"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)

Sunday, October 12, 2008

I left my doubts in San Francisco

Some might deem canceling a highly invasive surgery and deciding to fly out to San Francisco to see a physical therapist recommended by online blog readers quite crazy. However, it turned out to be the best decision I ever made.

I guess it makes sense to start at the beginning. I went to see Elizabeth Rummer at the Pelvic Pain Rehab Center on Friday. I immediately got a good feeling when I walked into the office because they had fancy cushions on their waiting room chairs. Imagine that- providing cushions for patients who have chronic pain problems... (The cushion was fabulous- some sort of gel that is currently unavailable to buy, but Liz said she'd keep me updated as they tried to find a new cushion maker.)

My appointment began with about a half hour of just talking about all my medical history, previous symptoms, basically filling Liz in about the past year and 3 months. Not only that, but she wanted to know other medical history, like the fact that I was born with an inverted hip bone on my left side and I tore my ACL while playing soccer.

After the long talk she began the examination. She did the dreaded Q-tip test, but for once it wasn't an awful experience. She was very slow and gentle and told me that I was sensitive just around 4:00-8:00 (of my vulva.) The next hour she proceeded to do intense therapy on me. She bagan by doing external therapy, stimulating my muscles and connective tissue around the pelvic area. If you imagine the vagina as a triangle, she branched out on all three sides. Massaging isn't the proper word, it was harder than that. Certain parts were pretty painful, but easy to tolerate. What is interesting is that I was in much more pain on the left side than the right. Liz noticed my left side's muscles and tissue were much tighter. This point was further observed upon the inside examination and therapy.

Her theory is that
my left hip was never corrected as a child and may have initiated muscle imbalances, which my body compromised for so I could walk, but which has now evolved into pelvic floor dysfunction. The muscle imbalances cause my nerves to be hypo-sensative and since a lot of nervew congregate around the pelvic floor, that's where I'm feeling the effects.

The internal therapy hurt a lot in the beginning, but slowly I began to relax and not feel as much. Liz said she felt my muscles relax and respond to the treatment a few times, which is good news for my first physical therapy.

The entire appointment took over two hours and I learned a lot from Liz. Over 80% of her patients have vulvar vestibulitis, and she had 3 other people fly in this past week from across the country. It was comforting to know I was in the right place. She is referring me to Stacey Futterman at Beyond Basics in New York for therapy once or twice a week. And she also believes that in a year, I will be fully healed. To her, fully healed means no cushion, bike riding, tampon-using, sexually functioning, no pain ever again healed. I can't believe it. I've been so happy, but still a little weary about getting my hopes too high up.

To wrap up this long post, I just want to jot down some other points Liz made before I forget them:
-I've been wearing 100% cotton bikini underwear from VS, but apparently the elastic is too tight for me. I'm going out tomorrow to buy elastic-less underwear that aren't irritating.
-I can continue to be as active as I want, but she recommended that if it wasn't important to me, to not ride a bicycle again. Even after I'm better, the seat is way too small and puts too much pressure on the pelvic area. This I don't care about- it's something very easy to give up.
-She said I would be sore a couple days after therapy, especially externally. (She said it would feel like I had gotten beaten up.) This was definitely true. It's been 2 days since therapy, and I'm still very sore. It seems to be the worst along my two bikini lines and the right below my top underwear line. But I like being sore because I like feeling that progress is being made.
-Physical therapy is not a magic switch that's going to cure VVS one day. Slowly, my symptoms will begin to improve and I will feel a decrease in pain levels. I just need to stay patient.

I'm very tired from traveling all day, so I think that's it for now. If you have any other questions, please feel free to ask. Again, thank you everyone for reading; it is because of you that I decided to fly cross country and finally get some answers and hope. Good night.

10 comments:

Anonymous said...

There aren't any words to describe how happy I am for you! Tamra, you are one of the most important people in my life and if you need anything I'm here for you. To be such a strong person, you constantly motivate the people around you.

I'm so inspired by all the important decisions you make on a daily basis.

You know where my heart is <3

Anonymous said...

Like I said last night, I am so so glad to hear good news! It sounds like you finally found someone who knows what she's talking about.

CP said...

Dear Tamra,

I am so so so happy for you!!! I can't even tell you how thrilled I am that you got to the right place and got such a thorough evaluation and are now on the right track--a track that I just know will lead you straight to pain-freedom!!! I am so inspired by your take charge attitude and by your strength and determination. You will get better b/c you have already won half the battle! Looking forward to reading your blog and sharing experiences with you--soon we'll both be blogging about other, much more fun stuff:) xo, BB:)

Anonymous said...

I've seen Liz (Stephanie's partner) for just over a year now. I have NO MORE vestibulitis and my overall burning sensation is gone. I went from being almost disabled to owning my own business and getting pregnant. hang in there. It will get better. I am SO HAPPY for you. If you ever want to chat, feel free to e-mail me.
Lindsey
gaia_ca at yahoo dot com

Anonymous said...

Tamra, I just found your blog by accident and I just about cried with relief, because I'm 21 and have been suffering from VV for over three years. I really want to talk to you about your experiences...I really need someone to talk to. What's your e-mail address?

Tamra said...

Andy,

You can contact me at twroblesky@gmail.com

Anonymous said...

Tamra,

I came across your blog online one night on accident, and I can't tell you how much your writing has helped me and given me hope that there are treatments to VVS. I'm 25 and I've was diagnosed with VVS almost one year ago, after some chronic untreated yeast infections. I was also recommended to Dr. Nyirjesy,and I have an appointment with him in early January. I'm thinking of visiting one of your physical therapists, either in San Fransisco or New York as next steps. I'm just not sure if I should just go to the PT in NY or go to the one in San Fransisco first. Any thoughts?

Tamra said...

Hey,

Thank you for reading. I'd like to personally address your question, so you contact me at twroblesky@gmail.com and I can also send you my phone number so we can figure out a good plan for you.

Bria said...

Tamara,

Thank you for your blog. I live in SF and suffer from VVS. I have been debating the physical therapy, but am no longer debating.

Btw, I had about a year of relief after a steroid injection at 4:00 and 8:00 given at the Women's Healthcare Clinic at the University of Washington. They are a great clinic for this problem.

Thank you!

Anonymous said...

My 23 year old daughter was just diagnosed with VVS; we live in the Houston/Galveston area and are wondering if the PT in SF or NY may be able to recommend a PT in our area. I am not on board with the idea of surgery if it can be avoided. Your blog & your story are encouraging. Thank you ~ Josiegeo@aol.com, my daughter: gabbigeo@aol.com