Am I getting better or worse?

[Laura]

I have had pn for less than one year. I was diagnosed very early. My earliest symptom was atypical. I had pain in my abdomen that only hurt when I moved certain ways. Soon after sitting was a major problem, except for the toilet seat. I've had the luxury of not having to work which gave me the freedom of not sitting and I've followed the latter religiously. Other than sitting, my one other major pain flare was non strained bowel movements. The before and after bm's would hurt the nerve. My pain level has always been low 1-3 and sometimes none at all. My pain was mainly felt next to my vagina on the left side and at this point I had no muscular pain. Around this time I had a nerve block done. It relieved the pain immediately and lasted for a few days. It caused a flare about 7-10 days later but that eventually subsided. As pn progressed, I started having chronic tight muscles in the perineal area and some but to a lesser degree in my thighs. My doctor started me on 10mgs of Amitriptyline. Latter he started me on Gabapentin slowly increasing my dosage to give me the ability to sit. At last count I was up to 25mg of amitriptyline and 1200mg of gabapentine. I was also using a heating pad nightly and massaging my tight muscles which in time helped a great deal. I even manged one day to sit for 2hrs with no pain at all. I'm not sure what happened maybe I was sitting too much but that pain free 2 hr sitting became unrepeatable. I slowly cut back on the gabapentin and found I still had minimal perineal pain and bm's were no longer flaring me. Perineal area is almost still pain free without the gabapentine but now the front of my left thigh for the past few days has been tingling. So my question is : am I getting better or worse considering my pain is almost eliminated in one area and has started in a new area

[Violet M]

I wish I knew the answer to your question. I had a progression and change of symptoms over time too but eventually it went into full-blown PNE. If you are careful, hopefully you will be lucky and be able to manage your symptoms just with lifestyle changes. There are people who have done that successfully.

[rea]

Violet
Reading posts and saw this. You once said my symptoms were a lot like yours. Think Ive been in progression. One year since pn block and gradually noticing burning more. Right after I finally got brave enough to voice it. We also just got a hot tub, trying to do exercises for pelvis, and bladder problems. Praying the burning doesn't go back to 10.

[Violet M]

Rea,

Burning can definitely get you down -- just sucks the life out of you. Hope you can get things calmed down and figure out a solution that works for you.

Violet