I guess I wasted $50 today

8 09 2009

Today I went to another, and this time completely pointless, follow-up appointment with my pelvic pain specialist. I told her how I had run out of my specially blended cream about a week after the last time I saw her, and how I finally got a refill delivered last week after struggling with the pharmacy for a few weeks. Gotta love when fax machines don’t work, huh? Needless to say, I went without using my cream for about 3 or 4 weeks, so whatever little progress my tender vag was making is probably shot to hell. She thought it would be pointless to go on with the exam if my skin was going to be just as tender as when I first started. I agreed, and actually breathed a sigh of relief, because it’s not like I happily anticipate being poked and prodded with a q-tip, while my poor scared pelvic muscles tighten up and clamp down.

I also told her about how I still have this phobia of penetration that I just can’t seem to get rid of, and how the thought of anything going in there is still absolutely terrifying. This pretty much convinced her that it was pointless to keep poking me because she doesn’t want to try and insert anything until I’m comfortable with it. But when will I be!? She asked me about what techniques my counselor and I were working with to try and overcome this fear, and I told her about some of the stuff we’ve talked about, but to be honest, it doesn’t feel like we’re really doing anything, besides talking about my freaking emotional closed-offishness. My counselor did tell me that she was looking into some sort of guided imagery stuff but we haven’t done anything with that yet. Hypnosis didn’t seem to work. Apparently I’m not a good candidate for EMDR since I was never abused. So what the hell will work? My specialist did say she was going to try and talk to my counselor about some of the things we seem to be struggling with so that we can come up with a game plan of how I’m going to be moving forward. So maybe hopefully I’ll get somewhere soon? Also, at my next appointment with my specialist (whenever that will be) we’re going to try some external biofeedback so that we can actually see how much those pelvic muscles are tightening up.

So I guess all-in-all, it wasn’t a total waste of an appointment. But still, I was kind of annoyed that I took the afternoon off of work, got on the train, paid $10 to get on said train, and paid my $40 co-pay just so that I could talk to my specialist. *sigh* But nevertheless, I was kind of glad I didn’t have to go through the disappointment of getting poked, feeling a slight twinge of ouch, and freaking out and asking her to stop, and once again feeling like I had gotten nowhere.





Today, I Feel BROKEN!

9 04 2009

I had just about the worst session with my therapist today. I’m not really sure what happened. Or what I’m even really feeling. I feel frustrated, annoyed, discouraged, kind of pissed off… I don’t know. I’m crying uncontrollably right now and can’t even explain why. The tears just came out of nowhere. Today was one of those days. One of those days where everything seems to just be wrong and I’m annoyed at the world and I wanna do nothing but cry.

About 5 minutes ago, I knew exactly where I wanted to go with this post. There were things I wanted to say and frustrations I wanted to express. And now I can’t remember a single one of them. What the fuck is wrong with me? I don’t know, but I think the rest of this post is probably gonna be an incoherent ramble.

I find that I tend to have a very hard time expressing my thoughts and feelings and whatnot. A very hard time. For the most part, if I have a lot of time to think and gather my thoughts, I can communicate just fine when I write. But when I’m put on the spot, like at the therapist’s office, for example, I tend to clam up and my mind goes blank. So then I try to rack my brain to think of what it is I want to say, and I spew out whatever bullshit lands on the tip of my tongue. Which is what I think happened today, and which is why my therapist was on a completely different page from me today. I don’t know. I tried to tell her how I’ve been feeling this week. How I haven’t had much desire to do anything in the vaginismus-fixing department. And how I’m starting to feel like this is going to be impossible for me to fix. She asks me why I feel that way. Everything is why do you feel this? Why do you feel that? Well I gotta tell you, most of the time, I have no idea why I feel a certain way. I just FEEL. I don’t always THINK, nor do I have the ability to rationalize what I’m feeling most of the time. For example. The last time I felt this little wave of depression, I cried after I dropped a fork at work. Why did that make me cry? I don’t know. I also don’t know why I’ve been afraid of penetration for as long as I can remember. I don’t know why I’ve always associated penetration with pain. And I don’t know why I freaked out when I found out what intercourse was. When you eat, you put food in your mouth, right? So why is it so scary to think that when you have sex you put a penis in your vagina? I DON’T FUCKING KNOW!

*Deep Breath*

Ok, so I haven’t been feeling great. I obviously had a setback. So we took insertion off the table. Let me backtrack. Last time I met with my therapist, she said that since I seemed to be getting so comfortable with trying to insert my finger, then I can just go ahead and try actual insertion. As soon as I got home that night, I freaked. Once again, I don’t know why, but I freaked. My therapist seemed to think that my subconscious mind wasn’t ready for that step yet, so it’s now yelling, “STOP!” She asked me why I was in such a hurry. Personally, I don’t think I’m in a hurry at all. I’ve known about this for almost 5 months now, and have been in therapy for a little over 2, and I haven’t even gotten anywhere near the first dilator yet. I remember reading on some websites that vaginismus treatment usually takes a few months. I know that’s a load of bullshit, but regardless, I don’t feel like I’ve gotten anywhere. And that’s frustrating.

