"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)

Tuesday, December 1, 2009

Emails- Discussion Encouraged!

I have been getting a lot of emails lately, addressing a wide-range of topics. There are some that I'm very eager to talk about and to hear what other thoughts people might have.

First of all, I have had a lot of encouraging emails lately from women offering hope. And I wish I could send those right along to those women who write from a very dark and frightened place. It's difficult to keep in mind that there are many women out there who have gotten completely better with certain treatments. We just don't hear from them as much because now that they're cured, they don't have to search for answers like some of us continue to do.

I've had a lot of women bring up Dr. Goldstein from The Center for Vulvovaginal Disorders in DC. I have heard information about him, but never looked into contacting him about my own case. But it seems that may be a step I want to take now, especially because I am currently without a specialist directing my path. Here is his website in case you would like more information: http://www.cvvd.org/

I already called his office today, but no answer, and still have not heard back from the message I left. I will try again tomorrow. I am curious to see the next appointment he has available for new patients and if he takes my insurance. I think at this point I really need to go back to a doctor and take a more concrete plan of action. Because while I do feel my hip has been involved in this, I also think my problems are multi-fold and need to be addressed on many fronts.

So I will keep you informed as I learn more about that- has anyone else seen Dr. Goldstein? Comments?

Finally, I've also received several emails discussing intimate relationships with loved ones and the pressure and pain that accompany physical contact. While many too often sexualize vulvar vestibulitis and other vulvovaginal disorders, that doesn't mean that there are difficulties with physical intimacy and sexual relations. These still need to be discussed, and I can see through the emails that many wish they could speak out more about this issue. How do you build a relationship when you feel there's a part of yourself that you can't give? I know a lot of us feel guilty, inadequate, not good enough. This is not healthy for any relationship.

I know a few women have even brought up the topic of fluid sexuality- in this case, beginning to be more drawn to women. With a relationship or intimate friendship with a woman, the playing field if a little different- there's much less guilt and feelings of being "broken," or "sick." When intercourse is removed, it's a lot easier to feel relief. And this might be a confusing topic for those who haven't learned about queer theory or sexuality courses. And I want to get more into it later, but wanted to broach the subject tonight because I know it hasn't been talked about and want others to know that if they have ever thought about it- they're not alone.

I also would love to hear anyone's thoughts or advice about anything in this post. Comment annonymously if you do not feel comfortable, but let's hear what you all have to say.

(On a side note, I'm doing much better as far as my tonsils are conscerned. I am almost back to normal after a long two weeks. It's nice to taste solid food again. Starting up physical therapy next week, as well as the gym and dilators at night.)

7 comments:

Lora said...

Maintaining a sexual relationship is so hard. I'm married, and thankfully have a amazingly understanding husband, but I don't think I'd have a relationship with a man if we were to split.

I have always been "fluid" in my preferences, but I think that my symptoms and pain levels would keep me from having sex with another man.

It's just so frustrating to have to say 'not tonight dear' every other time. Or every time. I wish I could just have sex without worrying about how my next few days will go. Wondering if I will be able to function, to sit, to LIVE.

I still have a sex drive, and would love to initiate sexy stuff without feeling like I have to go all the way. My husband never forces, but I end up feeling guilty and inferior and terrible and and and.
I feel like with a woman, it would be so much easier because there would never be penetration.

(also, I blog at www.mychassis.blogspot.com
it's not listed on my blogger profile.)

Anonymous said...

Thank you Tamra for your thoughtful post. I am recently single, after ending a four year relationship. My ex is a lovely person, and was very patient/caring about the vulvodynia. We just realized that we weren't meant to be life partners.

I have dated some since the split. I even had intercourse with one guy, without telling him about the vulvodynia. But I didn't feel pressured to sleep with him. It was weirdly wonderful to be with a guy who didn't know, who treated me like an object of desire and not a fragile doll he might break. It was very passionate, and most of the pain was felt afterward and not during. Of course, I could not repeat this on a frequent basis. But I felt sexy for the first time in years.

I'm reluctant to get serious with any one at the moment--to explain my story from the very beginning, to feel like less of a woman. When I'm single, I can pretend (to myself) more easily that I'm normal. Being in a relationship reminded me on a daily basis that I wasn't.

Still, I have spent most of my 20s in two loving, long-term relationships, and I know I would like eventually to be in another. I plan to use my time as a single woman to concentrate 100% on my health--to seek out some new therapies and support.

It is heartening to know I'm not the only person struggling to keep a sense of my femininity/sexuality. Best of luck to all of you out there. xx

Ali said...

Hi,

I'm not sure if I mentioned this, but I had a really, really, really HORRIBLE experience with Dr. Goldstein. He led me down a very bad path and I just feel lucky I was able to get out of his care and onto someone better. I don't want to get into it here, but please feel free to shoot me an email if you want to talk about it. I think there are some great gynecologists (especially in NYC) who can follow more complicated pelvic issues and who are far kinder than Dr. Goldstein.

Moreen said...

Hey Tamra,

I'm currently seeing Dr. Goldstein. He is not bad. He doesn't take insurance, though, and my first visit was about $1,500, my next two were about $225 each, and my last one was about $500. Kind of a lot. I do respect him and I think he is talented man. However, I'm also getting the feeling that's he's starting to pushing me to have the surgery, which again he would need cash for. So, I am getting a little wary.

Anonymous said...

Tamara,
I'm sorry you're going through such tremendous pain! I more than anyone can relate as a college student who has struggled with similar experiences for the last 2 years. I hope that my journey can offer some insight. First and foremost, I struggled with spending Dr. Goldstein's rates initially. But after seeing over 10 "specialists" prior to him, it is safe to say he is worth every penny. Contact LauraLee in his office, she is fabulous. Explain your story to her and articulate that you've been working with Stacey (they work closely with one another). Within 10minutes of my first appointment, he was able to diagnosis me and develop a clear plan of attack! You're in good hands at Beyond Basics. Though Stacey can be tough, she knows what she is doing and will help you. Also, see Dania as seeing both of them has really helped me. Anyways, good luck and keep us in the loop!

Anonymous said...

Also, I forgot to mention: Dr. Goldstein was the only doctor who accurately diagnosed my vestibulities. I too have the extra sensitive nerve endings you mentioned in your previous post. However, Goldstein was the first doctor to recognize the tremendously negative impact birth control had on my hormones and in propelling my condition. He recognized I also have pelvic floor syndrome and explained the chronic constipation I've suffered from. He made it clear that surgery is a LAST resort and has worked with me over the last year using various estro-testrone creams to rebalance my hormones. My horomone's are finally back on track and I can have pain free intercourse :) My sex drive goes in waves because I still find myself a bit nervous about sex as I was misguided into having painful intercourse for far too long.

1) At the very least contact Dr. Goldstein's office and speak to Laurelee.
2) Get off birth control
3) Get your hormone levels tested, if you haven't already
4) Join the NVA so you can find a good specialist (AVOID DR. WILLIAM LEDGER AT all costs, only see someone who is prepared to take a multi-faceted approach). Ask Beyond Basics for references on good doctor's. I'm surprised that they haven't sent you to Goldstein already

Sarah said...

Hi Tamra,
I have also made an appointment with Dr. Goldstein and will be seeing him in April. I've heard drastically mixed opinions of him and am a bit nervous about going. Have you been yet? If so, how did it go? Positive or negative?
Thanks
http://downtherevaginalpain.blogspot.com