Tuesday, September 19, 2017

#TMI? #Endometriosis #Vestibulitis My life at the doctor update

So a quick update on my life:
I had surgery number two. The surgeon was positive he had found what was causing me pain, and that he had fixed it. Unfortunately, it still hurt. 

He sent me to another specialist who diagnosed me with vestibulitis. That's when the vestibule area of the vagina becomes severely inflamed from the body attacking itself. It is usually caused by an infection. It is sometimes caused by surgeries or nerve damage. Treatment is not a quick fix.

Six months of steroids (topical and injected) as well as finding things that can irritate the area and getting rid of those. (Soaps, tight clothes, sitting, exercise, etc.)

After six months, the Dr felt like I should be doing better than I was. He asked me what my pain level was. When I told him a 5, he said I had a very high pain tolerance. After all the shots and never even flinching, he felt like there should be more relief for me. He sent me to a new new specialist. 

She is a neurologist who specializes in pain. She gave me an injection in the coccyx area (steroids and lidocaine ). That didn't help, so she did one in the right pudendal (the nerve that goes to the urethral sphincter and then down the leg). That brought a wonderful numb relief for eight hours. It also made my whole leg go numb, but I didn't even care. It was such a relief to be numb. The steroids eventually took effect, and made it a lot better. Pain level was down to a 2-3, except for when I sat. That lasted for about a month. She also tried the left pudendal nerve, but that didn't help. 

I decided to go back to physical therapy. Pelvic floor physical therapy sucks, but with the new therapist, it was a little different. She has worked on aligning my pelvis and spine by recruiting muscles that had stopped working and stretching and releasing tight muscles. She also did some internal work, but very little - maybe five minutes a session. 

I've had about six sessions, and I don't know if it's helping the main pain. It is definitely helping my posture, and teaching me how to use my muscles the right way. Long term, I think that will be really helpful. Short term, it is relieving overall tension in my body. 

So, anyway, there's the last year of doctoring I've been going through. 


  1. You now know more anatomy than I do. I really hope this does the trick for you! I'm glad that you keep trying and that the doctors truly want to help you.

    1. Thanks! And I don't think so... I just know a few nerves in that one area.