Sex and IC, the real deal
We go through rounds and rounds of doctors often suffer needlessly for years, experience negative side affects to drugs, may be limited in what we eat, go to the washroom more often than what is “normal”, and endure having all manner of devices and tubes put into our bladders. But nothing - and I mean nothing - seems to instil such a level of fear into most ICers as the topic of sex.
Why? It’s often because of the pain of sex with IC, and the anticipation of this type of pain. For both men and women with IC sex can be incredibly painful, if not down right impossible. The act of penetration causes intense pain deep into the cervix and pelvic region. Or it may be as simple as light external gentle touch or vaginal/penile stimulation; whatever brings it on, the pain is real. Too real it seems at times. For some patients other medical conditions overlap with their IC to make sex even more difficult. These can include vulvodynia, endometriosis, irritable bowel syndrome (IBS), myofascial pain, fibromyalgia, lower back pain (a somewhat common, and not entirely understood IC symptom), and pelvic muscle issues. In this article we are going to focus on pain related to IC and sex, but a great deal of the information put forth can be applied to these and other medical conditions as well.
For the majority of people sex is something that we desire, perhaps even crave. We find immense pleasure in the act of making love (insert any other name for it that you prefer here, many have four letters). As rudimentary as it sounds sex was not intended so much as a means of pleasure - originally when our species came along - but as a means of procreation and continuation of the human race. It is theorized that the fantastic feelings we experience during sex is a natural bait so to speak, put in place to engage us in the act of sex and therefore continue the population of the earth. Well these days the earth isn’t exactly suffering from a population shortage, and the majority of the time when you choose to have sex it is for the purpose of pleasure. It’s important to look at this fact because it essentially means that most of our lovemaking is done as recreational activity, not a requirement. Desired but not required.
Just as we all long for love, we long for physical intimacy – touching, cuddling, kissing, petting, and other forms of skin on skin contact. Touch is healing, it can be arousing, it may be calming, and it can also be painful. Such is often the case when we are discussing IC and touch that evolves the genital or sexual penetration. Some people find that the pain is relatively minor during the act, but that it abounds following a romantic encounter, leaving them in pain for hours or days, often exuberating IC symptoms to the point of a full-fledged flare. For others the pain starts when the stimulation starts, even mild penile or vulvar/clitoral stimulation may trigger a response of pain. Orgasm may be the worst moment for others, and this may occur as a result of the muscle contractions involved in climaxing, as many ICers have problems with their pelvic floor muscles such as the condition Pelvic Floor Dysfunction, or PFD .
Why would you not put your hand down on a hot stove element? Or sit on broken glass? This may sound absurd but it is to show that we instinctually know (from a very early age) that pain is not a pleasant experience (for most people that is, I won’t go into S&M at the moment), we go out of our way to avoid pain and rightfully so. Yet what happens when one of the most basic aspects of being a human being and one of the most negative sensations we can experience collide? You get sex with IC.
First things first, please, whatever you do, do not blame yourself for any sexual “shortcomings” or limits, you did not bring IC upon yourself and chances are you are doing everything in your power to combat it. In order to have a healthy sexual outlook you must first have self-respect for your own body. Yes, sometimes our bladders drive us to the point of insanity, and the affects of IC can have a phenomenal impact on our daily lives, but the moment you start to beat yourself up because of your health you are doing more harm than good to your bladder, and your psyche.
The obvious overlapping aspects of love and sex cannot be ignored here. Many ICers develop a mentality of not feeling worthy for some reason. This may be compounded by negative experiences they have had with their partner(s) regarding their health. Please take a good long look in the mirror and tell yourself that you “love you”, I’m serious. You need to hear these words, and you need to begin to realize that you are as worthy of everything in life as everyone else is. Your bladder and your heart are many inches away from each other yet they get so tangled together that many ICers shy away from not only sex but romantic/loving relationships all together. What an amazing shame, to give up such a vital part of existence (loving relationships) all because of your bladder.
Trust me, before you start typing strongly worded letters, I’ve been there. I went through my own dark period of isolation and in a way self-loathing. I shied away from men and did not engage in any form of sex. I even began to resent healthy people around me who were having sex. But one day, something snapped in my mind and I began to se that I wasting my time (even if I felt like crap) but not being positive when it came to relationships, and yes even to sex.
