It only took 15 years, but there is HOPE for everyone!

I had a follow-up appointment with my amazing doctor last week. She did the Q-tip test and I am completely pain free except for one tiny spot between 6 and 7 o'clock and only when she applies a lot of pressure. It's not a pain I was able to recognize using my own fingers and applying pressure so I'm not too worried about it. I also had no pain on the other tests/simulations she did. This is the first time I've ever been able to say I am pain free for all intents and purposes.

I'm still on medications and creams:

• oral gabapentin 900mg three times per day
• specially compounded cream: estradiol 0.5mg/ml and estriol 1mg/mg in water washable base hypoallergenic 

She tested my estradiol level and it was 295pg/ml (I might be wrong on the units- will edit later). I was on day 10 of my cycle on the day she tested so it's a little bit high but she said it was okay. We are going to talk later this week via telephone and I'll ask her more about it.

I also should have mentioned in my previous post that I've been taking classical Pilates instruction (one-on-one) three times a week since June. We've been focusing on my posture, which necessarily includes hip alignment. I went to actual vulvodynia PT back in 2010 before my surgery and was told my internal muscles were basically OK - maybe my hips/legs/posture being misaligned has been causing referred pain to my vulva. I know not everyone can afford Pilates, but maybe regular PT might be something you could get. Or even group yoga classes.

Off-topic: I've been Googling and reading as many vulvodynia blogs as I can recently to get a feel what is out there (not much) and I noticed that almost none of the bloggers name their doctor. I think they should. I know they might be worried about being identified, but the probability of that is so low that I think the benefits to other women looking for vulvodynia help outweigh the risks of being identified. So, if you're reading this and you have a blog, please say who is treating your vulvodynia.

My doctor is Anuja Vyas - I've said this many times about her - she is incredible. She is compassionate, attentive, and most importantly, her clinical instincts and knowledge are some of the best I've ever seen. I think some people truly are meant for their professions and she is one of them.

I'm actually moving 1,500 miles away soon but I will fly back to see her as needed to follow-up with my vulvodynia. I think this is something that will always need monitoring at least once a year or so even if I continue to be pain-free. I can't imagine having another doctor-- I've been through everything with Dr. Vyas. I think I was her [very willing] guinea pig for some treatments, like the BOTOX, which she had never done and I had to push her to try and now she uses on other patients.

I feel so much gratitude toward my doctor for all she has done for me, the risks she has taken, her emotional courage and the grit it must take to deal with patients with pain. I am forever thankful that she now sees me on her non-clinic days and sits and talks with me for as long as I need or calls/emails just to see how I'm doing. Dr Vyas has the grace and the grit. That is why she is a good doctor. I think I was the first patient who she went through literally everything with from beginning to (hopefully) end and that naturally bonded us and made the doctor-patient relationship productive. It's comforting to know she's just a text away. It's funny, but even though it was mostly me who would lose hope about this, I think sometimes she was the one losing hope and I was pushing her, like with the botox. See, a collaboration, truly.

Day 5 Post-op vestibulectomy

I just wanted to update everyone on my progress. I am currently Day 5 post-op (I had my vestibulectomy on 11/9/10). Days 1 and 2 post-op were the easiest and days 3 and 4 the most difficult. I think a lot of the anesthesia and the IV pain meds didn't really wear off until the end of day 2. Anyway, today is the first day (evening, actually earlier today I wasn't) that I've been able to sit at my desk and use my normal computer as opposed to my laptop. I am sitting on a very comfy chair, however. Besides that it has been difficult to walk far. Right now I am in the least amount of pain I have been so far.

My doctor did call me on 11/10 like she said she would- she just called later in the evening. She said she had done the procedure from basically the 2 o'clock position to the the 10 o'clock position. She said she did not want to risk going farther up because it was too close to my urethra. The ice has been a lifesaver but I finally don't need it all the time anymore. Now I have more of an intense itching sensation. It really helps to use the bottle of water to rinse the area with when I urinate. Sitz baths also help.

I had a bowel movement on the morning of Day 4 and it did not hurt (I had been taking colace for about a week) but it did cause some bleeding. The bleeding quickly stopped though. I had been worried about "popping" a suture/stitch but my doctor told me that this was not possible. She said she used a mix of some very deep stitches and then some superficial sutures. The area she cut was about 5mm deep and 1cm wide. I read the path report yesterday and it just stated that there was chronic edema (swelling) and inflammation in the sample.

I am a little bit concerned because one of my labia seems to be bigger than the other, but I'm not in any pain. Things do feel tight down there.

I think it is important to emphasize that everyone heals at their own rate and it is really difficult to predict how one will handle the procedure. I am lucky in that I didn't have any issues with the muscles down there, nor did I have more generalized pain down there. I think (I hope) for me that it was really just this localized pain that this procedure will take care of. My doctor is very hopeful too.

I don't know about going back to work about a week after- I don't think I'd feel comfortable sitting at my desk all day, but I can work from home at my leisure so I am fortunate in that regard.

I will be coming back and giving periodic updates on my progress.