I've been thinking all day what to make of today's injections. I'm not even sure what to write. Maybe someone can help me figure it out. I thought today was a pretty pivotal appointment- it was my sixth injection and if I wasn't getting any better it would be my last, leaving surgery as my last option. If I was getting better, I'd set up 6 more weeks of 12 injections. I think that if I'm not better by those 6 weeks, I stop because my doctor gave me the impression this treatment only lasts 12 weeks.
I guess I'm upset because I didn't get that surge of hope I was hoping desperately for. I went through the same motions today and got the two needles. The right side didn't hurt as much, but the left side hurt a lot more. The exam itself felt to be about the same to me, possibly a little better. But it was still unbearable. I didn't bleed as much this time after the injections, which was a positive note. Also, my doctor said that the redness around the vulva was very minimal now, which is a great improvement. I just don't understand why I'm not feeling better pain-wise. I'm still hanging on to the hope that it'll come in time.
My doctor and I decided to go for 6 more weeks. He felt that if it was feeling a little bit better, it was worth trying. I asked him if I should be feeling a considerable amount better, and he said most are 100% by the 6th injection, which I am clearly not. I asked if it was worth it, and he seems to think so. I guess I don't have another choice and I might as well keep trying it. At this point, it's easy to separate myself from the pain- it's becoming second nature and part of my routine. "What are you doing today Tamra?" "Nothing much, just playing tennis, grabbing breakfast, and getting needle injections in my vagina."
All humor aside, I'm so glad that I'm going again for 6 more weeks. It gives me 6 more weeks of hope. I honestly don't want to stop them, because then there is nothing I can possibly do until I have time to do the surgery- which at the earliest wouldn't happen until the summer. As crazy as it sounds, I would choose to go in every week from now until the end of the school year, just so I feel like I'm doing something. I'm so scared to be without treatment; I don't want to feel helpless. I'm a very proactive person, and I constantly need to be moving and doing things. The last thing I need is to just "deal with it" for the rest of the school year.
So I really don't know how to feel right now. I certainly don't want to scream cries of joy from the rooftop, but I'm not depressed either. I'm bummed I didn't get what I wanted today. I still don't know if they'll work or what will happen, and I'm just entering the cycle yet again. But on the other hand, I'm happy I'm still doing something and still have hope to hold on to.
It's been over a year now since I first starting having pain- I've forgotten what it feels like to live without it. I'm in the process of reevaluating how I've handled everything. One thing I'd like to change is the way I feel about myself. I still haven't felt good about myself in a long time. It's so frustrating and difficult and impossible to explain to anyone who isn't going through it. I don't feel hot, I don't feel like a sexual being, I don't feel wanted, I don't feel like I have anything to offer... it's many things. I am glad that I'm single, because then I don't feel added pressure to get better and feel guilty all the time. Hopefully others can vent about it too so I don't feel like an idiot.
Right now I'm just keeping busy and chugging forward. It's the only way I know. Until next week.
Monday, August 25, 2008
Friday, August 15, 2008
Good News!
I can barely contain my excitement as I type. Finally I have good news to report!
Yesterday was my 5th steroid injection. As I said before, I've been getting two needles on either side of the vulva once every week. I go in 6 times, and if we see improvement, then I go in for 6 more weeks and hopefully by then I will be healthy.
I walked in at 8 AM sharp and went through the standard procedure. However, during the exam, Dr. Nyirjesy told me I was less red in the area and it had improved. The exam also didn't hurt nearly as much as it usually does. Then, I barely felt the right needle at all. (The left needle I did feel a lot, but that's because it also hit a small blood vessel.) After the injections, I had to wait a little bit longer with gauze between my legs to stop the bleeding and then Nyirjesy came back in to talk to me. He was very pleased with the exam and thought I was improving. I nearly broke down in the office. Is it possible that after all this, that in 7 weeks I could possibly be all better?
I practically skipped down the streets of Philadelphia saying good morning to everyone I met. Some of them must have thought I was crazy, but I didn't care. I finally had good news, I finally had hope to grab on to. I'm trying hard not to get my hopes up until my next appointment. If I've improved even more by the next appointment, then I will be going back for 6 more weeks. Could this be the beginning of the end? I pray and I hope it is. But keep your fingers crossed for me just in case ;-)
Yesterday was my 5th steroid injection. As I said before, I've been getting two needles on either side of the vulva once every week. I go in 6 times, and if we see improvement, then I go in for 6 more weeks and hopefully by then I will be healthy.
