Interstitial Cystitis, Protocols

Sex and Relationships with Interstitial Cystitis

Today’s article is a guest post by the lovely Risa of Peach Talk, a blog focusing on sex and relationships with pelvic and vulval-vaginal pain. 

I got Risa along because she has some great tips and this is such an important topic for many sufferers out there.

On top of all the suffering IC brings, it can also truly destroy relationships and intimacy for many. I hope that some of Risa’s tips will help prevent this from happening.

How to talk to your partner about IC and/or other pelvic pain conditions

There is no “one size fits all” answer to this question. While there is no specific clean cut way to go about telling your loved one that you are dealing with a condition that causes pain, there are ways to make it easier.

Before I offer my tips, it’s important to consider talking to your spouse when you have their full attention. This means that if you choose to plan when you want to talk to your partner about your condition that you should consider when they’re the most available and avoid having the discussion when they may be stressed or tired. If you regularly talk before bed then that would likely be a good time to approach the topic, likewise if there is another time when you usually talk, or a time that you know would have a conducive atmosphere use it to your advantage! I know it’s easier said than done, but try to stay calm and relaxed, make some notes if you need to make sure you don’t leave anything out, or if you’re feeling nervous.

Here are some of the main ways I, and others have found to be the most useful when talking to a spouse about pelvic pain conditions.
Ask your spouse to come to a doctors appointment(s) with you so that they can hear what the doctor has to say, and ask any questions they might have to help them better understand.

Write a letter! Sometimes it’s easier to write things down when you have time to sit and really think about what you want to say. Consider starting a journal that you write to each other in.

Provide them with relevant literature, and take them on the journey with you by including them when you do your own research. Allow your spouse to learn alongside you so that they feel like they are helping you in some way. Many spouses have feelings of helplessness because there’s not always a lot they can do to help assuage your pain, and this is one way to combat that.

Suggest specific ways your spouse can help you with your treatment/support you. One example is the IC diet. It made my spouse feel good, and useful to help me find what foods I can safely eat and different ways to prepare them. Ask them for their cooperation/any suggestions they have when trying ways to make sex less painful.

Use examples your spouse can relate to when you need to convey how you feel. My spouse was on a very long work trip and almost passed out from not being able to urinate. It was a truly awful experience for him, but it offered him a glimpse into how I felt when my IC was at its worst, and my bladder felt like it was going to implode despite not being full. Being able to find ways to relate so that your spouse can identify with even a sliver of what you’re feeling can be VERY useful.

Don’t overthink it! You both might fumble a bit at first, but the more you communicate, even if it’s not the most successful it will get easier and you will find what works for you.

Being intimate when the pain is too much for penetrative sex

If your IC is really severe you may need to build up to penetrative sex by going back to the basics.

You may feel discouraged (I know I did!) but there are more ways than one to be intimate and sexual, including achieving orgasm without penetration.

I will preface by saying I was one of those people who didn’t think I was at all into anything other than penetrative sex, and like a lot of women I was self conscious. But, I make no exaggeration when I say oral sex saved my sex life, and I actually have my very caring spouse to thank for that. I was adamant that no, it was not going to help! He asked me if I would at the very least try, and lo and behold not only was it enjoyable, but it was my first window into a sex life without unbearable pain.

This is important for more reasons than just the obvious. If you associate pain with sex you will eventually anticipate pain before you’ve even started. This is a problem because if you unconsciously start to tense up your pelvic muscles it can create MORE pain and no one wants that!

It’s very important to ensure that you associate sex with pleasure, and to keep pain out of it as much as possible by only engaging in acts that don’t exacerbate pain and thus further issues. That is why it’s very important to work your way up to penetrative sex if need be.

Is oral sex the only option? Of course not! Masturbation, mutual masturbation, using an external vibrator, external rubbing of genitals, sensual massage, taking a bath together, sexting, and making out are just some of the options that are commonly referred to as “outercourse.”

You may have to get creative, and it may seem a little “old school,” but if you and your partner feel good it’s just one more step toward having penetrative sex.

It can also be beneficial to be intimate without the goal of orgasm to relieve any pressure of reaching a climax, and just to enjoy each other’s bodies! Do what you’re comfortable doing, but don’t be afraid to try new things!

6 Ways to maximize pleasure and minimize pain

#1 Urinate BEFORE and AFTER sex!

