Wednesday, April 7, 2010

The big appointment.

Well, after many months of anticipation, my appointment with Dr. Goldstein has come and gone. I have a lot to say, so hopefully this post will not drone on for too long and make you lose interest.

Obviously this is a big deal. After so many years of half-assed treatments or no treatments at all, after a year and half of physical therapy, which has helped but not completely solved the problem, deciding to go see Dr. Goldstein was a big decision (not to mention an expensive one too). I tend not to get too nervous about things ahead of time, but instead reserve all my nervousness for the day of, at which time I get sick to my stomach and just want to lay down I'm so nervous. It wasn't any different this time. I woke up on Tuesday just feeling nauseous. I know it's just a doctor's appointment, but you know, it's hard. It's hard to talk about, especially to someone new, having to explain the whole situation over again. And I also felt some anxiety about what would he say, would he know what's wrong with me, would he be the big jerk that I've read from other people online? So I was nervous.

Let me mention now that on Sunday I went to the bathroom and low and behold, the toilet paper was pink. Great. My period started a week early two days before my huge vagina appointment. I freaked out. I didn't know if the doctor would even still see me or not. I know that doctors aren't bothered by it, but I wasn't sure if this type of appointment needed a blood-free vagina. However, I called and they said it was fine. But man, worst timing ever right? I felt like crap, I had cramps, and I was really tired. Great way to go into my appointment.

So on to the appointment. Basically the appointment was broken into three segments: consultation, exam, consultation.

Pre-exam consultation: We went into Dr. Goldstein's office and started going over the paperwork that we had filled out prior to coming, about my history and my symptoms. Dr. G asked many detailed questions and was very thorough. I thought that we were prepared, but he asked some questions that I really couldn't answer. Like did they look under the microscope when I was being diagnosed for all those yeast infections during college? I'm really not sure. What were the names of all the yeast medications I took? Again, really no idea. When you're in college and you have a yeast infection, the last thing you're thinking is, "I better write this down because in a few years I'm gonna need to know what I took when I inevitably end up at the vagina doctor".

But all in all, the conversation was relatively painless. Don't get me wrong, any time I have to talk about this stuff it's hard and I cry. But it wasn't too bad. And despite the many negative reviews I've read of Dr. G, he was compassionate, straightforward, and nice. He is as arrogant as they come, there's no denying it, but he wasn't rude nor was he a bully, like I feared he might be. He does, however, think that most doctors are complete idiots, which he never specifically said, but it was clear that he thought so. The only thing he really wasn't open to was my psychologist's recommendation that I start taking anti-anxiety medicine. He felt that since I don't have anxiety in my normal life and I only have it related to this subject, that it really wasn't necessary. We'll see how my therapist feels about this.

The exam: The fun part. Well, the first thing I saw when I walked into the room was a camera and a big computer screen and I thought, oh lord, I'm going to have to look at my vagina on that screen. I was right. My vagina was triple sized and we had live action shots of the whole exam. As you can imagine, I was not super excited about this. No one wants to see their vagina on screen. But I have to say, once I got over the initial humiliation of sitting in a room where four people (me, Dr. G, my husband, and nurse) were looking at my vagina on screen, it was actually quite interesting and informative. He very thoroughly touched each part of my vagina with a cotton swab and asked me questions about how it felt and the level of pain. He showed me the different parts of the vagina and explained them.

Then he sprayed my vagina with vinegar. Yes, you read that right. He sprayed my vagina with vinegar! Never in a million years did I ever think that one thing he might do is spray my vagina with the main ingredient in Italian dressing. He did this to check for skin problems - I guess the vinegar makes them show up or something. But I have to say, that vinegar stung like hell. It was like my vagina was on fire. But fortunately it was only for a couple minutes and then he rinsed it with water. Both Dr. G and the nurse said that it was hard to read me because even when I was describing my pain as a 7 out of 10 I really didn't react in an outward way. They called me stoic. I can tell you that I am an expert at stoic. How do you think I had painful sex with my husband for so long without him knowing just how horrible it felt?

Again, during the exam, Dr. G was very sensitive and supportive. He wasn't a jerk and he didn't make inappropriate jokes (another thing I read somewhere else). His nurse was also very supportive. I can tell that her job is basically to make the patient feel as comfortable as possible. I had my husband there with me for support, but that nurse made me feel like if he wasn't there, she would have given the support I needed. She was there right next to me the whole time, she had her hand on my arm and she was very encouraging, both in what she said and how she acted.