I walked in at 8 AM sharp and went through the standard procedure. However, during the exam, Dr. Nyirjesy told me I was less red in the area and it had improved. The exam also didn't hurt nearly as much as it usually does. Then, I barely felt the right needle at all. (The left needle I did feel a lot, but that's because it also hit a small blood vessel.) After the injections, I had to wait a little bit longer with gauze between my legs to stop the bleeding and then Nyirjesy came back in to talk to me. He was very pleased with the exam and thought I was improving. I nearly broke down in the office. Is it possible that after all this, that in 7 weeks I could possibly be all better?
I practically skipped down the streets of Philadelphia saying good morning to everyone I met. Some of them must have thought I was crazy, but I didn't care. I finally had good news, I finally had hope to grab on to. I'm trying hard not to get my hopes up until my next appointment. If I've improved even more by the next appointment, then I will be going back for 6 more weeks. Could this be the beginning of the end? I pray and I hope it is. But keep your fingers crossed for me just in case ;-)
Friday, August 8, 2008
3rd Injection
I am amazed and overwhelmed by the kindness of people. Today I went in for my third steroid injection. Needless to say, I wasn't thrilled. I told my doctor about the bleeding and pain from the last injection. He said the bleeding can happen at times and to just place a cool cloth in between my knees and close them. He also said the pain levels can alter from shot to shot. As long as I wasn't generally worse, it is still too soon to tell.
We went ahead with the two needles. I had a new audience today- another graduate student. I always wonder what's on their minds when they see me. Like I said previously, I don't care how many people are in the room anymore- I've been put in the limelight so much that it doesn't matter. And, if this helps someone learn more about vulvar vestibulitis, then more people can be treated properly and maybe a cure can finally be found.
I was still in a little bit of pain from the last injection, so this week's wasn't particularly fun. I just closed my eyes and clenched my hands together trying to focus on breathing and my knees. Right in the middle of the first needle, the nurse came right up to me and grabbed my hand and told me to squeeze as tight as I could. She had talked to me in the room during the beginning of the exam and was actually interested in my life. She said she was so proud of me for climbing Kilimanjaro. She actually treated me like a human being. Then, her simple act of coming over to help me through just gave me tremendous strength. I thank her dearly for her kindness.
I waited longer than usual in the room to make sure I didn't bleed after I left the hospital. Then I slowly walked back and took the train home. I was in a lot of pain for about an hour after the needles. It was a stabbing and sometimes burning pain that came in waves. I found it was better to just lie down and take the hits as they came. When they were over, I was just in a state of soreness. I definitely needed my cushion to sit down or I just tried to avoid sitting altogether.
Next week I should start to see if these are even working. As crazy as it sounds, I'd rather just keep continuing with the shots each week- they make me feel like I'm doing something and gives me a schedule to follow. If I'm told next week that they aren't working, then I'll be lost. I'll only have one option left.
But right now I'm just going to keep on moving. My tennis season is coming up and I want to start training for mountain climbing. My goal is to summit the 7 peaks- the 7 tallest points on ever continent. I already have one down. The next would would be Elbrus in Moscow. I think mountain climbing will give me something else to focus on and prove to myself I'm healthy and not limited in what I can accomplish.
We went ahead with the two needles. I had a new audience today- another graduate student. I always wonder what's on their minds when they see me. Like I said previously, I don't care how many people are in the room anymore- I've been put in the limelight so much that it doesn't matter. And, if this helps someone learn more about vulvar vestibulitis, then more people can be treated properly and maybe a cure can finally be found.
I was still in a little bit of pain from the last injection, so this week's wasn't particularly fun. I just closed my eyes and clenched my hands together trying to focus on breathing and my knees. Right in the middle of the first needle, the nurse came right up to me and grabbed my hand and told me to squeeze as tight as I could. She had talked to me in the room during the beginning of the exam and was actually interested in my life. She said she was so proud of me for climbing Kilimanjaro. She actually treated me like a human being. Then, her simple act of coming over to help me through just gave me tremendous strength. I thank her dearly for her kindness.
