update diary after pn surgery

[chillijava]

6 weeks
things over the past couple of weeks have calmed down to pre op pain levels that was until today when the pain has returned with a vengence, and i think maybe that this is because i am constipated again, i really seem to have a lot of problems with that and it is quite difficult for me to get the right balance, as i have bile acid diarrhea and if i dont take an imodium every day i have severe diarrhea and if i do, i tend to get constipated, i also have had the constipation issue since i started with the pn problem and i think i remember reading that constipation can be a pn symtom, i just have to find the right balance otherwise i am taking things to make me go and things to stop me, any advice on this would really be appreciated


andrea

[Painful Man]

Hi Andrea

I've always been someone who eats and drinks everything, and I never suffered from constipation until I met co-codamol, pregabilin etc. I spent nearly a year fighting it with buckets of prunes, dried apricots etc. Then I gave in and tried lactulose. It did the trick, and so far it's been goodbye constipation. My GP says I can stay on it. Apparently it can give you gases, but I was getting that anyway as side effect from pregabilin and/or my acid-reflux problem. I don't want to take any drugs, but everyday constipation on top of everything else understandably drives us up the wall.

I also got a result from senna, which in pill form is easy to travel with. However, I found that lactulose gave a more 'comfortable and natural' result. Never thought I would be discussing such things!

All the best
P_M

[chillijava]

2 MONTHS POST SURGERY


well i am very unhappy at the moment as my pain is now far worse than before surgery and i am feeling so very depressed and cant seem to get any help from anywhere, all the dcotors keep wanting to do is give me more drugs to try and i cant tolerate any of them.
i have made an appointment to see a new pain management consultant in my area as trying to see dr greenslade is more than a problem and i need help now!
will keep you posted, but i am so worried that i made the wrong decision for the surgery and that maybe pn is not my problem


andrea

[molly]

Hi Andrea,
I know Dr Greenslade is away most of this month that does,nt help you, but at least you knoe thats why he is even hardedpr tl get hold of.

Which local pain consultant are you going to see?


I don,t really know what else to say as regards you,re increased levels of pain. Have you tried gentle swimming? I found that helped.Are you able to go for short walks that is quite relaxing.

Perhaps you,remuscles have tightenen up.

Sorrh Andrea just brain strorming. keep us posted.

Regards Molly

[chillijava]

i have seen another pain guy in my area this time, he seemed quite knowledgable about the pn nerve problems as he had a doctor friend who had a trapped pn nerve and also knew about prof baronovski and also the nantes team, he said it was early days yet at 8 weeks and that it will most likely settle in the future, he also has asked me to try oromorph for when the pain is too bad, just to tied me over while the nerve is recovering and also volteral suppositeries. he doesnt really deal with female pn more male pn but his colleague dr hodgkinson is more up on th pn problem and deals with female pn patients and also the scs stimulator machines we here about and apparently she is very knowledgable, he is very kindly reffering me to her as an nhs patient with the view of trying to get me a trial of the scs if she cant help with the pain management, and has also requested a back ct/mri scan to make sure there is nothing wrong with my back, after reading my notes it seems that i was trapped at the allcocks canal, but he also wonders if i am also trapped further up.
i know i have to wait to be seen on the nhs but this is very refreshing that there is a pain team in my area Nottingham that are aux fait with the pn problem, he has also said that i will possibly be given more nerve blocks in different areas, like the inguial area, not sure where that is and also spinal area.
on another note the has also told me that there is a gynae in nottingham called mr david nunns, i have seen him before and he is also an expert in womans pelvic pain, this man has been thinking about doing the pn decompression surgery, now i know he no longer holds a private practice so you have to see him on the nhs, but i will see what else i can find out for you so watch this space.
all in all i feel quite happy at the moment, not the outcome i really wanted to still be in pain, but hope that i can still move forward and without me having to take the long trek to bristol all the time and also going on the nhs will help my pocket!

andrea

[helenlegs 11]

Thanks for this additional info Andrea, although I'm sure you are far happier about it. it's great to be able to add more doctors to the PN aware and then able to do something about it list!! Keep us informed and good luck.
Take care,

Helen

[Violet M]

Andrea, if your pelvic floor muscles are tight maybe some valium vaginal suppositories would be helpful. You are right though, it is still early days after surgery.

Violet

[swarke]

Hi Andrea,
I have just had surgery at Bristol Spire too last week in fact. I get the awful PGAD which has been and still is horrendous. I take movecol to help my bm and I get them from the doctors. I still can't sit but a week out I know I'm expecting too much. If I could just get rid of this PGAD it would be so much better.

I wonder if Violet knows the answer to that one?
I am happy to keep in touch with you. Mr Wong is ringing me in 5 weeks time for an update so I will be asking his advice if I am no better. However, to be fair he did say that the nerves take six months before they even start to heal. I did have the ketamine which is supposed to give them a kick start, and I did have a legal high. Mr Wong had plants coming out of his ears! The only fun part of this whole journey.. I did make my own padded toilet seat which I put in the car and that enabled me to drive short distances. I was still in pain but a bit easier. I've not tried driving nor really sitting yet as I don't want to rush it.

My right nerve was really badly squashed and my left was being choked by varicose veins which I must remember to mention to my doctor, my wounds have healed but I am sore and bruised. I wish I could transport myself into a future pain free day.
Hope you feel better soon, Shirley in West Yorkshire swarke22@icloud.com

[Positivepoppy]

Hi
I had the ketamine infusion for 23 hrs immediately after TS surgery in Bristol. It was a bit experimental but I was in so much pain in was willing to try anything. Good luck, how is the pain now?

[chillijava]

just a quick update it is now nearly 8 months since surgery and i am sorry to say there hasnt been any improvement, i still am having the pain and in fact a little more pain if i am honest, its not the nerve thats any worse but the scar, i used to be able to kind of sit on my buttocks but the scar hurts some times and i have noticed that if i try to sit on it it makes my pn pain worse like its squashing it . i am due to go for prf on the nerve on the 12th march, not looking forward to it if it hurts as much as my last pn block, i have asked for sedation but my consultant has said sorry no i need you awake to tell me if we are hitting the right spot!
i have also been referred to the neuro modulation clinic for the possible trial of a scs and i am awaiting my appointment for this



andrea