It can take a long time to climb out of the black abyss of loneliness and isolation, the continual pain and IC symptoms you experience almost seem to work against your mental efforts to be positive, like swimming into the oncoming tide. Whether you are single or with a partner/spouse, this realization of self-worth needs to be fostered by love and care, both from yourself and the person you are with. Don’t hate yourself because of your IC; show IC is hasn’t won by trying it being open to the possibility of sexual encounters and relationships.
If you are single (I’ve been there) I know what a humungous hurdle it can be to have to explain to new people what IC is and why, perhaps, you are limited in some respects in what you are able to do sexually. The strongest piece of advice I can give you here is to be direct, be frank and don’t be afraid to let a little emotion through. Use straightforward explanations at first, and ask your audience if he/she has any questions, I guarantee you they will.
A lot of single ICer fear that no one could ever love them the way they are, they see themselves as broken or dysfunctional in some way. It’s not true. That is a brutal lie, which will wreak havoc on your self-esteem. Yes, you have issues with your bladder, but you are still entirely whole! I mean if you were born blind, or paralyzed would you hate/resent yourself with such hostility? Likely not - but just like medical conditions that one can be born with IC is something that you have no control over developing. Birth, accident, “natural” occurrence, whatever brought on your physical pain it is not a reason to loath yourself, or blame yourself for things that are beyond your control.
The fear of rejection. There is this IC mentality of woe-is-me; no one wants me any more, but it’s not true. No man (or woman) ever lists a healthy bladder among the attributes they are seeking in a mate. “Yes I’d go for a tall blond, with a great sense of humour, who likes long walks - oh and of course she has to have a fully functional bladder”. Really the likelihood of that ever being thought or said is next to nil. So why is it then that if we wear our bladders on our sleeves, we cuff those very same proverbial sleeves up?
You are not your bladder, in other words it might hurt to have sex but you can still be whole a whole person. List all the great things abut yourself, anything you can think of that you feel would be an attribute in your favour. Now weigh that list against your bladder and IC. Hmm, the clear winner is you as a person, not your health. Yes obviously health plays a big role in ours life, and IC can touch just about every aspect of our lives. But at the fundamental core of being, “you”, is the person that you have always been, no less wonderful or special or important.
The plain honest truth is that yes, there are people out there who will not respond well to your IC, they my be cruel or make you feel unimportant. Their misguided fear of your health is expressed in negative and sometimes cruel ways. Don’t tolerate it. Stand-up for yourself and tell the person that they are being petty and small, not to mention hurtful. Explain that if their attitude does not change the relationship is over (or just end it there, it’s your call). Because you know what? IC is likely going to be a part of your life to some degree for a long time to come, and you do not want to go through every day feeling scorned and belittled or neglected or abused because of your health. You deserve better and deep down inside you know that.
Okay, lets decide to come to a point where no matter what kind of experiences you have had in the past, you are going to give the idea of sex and intimacy with IC a clean slate. Let go of the past and embrace the future. Literally take a deep breath and make a conscious choice to be willing to try new things or new ways of handling sex.
The most vital element to making sex positive with IC (or in any situation for that matter) is communication. I know that opening up; even with someone you may have know/loved for a very long time can be extremely hard, but the more that you talk, the more your partner can start to understand what you are going through. Remember that as much as you may be afraid of feeling pain, he or she may also be worried about causing you any pain. Tell you partner when something hurts and when it is more tolerable for you. Listen to what you partner says with just as much attention and respect as you want them to give to your words. Sex involves them as well, and while you may be the focus of attention, they are still fifty percent of the sexual equation too. Reassure your partner that you know that he or she does not intentionally mean to cause you any discomfort or suffering, and that you love the way you two are able to discuss your sex life together in the open.
Weekend sex benders might be out the window but that doesn’t mean that sex needs to last for only a minute. Sex begins ages before the act of penetration occurs. Foreplay (literally play before sex) can be a godsend for people with physical challenges, especially IC. The entire body is littered with endogenous zones, and each person has their own “buttons” that are located in different spots. These spots are great stepping-stones on the road to sexual arousal. But even before the clothes hit the floor, if we are starting from sexual square one than let’s back up for a moment.
