I've been obsessed with this song by John Mayer for the past few days, and I think that line reflects perfectly how I feel right now.
It was not another Wednesday morning today; I went in expecting to get another round of injections, but my doctor said I wasn't getting better and there was no point at this time. He said if I still wanted to, I could keep going, but if something was going to happen, we'd have seen progress. Not only am I not seeing progress, but I've been feeling worse lately. It might be because I'm about to get my period, but I've been in more pain recently. I can't sit without my cushion for long periods of time. It just hasn't been good. So I took his advice and didn't get the injections. I'm not going to put myself through that for 3 more weeks for no reason and give myself false hope.
Then we talked about our options for a long time in his office. He said we could go back on pain medication to see if that would make me more comfortable. But I had a bad experience with the Elavil. We talked about using new drugs, but again, that would only make me comfortable, and not better. We also talked about physical therapy, and going to see a better one than I did. However, he said my muscle spasms are being caused by the pain I am having and not the other way around. So although it will help me, it also won't solve the underlying problem.
I guess it's hard for me to explain how frustrated I am at this point. I'm so angry inside. I want to just get to the underlying problem and get better. So we started talking again about surgery. He said he greatly recommended it and that I am still an excellent candidate. I only have pain in the lower vestibule area and didn't feel the pain during the inner examination. I said my tennis season ended the first weekend of October and that I was ready to get the surgery right after that. So I just signed the paperwork and I just scheduled it for October 17th, exactly 30 days from today.
At first there were some insurance issues, but my mom called our company and it looks like everything is covered. I just need to go in once before the surgery to for pre-operative care, to talk with my anesthesiologists, get bloodwork, etc.
I know this is the right next step for me, and I hope that my professors understand and work with me through this. It's going to be a tough time, but if I do it now, then I don't have to wait and can do the things I want during the summer. And if I have the chance right now to make this all go away, you can bet I'm going to take it.
I'll discuss the vestibulectomy more in detail in my next post because I have to run around for the rest of the day. I ask for strength to get me through the next couple of months and for people to be understanding. I hate asking for help, but I'm going to need support and people to help me keep my head up when I might not want to.
9 comments:
NO, NO, NO!!! Do not have surgery until you go to PT - good PT. The surgery could absolutely make your pain worse - really. I question your doctor that he hasn't sent you to good PT. Please call beyond basics. And no, I'm not a rep of beyond basics, I'm just a girl who was suffering terribly, like you. I managed to get well thanks to good PT (pelvic pain rehab in San Francisco) and subsequent self PT. You have nothing to lose by going to BB to be evaluated. I'll bet they've seen a few of your doctors patients - after unsuccessful surgery. At least do a phone consult with someone. The girls at www.pelvicpainrehab do fifteen minute consults. I don't know you, but I care about you. You need to be evaluated by a good PT.
I appreciate your concern and have looked into physical therapy. I understand it is an option that has worked for many people, however, it hasn't worked for me, and I know it will not work because I do not have muscle spasms. I will be going to a great physical therapist after surgery and understand its importance. However, I think it's also important to consider that vulvar vestibulitis is a condition that affects so many women in different ways and treatments that work for some do not work for others. This is my decision, and I have talked to many people who agree with it. I'm not going into major invasive surgery without exhausting every other option and giving it a lot of thought.
Thank you for concern.
Tamra
Hey Tamra,
I love you, and I will be here for you in whatever capacity that you need me to be. You are a strong, intelligent, and vibrant woman. You can do this. You can do anything! Stay strong girl, and if you need anything, I'm here.
Lots of love and hugs,
Trista
I just worry that you haven't been to a good PT. As I recall, she had you doing kegels? Or did she judge you by biofeedback (often wrong)? I went to five PTs who all said they knew what they were doing and wow, there was no comparison between them and the PT who got me well. That is all, don't judge all PT because you have been to one who sounds substandard. Surgery often makes patients worse than they were before. I hope your post operative PT knows what she's doing. I think you should perhaps see her before surgery so she can at least evaluate you manually for pelvic floor contracture. If I had gone to a GOOD PT before I had my surgery, I wouldn't have needed surgery.
Hi Tamara,
I agree with the previous commenter that you might not have exhausted all of your options--your doctor is wrong by telling you that PT can not clear up the underlying issues that are causing your pain. you should get a second opinion before opting for surgery--I saw nearly 10 doctors and 5 pts before I got to a wonderful PT and doc--I have pelvic tension floor myalgia and pudendal neuropathy, but my PT treats many women with vestibulitis and gets them pain-free. I am collaborating on a book about pelvic floor pain with a doctor and pt at uci medical center and also write a blog on the issue, please check it out: www.pelvicpainmatters.com; there is a post called "is your pt treating you right," that describes the right pt for pelvic pain vs the wrong pt.
of course it's your decision to make, but i felt compelled to speak up b/c it seems like you have not exhausted all options and surgery can indeed make your pain worse--it was surgery that contributed to mine. best to you, Bonnie
Dear Tamara, I just had to write to you again after reading more of your blog--have you been evaluated by a "good" pt regarding your alignment and other muskuloskeletal issues that might be contributing to your pain? I ask b/c I now realize you are an athlete--my PT has treated several athletes for vestibulitis and since we are working on a book together, she has told me about a few cases; one, a runner developed vv b/c it turned out she was flat-footed, after getting orthotics and pt for a few months she got to a pain-free state; another my pt told me about was a volley ball player who had one leg longer than the other; there are several musckuloskeletal issues that can set off chronic pelvic pain issues, you really really should be evaluated by a good pt before you have surgery, if you don't correct the underlying problem, chances are even with surgery your pain will not go away. again, i wish you only the best, i admire your courage; i know first-hand how scary it is to write a blog about this stuff:) i too have gone into grave detail about my vagina, vulva, etc.
all the best!
BB:)
p.s. feel free to email me directly if you like at bonniebauman@hotmail.com
Tamra, I read your blog and it reminds me of how I felt when I was first diagnosed with vulvar vestibulitis. I still have daily pain and problems...but I cope iwth them. I too had a hard time with Elavil and had to sto ptaking it. Now I am on Cymbalta and it is helping. It's hard to be out here on the frontier of medicine, waiting for them to catch up...because we don't know how to "cure" pelvic pain diseases. You must follow your heart and your instincts and your intellect about this...but I personally in my battle with this (I'm 28 now and have had VV for 2 years) I've consulted with several VV specialists - Dan Brown at Baylor College of Medicine. I also consulted with a surgeon when I was thinking about having a vestibulectomy...they both told me NOT to do it. I hate the idea of making your life any worse by my anonymous words...but please be careful. The post-surgical pain can be significant and lasting. And for that there is no remedy. I will be thinking of you these coming weeks. Please feel free to email me directly - asm780@gmail.com I wish you more than the best, because no one should have to suffer as we do.
Anna
Hi there. One of my family members had a vulvectomy and did just fine. There are some ladies who have damaged tissue that will never get better, with PT. Not everyone and I am not suggesting to just go out and get surgery. but there are definitely those who benefit from surgery.
PRAYERS FOR YOU
I had a vestibulectomy a year and a half ago. It was the best thing I've ever done. You know your body and you know if PT is not/has not been working. The surgery is not that bad at all. I would do it all again if I had to. I was completely terrified before the surgery, but I educated myself by talking to my doc, doing research, and talking to other woman who have had it. Within 6 months of surgery (after some more PT appointments and dilator use), I was finally having pain-free sex with my husband. Best of luck to you. You'll be in my prayers.
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