I waited longer than usual in the room to make sure I didn't bleed after I left the hospital. Then I slowly walked back and took the train home. I was in a lot of pain for about an hour after the needles. It was a stabbing and sometimes burning pain that came in waves. I found it was better to just lie down and take the hits as they came. When they were over, I was just in a state of soreness. I definitely needed my cushion to sit down or I just tried to avoid sitting altogether.
Next week I should start to see if these are even working. As crazy as it sounds, I'd rather just keep continuing with the shots each week- they make me feel like I'm doing something and gives me a schedule to follow. If I'm told next week that they aren't working, then I'll be lost. I'll only have one option left.
But right now I'm just going to keep on moving. My tennis season is coming up and I want to start training for mountain climbing. My goal is to summit the 7 peaks- the 7 tallest points on ever continent. I already have one down. The next would would be Elbrus in Moscow. I think mountain climbing will give me something else to focus on and prove to myself I'm healthy and not limited in what I can accomplish.
Sunday, August 3, 2008
Steroid Injections
I apologize for not updating sooner- life has been crazy these days.
My first steroid injection was Wednesday, July 25th at the lovely hour of 8 AM. The injections are so early because I can be the first appointment of the day and not have to sit in the waiting room and waste my entire day. Luckily for me, I was able to dance Tuesday night in Philly and then stay with a friend who lives in Center City. It was so nice to walk to the hospital and not have to commute in the morning. I was obviously very nervous for my first injections. My parents were worried as well and had offered to get a hotel and spend the night with me and then all go in together in the morning. I told them although it would be nice to have someone with me- it's going to be awful no matter what. I'd rather them save their money and take me out somewhere after my injections.
I walked in alone Wednesday morning, but in a good mindset. I had just spent the previous night doing something I absolutely love. I definitely recommend spending the night before injections doing a fun activity and not staying home and thinking about what's to come. The busier I am and the more distractions I have leaves me less time to think about what's actually happening. Because let's face it- I have to get at least 12 needles into my vulva without numbing medication. And this is my last option before surgery. This is why I can't think about it too much.
Once I got called into the exam room, Dr. Nyirjesy, a nurse, and the nurse practitioner came in. He told me to concentrate on keeping my knees relaxed and spread wide apart. (I almost laughed at this. There was certainly no way I was going to convince my knees to relax.) It happened rather quickly- he told me to expect the needle, and then it went in. The worst parts of the pain are when the needle is going in and being removed. But I just closed my eyes, squeezed my fingers, and told myself it would be over soon. The pain level was very bad- it takes a lot for me to not fly off the table, but since it only lasted 10 seconds, it was bearable. He asked me if I wanted a break and I just said do the next one quickly. I don't recommend taking a break- you might as well just get it all over with. In about 25 seconds, the injections are done and you can breathe again. I was very happy with the first round of injections- I didn't feel that much pain afterwards, just a very heavy feeling. I had to sit in the exam room for about 20 minutes with gauze inbetween my legs to soak up some of the drops of blood, and then I was free to leave. First round done. I was feeling good, and was no longer scared.
My second round of injections were last Wednesday, the 2nd. Again, I was able to go dancing Tuesday night and stay with friends in the city, putting me in a great mood and making my commute easy. It's important not to be stressed going into these appointments. The same routine occured again. This time we had a grad student join us in the room. Sometimes it gets to be quite the party because everyone wants to see the injections. Many would probably be uncomfortable being on display, but at this point, I really couldn't care less who sees my vagina. Look all you want, just figure out a way to fix it. I went through another 25 seconds of extreme pain, but it was so short that it was easy to get through. Then I sat with the gauze for another 20 minutes waiting. I noticed a lot more pain after the injections this time. Dr. Nyirjsey always uses his fingers to check pain levels of certain areas after giving me the steroids to check if he put them in the correct place. These past two times it hasn't hurt when he touched the inside walls of my vagina, but the insertion hurt a lot. After my appointment, I was a little uncomfortable walking and sitting the rest of the day. I used my cushion, but noticed a pain on both sides of the vulva. For the past couple of days that pain has been coming and going. I'm going to ask about it at my next appointment. I'm hoping it's a "gets worse before gets better" thing, but I hope it's not a negative effect of the injections. Right now I'm just trying to avoid sitting down for long periods of time.
