Health Organization for Pudendal Education

Hi Andy

I have been suffering from this for over 5 years now. I am in the process of getting decompresion , I am so worried. I don't know whether to get it done in France or Bristol. How are you now.

Amera

Hi Amera.

Apologies I have not responded sooner. I have not been on the forum for a while.

I have improved a fair bit. While I am far from cured & I am still in a great deal of pain at times, I am pleased I had the decompression surgery. I can walk short distances now & I even managed to do a little housework recently. As strange as it sounds that was exciting for me. I struggled for a few days afterwords but considering I had to pay a cleaner pre surgery, to be able to hoover with a lightweight vacuum myself was extremely liberating & gave me back a small sense of self worth. I have practiced standing at a work station to see if I could go back to employment but I think that is a little ambitious to think I could do that yet. Even short stints react badly. I have taken part in my first social event in over two years recently too. That was difficult & I am struggling with the reaction to that as I type, but the very fact that I even thought about taking part is testament to how much my situation has improved. The temperature issue I have experienced has improved, along with sensation & functionality. So overall things are better.

However, all of my symptoms are far from fixed. They all fluctuate wildly & react badly to physical exertion. But the improvements give me hope that things could improve further going forward.

I am pleased I had the surgery at Bristol, but as others have advised, surgery is not for everyone & you have to be sure that you have exhausted all other avenues of realistic treatment first.

I will update this diary in a few months with my progress & in the meantime I am happy to answer any questions anybody has about my experiences.

Hoping everyone has a pain free Christmas.


Andy.

I am happy to hear of the improvements you have seen from your procedure and wish you the best as you continue to heal. I understand how wonderful a little independence (like vacuuming!) can feel. Please keep us updated as you get a few months further out.

Sincerely,
Stephanies

Andy,

Thanks for this positive update following your sugery. Just remember it takes time and gentle activity in the recovery period.
I remember too doing little tasks and the satisfaction it gave me. Just take things gently and listen to your body, I used to write a diary of the things that made things worse and it helped me to keep track of my activity without overdoing things.

Happy Christmas

Amanda

A month later & I appear to have regressed in my recovery. Im not sure if I overdid things but Im in severe pain at the top of my legs, groin & hip... It is sharp, burning & dull aching on a par with the strongest I have felt in a very long time. Temperature issue is extremely random too, from warm to very cold at the drop of a hat. I hope it is something that will settle soon & I start to see improvement again.

Hi Andy,

Thanks for the update. I had a lot of ups and down during my recovery too. When I was 6 months post op like you are, I was still on narcotics and was limited in what activities I could do without causing the pain to flare up. If it is related to activity levels, hopefully you will be able to take it a bit easier to allow things to heal.

Violet

Hi Violet.

I have been off narcotics for a while, but will need to re-assess that decision if this carries on. Thank you for the info though. I was aware that things can fluctuate, but to hear it from someone who has recovered makes it a bit more real. If that makes sense...


Andy.

It just takes a lot of time and patience, Andy. There was never a time where I suddenly said, "I'm well". It was slowly over the course of several years that the pain slowly faded away and even now, I have to avoid certain activities but I can live a mostly normal life. I think it's important to avoid things that flare up the pain and use as many pain relieving measures as you can -- like opiods, heat, ice, etc. If you are concerned about addiction or tolerance with the opioids you could do what I did and take them only in the late afternoon and evening so you can sleep. During the day I toughed it out did sitz baths as described in this thread. http://www.pudendalhope.info/forum/view ... =25&t=5267

Violet

Sage advice Violet. Thank you.

Andy.

Thanks guys for all your information hope you all keep getting better. Sorry for late reply for some reason i didn't get an alert that anyone had replied. I am so grateful that you all got back to me. I will let you know what is happening and may need your help in the future. Thanks again

Amera