Post-exam consultation: A huge difference between this appointment and most doctor appointments that I've had in my life is that there was absolutely no time constraint. We never once felt like we were being rushed and Dr G took time to explain everything thoroughly. At this point, Dr G was ready to give his diagnosis. So here it is, drum role: I have Vestibulodynia! Dr G then went on to say that this really isn't a diagnosis because it's just like saying I have knee pain. The word dynia means pain in Greek, so vestibulodynia means that I have pain in the vestibule (see diagram to find out where the vestibule is). Makes sense. But he went on to tell me what he believes are the causes of this pain. He believes that there are two:

1)Atrophy of the vestibule tissue - most likely caused by the use of birth control pills. As he explained, birth control pills intentionally lower your estrogen and testosterone, but this can have very negative effects on your vagina (it effects everyone differently so it's basically just a coin toss). The vestibule needs these hormones and without them it goes into atrophy, which causes pain. He has prescribed a gel that he wants me to apply to the area for 3-6 months.

2)Pelvic floor dysfunction - tight muscles. This is what I've been working on at PT and I already know a lot about. But Dr G believes that the reason that PT has only worked up to a point is that I really need to treat the atrophy first before treating the muscles, or else a lot of that muscle work will be useless. This makes a lot of sense because my muscles have made great strides over the past 1.5 years, but I'm still not better. So he recommends that I treat the atrophy first with the gel and then in about 3 months start back up with aggressive PT when my vagina is more ready to receive it. He says that I should be able to have pain-free sex by the end of this year. Then he said, "I know that's a long time..." and both my husband and I were like, "dude, it's been years. If you're right, a few more months is really insignificant."

So there it is. There is more to say, but honestly, this post is getting too long, and I hate reading super long posts. My final thoughts are these: Everyone has different experiences and I certainly don't want to discount the women who said that Dr. Goldstein was horrible. Maybe he was horrible to them, but that was not my experience. For me he was empathetic and supportive and my overall feeling when I left there was a positive one. However, I'm not quite ready to shout his name from the rooftops yet either. I have my diagnosis and I have a plan of attack. I'm not going to say how super-awesome he is until that plan works. When I am having mind-blowing and pain-free sex with my husband, then I'll start singing Dr. Goldstein's praises. Not at the same time. First I will have earth-shattering sex, and then later, when my clothes are back on, I will praise Dr. Golstein! Until then, I will continue working really hard and doing whatever I can to heal my vagina.

Phew!

14 comments:

K said...

The vinegar solution makes skin conditions more visible - notably herpes. Not sayin' you had herpes and even if you did it's so common anyway, there is no shame. Interesting side note: one of the treatments for herpes (Interferon I think?) is sometimes used as a treatment for vulvodynia. Don't know what the criteria for that is though. Didn't need to try it.

The estrogen gel is a pretty mild treatment, it's not too expensive either depending on where you get it from. I think it was like $40 per bottle for me and the bottle lasted a long time.

the girl with pain "down there" said...

I left out of my original post that he did not find any apparent skin conditions with the vinegar. So at least there's that. Thanks for the info about the gel K.

Pearl said...

Glad to see your report. I also have (had?) vestibulitis, or vestibulodynia, as it's now termed. It did cause me extreme pain with sex.

It cleared up after I did numerous things (there's a relevent post on my blog about this), one of which included quitting the pill. Obviously, the pudendal neuralgia is now at the forefront of my mind, so I'm not looking for signs of vestibulodynia in myself currently.

I think you can improve with the treatment he's prescribed. He is definitely one of the country's leading experts!

I wish you the best of luck.

Sloan said...

Hi,

Thanks for this super-detailed post about your experience with Dr. Goldstein! His thoughts about the timing of PT and other treatments is interesting. I'm curious, does the gel contain estrogen and testosterone, or just estrogen, or anything else?
I hope you heal soon. :)
-Sloan

Aurelia said...

I have desquamative inflammatory vaginitis, which is basically atrophic vaginitis in someone who is not post-menopausal. Estrogen creams and pills my specialist has prsecribed really made a difference for me. I will keep my fingers crossed that the gel he prescribed for for you helps.

Thanks for posting such detailed enteries. Even though my condition is different, I have found it helpful and comforting to follow your blog.

the girl with pain "down there" said...