I'm visiting my best friend in Chicago for the week, so my next injection won't be until Friday morning. I'm hoping for the best. Apparently we start to see if they are working by the fourth week, which is getting closer and closer. Right now I really don't want to analyze what's happening; I'd just rather not think deeply about it now. I'm trying to focus on other aspects of my life, which I'm finding is calming me down and putting me in a good mindset during these appointments.
My first steroid injection was Wednesday, July 25th at the lovely hour of 8 AM. The injections are so early because I can be the first appointment of the day and not have to sit in the waiting room and waste my entire day. Luckily for me, I was able to dance Tuesday night in Philly and then stay with a friend who lives in Center City. It was so nice to walk to the hospital and not have to commute in the morning. I was obviously very nervous for my first injections. My parents were worried as well and had offered to get a hotel and spend the night with me and then all go in together in the morning. I told them although it would be nice to have someone with me- it's going to be awful no matter what. I'd rather them save their money and take me out somewhere after my injections.
I walked in alone Wednesday morning, but in a good mindset. I had just spent the previous night doing something I absolutely love. I definitely recommend spending the night before injections doing a fun activity and not staying home and thinking about what's to come. The busier I am and the more distractions I have leaves me less time to think about what's actually happening. Because let's face it- I have to get at least 12 needles into my vulva without numbing medication. And this is my last option before surgery. This is why I can't think about it too much.
Once I got called into the exam room, Dr. Nyirjesy, a nurse, and the nurse practitioner came in. He told me to concentrate on keeping my knees relaxed and spread wide apart. (I almost laughed at this. There was certainly no way I was going to convince my knees to relax.) It happened rather quickly- he told me to expect the needle, and then it went in. The worst parts of the pain are when the needle is going in and being removed. But I just closed my eyes, squeezed my fingers, and told myself it would be over soon. The pain level was very bad- it takes a lot for me to not fly off the table, but since it only lasted 10 seconds, it was bearable. He asked me if I wanted a break and I just said do the next one quickly. I don't recommend taking a break- you might as well just get it all over with. In about 25 seconds, the injections are done and you can breathe again. I was very happy with the first round of injections- I didn't feel that much pain afterwards, just a very heavy feeling. I had to sit in the exam room for about 20 minutes with gauze inbetween my legs to soak up some of the drops of blood, and then I was free to leave. First round done. I was feeling good, and was no longer scared.
My second round of injections were last Wednesday, the 2nd. Again, I was able to go dancing Tuesday night and stay with friends in the city, putting me in a great mood and making my commute easy. It's important not to be stressed going into these appointments. The same routine occured again. This time we had a grad student join us in the room. Sometimes it gets to be quite the party because everyone wants to see the injections. Many would probably be uncomfortable being on display, but at this point, I really couldn't care less who sees my vagina. Look all you want, just figure out a way to fix it. I went through another 25 seconds of extreme pain, but it was so short that it was easy to get through. Then I sat with the gauze for another 20 minutes waiting. I noticed a lot more pain after the injections this time. Dr. Nyirjsey always uses his fingers to check pain levels of certain areas after giving me the steroids to check if he put them in the correct place. These past two times it hasn't hurt when he touched the inside walls of my vagina, but the insertion hurt a lot. After my appointment, I was a little uncomfortable walking and sitting the rest of the day. I used my cushion, but noticed a pain on both sides of the vulva. For the past couple of days that pain has been coming and going. I'm going to ask about it at my next appointment. I'm hoping it's a "gets worse before gets better" thing, but I hope it's not a negative effect of the injections. Right now I'm just trying to avoid sitting down for long periods of time.
I'm visiting my best friend in Chicago for the week, so my next injection won't be until Friday morning. I'm hoping for the best. Apparently we start to see if they are working by the fourth week, which is getting closer and closer. Right now I really don't want to analyze what's happening; I'd just rather not think deeply about it now. I'm trying to focus on other aspects of my life, which I'm finding is calming me down and putting me in a good mindset during these appointments.
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