"Birds make great sky-circles
of their freedom.
How do they learn it?
They fall, and falling,
they are given wings."

-Rumi (translated by Coleman Barks)

Wednesday, July 2, 2008

Decisions, decisions

I was not looking forward to my specialist visit today. For the past five weeks I've been in Tanzania conducting research and have had no time to focus on being sick. I wasn't able to continue applying the creams in Tanzania because I was afraid the Estrace inserter wouldn't stay sanitary. I also didn't use my cushion for four of the weeks I was away because I felt awkward carrying it around and I didn't feel I needed it. It was so nice not to think about doctor appointments or medication or my next step or physical therapy or pain levels or anything while I was away. I finally had some peace.

I didn't want to fall asleep last night because I knew I'd have to come back to reality today. I didn't want to be reminded of the battle I'm still fighting. It's an exhausting thing to deal with day after day and I just want to be rid of it. As much as I tried to stay in bed today, I had to eventually wake up and drive with my mom into Philadelphia. The people at the OB/GYN at Hahnemann Hospital are extremely warm and friendly towards me, but it doesn't help. I hate being in that waiting room, that examining room, that office. My body immediately stiffens when I walk in and my vulva pulses with pain because it knows what's going to happen.

I went through the standard exam, which hurt a lot more than the last time I went. I expected this because I hadn't been using the creams for 6 weeks. After a quick exam, we went into the office and talked about our options. It seems like I'm down to three options.

1. Do nothing. Sometimes VVS goes away as mysteriously as it arrives. However, most of the statistics show that if you've had it for longer than 6 months, there's a very small chance it will go away on its own. I am coming up on one year with VVS, so it seems like it's here to stay unless I do something about it myself.

2. Steroid Injections. I go into the office once a week for 6 weeks and get two needles inserted. If I am doing better after those 6 weeks, I continue the injections for another 6 weeks. About 50- 60% of patients are cured from the injections.

3. Surgery. I talked about this in previous posts. Surgery is a 3 month healing process, with absolutely no physical activity for 6 weeks. 70% are cured, 20% are better, and 10% remain unchanged.

I really thought that I was going to schedule my surgery this visit. I am so frustrated with this whole process and a quick fix sounded so wonderful. But as my doctor is explaining the surgery, I realized that he's talking about cutting and stitching up my vagina. It's a big part of me and not something I should be taking so lightly. As much as I would love for all of this to be over, I can't rush into surgery. One of the main reasons I didn't opt for surgery this visit is because I play tennis. I'd have to get the surgery in August, before school starts, which would mean I'd miss the fall tennis season completely. And I love the sport and my team too much to do that. Surgery would also ruin the rest of my summer and I wouldn't be able to go on our annual family vacation to Maine and many other things. 

This is why I decided my next step is steroid injections. My doctor is on vacation for two weeks, but starting on the dreaded 23rd of this month, I will be getting two needles inserted into my pain region once a week at 8 AM. I have to admit, I'm very scared. Right now I am jumping off the table in pain when the doctor uses a q-tip to press against different areas of my vulva. I can't and don't want to even imagine what needles are going to feel like. There's also no way for him to numb the area at all. He said it's very painful and I'll be a little red and swollen afterwards, but at least I can still do physical activity. 

I don't know how I'm feeling right now. It's hard to describe. I'm feeling hopeful, but I'm also worried because my options are slowly fading away. What happens if I'm still in pain and there are no more options left? I'm also petrified to go in and get these needles by myself. I usually am pretty independent, but I would love to have someone there to hold my hand. I am just shocked at what the body can go through. But I guess it can always be worse. 

Anyway, that's the update for today. If you've ever gotten steroid injections, please let me know anything or everything about them so I can be prepared.

To all my sisters out there going through this with me- please keep fighting. We can do this.
To all my readers- thank you for taking your time to listen and please educate others. 
Until next time.

4 comments:

Anonymous said...

hi tamra
ask your doctor if he can numb the area with lidocaine before the injections. you can use lidocaine on a regular basis to control pain as well.
also are you able to find anouther pysiotherapist. that one may not have been very good and alot of the time vvs can be cured with pysiotherapy alone.

take care :)

Tamra said...

I asked my doctor and he said there's nothing that works to numb the area.

I was not able to find another pysiotherapist- apparently the machine showed I didn't have pelvic floor dysfunction, my levels were fine. So I don't think even a better one would have worked for me.

Have you ever gotten steroid injections and if so could you tell me more about them?

Anonymous said...

The machines are absolutely not to be trusted. You need to see an excellent PT before doing anything. Such as Rhonda Kotarinos in Chicago or Stephanie Prendergast in San Francisco ( www.pelvicpainrehab.com ) Another great new site is www.pelvicpainmatters.com give PT a shot. Biofeedback, while a good tool, often misreads your pelvic floor as low. Also have you been tested for pudendal neuralgia by someone who knows what they are doing? Join the group happypelvis and read in the files section the article "screening for neuromuscular componants of pelvic pain" by Jerome Weiss. Don't have surgery until you are seen by a different PT, it often makes things worse.

Anonymous said...

hi tamra
you can definatly use 'lidocaine' gel to numb the area, they use it for surgery. you need a prescription for it though.
also you should check out the yahoo group 'happy pelvis' , these girls are going through the same things as you and will be able to offer alot of advise and support. some of them have had the injections as well.