Why? When you have penetrative sex, your partners penis (or dildo) will exert pressure onto your bladder. **I encourage everyone to look at a diagram of where your pelvic organs are at, because it will give you a better understanding of just how close the bladder is to your uterus and therefore to the cervix and the vagina.**

Emptying your bladder to the best of your ability will help to decrease the pressure and will give less cause for hypersensitivity. In other words, if you have sex with a full bladder not only will you have that pressure, but also the pressure being exerted upon your bladder. Imagine poking a full water balloon with two fingers repeatedly (hurts to think about, I know!) but it really helps to visualize what your bladder is going through, and why emptying your bladder before intercourse is so important. It is OKAY to need to stop sex to urinate! Having sex through the pain will only make things worse, and your partner should understand!

#2 Use lubricant/personal moisturizer to reduce friction.

Put down the KY and step away! When you have interstitial cystitis the last thing you want anywhere near you is chemical laden lubricant.

Why? Because not only can it cause pain and discomfort to your vagina and vulva, it can bother that extra sensitive urethra.

This also applies to condoms. Please take a look at the condoms you’re currently using and check out the ingredients. Pre-lubed condoms will usually be chemical laden, and I’m sorry ladies, but you’ll have to forego any “fire and ice,” or any other sensation producing condoms. If you can, try to buy condoms that are not pre-lubed so that you have your choice of lubricant.

When buying a lubricant you want to purchase one that is first and foremost water based, free of parabens, fragrance, flavours, and non-staining. The upside is that these lubricants tend to feel a lot more like the lubricant our bodies naturally produce, and don’t leave gross sticky residue. There are a lot of great natural/water based lubricants on the market so do your research and find what you like!

If you’re using condoms, make sure that your lubricant is compatible!

Lastly, consider using NON-latex condoms. If you have a latex allergy it is essential to use an alternative, but for those of us who have IC (and other conditions) that often come with sensitivities, eliminating latex is an easy way to cross another potential irritant off the list. For further reference: https://peachtalk.wordpress.com/2016/10/31/condoms-and-vaginal-irritation/

#3 Not all sex positions are equal!

Changing your sex position can mean the difference between a world of hurt, or pleasure.

Like I touched on earlier, our bladders are very close to our vaginal canals and uterus which means that pressure is exerted upon it during penetrative sex. Many sex positions only compound this issue by not allowing for control of depth of penetration and/or have a more direct impact on the bladder.

The position that tends to be the least pain inducing for those with IC is a side lying (or spooning) position where your partner enters your vagina from behind. This position is less pain inducing compared to other positions by making it easier to control depth of penetration, and exerting less pressure on the bladder.

Furthermore, this position allows your partner to have easy access to use their hand for clitoral stimulation, which is necessary for many women to achieve orgasm.

#4 Vaginal Dilators and Pelvic Floor Therapy

Vaginal dilators are used for a variety of gynecological conditions including, you guessed it, interstitial cystitis!

Interstitial cystitis can often cause overly tight pelvic floor muscles, which are the group of muscles that envelope your pelvis, support your pelvic organs, and are involved in bladder and bowel function.

As the Interstitial Cystitis Association explains, “​ In patients who have IC or other pelvic pain conditions, these muscles may be tight or in spasm, have a combination of tightness and weakness, or have pain triggering spots or knots called “trigger points.”

Pain “referred” from internal organs, such as the bladder, may set off these muscle problems, but the muscle problems themselves can also set off bladder symptoms.” ​

In a nutshell, vaginal dilators are used to help stretch and lengthen the vaginal muscles to regain elasticity by teaching them to relax.

If you think overly tight muscles are a concern for you please bring this up with your gynecologist, or seek out a pelvic floor therapist certified in women’s health who can help advise you.

Vaginal dilators can be purchased online with instructions for at home therapy, and can be very useful to use before sex! There are many other techniques pelvic floor therapists can employ that can help to reduce pain and make sex a more pleasurable experience.
Reference: https://www.ichelp.org/diagnosis-treatment/treatments/physicaltherapy/

#5 Develop an “after sex” routine

My after sex routine consists of sitting in a shallow bath of clean hot water for 5-10 minutes, gently patting myself dry, and wearing loose clothing (if heading to bed). I’ve found that if I do this consistently after having sex I have less prolonged irritation.

Sometimes I’ll change it up and use a hot water bottle either placed on my pelvis or in between my legs.

If cold is more soothing I encourage you to use a cold pack or to sit in a shallow bath with cold water. If you don’t have a bathtub a sitz bath, or the use of a detachable shower head can be great alternatives.

The goal is for it to be a soothing and relaxing post coital ritual.

Side note: After sex, I would encourage you to refrain from washing your genitals with soap. You don’t need more than a washcloth and maybe mildly soapy water if you insist, but in general the vagina is self cleaning and soaps are another potential irritant. Please purchase your soaps wisely and keep the perfumes and chemicals to a minimum!
Reference: https://peachtalk.wordpress.com/2016/07/13/my-after-sex-routine/

Note from Layla: You may also find this article on hygiene hacks useful.