The gel is called Estradiol and I must admit to not being a completely educated consumer because I'm not sure what all is in there! On the bottle it says 0.03% testosterone 0.1% in cell. I have no idea what "in cell" means but according to the name of the stuff I have to assume that it does have estrogen in it. I hope that answers your question.

Jeanmt said...

God, I'm going to see him May 3rd and just found this post. I'm so nervous (and sure I'll be diagnosed with the same thing you have and given the same treatment) but I didn't know he had the reputation of a bully and arrogant. I know all doctors are like that but it's so so hard to steel yourself for it (always) but especially w hen you are so emotionally and physically vulnerable.

Alp.

I'm glad your appointment went well; will be interested in reading a follow-up.

the girl with pain "down there" said...

I hope my post didn't make you more nervous about seeing him. Like I said, he was arrogant, but also very empathetic, supportive, and understanding. Good luck, and please let me know how it goes! And I can tell you that the build up of nerves in your head beforehand is much worse than the actual experience. You can do it!

making my way towards intuitive eating said...

I saw earlier in your blog that people commented that Dr. Goldstein does not take insurance. Do you mind if I ask how much the appointments are costing you? I have very good health insurance (I'm a teacher) but I guess if he doesn't take it, it doesn't matter!

Thanks so much- your blog is really inspiring me- I was just diagnosed with this a few days ago and am feeling a lot of hope now.

the girl with pain "down there" said...

My first appointment was $1,600 and the follow up I just had was $600. Definitely not cheap, but most insurances do have out of network benefits so you can get some of it back. I'm so glad you're feeling hopeful. I have good days and bad days, but things definitely go better when I can keep my head up.

Anonymous said...

I hope you get this!

I am also been suffering with vulvodynia for a while and am dealing with a load of terrible doctors who have no idea what they are treating. I also have been considering seeing Dr. Goldstein but have been afraid to because I am heard such terrible things about him...shame. Just wondering, has the testosterone/estrogen gel helped at all? I read about this treatment and got a gel compounded but havent really felt that it's helped. Do you happen to know if its effective only in treating vestibulodynia? Hmmm.... anyway, great blog. Reading stories like yours reminds me that I am not alone, though I feel like I am all the time- it's hard not personally knowing anyone else suffering with this.

the girl with pain "down there" said...

Yes I think that the Estradiol gel is working. If you read one of my more recent posts it goes into detail about the differences it has made. My vestibule isn't as sensitive and my hormones are up. I still have work to do and more Estradiol to apply, but I do believe it's working. My hormomes were horrible before I started using it and they have improved in the last 3 months, and I haven't been doing anything else other than using that gel. It works slowly, but it works.

And as far as Dr. Goldstein, I say go see him. You can go to doctor after doctor (as you already have) and get no answers and become more and more discouraged. Dr. G. will give you answers and he will give you a specific plan of action. Yes, he's arrogant, but he knows his stuff and he will help you.

And I'm glad that reading my blog helps you feel not so alone. This problem does make us feel so isolated because, at least for me, I know that everyone else is having sex because they're all having babies! And I'm not. But I read other blogs and feel encouraged so I'm glad this blog is doing that for you.

Anonymous said...

I strongly recommend that you consider seeing a sex therapist. I have and have had several "down there" issues: chronic urinary infections, involuntary contraction of the vagina during intercourse and lichen sclerosus. I saw a dermatologist for the lichen who eventually put me in touch with a sex therapist. I would have a urinary infection literally after every intercourse, intercourse was painful because of the involuntary contraction and there was the lichen. I saw the therapist for one year who helped me work through some psychological issues for a couple of sessions, but the main therapy involved doing exercises to learn relaxation techniques for the muscles and for breathing. Slowly the involuntary contraction went away, and the urinary infections disappeared almost immediately. He was convinced that he could cure me of the lichen too, but unfortunately I moved away and could not continue with the therapy. Obviously it is important to find someone who is completely trustworthy, as it is important to built trust for this type of treatment. You might need to research a few and get recommendations.

Anonymous said...

Hello,

I just found your blog, and it makes me feel so much better to know I'm not alone. I was just told by my vulvovag specialist that he is out of ideas and surgery is the only option, but I just don't agree. He recommended Dr. G, and I was interested in knowing if you have made additional progress since you met with him a couple of years ago. I live in Arizona, and the whole long distance thing and no insurance would be tough, but I feel like I'm out of options. I'd be interested in knowing if you're "cured" and any other doctors you saw in other states that were unable to help.

Thank you! -J