I am going to talk now. I haven't talked in over a month. Mostly because I have been scared, frustrated, and unwilling to deal with the situation in front of me. But I am going to talk now because I need to. I do not want pity or sympathy... or maybe somewhere deep inside I do. I am going to try and update as best as I can and I want to apologize for the huge shift. I also want to apologize for the mounds of emails I have sitting in my inbox, starred, and unanswered. I have become numb and I have wanted to forget for awhile. I still do, but I need to try and understand where I am right now.
Two weeks after my last post, when I thought the end was near and it was a smooth walk downhill, I had a bad visit in New York. Somehow, without any changes to my normal way of living, I had gotten tremendously worse. I was back to horrible pain when sitting, as well as vaginal pain. On this day in particular, I had woken up late and rushed to the train station and ran to the waiting train and had barely made it through the doors before they closed. Exhausted, I slept on the train, walked the thirty minutes to the office, and then back again, and back on the train. On the way home, I was so close to sleeping through my stop and ending up in Trenton because I was still so exhausted. New York was exhausting. It took every ounce of energy for me to wake up, get in my car, drive to the train station, sit through the train ride, walk the 20 blocks to the office, sit through an appointment, and then repeat it all to go back home. I hate New York. But I did it because I wanted to get better, and I was willing to put in the work to get the results. I had enough after that appointment. I was tired of falling back and having new pains in different areas of my body. I never knew what was going to happen each visit. I wanted something definite, some definite track to work towards because I was going crazy. I was frustrated and upset and exhausted.
That was the last time I went to New York. And I am thrilled that I never have to set foot there again (for PT.) A week later I went to see Dr. Kellogg in Philadelphia for the first time and the visit was incredible. I have seen more doctors and specialists and PTs then I can count, and this is the first time I really felt connected to my doctor. She was very knowledgeable and knew what she was talking about. And instead of feeling sorry for me, she came up with a plan of attack. A series of steps. I walked into a doctor office with something wrong, and she told me how to fix it. Imagine! Isn't that how it's always supposed to be?
Lots of information about the visit to Dr. Kellogg. First, she did a test where I went to the bathroom and then saw how much urine I still had inside me. I had some, which means my pelvic muscles are obviously weak. Then we did the internal and external exams. My favorite. I don't have to tell you how painful. But it seems that my "vestibulitis" or my skin right around the vulva is not too bad. I was told a 5 on a scale from 1-10 of her patients. An internal vaginal exam was also not bad- there's really nothing wrong there. However, upon a rectal exam, Dr. Kellogg called me, and I quote, "a train wreck." Apparently my pelvic floor is so horribly out of place and messed up. I am one of the worst cases she's seen, but thankfully not the absolute worst. This is why I've been having such problems sitting. This is getting long already, so let's get to her plan of attack. Right now I'm on a bunch of medications. I just finished my yeast infection medicine (I was called a few days after my exam to tell me my culture had come back positive. This is going on at least one yeast infection a month, so when I go see her in a week, I'm going to see what I can do. I eat yogurt all the time and take a probiodic, so I'm not sure what the deal is.) Every day I apply a cromolyn cream twice to the vulva area. Then at night, I take a singulair, which is an anti-asthma medicine, but it's also been used to help muscles relax and relieve tension. Finally (this one's a doozy) I have valum suppositories that I get to stick up my butt every night. Yes. Every night. Jokes are encouraged about this because I'm still in shock.
So, these are the current medications I'm taking. I'm a little nervous because some can affect your mood and make you tired. And that's a horrible flashback to two years ago when I was put on anti-depressants for pain. Right now I do not feel like myself, but I don't think it's entirely because of the medication. Trust me, I have plenty of other things going on in my life that are stressing me out and making me not myself. But I want these to work desperately, so I am just waiting cautiously to see how things progress.
I have a feeling that more aggressive treatments are going to be necessary. I'll get into this at a later date, but if these medicines don't start working, then it looks like I'm going to need botox injections directly into the trigger points that are causing me so much pain. Great. Well, it's not like I haven't had needles in my vagina before. Bring it on. I go see Dr. Kellogg this Wednesday morning, so I'm sure I'll have more information after that visit.
Almost done, I promise. Now that I'm not going into New York anymore, I am seeing a new PT right outside Philadelphia at Body ReBuilders. I went yesterday for my first visit, and I'm very impressed so far. First of all, they have an actual, beautiful gym. So after my manual work, I'm doing cardio, and hip strengthening training, core training, etc. It's a good fit. My new PT evaluated me and told me where we need to work and where I'm the weakest. She wanted to see me three times a week. I almost laughed in her face. Do doctors not realize I'm in school? Somehow I figured out a way to go twice a week. It'll be two hours of driving and probably an hour and a half there, but it's worth it. It's worth it. I'll find the time. I'll post the new exercises I have to do at another later point. The last bit is my right hip has been aggravating me for the past week or so. There's a possibility I might have a tear in that one as well. I am hoping to anyone that will hear me that this is not the case. I don't want to think about another surgery and another recovery. But I need to call Dr. Coleman and get imaging done on that hip ASAP.
So that catches you up on the past month. I am sorry that I have been so far removed and unable to answer questions. But honestly, on the other hand, I'm not. Sometimes I need to just run away, escape, forget that this exists. But it does and I'm taking control right now. How am I doing? I'm still tired and just exhausted. This seems like a full time job and my studies are suffering at school. Not that I'm failing- so far I'm still getting A's. But I'm behind in my thesis and I just don't see how I'm going to get the work done to finish out this year. And you know what? It's not fair. The amount of hours I put in every week to see and call doctors, to do exercises and take medicine. It's too much. The worst part is I'm tired of explaining to professors and to friends. I'm tired of giving excuses of why I can't be places or get things done on time. This has been almost four years of excuses. I'm tired of needing help. I'm tired of being vulnerable. I'm tired of being in pain. I'm tired of carrying this weight.
This past weekend I was in the Vagina Monologues on campus. For those of you who don't know, they are an activist production committed to ending violence against women. I did the Monologue "Because He Liked to Look at It," more commonly referred to as "Bob." The first line of my monologue is "This is how I came to love my vagina." I said it with a smile because my character would have done the same. But every single performance, it was a lie. And every single performance I wanted to say those words and not act them. I'm lost right now. This past month I've run around to many places and seen different people, possibly trying to find something, to try and create my own comfort. I've given up in the lust and love department. It is too hard and just not possible for me right now. I don't know if it's because I can't handle it or others can't handle it. But right now I need to just concentrate on somehow making it through the end of this semester and graduating. And I need to put all my energy into my health and getting better. I need to keep pushing. I think am on the right track and am actually very hopeful, especially with this new specialist. But that doesn't stop me from being absolutely and utterly exhausted.
So I finally talked. And I don't want it to upset anyone. It is not directed towards anyone and it is not call for help or attention. If anything, it's me finally getting my act together and trying to sort through my own problems. Right now I feel like my self is broken in all these tiny pieces and it was too overwhelming before to put back together. But now I'm ready to put in the time and start to find myself again. Thank you for listening.
Since this website is for people to communicate and help each other out, i do believe i wrote a comment on one of your previous posts asking if anyone had checked your pelvic floor muscles since this whole hip labral tear problem is the same thing we both suffer from. It would have been beneficial for you to look into it back when i mentioned it to you and it could have saved you some pain and bad days... Pelvic floor dysfunction is much more a part of vaginal vulvar and pelvic pain than most people realize. I suggest you do your research on it since pelvic floor dysf, can actually cause vestibulits alone... Botox is the best result, i have been getting injections for a year now. Good luck :)