She also seemed to think that maybe I’m afraid of getting fixed. That maybe once I’m fixed, I will no longer have my condition to “blame” for my relationship problems. That I’m afraid that once I fix this, I won’t be able to find anyone to have sex with (gee, thanks). That I’m afraid of sex itself… No! No, no, no, no, no, no, NO. I want to be fixed more than ANYTHING. I’m not AFRAID of being fixed, because being fixed will mean that I can be freaking NORMAL. That I can use tampons just like all the normal women my age. That I can have SEX (which I want more than anything… pain-free of course). That I can take pleasure in seeing and hearing about sex everywhere I go, instead of feeling bitter about it, because I’ll actually have the ability to do it. Like a NORMAL person. Why would I be afraid of something I want so badly?

She doesn’t like it when I say that I’m not normal. That I’m broken. But the truth is, that is how I FEEL. No matter how many times someone tells me that I’m normal, I don’t FEEL normal, and I’m never gonna BE normal. Even if I overcome this, I’m never going to be able to have random, spontaneous sex out in the middle of a field, under the stars, or caught in the rain. No, because I’m always gonna need to be a in a comfortable position, completely relaxed, with plenty of lube on hand. I don’t know why I think random, spontaneous sex is my definition of normal, but it’s something a person should have the ability to do. If sex is so natural, why is it so unnatural (and impossible) for me?

Physically, I also feel like I’m not normal. I’ve seen plenty of pictures of the endless varieties of vulvas, and I know mine’s different from everyone else’s, but how do I know that mine is normal? Why doesn’t something just glide in there like it’s supposed to? Where’s the path of least resistance (as described here)? Why does there seem to be a freaking WALL there?! Yes, I know it’s the tight pelvic muslces and all that jazz, but I’ve been feeling some random, very weird pains, and I really would feel better if I could just get it checked out. I’m sick of all this psychobabble and relaxation. I just want to be hooked up to a biofeedback machine already so that I could actually SEE that my muscles are too tight, and that it’s not something I’m making up in my head. What if it’s not my muscles at all, but something else all together? I just want someone to take a look and tell me what’s going on down there. 

FIX ME!!





First PT Appointment. Sort of.

15 01 2009

Ok. Now that I’ve gotten my head together and feel a little better about everything, I will try to describe my appointment with my physical therapist. Of course, with my bad memory and it now being 2 days after the fact, I’ve probably forgotten a lot of details.

I went in having absolutely no idea what to expect. When my gyno had told me to go see this person, she didn’t give me any details whatsoever. She didn’t even tell me that she was a physical therapist. I found that out on my own after finding a listing on the internet. (Side-note: the more I talk about my gyno and notice that everything I say about her is negative, the more I realize that maybe I should start looking for a new gyno. She’s not very receptive of my feelings, she didn’t take the time to sit me down and explain what was going on with me, she didn’t try to calm me down, and she wasn’t very gentle at all- she jammed her finger in me even after I shouted and cried that it hurt).

But back to the PT appointment. I walked into the waiting room and noticed that there was a type of exercise room at the far end of the hall, with treadmills and elyptical machines, that sort of stuff. So this was definitely a general physical therapy type of place; you know, where they exercise your legs, or your arms, or your back. You wouldn’t walk in there and think “someone in one of these rooms is getting her vagina stretched out right now.” They gave me some paperwork to fill out. One of the papers asked a bunch of questions about my medical history, what kind of meds I was on, and then it asked what my injury was. After some consideration, I put in “N/A”. What would it have looked like if I had written “broken vagina”?

At this point, an old man in sweats walked past me. Everyone who went in and out of that place was dressed in exercise clothes, even the therapists. I felt very overdressed in my work pants. Good thing I was wearing comfortable shoes at least.

