Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
sickmachine
I'm almost 21 years old and was diagnosed with IC almost three years ago. At first, things were very difficult, but in time my sadness generally dissipated and I had grown very accustom to trying my hardest to "tough it out" while feeling any pain, which is worse some days than it is others.
I've tried an extensive list of things to ease the pain including the IC diet (three months without any results), myofascial release therapy (nine months with two separate therapists which actually did help to an extent when I was treating it vigorously through this, unfortunately the visits have become costly due to a change in my insurance and I've had to stop), elmiron and amitriptyline (using both drugs simultaneously for several months, didn't notice much of a change aside from growing more tired and sluggish), and valium vaginal suppositories (which generally work well, but put me straight to sleep and aren't very convenient day-to-day where I can't drive on them, work, school, etc), on top of countless visits to specialists, ultrasounds, a cystoscopy and a laparoscopy, truly an endless amount of things.
While I have learned to live with the pain, I have had a significantly harder time dealing with the fact that trying to have a normal relationship/sex life with IC seems virtually impossible. Intercourse is the most excruciatingly painful part of the pain that I feel, so obviously this is something that I have to keep my distance from. But as a young woman in my twenties, I have really let my IC takeover most aspects of my life, especially in terms of romantic/sexual relationships.
In my last relationship, I was with a man for two years who I was with when I had initially learned of my diagnosis, and the relationship really went downhill from there. Although having an intimate relationship was something that I would have killed for, he took the absence in our sex life very personally and acted out negatively against me, whether it had been mentally or physically.
I am very much over our relationship, but I find it difficult to detach myself from the words that were spit at me in his fits of rage about my condition and our sex life, where I was repeatedly told that he was the only person that would "put up" with being with someone who was unable to go through with intercourse and I would always remain alone and dysfunctional.
I've been out of this relationship for a year and I have let these words ring over and over in my head since they were spoken. It's been an entire year and I have yet to even initiate any time of romantic or sexual relationship, being completely scared away by the mere idea of having to explain to someone that I have feelings for them, but will never be able to have sex with them at any point in our relationship and being rejected by this. I know that sex isn't everything in a relationship, but it's factored into the equation in such a great deal and I am terrified of investing any type of emotion into someone, having "the talk", and then having them discard me because in that aspect of my life, I am dysfunctional.
I have passed up so many opportunities to get to know people better or formulate relationships with them just because of the severity of my IC and intercourse and each time it gets harder and harder.
If anyone knows of any ways to better cope with IC or painful intercourse and or simply wants to share their experience or stories with me, any feedback would be greatly appreciated. I feel as though I'm missing out on such a crucial part of my life and I'm tired of feeling as if I'm chained to my chronic illness, and unfortunately enough, I know that there are other people out there that feel similarly.
(Also, if anyone has any information on hypnosis for chronic pain or intercourse related problems, please indulge me. This is something that's always appeared potentially promising to me but I am unsure of how to go about searching for the right person to carry out with this specific hypnosis.)
I know that this is long and drawn out, but thank you for taking the time to read this. Any feedback counts. xo
I've tried an extensive list of things to ease the pain including the IC diet (three months without any results), myofascial release therapy (nine months with two separate therapists which actually did help to an extent when I was treating it vigorously through this, unfortunately the visits have become costly due to a change in my insurance and I've had to stop), elmiron and amitriptyline (using both drugs simultaneously for several months, didn't notice much of a change aside from growing more tired and sluggish), and valium vaginal suppositories (which generally work well, but put me straight to sleep and aren't very convenient day-to-day where I can't drive on them, work, school, etc), on top of countless visits to specialists, ultrasounds, a cystoscopy and a laparoscopy, truly an endless amount of things.
While I have learned to live with the pain, I have had a significantly harder time dealing with the fact that trying to have a normal relationship/sex life with IC seems virtually impossible. Intercourse is the most excruciatingly painful part of the pain that I feel, so obviously this is something that I have to keep my distance from. But as a young woman in my twenties, I have really let my IC takeover most aspects of my life, especially in terms of romantic/sexual relationships.
In my last relationship, I was with a man for two years who I was with when I had initially learned of my diagnosis, and the relationship really went downhill from there. Although having an intimate relationship was something that I would have killed for, he took the absence in our sex life very personally and acted out negatively against me, whether it had been mentally or physically.
I am very much over our relationship, but I find it difficult to detach myself from the words that were spit at me in his fits of rage about my condition and our sex life, where I was repeatedly told that he was the only person that would "put up" with being with someone who was unable to go through with intercourse and I would always remain alone and dysfunctional.
I've been out of this relationship for a year and I have let these words ring over and over in my head since they were spoken. It's been an entire year and I have yet to even initiate any time of romantic or sexual relationship, being completely scared away by the mere idea of having to explain to someone that I have feelings for them, but will never be able to have sex with them at any point in our relationship and being rejected by this. I know that sex isn't everything in a relationship, but it's factored into the equation in such a great deal and I am terrified of investing any type of emotion into someone, having "the talk", and then having them discard me because in that aspect of my life, I am dysfunctional.
I have passed up so many opportunities to get to know people better or formulate relationships with them just because of the severity of my IC and intercourse and each time it gets harder and harder.
If anyone knows of any ways to better cope with IC or painful intercourse and or simply wants to share their experience or stories with me, any feedback would be greatly appreciated. I feel as though I'm missing out on such a crucial part of my life and I'm tired of feeling as if I'm chained to my chronic illness, and unfortunately enough, I know that there are other people out there that feel similarly.
(Also, if anyone has any information on hypnosis for chronic pain or intercourse related problems, please indulge me. This is something that's always appeared potentially promising to me but I am unsure of how to go about searching for the right person to carry out with this specific hypnosis.)
I know that this is long and drawn out, but thank you for taking the time to read this. Any feedback counts. xo
chronicallyinspired
Hey you are not alone! I was diagnosed when I was around 19 and trust me there are so many negative feelings you go through as a result. There are many things you can try relating to having a normal sex life....it depends what kind of pain you are having and when.....there are physiotherapists that do internal work that are knowledgeable about IC, you can try taking a Tylenol before intercourse, there is this numbing gel you can get from your doctor as well that you can use, you can experiment with various positions (I've read being on top hurts less and you have more control), you can empty your bladder after you have intercourse and apply an ice pack or have a sitz bath....you can try doing internal massage yourself to help you relax during the actual act...not sure what you've tried thus far but I hope something helps...I've read a few books that have helped me in my journey...I went from having a very difficult sex life to a very functional one. Also don't let the words of your ex define you. You can find someone who loves you just the way you are... Many people with IC have! Keep on living positively! Good luck!
sickmachine
Thank you so much for the advice and kind words @chronicallyinspired, I can't express enough how much I appreciate you taking the time to respond. I hadn't heard of taking Tylenol before, but I'll definitely have to try that. I've only read Healing Pelvic Pain by Amy Stein and have found it to be helpful, but if you could let me know what the other books that you've read on the subject are, that would be great. Reading that you have a functional sex life is very hopeful for me. It's so difficult for me to talk about IC without a negative stigma attached to it because of my negative experiences with it and in my last relationship, so it's so special to hear something positive, and that things have been working for you. Again, thank you. xx
isabelle1954
There are other wqys of giving your partner pleasure. We call it "semi-sex" where he is able to orgasm with my help. It 's better than not having intercourse at all...and helps release a lot of tension and anxiety on your part re the pain and gives you a break. Isabelle1954
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