Thursday, April 10, 2014

Official genitofemoral block

Yesterday I had another appointment with Dr. Westesson at Strong Memorial in Rochester, NY.  He went back to the spot he tried in February along the genitofemoral nerve, along the panty line, as he thought that was the nerve block that helped in February.  The anesthetic took away a lot of the pain in the same way it did in February, though not to the same degree.  I peed, though, and felt no pain in my urethra even though my urethra wasn't numb.  If my pain were to improve only that far, only to the point of taking away my urethral pain, my quality of life would improve drastically.

Dr. Westesson said if I see improvement from these nerve blocks -- because he used a steroid as well, which is what would provide long-term improvement -- though that improvement will begin to show around two weeks from now -- I can go back to see him and we'll do a series of blocks.  If I don't see improvement, he suggested I find someone at the Cleveland Clinic who specializes in peripheral neurology.

His theory is that I might have overactive nerves all throughout my abdomen and no specific nerve entrapment.  That makes sense to me.  I wish it were true that a simple nerve block could treat my pain, but I don't recall an injury to my abdomen that would've caused, for example, a build-up of scar tissue that would've put pressure on a nerve.  I do have specific hip pain on the right side on the panty line, and the doc said that could be related.  The genitofemoral nerve runs right along there.  He described how the pain can kind of slide back and forth along a nerve...

But I had years of severe IBS leading up to the start of my vulvodynia... and though the IBS actually let up a few years before my vulvodynia started, I continue to have a sensitive stomach, and the best I ever, ever, ever did in ameliorating my pain was eating simply.  Bananas, potatoes, eggs, fish, rice, green vegetables...  I've always had this feeling that if I could sustain that diet for a long time, like a year or more, my pain would go away.  But dear lord, you have to BELIEVE that to be able to stick to a diet like that.  While I believed it, I did it.  When I stopped believing, I couldn't do it anymore.

Well, I'm going to do it again either way...  One thing that helped was that at that time, I was reading a ton about self-discipline and personal development.  And I was in grad school, so my schedule was more open for me to cook and focus on my health.  I feel like a lifestyle change might be in order to provide a framework for me to focus on recovery...  I work in an office, which feels physically unhealthy -- stationary all day -- and I stare at a computer all day, so all my energy and enthusiasm are gone by the time I get home.

I think today I am really angry.  I'm angry at all the doctors who sent me away without trying to help me.  I'm angry at the people who dismissed my condition as... whatever.  I'm angry that this has fucked up my life so hard.  I'm angry that I have had no romantic life to speak of for the majority of this time, that sex was excruciating no matter how I tried while I was in a relationship, that I may not ever be a mother, that I may not ever be a mother because I can't risk a pregnancy with this pain.  I'm angry that I've switched jobs a million times trying to figure out a good place to be.  I'm angry that I left my favorite job because of a bully and a couple of gossips.  I'm angry at them, I'm angry at myself, and I'm angry at my former bosses for letting it go on.  All I want to do is run away, but there is nowhere to go.  I have no money.  If I did have money, I would drive around the country and camp and visit people.  I would put all the drama in my life outside of me.  I would put big things in front of me, single things, one at a time, and task myself with conquering them.  Because I am stuck, and the best I can think to do is to face down the abominable snowmen of the world in order to distract myself from what's going on inside.


  1. Pain is so difficult. I wish I could write something useful here that would make it easier for you. You do an incredible job facing down the snowmen. Your strength is beautiful. x

  2. Thank you for the nice comment, and thank you for reading! This post was hard to write, brain foggy, but I felt I needed to post an update... I appreciate your support and hope you are doing well :)

  3. I have had lyme disease for 25+ years. Part of this has been an over active nervous system and unrelenting, excruciating pain that included IC, and also vulvar vestibulitis, and elements of full blown vulvodynia. I have no doubt that I would be where you are, exactly, had I not come from a background of pain. I actually knew what vuvlodynia was from my reading on IC, as the 2 are often related and was able to manage it and stop its progression through pelvic floor work, just as it was onsetting. Through the pelvic floor work, supplements, and some wildly non-traditional things that I do for the lyme, I'm making a lot of progress. And yes, this includes eating in a way that allows my body to heal.

    Don't be angry. It will suck the life out of you. I have been there. For decades, actually. I know the feeling of watching the life you have planned sail by. But you will make a new life, and accomplish greater things than you could have ever hoped because you are being conditioned right now in a way that most humans never experience . Regarding motherhood. I am nearly 36 and didn't know how I was going to do it either. So I'm freezing embryos and plan to use a surrogate. There is always a way. Don't lose faith in yourself.

  4. I'm so sorry you're in so much pain, not just physical but the emotional suffering is indescribable. I've been through with all this and know how exactly you're feeling - the financial struggles, the effect on your career/dreams/goals and sense of self, intimacy, worry that you may never have children, etc. The level of suffering is more than anyone should have endure. I also remember one post on one of the other pelvic pain blogs, when the woman had finally begun to feel better. She said there were so many times when she felt hopeless, she wanted to just turn the wheel of the car into a barrier (stuck with me b/c I've felt exactly that). She said she wished she could go back and whisper in her ear that things will be ok so she wrote that "I'm whispering in your ear now". That really stuck with me. I'm finally getting better after hip surgery and PT to strength and stabilize my pelvis. You're probably sick of everyone telling you what to do, but I really want to implore you to go get your hip checked out. Don't take no for an answer - demand a MRI with arthrogram. They won't want to hear about the pelvic pain but if you just discuss the hip issues, they may be able to help. The injections, PT before surgery, etc did not improve my pain. It took surgery and lots of PT to make the improvement and it only came after almost a year (which is what other women with hip/pelvic pain have told me). Maybe I can whisper in your ear just as she did for me. Take care! And know there's lots of us out there struggling right along with you.