I'm soooo fed up of being in this awlful, debiltating agony!!!

[sweetie-78]

I have been suffering from chronic pain for 10 years. I have had 2 laps, fibroids removed, scar tissue & adhesions removed that was this yr, found them wrapped around my bowel!! I have had numerous water infections & had bladder instillations & even my bladder stretched that was agony. I cried & cried. I'm at the end of my tether with it all, been refered to John Radcliffe appt 11th. Fingers crossed. Anyone live in Gloucestershire living with pelvic pain??xx

[McGraw]

I am so sorry for you it has been the same for me over twenty years . I know how hard it is nobody knows what we go through. You have an op and hope and pray that you will be FREE of pain but you are not, any better and back where you started from living in your nightmare!! My next move might be have my Adhesions removed that could be my next op. I would have it, it I would be FREE of pain. Sorry I don't live in your area. Would love to find someone who lives near me so we could chat. Hope you find someone God Bless Carol xxx

[sweetie-78 in reply to McGraw]

Sorry for the late reply! Thanks for support. I hope you feel better soon & if you do have the op to remove adhesions I hope your pain reduces. Take carexx

[Woodland16]

In my non-medical opinion I have found ;that some people make a lot of scar tissue. I have had some removed from the same area for that very reason. I hope that helps! Sad to say I don't think they can stop ita but highly reccomend getting a doctor's opinion.

[xweeta]

Hello,

there are some more radical procedures to try to eliminate pain. For example the LUNA procedure. Luna means "Laparoscopic uterine nerve ablation" and is performed in cases where other procedures didn't worked.

If you don't have the nerve you won't feel the pain because nerves are responsible for the sensation of pain. Of course this is a radical procedure.

Ask for that to your doctor.

I leave you this article:

laparoscopy.blogs.com/preve...

Good Luck

[sweetie-78 in reply to xweeta]

Thank you for your info. I see specialist on the 11th I will mention this to her & look up the articlex

[PPSN_JudyB Pelvic Pain Support Netwo in reply to xweeta]

An RCT of this proved that it isn't effective, so not advised. It can also be harmful.

Presacral neurectomy is different but again may not help. This is a very complex procedure, not for amateurs !

[CourageousCar]

Hi Sweetie, i live in Gloucestershire and also have pelvic pain. Do you fancy getting together for a cuppa sometime? x

[sweetie-78 in reply to CourageousCar]

Hi, Really pleased when I got your reply as often feel very isolated dealing with pain, other people don't tend to understand!! Where in Gloucestershire do you live? I live in Gloucester, I would love to meet up. Xx

[Marion35]

Hi Sweetie, I live in Herefordshire so maybe we could all meet up for a cuppa one day and have a good old moan and maybe it will leave us all feeling better that the fact that there are other people with chronic pelvic pain (pudendal neuralgia we will no longer feel alone. Take Care

[sweetie-78]

Hi, it would be great for us all to meet up & have a good moan! Be nice to be with people who understand. Let me know when your both free. Xx

[CourageousCar]

Hi, I live in Gloucester too : ).Marion, would you be able to travel to meet up somewhere half way between Gloucester and Herefordshire? What are you like with traveling Sweetie? xxxxhugsxxxx

[sweetie-78]

Hi, I'm ok traveling. Could meet u halfway if Marion would like to meet up. I work so could do wkends as evenings just about had enough due to pushing myself allday!! Nitemare just to survive! Would that be alright for wkends? Sorry for moaning very tired! Pain at the tops of my legs like an electric shock, does anyone else have this?Xx

[CourageousCar]

Hi , yes w/ends work best for me too, I could drive us both if you like . If Marion is ok to travel, we can look at the map and find a pub or garden centre ect half way. If not, im happy to drive to Hereford and back. Sorry to hear about the pain being like eletric shocks at the top of your legs- awful : (. Mine is more a sensation of severe 'dragging, acheing ,pressure and a very sore/tender coccyx bone tonight. I spoke to my GP today and she's encouraging me to start a support group for people with pelvic pain in Gloucestershire (would be nearly all women, she reckons- which i think would be good). Would you fancy coming-, maybe once a month, if we made it a Sat/Sun . Maybe we could meet up in a pub or resturant/cafe -- im open to any ideas and there's no pressure at all, obviously : ) xx

