One year after my vestibulectomy: physical healing, emotional battle
This past weekend marked one year since my vestibulectomy. I’m not where I thought I would be - not where I wanted to be. I describe my surgery as a success. 1000%. The vestibule tissue that felt like fire and lava is gone!! The problem tissue is gone. Thank god!
But... I am still struggling, both physically and mentally.
From a purely physical standpoint, I still have pain. Getting rid of the nerve pain has revealed how much pain I have caused by hypertonic pelvic floor dysfunction. My muscles are so tight and they just don’t want to let go! I made some progress with a combination of two pelvic floor physical therapists, daily suppositories of muscle relaxers, and intensive at-home PT with dilators. But the progress was still two steps forward, one step back. Plus, the process was overwhelming and exhausting, and I couldn’t keep it up.
It continues to surprise to me just how much my body adapted to deal with pain, to the extent that I don’t notice it most of the time. Now that I am aware of my pelvic floor, I sometimes “check in,” and I realize that I am actively contracting my pelvic floor… essentially all the time! It’s a long-time (bad) habit that I developed in response to my nerve pain. It’s a guarding response that I still have, even though the nerve pain is gone. The bad vestibule tissue is gone - now I have to figure out how to stop guarding my body from it, so I can stop causing myself more pain by screwing up my muscles.
I think I am struggling mentally even more than I am physically.
The idea of sex gives me anxiety because it’s always been painful. It’s difficult to convince my “trained” brain that it’s ok now. Anxiety and stress also contribute to muscle tension; the panicked anticipation, in combination with real muscle dysfunction, makes penetration with my husband still near impossible for me.
On top of that, I have no libido. Which doesn’t surprise me when I objectively assess the situation. Why would I desire something that is painful? I feel guilty for not having any desire for my husband, because I do love him. It feels like that part of my brain has given up and shut off. If it weren’t for him, I think I could happily let it go. But I don’t want to give up on that dream of having a “normal” sex life someday and having a baby in the (relatively) near future. I am constantly grateful for his patience and understanding while we try to figure this thing out.
For now, I’m taking a break from treatment.
I’m giving myself permission to stop feeling guilty about “not doing enough” to get better. I’m too exhausted. And I hope that taking a break from treatment might help anything physical that does happen with my husband to feel like medical. In a few months, when I’m ready, I’ll start trying more treatments. I still have a few treatment ideas up my sleeve, but I’m waiting to see whether the physical or mental side of things seems to be the bigger contributor to my continued struggle.
Living with vestibulodynia, even with proper treatment options, is a long a difficult road. If you’re struggling, please reach out; I’d love to help if there’s a way that I can. Keep fighting the fight - you’re worth it!