Monday, November 3, 2014

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.

7 comments:

Anonymous said...

Hi Christina!

I would like to contact with you per e-mail. Is it possible?

Thank You!
Orsolya

MF said...

Hi Christina,

I'm not sure if you are still reading comments from this blog, but I thought I'd leave a note. I found your blog when looking online for information about "the surgery" before I went under the knife. Thank you so much for putting your information out there. We both know the lack of info out there is definitely daunting when it comes to this condition!

Anyway, I'm 12 days post op, and I'm starting a blog in hopes to help others as you helped me while I'm stuck home from work! I am in the process of backlogging the countless other treatments I tried before the surgery. The site is http://painfulvaginamonologues.tumblr.com if you want to connect!

Meghan

Anonymous said...

Hello! Are you still active on your blog? I would love to connect. I was recently diagnosed by Dr. Hodges at Baylor Hospital in Houston. Do you have an email?

Anonymous said...

Yes, I am not actively posting on the blog but I'm still here. I think there is a link on the blog to email me... vestibulectomyjournal@gmail.com

Anonymous said...

Perfect! I emailed you!

lina dhingra said...

Thanks for sharing very informative blog . Skin Treatment in India

Anonymous said...

Love that you included this topic in your blog. I also thought there was such a stigma around Botox but tried it for the first time at 30 and really loved the results. Due to the price I am trying to limit how frequently I get it, but I saw the results and truly loved them!