[sweetie-78]

Yes count me in for meeting up regularly with other people in simliar kind of situation would be great support. I'm sorry to hear about your pain but I don't feel so isolated now knowing others are in the same situation (not that it's nice tho!) Are you under a pain specialist? I'm under Dr Young in Cheltenham, my gynae consultant is Mr Kaloo. Who are you under? Have you done a pain management & mindfulness course? Sorry to ask you so many questions!!Xx

[CourageousCar]

Hi my dears, ive done the pain management course but not the mindfulness course- but im going to ask if i can do it. I was under a London UCH pain specialist and i had a successful prudendal nerve block done by him(successful in that i didnt need pain meds for 3 wks after but the actual procedur e was barbaric and very, very painful for me), He wanted me to do a pelvic pain management course in London - but how was i meant to get to London 8 early mornings in a row?. ive asked my GP to refer me to Mr Greenslade in Bristol for another prudendal nerve block. How have you been today? The pain has been awful for me today but ive coped- just : ). I was looking at the internet today at postcards we could have printed with a nice picture on one side and our details ect on the back. i would be happy to pay for them and we could give them to GP's , pain management clinics ect to give to people in the same boat as us to ask if they want to meet up with us- they may not ofcourse - but some people will. We could advertise on here and on the other Pain Support website - painsupport.co.uk . Also on other health unlocked sites maybe.The pain clinic at GRH is ran by the Gloucestershire and Herefordshire pain service so maybe we could call ourselves the Gloucestershire and Herefordshire Pelvic Pain Support Group???? What do you think??? Do we make it just for ladies- and no chaps? I think so as i lot of our challenges are very personal. .I think it would be good to be flexible and not worry about a venue or dates ect yet-- but wait and see who wants to join us (and where they live/how mobile they are ) and then look at central locations like coffe shops/pubs to meet. What do you think, take care, xxx

[CourageousCar]

Hi, ive been thinking. (dangerous, I know), but postcards would be OK, but they wouldn't work pinned to a Dr's notice board - leaflets would be better for that. What do you think ?

[sweetie-78 in reply to CourageousCar]

Hi, sorry not got back to you sooner. I think leaflets would be a good way to inform others of chronic pelvic pain. I think a women only support group. You could put an article in the citizen? Had my appt in oxford yesterday. Consultant was lovely. Got lots of things going on endo in the lining of the womb, hypersensitive nerves in the pelvis & muscle condition of the pelvis! At least a plan has been made mri & physio in new year. Have felt soooo rough since appt pain through the roof!! How are you. Keep in touchxx

[CourageousCar in reply to sweetie-78]

Hi Sweetie, sorry its taken me sooooo long to reply. im so glad your visit to Oxford went well and the consultant was lovely. Has the pain settled at all since the flare up when you had your appointment with him. How was your Christmas? Mine was OK but Ive been feeling really low the last couple of weeks. I will pick up when the kids are back at school and my disabled son back at the day centre. Do you want to meet up ? id love too. chat soon, xxx : )

[sweetie-78 in reply to CourageousCar]

Hiya, really good to hear from you. Christmas was ok, still feeling soooooo terrible, pain is sooo bad (fed up with it)!! Just feel washed out, not eating much either. Feel sick with the pain!!! Do u feel like that with pain? I work with children so I know how you feel. How have u been? Yes would love to meet up. How do you put up a private message with number or email?? Be so good to talk to someone who knows what I'm going through, Speak soonxxx

[sweetie-78]

Hi Courageous,

How r u? Feeling so low, pain is killing me!! I'm sick of being like this. I feel really sick & nausea, it's so crap. I'm waiting for mri results, go 2 oxford next week for physio. Would love 2 meet up & have a good old moan with someone who understands. Hope 2 hear from you soonxx