Secret Suffering - A resource community for women who experience pelvic and sexual pain

I’ve always been one to push things aside and put on my strong face. Try to get through my days and wait until I get home to let the way I feel affect me. I guess even that’s not 100% true. I wait until I get home and am in a room where I feel no one can find me. Hell, somewhere where I hope I can’t even find myself and my thoughts(this usually happens in the shower) before I breakdown and lose my marbles. I don’t let it happen often but when it comes, it comes like a tidal wave. Lately i’ve managed to destroy most of my emotions before they get too out of hand. I’ll start crying hysterically and within 2 minutes i’m telling myself to man up and get over it because I know that it could be worse. I think we all know that. But that doesn’t make what we’re going through any less painful or any easier to deal with.

I luckily have a phenomenal boyfriend who does everything in his power to be supportive and understand and not make me feel any pressure whatsoever when it comes to sex. I know that it is genuine and yet I find myself still angry with him, angry because he just CAN’T be telling me the truth that it doesn’t bother him as much as I think it does. In my mind, i’m deeply bothered that I cannot do for him what another woman can do for him sexually and I feel that him loving me is unfair to him. I love him more than anything in this world and cannot grasp the fact that we will continue to have a normal relationship if I don’t just learn how to grit my teeth and bare it. Truth is, i’ve been doing that since day one with him. I never tell him when it hurts…I never tell him to stop. Not because he won’t and not because he’ll be upset, but because I love him so much that I want him to be happy and i’m willing to sacrifice myself for that.

We’ve been together for a year now and he’s gotten very well at reading my facial expressions. No matter how hard I try, when sex hurts, I can’t hide it anymore. We’ll argue because he doesn’t understand why I can’t just tell him to stop and because I don’t understand why he can’t just let me make the decision for myself that the pain is worth it for his happiness. We then go through that very stubborn phase and don’t speak about it until the next time I blow up.
He keeps telling me that sex is not everything….and i agree. But to me, it’s a very important part of a normal functional relationship. Maybe that’s just in my mind maybe i’m the only one that thinks like that but I can’t get over the fact that he could probably be happier with someone else…someone he can have that intimate relationship with. He tells me he’s happiest with me and I should just let it go. Then i’m angry at him all over again because in my crazy, pain filled, emotional head that means he’s lying, and that he just doesn’t have the guts to tell me how much it really bothers him.

I guess i’ve just realized that it really has nothing to do with him and everything to do with me. Really i’m unhappy with myself because of this problem. I’m unhappy with the fact that I can’t be as sexual as I want to be with the person I love. I’m unhappy with the fact that i’m so damn jaded, bitter, and hurt physically and emotionally from the IC, Vulvodynia, Pelvic Floor dysfunction and every other problem that has sprung up since i’ve been diagnosed. I’m unhappy that at this point I really think i’ve lost it!

Usually i’m the one that talks to other Chronic Pain patients to offer support and friendship. I’m realizing now that I also need to talk about my problems and not hide behind every one elses.

As a side note…I haven’t had sex with my boyfriend in over a month. I have no interest in it, no desire at all. I wouldn’t care at this point if I ever had intercourse again. I’m 22 years old and I know that this is not healthy in any way. My boyfriend still stands behind me and still says that he understands but I feel so broken that it never really gets through to me.

I just want to say to all of the other beautiful women out here that are experiencing similar emotions…you are not alone. I guess that’s what this SecretSuffering is all about…and Susan I love you for enabling us to express ourselves through all of our pain.

Stay Strong…I’m trying too

Many have asked for updates on my condition and how I am doing. I have learned that because I have so many conditions that there are ups and downs in this healing process. Right now I am in a down as I would put it. The doctor is wonderful and is trying everything and I follow all directions to the tea. In some areas I have made progress but in others I have not.

I feel I have made progress with my Interstitial Cystitis. But my Vulvodynia and Vular Vestibulitis have in my opinion not progressed but digressed. I follow the diet for it strongly. I have gone on a completely gluten free diet and I have followed all instructions. This is frustrating for me as a women. I have constant pain and I feel like the medications are not working for me. I don’t want to scare other women into feeling like they will hit this point as well because they may not. I have other under lining health conditions that make treatment more interesting. I know there is hope that there are other options. I am considering these options and weighing on them heavily.

I also have pudenal nerve damage which is frustrating sense I am a computer programmer and am required to work at my desk sitting for up to 8 hours at a time. The nerve becomes inflamed then the rest of my conditions become inflamed. Its a horrible cycle. I am continuing with the pudenal nerve blocks.

 It has been since the end of october I think and the only progress I feel I have made is in the Interstitial Cystitis. Sex is little if ever. Its too painful and mentally nothing else is pleasing. I want it like everyother women not other ways. I want to be able to please my husband of 8 years like I should be able to.

He is a saint. He has been very paitent. Not to say that he isn’t suffering he is. But he supports me in every way. I love him for that. We were married at 19 and have only been with each other. So this is hard on us. We had a great sex life before all of this. One our friends envied. So for him its hard to go from that to what we have now. He is very needy and I feel at times that I am letting him down. 

My kids and friends have very little knowledge of what I am going through. One they don’t understand it because they don’t suffer it and two I hide it well with a great smile on my face every day. I hide pain so well. But there are the days I can not hide the pain. When I am so tired of it and of suffering. But I focus on the hope of healing. I know there are treatments that work and that I can explore. 

I am looking into those other treatments with my doctor and considering them. We will see how it goes. 

I am nineteen years old and have been suffering from Vulvular Vestibulitas since I was twelve. I have seen a variety of specialists and I am currently on an antideprresant which has helped to ease the pain.  Recently, I went to my naturopath to see if she had any suggestions for treatment. She worked out a treatment plan for me which included splitting a vitamin E tablet and applying it topically ( she also informed me that vitamin E can break condoms ). The vitamin E seems to be working as I am less sensitive to touch and have fewer flare ups.  I have yet to discuss this treatment with my gynocologist so i dont know what her thoughts are on it but it seems to be helpling. I just thought I should share my experience with this treatment as it may be able to help someone else.