Revelations

I had an epiphany today. It doesn’t really have anything to do with vag, but it’s got a lot to do with my self-betterment, which to me, is synonymous with curing vaginismus. I made up with that friend I talked about a few posts ago, the one who referred me to that awful gynecologist (in her defense, she did not know that she was going to be an awful doctor to me. My friend is “normal” so she’s a great-doctor to her). We’ve had a turbulent 6 year relationship which I thought had ended for good after I said some pretty horrible things to her and cut her out of my life. But alas, good friends always come back and things always work out. I came to the realization that our friendship had become so strained partly due to the fact that I sometimes am a little bit jealous of her. Jealous, because she’s living the life that I wish I had, she has the freedom to enjoy life to the fullest without being tied down by her family (and she can have sex whenever she wants, and enjoys the hell out of it). Although she was partly to blame for our falling out too, I finally admitted to myself that it wasn’t all her fault, and that a lot of it had to do with my attitude. It’s like, literally overnight, this all dawned on me, and I realized I didn’t want to to lose her as a friend. We had a nice long talk over drinks today and updated each other on our lives since we stopped speaking. I told her about vaginismus, and that I finally know the reason why I was never able to have sex or use tampons. When I described all that I’ve gone through since I found out, she started crying and said she couldn’t believe how I was dealing with it. It really touched me to see that reaction because it’s the reaction I’ve been wanting to see that no one had given me. My sister brushed it off and told me not to worry, saying that at least it’s not anything like cancer. My aunt just said that doctors here don’t know what they’re talking about, and that if I went to the doctors in our home country, they’d fix me in a jiffy. She didn’t really understand. My other friends who I’ve told have just acted really surprised that there is a such a thing as this and seemed pretty happy to be talking about something else once I changed the subject. No one has ever expressed concern for how it must make me feel. No one has ever said they feel sorry for me. And I think that’s what I’ve been wanting to hear. I want to hear that it’s OK to feel depressed about it. I was starting to feel like with all the other horrors in the world, I wasn’t allowed to feel like I was suffering. 

In other news, I had my first appointment with my counselor this past Thursday. I’d never been to a counselor before, so I had no idea what to expect, and I have to say, it was a little bit awkward. It’s just strange to divulge so much about yourself to a perfect stranger, and to sit there and analyze how your experiences have had an impact on your life. I didn’t realize I’d be nervous, but I should have figured I would be since I’m always nervous when I meet new people. At one point, I caught myself wringing my hands when I was talking about something. She pointed it out, asked me if I was nervous, and said that if she was asking me anything that made me feel uncomfortable that we could move on to something else. But the fact is, that’s just the way I am. I am so extremely shy and self-conscious that I feel nervous and awkward in situations when most people should feel fine. I also realized that I tend to babble when I’m put on the spot, and lose sight of what it is that I wanted to say. I hope it’s something that gets easier and that I get used to the more I go and see her. The hour that I spent there did go by really fast though, and I found myself wishing our session was a little bit longer. I guess that’s a good sign.

At one point I mentioned something about my fear that this could be some other physical abnormality that I have and don’t know about yet, and she said to me that when we let ourselves get consumed by fear, the body can sort of manifest that physically. That got me thinking about me being shy and nervous all the time, and I’m noticing that I really do get consumed by fear and anxiety a lot, and I find myself really tense and closed-up sometimes, especially in social situations. So it looks like my vaginismus isn’t just about my vagina. It’s something I’m going to need to work on in every aspect of my life.

“F*ck my life…”

Recently, I had a falling out with a best friend. In the span of 4 emails, a friendship that had lasted for almost 6 years, was over. After sending that last “take care of yourself”, I had some misgivings about it. But after yesterday’s awful experience at my gynecologist’s, any misgivings I had about ending our friendship flew right out the door. Why? Because this friend was the one who referred me to this HORRIBLE gynecologist. Obviously, this wasn’t the reason our friendship ended. I’m not that much of an awful person. But the fact that I had to suffer at the hands of a doctor that my so-called friend said was absolutely wonderful and understanding, only reaffirms my belief that this friend didn’t deserve my trust. But that’s beside the point. I may be exaggerating a bit when I say this gynecologist is “horrible”, because I’m sure she’s a highly skilled gynecologist… when it comes to “normal” women. When it comes to me, not so much. 

