update

[chillijava]

i all
sorry i havent posted for a while as i have had a lot of things to contend with, i just wanted to update everyone as to my progress in looking for an answer.
i had my first appointment with the lovely Dr Greenslade in bristol last week and hey its probably a pn issue. he examined me and said that i do have some pn issues but he also thought that more was going on than that and that i had a prolapse of the rectum etc. i did have a hysterectomy in 2006 and difficult time in labour having my son many moons ago and i also have fibromyalgia which could also be a factor. he also said i have a very tight pelvic floor which also could cause some of the pn type symptoms.
whilst i was seeing him he rang one of his team a Mr Dixon who is a pelvic specialist and asked him to see me, which he did (2 for the price of 1) and he confirmed that he thought i had multiple issues going on and 1 was a prolapse and promtly book me in for surgery, i am not 100% certain how much they will be doing until i turn up for the op 19th october .
dr greenslade said he could do a pn block but if the prolapse is causing it then there will always be the need to have nerve blocks as they will only be masking the problem not solving it.
so to surgery i go not expecting too much as neither doctor can be sure this is what is causing the problem but it definately wont help.
will keep you posted
andrea

[helenlegs 11]

This is so refreshing Andrea, to have a couple of doctors in the UK having an understanding and not only that PN diagnosis but
coming to sensible conclusions about how to tackle the problem. NOT that I would have thought any less of Dr Greenslade of course, I just want him cloned and shipped up here to help spread the PN word. I'd even be happy with the cloned version as there is no sense or understanding of the problem up here.
I'm sure Calluna will chip in to this conversation but suffice it to say that from what I have gathered, you will be in very good hands. I am SO jealous all I can say is RESULT!!
Happy as can be for you.
Take care,
Helen

[calluna]

Andrea, I am so glad you are with Mr Dixon - he is the surgeon who has helped me so much. He is a very clever man indeed, a wonderful surgeon who has very high standards indeed, and he is so kind and sympathetic. Dr Greenslade told me that in his opinion Mr Dixon was one of the best pelvic floor surgeons in the country. I can believe it. You can have every confidence in him.

I wonder if he will do the same surgery for you as he did for me.

By the way he is not one of Dr Greenslade's team, he is a senior consultant in the Colo-Rectal department. He does work with Dr Greenslade quite a lot, they are both perfectionists I have been told - just what you want in a surgeon!

[Geraldine]

Andrea

I am so pleased you had a good appointment with Dr Greenslade and hopefully the surgery will help reduce your pain levels. Are you having the surgery done in Bristol?
One of the may things I like about Dr Greenslade is that he looks at the whole pelvis and not just one area of it and is happy to refer to other consultants, whereas other consultants just look at their own area of expertise. Even when they obviously don't really know what is going on they don't seem to suggest going to anyone else - well at least that's what happenend to me. When I first saw Dr Greenslade in March after 4 years of pelvic pain and seeing many different consultants he said that whilst I had some PN symptoms there was too much going on in the area to make a diagnosis so he arranged for me to have a two MRI scans. He said I obviously had some neuropathic pain following the urology procedure four years previously and ensuing complications but didn't want to change any meds until after the scans.I returned to see him after the scans and he was delighted to inform me that he had found something exciting!! It was a golf ball sized mass to the side of the urethra and in very close proximity to the Alcocks canal. He straight away phoned a urology consultant he knew and an appoinment was arranged to see him. I saw the urology consultant and although he considered the mass to be the remnants of the bulking agent i had four years ago injected into the urethral wall he suggested having it removed. I decided to have the procedure done and I'm pleased I did as not only did the mass contain the bulking agent but also puss which shows I had had an infection in the area. In the first year following the procedure I was constantly going to my GP's saying I thought I had infections because of the pain but they were very dismissive and only occasionally gave me antibiotics.
At my last visit to Dr Greensalde we discussed how to manage my pain, he is hopeful that the nerve pain might decrease now that the mass has been removed. Though he again said there is no cure just hopefully managing the pain to give me a better quality of life. He wants me to increase my dose of Pregabalin from 150mg a day. He also prescribed me Baclofen as he said I had very tight pelvic floor muscles - which I suspected for along time. I go back in 6 weeks to review the changes in my meds. Has anyone else been prescribed Baclofen and if so how did you get on with them?

[helenlegs 11]

Phew! Geraldine you must have been so pleased to have seen Dr G, especially when others sent you packing.
Should we suggest him for a knighthood ?? That was said tongue in cheek but then I have found out that we could !
http://www.direct.gov.uk/en/Governmentc ... /DG_067917
Sir Gareth Greenslade of the genitals? or is geographical anatomy not necessary? Still, has a nice ring to it
Take care,
Helen

[chillijava]

well ready for my op on friday 19th, i have come down with a cold and sinus problems and i thought it was going to be cancelled but mr dixon said there shouldnt be a problem with surgery and gave me the green light.
we are going to bristol on thursday and i have booked into a hotel for the 4 nights, my husband will be stopping the hotel having a break, ok for some!
as far as i am aware i am having a LVMR proceedure but i dont know if they have decided to do anything else as well until i see them before the op.
i will post on my progress when i get home next week

andrea

[calluna]

That's the surgery he did for me. I do hope all goes well, will be thinking of you on Friday.

[Geraldine]

Andrea

Hope all goes well on Friday and you have a good recovery.

[helenlegs 11]

Every best wish Andrea,
Keep us updated when you can.
Take care,
Helen

[chillijava]

hi all
i am now back home and in one piece , i think. the surgery was more extensive than mr dixon first thought it would be, he said it would take 1 1/2 hours but as he put it in his own way, "it was a bloody mess" and took him 4 hours instead, love mr dixon very down to earth and says it as it is. he did say that there was a lot of scarring to the left side of the pelvis after my hyst and that he had to cut most of it away!, so no insides left then. i had a LVMR AND ALSO SACROCOLPOPEXY
i am now 4 days post op and still in some discomfort, i think everything is starting to wake up as i am getting twinges all over, my clitoral area is jumping around like a bean, i hope this improves.
he did say things might get worse before they get better as he may have stirred things up, but i suppose only time will tell and it is expected.
thanks to you all for your help and good wishes and i am hoping this is the first step to a new life

andrea