#6 Talk to your doctor about topical ointments/relaxants to use before sex

Those may be beneficial to reduce persistent pain, and bladder spasms that are not being resolved by other means.

Likely the most common ointment to recommend would be lidocaine. Lidocaine will numb the area and there are specific types of lidocaine that are made to be delivered internally to soothe the urethra.

If you use lidocaine for sex and you’re in a heterosexual relationship you’ll need to make sure your partner wears a condom so that he is unaffected. Likewise, if you’re in a non-cis/non-hetero relationship make sure your partner has a barrier if they will come into contact with the lidocaine.

If you’re suffering from pelvic floor muscle tension and/or bladder spasms (or nerve pain as a result of co conditions) you can discuss with your doctor the potential use of compounded muscle relaxants that can be inserted vaginally, as well as other medications to try to calm down the nerves in the genitals so that they will not flare during sex.

Closing Thoughts

Having sex through the pain will only compound the problem. Treating your IC via diet and with prescribed medications is essential. If you haven’t tried the diet give it a serious go.

Be clear in communicating with your partner about when they are hurting you, or if they need to adjust their body or their hand etc. Help guide your partner. Don’t be afraid to stop during sex, and discuss beforehand with your partner that you may need to stop altogether, or go back to foreplay or outercourse.

NEVER continue to have sex when it hurts. Not only is it reinforcing the association of pain with sex, it is also damaging to your relationship if you pretend it doesn’t hurt when it really does. Our partners can pick up on more than we realize, and it would feel pretty bad to know you were hurting your partner during a time that is supposed to be pleasurable, and they didn’t tell you. You would want to know if you were hurting your partner, right?

Extend them the courtesy of letting them know when pain arises. It feels a lot better for both people to be honest. Some spouses are more observant than others and some may truly not see through it when we grin and bear it. How can our partner adjust to our needs if they don’t know there’s a problem?

Please know that things will get better. I know it can feel like the world is falling apart, especially when your ability to do something that is such a big part of being with someone is compromised, but you will make it through!

Sometimes you have to cry and scream it out, but don’t give up hope and don’t lose sight of your goal. Consistency is key when trying any technique as it often takes time to break the cycle of pain and to get IC under control. You can achieve sex that is pleasurable and it will be worth the process. You might even end up with a better sex life than before your symptoms started! Think of it like sex boot camp; you’ll be put through your paces, but you’ll be a pro at the end!

I hope you enjoyed Risa’s guestpost – feel free to share your experiences and questions in the comments!

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4 Comments

  • Reply

    S.R. Karfelt

    July 26, 2018

    Hey Layla, Thank you for ‘going there’ and sharing!

  • Reply

    Candice SanPietro

    July 31, 2018

    The LUTS clinic has exceptional information…Dr Malone-lee has done 20 years of documented research out of this London based program that has successfully treated recurrent UTI’s and their symptoms such as IC. Its worth looking at in my opinion and has helped me tremendously over the past 2 weeks to get a handle n this after suffering for 2 years. I have an article worth reading that his team published in 2017 titled “Recalcitrant chronic bladder pain and recurrent cystitis but negative urinalysis: What should we do?” I am happy to share it as well as several of his notes while treating many many women with great success. Granted his program is located in England however, he has been VERY willing to share with several of us.

  • Reply

    Candice SanPietro

    July 31, 2018

    The LUTS clinic has exceptional information…Dr Malone-lee has done 20 years of documented research out of this London based program that has successfully treated recurrent UTI’s and their symptoms such as IC. Its worth looking at in my opinion and has helped me tremendously over the past 2 weeks to get a handle n this after suffering for 2 years. I have an article worth reading that his team published in 2017 titled “Recalcitrant chronic bladder pain and recurrent cystitis but negative urinalysis: What should we do?” I am happy to share it as well as several of his notes while treating many many women with great success. Granted his program is located in England however, he has been VERY willing to help by offering well documented information with several of us.

    • Reply

      Layla

      July 31, 2018

      Hi Candice, thanks for sharing – I’m quite familiar with his work already and have based several posts on it (talking about outdated testing and hidden infections). It still seems to be quite hard for people to find doctors willing to treat people based on his protocols. However, there are natural antimicrobials available for use, which is what I use for my clients based on Malone-lee’s research. One issue I see with long-term antibiotics is that they affect the whole microbiome so I’d wonder what the long-term outcome for the gut would be. I have also spoken to some people who did not have success with the long-term antibiotics. Saying that though, I do think he’s great and doing so much for people and I’d definitely encourage everyone who has the chance to go see him.

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