Going on sixteen years

[Grammy]

I am so glad to have this forum. I have had pelvic problems for sixteen years now. I had a very difficult delivery of my second child when I was 26. It was a forcep delivery where my uterus was just about pulled out. Six weeks after the birth I had a huge surgery where they sewed this to that to support the pelvic organs. Believe if or not I was fine until 1994 when I lifted a heavy box over my head. I started to feel pain in the vaginal area. I have seen over 100 doctors in the past sixteen years and only got a diagnosis with Dr Conway two years ago. I have had FIVE reconstructive surgeries done by top doctors in hospitals liike Mass General and Brighams in Boston prior to seeing Dr Conway. His emg testing showed that I have three entrapments and he told me that he would only give me a fifty percent chance of being better and that he might need to close the vagina for stability of the pelvis. Before I consider a sixth surgery I am going to try once again neruostimulation of the sacral nerves. My symptoms are: A feeling of severe pressure--a feeling that I need to push the vaginal wall up--severe burning in the vagina and some rectal pain--complete exhaustion--extreme anxiety--depression and discouragement. My fatigue is such I can not make morning appointments or do any traveling. I struggle to get out of bed and I wake up tired. This condition is one that you just can not ignore. It is in your face all the time. I have taken so many different drugs over the years and tried so many things and nothing really works. My favorite medication is an ice pack. I am now 64 and my husband and I have rasied our family and we are free to do anything that we want. He is not well either so retirement is not what we expected it to be. I am at a place where I do not know what to do but I just do not want to feel my bottom anymore. I am sure all of you will understand that. I will try to post my experiences with a sacral stim if I do indeed try it again. The first time it did not go into the pelvic area but rather the stimulation stayed in the lower back.

[Amanda]

Welcome Grammy

im sorry to hear of your long history. But would like to thank you for sharing with us.
Can i ask you about the Stimulation you have tried before? Who did this and what area were they targeting?
If you would like to read through some posts int eh Neruostimulation area you may get some help there. I have a Stimulator and it does help me a lot...but as you maybe already know it depends on which doctor does this opertion and where they place the leads.

I hope that we can offer you some help and support.

[Grammy]

The stimulator that I had was a basic retrograde ans stimulator but I am not exactly where the leads were placed. I am following a case where a woman had the stim placed by Kenneth Peters two weeks ago and she is not doing well with it. It had decreased frequency and urgency but is doing nothing for the pain. She had the stim place in the sacrum first for two weeks and then she had the leads replaced lower as she has a little incision low in her bottom. She has several programs to try so I am hoping she will find something to help with the pain. This is discouraging as I was planning to see him after the first of the year. I just can not believe that having another surgery which would be number six would help as there has to be huge damage done to the entire pelvis.

[HerMajesty]

Welcome to the board; your case sounds very complex so i really have nothing intelligent to say, just welcome and i hope you find excellent information and support here.