Advice please...

Treatment options for UK & Irish members; including VHI & HSE criteria for funding and E112 Applications etc.
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Isha
Posts: 5
Joined: Mon May 16, 2011 2:43 pm

Advice please...

Post by Isha »

Hi everyone,

This website has been brilliant! I've been having pudendal nerve pain symptoms for about 9 months which I think was caused by (embarassingly :oops: ) a bout of chronic constipation. I've read this can inflame the nerve, etc. After months of being referred to gynaecologists, urologists and a urogynaecologist and then back to different GP's at my local surgery I was referred to Dr Anton Gauci at the pain clinic at Whipps Cross hospital in East London (near where I live). He has booked me in for a neve block and is planning on rf if this provides some relief. However, the waiting list on the NHS is pretty long (I can't believe they let people live in pain for so long!) and I wanted to know what the cost of private treatment is with Dr Baranowski. I don't have private medical insurance but I'm contemplating paying privately anyway if there's a chance it can lessen my pain. I think I read somewhere on the forum that the initial consultation is £425 but does anyone know the cost of subsequent treatments - nerve blocks, etc.

Thankyou to everyone on the forum who has shared their experience and made me feel less alone :)
Isha
carla10
Posts: 18
Joined: Mon Sep 27, 2010 12:40 pm

Re: Advice please...

Post by carla10 »

Hi Isha, I saw him privately last year and now I am on the NHS waitnig list. I was told the waiting list 12 months +, which is ridiculous. the X ray guided nerve blocks into ligaments cost £1600 each, ct guided neve blocks into Alcock's canal are £3000. The nerve blocks are much cheaper in France.
Isha
Posts: 5
Joined: Mon May 16, 2011 2:43 pm

Re: Advice please...

Post by Isha »

Thanks for your quick reply Carla. Wow, that really is both a lot of money and a long time on the NHS waiting list! I think I'll have to stick with my original doctor and waiting times unfortunately :( I was told I have pudendal nerve pain but I've still not had an MRI/MRN to determine whether anything else is obstructing/trapping/irritating the nerve. The NHS is making it difficult to navigate myself to a proper diagnosis not to mention my less than helpful GP!

Oh well, onwards and upwards I guess

Thanks again :D
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Advice please...

Post by helenlegs 11 »

Hi Isha,
I'm glad you have found some helpful information here especially when you have had an unhelpful GP. (Tell me about it !)
It's great that you are on the right track (hopefully) now, just a shame it will take so long. In the mean time there is quite a lot of good advice about sitting (Don't :) ) cushions and good discussions about medication that may be helpful in the mean time.
You will need to make sure that the forthcoming injection is GUIDED, as it could be a waste of time if not. If it is it will be fantastic to add another doctors name to our rather short list for this procedure, and wonderful for you diagnostically if it works. fingers crossed.
Let us all know how you get on and if we can help at all :) . . . . . there is a wealth of information here, which as you say is fantastic, in this predominantly PN ignorant world.
Take care
Helen
Last edited by helenlegs 11 on Wed May 25, 2011 8:56 am, edited 1 time in total.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Advice please...

Post by Lernica »

Isha wrote: I've been having pudendal nerve pain symptoms for about 9 months which I think was caused by (embarassingly :oops: ) a bout of chronic constipation. I've read this can inflame the nerve, etc.
Isha, pudendal nerve compression often RESULTS IN constipation, not vice versa. For many of us, the first symptom of PN was chronic constipation. So I wouldn't beat myself up about it. If you cast your mind back, can you think of anything else that may have damaged/irritated/compressed your nerve, such as a difficult labour, a fall, weight lifting, biking, etc.?

I'm sorry that you're experiencing PN pain but glad that you found this forum. You've joined a unique, caring and knowledgeable community.

All the best,

Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Isha
Posts: 5
Joined: Mon May 16, 2011 2:43 pm

Re: Advice please...

Post by Isha »

Hi there,

No, the constipation began i think due to poor diet. It lasted for about a year and now its resolved itself and im fine (in fact, the pregabalin im on causes constipation on higher doses). Towards the end of that time i was going to the gym frequently but mostly using the treadmill, cross trainer, rowing machine and really light hand weights (like 1-2kg i think it was). I was given antibiotics for a 'supposed' throat infection after which i developed a severe bout of thrush (sorry if thats too much information!). I'd never had it before and the GP gave me numerous creams to no effect after which i had to see a private gynaecologist. Anyway, long story short although the thrush went away after being treated by the private gynae (had lots of subsequent test and all negative) the symptoms remained (unprovoked and sometimes itching all along my vulva and perineum, a feeling of muscle cramps near the bladder if i sit down for too long and put pressure on the area and now burning/pins and needles in my feet). I thought that chronic consipation led to the PN because it was similar to straining during childbirth :s

Sorry for the essay! Its the first time i've spoken to other people in a similar situation-its so hard to explain to those who arent aware of the condition.

Isha
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Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Advice please...

Post by Violet M »

Hi Isha,

Sometimes it's a combination of things that brings on PN symptoms. Maybe the combo of heavy exercise and straining with BM's was too much for your pelvic floor and pudendal nerve to handle. Some of my early symptoms included itching too. Good luck as you search for answers.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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