First of, you must try to relax, I know that sounds trite, but it’s true. The more you are afraid of the pain that sex might bring, the more you will tense up your muscles, become agitated or nervous and potentially even stop short of trying to have sex. Pain may happen, and you may have to stop this attempt (at least the penetration side of it), but fear will only cause you more pain because it is hurting you psychologically. No word of a lie, what I do is to tell myself (even if I know this is not in fact the case) that sex won’t hurt, that it will be a blast and that I know I am up for the challenge and the joy of love making. Instead of dreading the pain, and literally feeling beads of sweat drip down my face as the moment of penetration arrives I am calm and aroused, ready for whatever might happen. This approach may take time, and it might seem deceptive on some levels but it has helped me more than any other mental tactic I have tried. There is always some level of pain involved when I make love, and yes, some days I have to stop, but I have vowed that I will not throw in the sexual towel and resort to a sexless eternity. Even if weeks span between love making encounters, try to find ways to pleasure each other through foreplay (sans full blown sex), cuddling, and other erotic and romantic activities.
When you do decide that you are going to try making love go slow and stop or rest if need be. Keep the lines of communication open at all times, and remember that sex is supposed to be fun and wonderful. Before and after sex it is recommended that ICers void in order to reduce the risk or developing an UTI. Washing the perineum and genital area both before and after sex is another thing to highly consider in the battle against potential infection. If you are using condoms keep in mind that those with spermicidal jelly have been known to clause flares in both ICers and women with vulvodynia. Opt for condoms that don’t both your skin (some people are allergic to latex or may get a flare from it), and your bladder (this may take a little trial and error). Lube up to the hills, really, use a bottle of non-petroleum based lubrication each and every time you attempt sex (with penetration) if need be. A well-lubricated vagina helps to cut down on friction (and potentially pain) and allows for a more graceful entry (KY Jelly is a good, inexpensive brand of personal lubricants to start with).
If penetration in the main point of discomfort for you than try to get as aroused and ready to climax as possible before hand. Engage in sensual touching, kissing, massaging, rubbing, licking and oral sex (if possible for you). Consider using toys, dressing up, acting out role playing games, watching adult movies whatever helps both of you to get in the mood and very aroused. There is no right or wrong way to have sex with you partner, just what feels right for both of you. So if you want to dress up or use a vibrator why not do it?
When the time approaches for penetration decide (if you have not already done so) what position you are going to try to have sex in. Many women with IC find that woman on top (aka, female missionary) is the best position for them as they are able to control how much of their partner’s member is inside of them. Ask your partner to refrain from deep and/or hard pelvic thrusting and gently start by lowing and raising yourself on the penis. Do not feel the need to play porn star here, this is about what is comfortable for you! That means stopping if it hurts, trying different positions (both men and women with IC may find the spoon position a positive one to try), going at your own pace, and attempting to stay as relaxed as possible. The more aroused you both are beforehand the more likely you will be to climax in a short period of time (a key point if penetration hurts). If one of you reaches orgasm before the other, make sure that the second person is not left out! Be it sex with penetration, oral sex or otherwise help each other to both feel the magic and pleasure of reaching orgasm. That said reaching orgasm should not be the only goal that you have in mind! Sex is about intimacy, tenderness, sensuality, and caring for one another. If you feel happy (even blissful) and satisfied after all is said and done than the need for orgasm may decrease.
When you are both finished, take a while to cuddle and talk, recap the events you just shared and discuss how you are feeling. You may wish to apply a cold compress or ice (wrapped) to your vulvar area to help reduce the IC (and vulvodynia, if applicable) pain that may follow sex. Later that day (or the next morning!) record how you are feeling in your daily IC journal . If you have gone into a severe flare don’t blame yourself or your partner. As painful as it is, be proud of yourself for having the courage to try having sex with IC. If the flare persist and the medications you have on hand are not helping you much, see your doctor immediately, as you will want to rule out the risk of a urinary tract infection (UTI), and try to get some type of treatment to help manage your flare.
If things ended on a more positive note, don’t feel that you must do it again right away. Spacing a few days between sexual encounters can also help to cut down on sexual pain and post love making flares. No matter what happened, the most important thing is that you tried, and you have likely come a very long way on many levels in doing so. Keep your sexual journey with IC going (when possible), and remember that sex is not everything. It is important, but not as important as how you and your bladder both feel on the inside.