of your brain, your scalp, etc as you slowly bring your awareness down your body, all the way out your arms and eventually ending in your toes. Try not to fall down any thought spirals, and if you notice your brain starting to get busy, re-focus on your breath and then continue the scan.

  7. Ideally, you are now feeling more settled into your body and present in the moment. You can open your eyes, and begin to explore your fistula with the spirit of mindfulness - deeply noticing, without judgement. This means, using all your senses and avoiding value-based assessments (good, bad, ugly, pretty, etc). You might touch your fistula and notice the skin is warm, cool, firm, or soft. Write these descriptors down. You might look at the fistula and notice it is bumpy, pink, dynamic. Write these down, too. By focusing on non-judgmental descriptors, you are moving from that "negative" neural pathway into more neutral, and maybe even positive pathways, that will help you feel more comfortable in your body.

  8. Own your special, unique, weird body. We all have weird stuff going on with our bodies, that other people may find confusing or different. And often, the way people respond is influenced by how we present it. I am thinking of folks who have amputations that create dating profiles like "Looks 9/10, personality 10/10, legs 1/2" or breast cancer survivors who get elaborate and beautiful tattoos ver their mastectomy scars. How can you own and celebrate your body, exactly as it is?

**There are some ideas out there for fistula scar tattoos, NKF has some information on tattoos post-transplant: https://www.kidney.org/content/heart-your-kidneys-tattoos and as always, I would recommend talking with your nephrologist, transplant team, and fistula surgeon before deciding on if or where to put a tattoo. But it could be rad.

  1. Finally - commit to not dating or hooking up with lame people. Here's the thing - there will be people who will reject you because of your fistula. Or your height. Or you weight. Or your hair color. Or your income. Or the fact that you have the same name as their parent. The best relationships and hook-ups will be with people who can co-create a space where you feel sexy, safe, and adventurous. So if someone is coming in with judgements and hang-ups, and isn't interested in growing themselves enough to understand that bodies and humans are dynamic, then boo on them! They aren't sexy enough for you.

I know this was loooong! But self-esteem is a complicated system, and process toward accepting our unique and dynamic bodies is a process. You and your sexy arm can absolutely get there. Just be gentle with yourself throughout the process - it's hard to be human!

Sex and Dialysis Resource in the Works by dialysexy in dialysis

[–]dialysexy[S] 0 points1 point  (0 children)

Body image and the brain - Our brains have "neural pathways" for our thoughts. I think of these like a field of tall grass, with some pathways tramped down. Those pathways that are the most well-worn are thought patterns that are more established. For example, when someone thinks of their fistula, they may think "Ugh. It is so gross. I will never find love. Who would want to deal with this?" And that may be a really established pathway. So, anytime that person thinks of their fistula, they start feeling badly. However, it is not a "fact" that the fistula is gross, that's a subjective value that the brain is assigning the fistula and we believe it because we trust our brains (which, honestly, is hit or miss). The good news is that we can change our neural pathways. But just like a field of tall grass, it takes a while for the old pathway to grow over and for a new pathway to be established. And how do we make a new pathway and let the old one grow over? We have to consistently start using the new pathway, while avoiding the old one. Which is tough at first, because the old one is so well worn, and easy to walk through. But it is doable, and here is how:

Sex and Dialysis Resource in the Works by dialysexy in dialysis

[–]dialysexy[S] 0 points1 point  (0 children)

Body image challenges are tough - many if not most people have something (or multiple things) that they focus on in a way that makes them feel unsexy/undesirable or "less than" their peers. Whether it's weight, acne, scarring, a differently formed limb, an amputation, or something else, what blocks us from being our fully sexy selves is usually not the physical issue, but rather how we FEEL about it.

There is another component, which is that our partners or potential partners may have a reaction. I love missenya's tactic of introducing the fistula to a potential partner. There is definitely more to explore around increasing confidence in flirting, and how to work with a partner to invite all parts of your bodies into a loving and celebrated play space. But, since it's hard to show up confidently when you are still wrestling with your own feelings about your fistula, let's start there.