After I waited for what seemed over a half hour, a pretty, young woman came up to me and introduced herself as Amy, my therapist. I had expected a middle-aged heavy-set lady for some reason. I was happily surprised. She would be much easier to talk to. She led me into one of the rooms and told me to have a seat on the massage-table-looking thing in the middle of the very small, dimly lit room. It felt like a room in someone’s home, rather than a doctor’s office, which was really nice. She sat on a stool in front of me, and I had to look down at her while I answered her questions, which felt kind of strange, but relaxing at the same time. She asked me how old I was, and some other questions about my health which slip my mind at the moment. This is where my memory starts to get hazy. We eventually got on the topic of why I was there, and I told her that I had first tried to use a tampon years ago, and that it started to hurt before I had even gotten it like half an inch in, so I freaked out and never tried again. Then I told her about my many attempts to have sex, and how it would start hurting the second he started trying to push it in. “He” being my ex-boyfriend. It brought back painful memories of him when she asked me approximately when it was that I had tried. Then I told her about my very painful and traumatizing visits to the gyno, and how the second time was worse than the first. I told her about the diagnosis I’d gotten, and that I was told to start taking amitriptyline (amitriptyline is a tricyclic antidepressant, which I’ve read is sometimes prescribed to women with vulval pain disorders, although it’s not proven that it works… great). She then told me a little about the pelvis, and the muscles in that area, and how the muscle spasms can cause pain upon penetration. She also showed me a model of the pelvis and pointed out where the muscles are located. She then flipped through a book of the human anatomy and showed me some diagrams of what the vulva looked like. I wasn’t surprised by what I saw, because I’ve seen many diagrams of what it should look like down there, and have even seen actual pictures (it is GROSS!), but for some reason I can’t get up the nerve to look at my own damn vagina. I then asked her if she was familiar with vaginismus, and when she nodded, I told her that I think that’s what I may have. She immediately shook her head and said “that may not necessarily be it.”

This is the part that really frustrates me. She was so quick to discount the possibility of vaginismus without even really asking me why I thought I had it, or asking me what symptoms I have that could point to it. Isn’t that what my “pelvic floor dysfunction” is? Muscle spasms causing pain upon penetration, a.k.a. vaginismus? Not to mention extreme fear of penetration. Vaginismus, hellooo. I’m not incontinent, I don’t have problems with my bowels, and I don’t have any other type of pelvic pain, which are other typical symptoms of pelvic floor dysfunction, so how can she be so quick to assume that that’s what I have, and discount vaginismus so quickly?! It’s the only thing that makes sense to me!

Rant over.

After that, she asked me if my gyno had explained to me or given me an idea of what she would be doing with me, and I told her that I had no clue. She told me that she would insert her finger and manually stretch out the muscles around the vagina, and then she said some stuff about certain pressure points in there that can be more tense than others. After hearing the word “insert”, you could see the blood leaving my face. I thought I would SLOWLY be introduced to insertion, once I learned to relax the muscles through external means… or something! Anything other than “insert finger”! While all these thoughts were flying through my brain, Amy was still talking. I tried to collect myself and listen to what she was saying. She was telling me that they also use a process called “biofeedback“, which I had already heard of, thanks to the wonders of the Internet. She explained that it’s basically a machine that can “read” your muscle movements, and it electronically tells you whether your muscles are relaxed or contracted. One type of biofeedback machine has a vaginal probe. I don’t like the word “probe”. She told me the probe is a bit large, so that wouldn’t be an option for me right now. I breathed a sigh of relief when she said that. According to the stuff I’ve read online, it uses a “small” probe. I guess it would be small to normal women, but to me, any probe is way too big, no matter how small. Good thing Amy understands that anything with a probe isn’t going to be touching me any time soon. She said there’s also another type of biofeedback machine that uses sensors similar to the ones they use on heart-monitoring machines. That sounds much better to me.

Unfortunately for me, she said she would have to start off with the finger insertion, which I didn’t like at all. I tried to explain to her how much it hurt when my gyno inserted her finger, and even though she assured me she would be much more gentle than any gyno ever was, I was still not reassured. I told her that I have an extreme fear of penetration, and I don’t know the cause of my phobia, and that I wasn’t sure if I would need psychological counseling or not. I basically just started babbling, because I really really didn’t want her to do it. She then told me that she would prefer to refer me to a vulvar pain specialist, because if there’s a physical problem, then that would need to be treated first, before I could even think of therapy. She referred me to a nurse practitioner at the Pelvic and Sexual Health Institute of Philadelphia. I was actually relieved to hear there was such a place. These people would have to know what’s wrong with me, and how to treat it. Amy also told me that the institute has counselors available if I felt that I needed to address any psychological issues. She stressed that patients need to be mentally ready for physical therapy. Upon hearing that, I lost hope. I feel like I’m never going to be mentally ready.

Thankfully, although Amy couldn’t help me right now, she was extremely helpful, telling me that she would personally speak with my gyno to explain my situation, and that she would contact the nurse practitioner at the Institute and speak to her about me before I went in. She also told me to keep in touch with her about when my appointment is so that we could work out a time to go back and see her to begin therapy. And she told me to do it soon because healing this takes time. But why do I have to rush? I have no boyfriend to speak of. So why do I have to rush to get something in my vagina when there’s no hope of a potential penis to enter it anytime soon? “Vaginismus and lack of sex is not cancer. There should be no rush to treat it.” [Vaginismus Awareness Network]

Nevertheless, I called the Institute today to make an appointment. I’m still waiting to hear back from them as to my insurance coverage. They had me fax over my insurance ID card so that they could verify my coverage before I made an appointment. I’m actually glad for that because I was so worried that they either didn’t take my insurance, or that my insurance wouldn’t cover their services and I would get hit with surprise bills later. I’m keeping my fingers crossed because these people are my only hope!








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