Much needed update

I can’t believe I’ve neglected my blog for over a month. I’ve been feeling rather strange the past few weeks and just haven’t had the discipline to write about what’s been going on with me, or to keep up with my… journey to healing? Recovery? What exactly would you call it?

I’ve been going through a series of ups-and-downs since I last updated, but at this moment I feel like I’ve hit a new low. But let me try and backtrack to my appointment of May 19th. I don’t know if I mentioned it on the last post, but I finally made another appointment with my pelvic pain specialist, since my panic attack at the last attempt back in January.

Overall, I was feeling pretty good about the appointment. I was actually looking forward to being physically examined, which was a nice change from all the talking and analyzing I was going through with my counselor. I had a little bit of anxiety, but I was very happily surprised, and proud, to find that I was able to control it pretty well. I even got stuck in some crazy stress-inducing lunch-hour city traffic on the way over there, but I managed to keep my cool. Once again, my NP was lovely, and sympathetic, and very comforting. She tried the Q-tip test again, and this time, I didn’t panic when the Q-tip touched me. I was able to breathe through it and tell her when I felt pain and when I didn’t. Turns out I did feel pain when she touched the opening, although to this day I’m still having trouble deciphering whether the pain was 100% there, or whether my anxiety is playing a part. The whole thing took about 2 seconds, because she stopped the second I told her I felt pain. Although we didn’t get very far, she seemed really pleased that I didn’t panic and told me how well I did and how far I’ve come in such a short time. We talked about my vag a little and she reassured me that mine looked very normal, which was one of my fears. Although she did say that, at this point, she thinks I may have a mild case of vulvar vestibulitis. If we could do a full-on exam, she would know for sure, but alas my anxiety won’t let me. She put me back on the Elavil (generic name: amitriptyline) that my gyno had put me on previously and also gave me a cream (a special mixture of Estrace) to apply nightly. She also gave me a prescription for Ativan to take before my appointments and before attempts at insertion. I left the appointment feeling elated, thinking how wonderful it was to finally be doing something about this as opposed to just talking about my failed attempts at insertion and overanalyzing my fears with my counselor. I also thought that the medications were surely going to work, and that the next time I went to see my NP, a miracle would occur, and she would be able to insert the Q-tip with no pain or panic.

Well, this is why I’m so hesitant to be optimistic about anything, because when things don’t fulfill my expectations, my whole world seems to come crashing down. After my second appointment this past Tuesday, I couldn’t even remember that elated feeling from the May appointment. We didn’t really get any further than the last appointment, even though I took an Ativan beforehand, which definitely helped to slow my beating heart. She started out by putting pressure with her fingers on the inside of my thighs and around my buttocks. Then she took the Q-tip and put pressure on different parts of my labia. Although that didn’t hurt at all, I started feeling a little panicky. Then, the second she touched the Q-tip to the opening and I felt the tenderness, I started feeling all those panicky feelings of “no-oh-my-god-i-can’t-do-this-stop-it-hurts-i-wanna-jump-off-this-table-i-don’t-wanna-do-this-anymore-forget-that-i-have-a-vagina!!” I tried to keep breathing through it, but I just couldn’t get those thoughts out of my head and I wanted more than anything to curl up into a ball. As much as I want to just GET OVER THIS, I couldn’t bring myself to keep my legs open and keep going. I wanted out. She sensed this, so we stopped. She told me that it seemed like the cream mixture I was using wasn’t working as well as we hoped, since it seemed I was just as tender as I had been the month before, so she wanted to try something else. This time she gave me a mixture of estrogen and testosterone and a numbing agent that I was to apply twice daily. She also gave me some lidocaine gel, which she wants me to use the next time I try to insert my tampon applicator (my ghetto cheap version of dilator #1). I’m supposed to see her again in 6 weeks, with the hopes that there’s some improvement, and that we’ll actually get to some insertion the next time. Just the thought makes me cringe.

Needless to say, I left the building feeling extremely disappointed in myself and more hopeless than I have felt in a very long time. I’ve pretty much been crying ever since, and I just can’t bring myself to feel positive or to even try anything remotely close to insertion. I feel like I’ve backtracked a million steps and I don’t know what to do to keep going.

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.