New and Feeling Down...

I have suffered with pain for over 7 years. I married an amazing man 3 months ago who has been with me since before the pain started. I have provoked vestibulitis and underwent a vestibulectomy last week. The recovery is smoother than I expected, but what I didn't expect is the emotional toll. I am afraid my surgery will fail, I'm afraid I will will have to have another surgery if this one doesn't work. I am most affected by the ups and downs of the recovery; one day I feel great, the next day I feel like total crap. Lying in bed all day alone for a week is taking it's toll. I made a blog to try to help other women know what to expect who end up having the surgery, but sometimes I could really use some extra encouragement. My blog is at privatepainsupport. wordpress. com if you want to know about the surgery and recovery. Words of wisdom and encouragement would be such a help. I just want to smile again.

Hi Orchid,
I hope you are feeling better today. I feel like the emotional toll of this might be worse than the physical pain for a lot of us. You are not alone in your emotional ups and downs. I struggle with this as well even after 5 years. My coping skills seem to be depleted. However, when my downs get severe I am forced to dig really deep within and somehow rally again. This is not easy, but we all have reserve somewhere. Allow yourself some time to feel bad about it.....you have every right. Then do something that you enjoy. I have different issues than you so I cannot offer specific advice. I just wanted to write and wish you well. I hope and pray for you that the surgery is the answer.

It's frustrating that so many of the websites re: V state that there is no cure. I would love to have the time, ambition and power to change that. Whenever I read that in a piece of literature I just want to flip off my computer :-0! It just isn't true and none of us should give up in finding our own cure. So many success stories I've read have happened 'by accident or by chance'. I hope/wish the medical field would pay attention to this.

You are an incredibly strong woman and will get through this. Try to stay positive and do whatever you need to feel happy and warm inside. You are healing. The smile is still there!
xo

I had a vestibulectomy on Dec 17 for provoked vestibulitis, so I understand how you're feeling. You might even be feeling great now! I'm slightly past the three week mark and have been feeling wonderful. I was very tired of lying down all the time too because I wanted to move around and leave home. Unfortunately, I live right on a hill, so I can't really walk anywhere. If I go up the hill, I have to walk down and visa versa. I would also not recommend taking stairs for a while, even at the three week mark. I did my second checkup yesterday with my doctor and he said I shouldn't be doing that yet, after I told him I walked up three flights to get to the office because I wanted to get some exercise. He said that everything looked good and that I need to keep taking sitz baths, which I hate doing because it feels weird.

I have also been feeling those same concerns about the surgery not working. I've been told there is a 20% chance that the surgery won't work. When I was lying in the hospital bed by myself before the surgery, I started crying because I was afraid it was all going to be for naught and I felt so lonely. I know that if it doesn't work, I'm going to cry a lot and my husband probably will too because we want to be a normal sex crazed couple. Botox is super expensive and typically isn't covered by insurance. Even if it doesn't work, there are other options. I've thought about doing chiropractics because I've had back surgery and thought that perhaps I had a pinched nerve.

I hope you're feeling better!

Thank you ladies! I just wanted to update and say I am doing better. I had a q tip test at my 4 week appointment with no pain! I am working with the dilators now with poor success and am having some struggle with physical therapy. Just trying to remind myself that it is a journey. I get so lonely being home all day by myself. I wish there was a face to face support group! Emailing back and forth with others has been extremely helpful though mentally. All your stories are so similar to mine, it is comforting knowing I am not the only one dealing with this.

Yeah I had a vestibulectomy last year trust me what youre feeling is all normal!!!!