When she first told me I had vestibulitis, she gave me a prescription for some meds, told me to go see a physical therapist, and then told me to come back and see her after my first visit with the therapist. Maybe I was wrong to assume that I would just be going in to talk to her about my progress, but seeing as we had already established that any kind of penetration was way too painful for me, I didn’t think she would want to attempt it again until I was “cured”. Apparently, she thought that some anti-depressants and a visit to the physical therapist was enough to cure me. Clue #1 that she doesn’t have the faintest idea of what vaginismus is or what it takes to cure it.

My blood pressure was way up by the time I got to her office. I know because the nurse who took my blood pressure asked me if I was nervous. “Nervous” wasn’t the word. “On the brink of a panic attack” seemed more likely. Just being in her office is enough to make my scared, traumatized vagina curl up into a ball with fear. 

Then the nurse brought me into one of the rooms and asked me a few questions about how I was doing. I told her about going to see my PT and how she had referred me to a specialist. She then asked me how my medication was working out and if I felt any discomfort when I touched myself. By this I’m assuming that she meant whenever I attempted inserting my finger. When I told her that I hadn’t done that, that I was too scared to try, she looked at me like I was a lost little puppy and said “aww”. Then she told me that the doctor was going to have to do an internal to determine if the medicine was working. I started to protest, telling her that I was not comfortable with that and that that was the reason I was going to see the specialist in the first place. She argued with me a little longer and then said, “Well ok, you can argue with Dr. K, but she’s going to want to do an internal.” At this point, I was holding back tears and didn’t have much strength to argue. On her way out the door, she gave me that same lost-puppy look again, chuckled and said “you’re cute”. WTF.

After Dr. K came in, it was pretty much the same as above. She said that since I refused a medical exam, there wasn’t much she could do. I told her that that’s why I was going to go see a specialist, to which she responds, “Well I’m glad, because I’m gonna need all the help I can get with YOU.” At that point, I felt completely embarrassed for having gone to see her at all. I wanted to talk to her about my phobia, the possibility that this could be vaginismus (I just need to hear a doctor confirm it!), and my treatment options. I wanted to talk to her and feel reassured. But instead, her and her nurses made me feel like a freak, like they’d never seen a case like mine. They made me feel like I was nothing more than a scared little girl, and not at all like a woman with a medical problem. She then told me to go see the specialist and to keep in touch with her, patted my leg, and walked out. I left without another word, with the resolution to never come back.

And to top off the amazingly wonderful week I’ve been having, my car mechanic tells me today that my beat-up old Honda Accord has a teeny-tiny damage that’s only gonna cost a measly $1,200 to fix.

In the words of a very wise friend of mine, “Fuck my life.”

First PT Appointment. Sort of.

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!

Nightmare

I had my first and only pap smear last November. After years of avoiding the gyno’s office, I had finally heeded my friends’ advice and decided to go in for the routine pap smear. I believed my friends’ reassurances that all I would feel is a little pressure, and that once it was over, I would finally get over my fear of tampons and sex. Unfortunately, I felt more than a little pressure. I felt an unbelievable amount of pain. My doctor didn’t think much of it, and after handing me some samples of birth control, she ran out the door telling me that I better start using tampons if I wanted my first time to be pain-free. A year later, after many painful and tearful attempts at sex, I am still a virgin, and I’m even more scared to try tampons than I was before.

I went back to the gyno’s office yesterday, in time for my yearly visit. I told myself to be brave, and that the pain was all in my head, and that all I had to do was relax. As much as I tried to relax, I couldn’t ignore the fact that the pain was real, and it hurt like a motherfucking bitch. i burst into tears on the examining table and begged the doctor to stop. They finally realized that there was something wrong and that this pain I was feeling is not normal. The head gyno was called in, and I sobbed on the table while they discussed and tried to examine me. Finally, I was told that I have a condition called vestibulitis and I also have severe pelvic floor dysfunction. I’d never even heard of that. Finally, a physical explanation for why I’ve felt like a freak all these years, although that didn’t make me feel better at all. The doctor prescribed a drug called amitriptyline, an antidepressant that she said would help loosen the muscles around my vagina. After a month of taking that, I’m supposed to go see a physical therapist she recommended.

This whole thing feels like a nightmare. The more stuff I find about it on the internet, the more scared I feel. This is constantly on my mind and I’m having trouble focusing at work and on everyday things. I can’t even sit down to watch my favorite TV shows without my mind wandering or without me bursting into tears. I have never been more scared in my life.