The tangle of emotions around sex is sometimes hard to unravel. 
Within a relationship, it’s easy to worry about everything on two
different levels - personal and interpersonal. No woman wants to
continue experiencing vulvar and vaginal pain, urinary frequency, or
any other symptom on the list. Women have constant concerns about
their own self, their own personal longing to feel pleasure instead of
pain, and the life they would rather be leading. Piled on top of that
are the worries about their relationship and sex. It’s no wonder many
women find themselves sinking into depression, hopelessness, anxiety,
or panic. I certainly remember feeling all four of those heavy,
painful emotions when I was dealing with IC and vulvodynia.

Many of my clients feel a host of negative feelings because they
cannot have sexual intercourse. It doesn’t take any effort at all for
me to put myself in their shoes - all I have to do is close my eyes
and remember. I used to feel like I was depriving my husband, like I
was no longer a real wife, like I was no longer a real woman, and like
my chances of having children were nonexistent. I worried that my
husband wouldn’t love me anymore if we couldn’t share that bond. I
felt terribly sad about not feeling pleasurable physical sensations in
an area of my body designed for enjoyment.  I thought my life much
less colorful, less vivid without the beauty of physical intimacy.

I thought that acute (vulvar) vestibulitis and vulvodynia were the worst
things that could possibly happen to me. I thought it would ruin my
sex life forever, damage or ruin my relationship, and strip me of the
joy of physical intimacy. I wanted to strangle those medical
professionals who suggested “other means of sexual contact besides
intercourse.” I wanted the whole thing or nothing, and even found it
hard to just cuddle with my husband. The very thought that those
doors were closed to me was so painful I could not stand to face it.

When I look back at my mental state during that time, I imagine horses
escaping from the pen, galloping wildly in every direction. My
thoughts ran rampant in my head, increasing my stress levels with
every new repetition. As I learned mental tools to reduce my anxiety
and help myself deal with the painful emotions, I discovered I had the
power to look at myself from a new perspective. I realized I was
placing an awful burden on my sex life. It had to define my
womanhood, uphold my marriage, serve as my central source for joy,
give me confidence, represent the gift of love to my husband, and
serve as the only form of physical intimacy we shared.

 From this perspective, I saw I was making everything much worse for
myself. The battle waging within me over my inability to have sex was
only adding stress, anxiety, and fresh despair to the emotional
turmoil I felt. I set out to learn how to feel okay about myself and
my womanhood separate from sex. I worked to improve my relationship
with myself and my husband. I allowed myself to accept the situation
for what it was and stopped fighting myself. Arguing with reality was
only bringing me pain.

Looking back, it is easy to see the whole picture. I went through
physical pain and a period of no sex, that’s true. But as I
recovered my health, I discovered myself. I became the best version
of myself - a confident, comfortable, joyful woman. I let myself
learn about me while stripped of everything I thought I needed. In
the end, this was truly a life-changing experience. I believed so
strongly that not having sex was a damaging thing, but the reality was
just the opposite. The experience taught me about myself and gave my
husband and I a reason to explore our relationship to new depths. I
learned how to feel gratitude for the simplest moments, not just the
exciting milestones.

Making friends with the reality of no sex taught me how to accept and
relax just when I think I need to fight. From this mindset, it is
much easier to feel okay, heal mentally and physically, and find some
peace. From this mindset, sex becomes what it is supposed to be -
just another way to celebrate life.

Sometimes, I’m in a hurry and want to be able to make a quick, simple meal. Nuts. That’s a great idea. But having tried a wide variety, I can tell that I flare. But right now, I’m unwilling to give up almonds. My diet is so bland, so every day the same, that I just need a bit of variety in order to maintain the willingness to do what has worked for me for the past ten years.

But almonds, I love them. Though food is no longer entertainment, I must admit to enjoying the texture and crunch. I weigh 1.5 oz at a meal and that is enough for me.

However, the burn and sometimes, urgency to pee, is often increased within hours and certainly by the next day. In the evening after eating them, when I use my lidocaine, I want to jump through the roof. Sometimes the burning gets so bad I cannot cross my legs. And sometimes, I don’t notice it at all … especially on nights I don’t use the lidocaine. I can ignore the burn until I eat them for a number of meals (because I think I’m “getting away with it” since, for some reason and sometimes, there is no palpable pain). But then, when I remember my lidocaine or we try to have sex (not me and the almond, but my husband and I), oh boy does the pain rear its ugly head. But a nagging doubt persists that maybe there was something else going on too.

So, why can’t I stop eating almonds? No, the question is more, “why WON’T I stop eating almonds?” I do sometimes for a month or so, and often the pain subsides. I think it comes down to that gray area about which I often speak. How much pain am I willing to tolerate? My mind playing tricks too - oh, maybe it isn’t the almonds - because sometimes, it doesn’t burn. And with my sensitivities, there could be so many factors contributing.

But I know that without almonds, or any other nuts, it would be one less factor.

There is no answer to this problem. Living life with these conditions requires compromise and acceptance for me. My actions lead to certain results. That’s just how it is. So I cannot bewail my fate if I can take an action to change a consequence … but I choose not to do so.

Therefore, it all comes down to an almond. And what choices I will make just for today.

