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.
7 comments:
hi tamra - i stumbled on your page after googling "vestibulitus steroid injection." i have been struggling for about 6 years with VVS, and am looking for other possible courses of treatment. i just wanted to say thanks so much for sharing your experiences, the next time i go to my gyn i'll have to ask about the steroid shots, even though they sound wildly unpleasant... but hey, like you said, if they help in the long run, the pain is worth it.
good luck with your upcoming shots!
hi, i have had vvs for about 5 years now and i heard about the injections through the american drama series private practice, ironic considering all my research and hard work at the hospital for 4 years. thankyou for writing about your experiences, they do sound really painfull but if its the only way, hey id rather have that than a lifetime of painfull sex, i hope it all works out for you, and hopefully me too x
Hi. I am so happy that I came across this blog. I have never done this before, but I am just relieved that other woman feel the same way as me. I have VV since August 2006. It happened a week after my wedding. The whole newlywed phase,and being able to get intimate with my husband never really happened. That totally sucks. It's now going on 3 years since I've had this terrible condition. The only support that I have is my husband. My family thinks it's all in my head. Yeah, like I'd make up this constant burning!! i wouldn't wish this on my worst enemy. I have been to Dr. Nirjey's office many times. I am finally to the point that they want to do the steroid injections. Although I'm not looking forward to the pain, I want to get some sort of relief. I've discovered that my burning seems to happen when I sit all day at work. There really is no way around it. I sit at a computer or at a table to work with students. I've been off of work for 3 days now and guess what? No symptoms. I'm wondering if there is a connection between the pressure of sitting that causes the burning. Has anyone else noticed this? I hope that the injections work. My husband and I would like to have a baby this year, and well...I don't want to be pregnant and have burning. I do reccommend reading the book, The Vulvodynia Survival Guide. I read it 3 times. What helped me is having a list of treatment options. Also, be assertive with any doctor that you discuss this condition with. You can order the book through Amazon . Any tips would be appreciated.
Hi Tamra! Thank you so much for posting this, I wish I could have found your blog earlier today. I had a lot of trouble finding anything on the injections for VV. I have been dealing with this for about a year now and even had my own doctor made me feel as if this was all in my head. She actually had me go through three painful vaginal ultrasounds and several pelvic exams only to have her nurse call me TWO WEEKS after my last ultrasound and tell me that I was completely fine and could stop worrying about the problems now. Are you kidding?!?! I also had several other problems due to being on and off BC (Nuva-ring) for the last 8 months because she couldnt decide whether or not I was allergic... Turns out, I am not, so all the side effects of being on and off the hormones wreaked havoc on my body and my cycle making it even harder to distinguish between symptoms from the lack of hormones and all the other strange pain I was having for no reason. But anyways, I finally got in to see a specialist and after only the first appointment, he was able to tell me that I had VV. He suggested several options (physical therapy and things of this sort- which I thought was strange at first- but said he hadnt heard of these options working well) that the first course of action should be the Kenalog injections. So I made my appointment for two weeks later, which was today. So when I went in today, he mentioned that he would be mixing the Kenalog with Lidocaine which I am highly allergic to. Obviously, then this meant that I could not have any anesthetic at all. I was already scared, but this truly made me extremely nervous. I had three injections this afternoon, about 20 seconds each. They were terribly painful but I held the hand of the med student and she assured me it would all be over soon, which it was. I would certainly say that the actual injections were worse than the pain or soreness I am feeling 5 hours later, so I am optimistic. I really hope that this works as this is also my last stop before surgery (as I said earlier, my doctor has already dismissed the other options). Good luck to everyone who comes across this page... I wish all of you the best in finding answers to your pain. Don't give up, don't get discouraged and don't let anyone make you feel like your pain is not real.
I am having my second steroid injection this afternoon. My problem I feel my Doctor is not confident. He gives me one at a time. 4 weeks of injections is how he plans to do it. I had vestule surgery in 2008. I now have Prudendal nerve damage. I live with so much pain. How do you find someone who knows about prudendal neuralgia? No one I have seen thinks there is much hope for the pain. Just drugs.
Linda
Tamra...
I have absolutely no pain threshold. I still cry when I get IV's. I have tried Lyrica to try to help w/ my pain but after 6 months it was working so I stopped taking it. I know that the shots are the easiest fix but not sure I can go through with it.
Do you know how many rounds you have to do total? I don't want the injections if I just have to keep doing them every week.
Steroids can really help if not abused. It is always advisable to seek for someone professional before administering injections.
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