Some women worry they’ll never find a man who will understand and be okay with vulvodynia, while others worry their current relationship will end. There a million other worries sandwiched between these two ends of the spectrum, and none of them feel good. For any woman with pelvic pain, worry and anxiety are troublemakers. They create a fight-or-flight response in the body, which increases the heart rate, muscle tension, and the production of certain hormones. None of these side effects help the healing process, and in fact, they primarily prevent the healing process. So learning to release worry and anxiety is of paramount importance for anyone dealing with pelvic pain disorders.

Of course, releasing worry is much easier said than done. As a life coach, I spend most of my time working with clients on negative emotions such as worry, anxiety, fear, doubt, sadness, depression, hopelessness, and panic. The first step to figuring out what to do with these emotions sounds very simple: you must notice you are feeling a negative emotion. It is not nearly as easy as you might think. For example, how many of us have lashed out angrily at a spouse only to realize later he was innocent of all accusations? PMS, anyone?

It is difficult to feel okay in a relationship with another person when you are not okay in your relationship with yourself. Recognizing the emotions you are feeling as you work through ill health and taking responsibility for them is the key to maintaining and creating good relationships. Your spouses or significant other cannot know what you are feeling or thinking. He cannot fix your emotional, physical, or mental state. That is your job, and in fact, your priority.

For example, if your deepest fear is your husband will leave you, you will feel intense worry and anxiety every time you think about this fear. Not realizing you are in this emotional state, you might find yourself snapping at him, feeling irritated with him, crying effusively in his presence, withholding yourself from him, nagging him, and wishing he would just understand, help out more, or change in whatever way you desire. As a result of this, you might spend most of your time with him acting very unpleasantly, creating a feeling of distance between the two of you. He might pull away instinctively to protect his own emotional state, which only feeds your original fear that he will leave. Though this may be the furthest thing from his mind, it is the only thing on yours. By not recognizing your own emotional state and discovering the real issue underneath it, you actually end up moving toward the very thing you fear – the loss of your husband.

If you can identify your feeling and recognize your own anxiety or fear, you are on your way to changing how you react. Knowing you are feeling this way, even if you don’t know why, will help you step back from it and not get caught up in it. You will recognize the irritation inside you when your spouse comes home and says hello. You will see that he simply said hello, and that your irritation comes from your own emotional state. Were you feeling happy, his hello would be perfectly fine and not irritating at all.

This is the first step toward creating harmony within a relationship even during difficult situations. Take responsibility for your own emotions, recognize them, and notice them. Become aware of the multitude of emotions you are feeling right now on a day-to-day basis, and take some time to sit quietly and jot them down. Let yourself sit with these emotions as you write, and describe them to yourself in your notebook. What do they feel like inside you? Do you notice them settling somewhere within your body? Often, this exercise is enough to dispel and release negative emotion, leaving you with enough clarity to see your spouse for who he is. Without your emotion clouding your vision, your relationship will feel much simpler and more straightforward. From this place, you can have calm, clean discussions and connect with each other on a deeper level.

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

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. 

For young adults, the experience can be even further difficult as they are unaware that their pain should be any different, or are too embarrassed to discuss it with their health care provider.  When sex is painful, it can be dismissed as normal or occasional.  Young adults also have difficulty explaining pain experiences to their partners because they do not want to be rejected or seen as “defective.” 

Patients are often referred for psychological treatment long after a prolonged history of pelvic pain, which has (understandably!) lead to depression and anxiety.  Stress is a major contributing factor leading to exacerbated pain levels.  When dealt with effectively, therapy can help to calm the patient and provide some hope for the future, while learning how to cope with their condition.  Once the pain is stabilized to a tolerable level, patients can work through the depressive and anxious symptoms, along with any underlying issues (i.e. sexual abuse, marital problems, etc.) that may be contributing to their experience. 

Working with a multidisciplinary team (PT, OBGYN, Psych, etc.) can help patients to feel supported while they work through both the physical and psychological aspects of their condition and work towards recovery.  The most important thing is that patients receive the help they have so desperately wanted and needed for such an intensely secretive and painful experience.

First, let me say that I feel so lucky to have found a PT in Florida who performs pelvic floor physical therapy and has treated IC and sexual pain patients for years. She also treats any kind of chronic and acute pain as all PTs do. She works in a podiatrist’s office, in the back room. Kind of funny to me. All these seniors getting their calluses shaved and their ingrown toenails clipped while my most personal of body parts receive treatment. Though I must admit that my feet have always embarrassed me, due to my extended second toe. But I digress.

It seemed an uncomfortable idea to begin with. Someone, a stranger, touching me “down there.” Actually using her fingers to press on painful trigger points to release them, just like in my shoulder … only in, well, ok, I’ll just say it, in my vagina. Not to mention, I’ve heard that these specialized PTs sometimes use a dilator, which is, to me, just another name for a dildo, raising my anxiety level even higher.

But I’ve been interviewing these specialists for the book and they are all dedicated women passionate about helping other women find long-lasting relief from their pain, and very serious when discussing their work.

And just about every doctor I’ve interviewed, including some of the top experts in the field of pelvic pain, have insisted that pelvic floor physical therapy is an integral part of any successful sexual pain treatment plan.

So, I went to see the PT. The first session lasted two hours. I ended up feeling very comfortable. Plus, the loud whirring of the callous remover in the next room was somehow soothing and reassuring. Of course, I was still fully clothed and all of the treatment still theoretical.

(more…)