Health Organization for Pudendal Education

Thanks for posting, Andrew. Following your progress. Sometimes nerves can engage in crosstalk where one nerve can affect another. I had a pudendal nerve block that gave me sciatica for 5 months but it eventually went away. Best wishes for the holidays.

Don

Hi Andrew,

It is quite possible that you have developed Piriformis muscle syndrome after your TG surgery with Dr. Wong.It could be a result of severing the ligaments or transposing the Pudendal Nerve at ischial spine under the Piriformis muscle.This is a common complaint of most post-Pudendal patients who undergo TG or TIR approach.I believe that it was 11% in TIR approach and probably 80% in patients who have TG approach.

I am sorry that Dr. Wong wasn't aware of it because according to professor Roger Robert there are no complications from his TG Approach.

Maybe a physical therapist can help or maybe you would need another surgery to get rid of the Piriformis muscle syndrome.

All the best,
Ali

Hi Everyone,
Sorry but I have not been online for a while now. Its been almost a year since I had my second pudendal entrapment release done. The first was done sep 2010 in London by Professor Carlstedt and the relief was profound! I was a bit reluctant to do the second side but decided that it could only get better, but I was wrong. The second surgery did provide some relief at the start but must have been as a result of the drugs used, which once it worked out, left me in even worse pain than before. I visited the doctor and was told that there was some inflamation which was supposed to decrease with time. After months of suffering I was then referred back to the pain clinic.
That proved to be a horror story as well as the doctor there did not believe in the surgery in the first place and suggested that I try psychology sessions to help me manage the pain. I was told that there was no cure, no other hope except what was suggested. When I asked for a second opinion, i was finally told that i would be referred...but I am still waiting on the clinic for that appointment.
In the meantime I was referred to another pain management specialist as I started having problems with my neck, shoulder and left arm. Ended up having nerve blocks done privately and was eventually referred to another pain clinic. The doctor there is definitely more approachable and seems interested in patients. He is also suggesting the tens machine on a regular basis. I am also scheduled for more blocks...just counting down the days.

Hi everyone

Romaine - thanks for posting, as with a lot of us, mix of good news and bad news, hope the nerve blocks are sorted out for you soon. Always good to have a doctor that cares about the patient and takes your pain seriously - it makes a real difference.

Another month or so in, so thought it was time for a further update.

Thanks to those of you who posted after my last update - it appears to have been an entirely accurate diagnosis! A month of physio, exercises and not overdoing things seems to have made the sciatic type pain go away, although it does flare up if I try to do too much, or sit for too long.

I've returned to work in the last couple of weeks, on a phased return. Work has sorted me out with a desk that I can raise and lower (you wouldn't believe how much excitement that's caused amongst my colleagues, anybody would think we'd just built the Large Hadron Collider!) and so far so good, although I'd say at present, it's 95% standing to 5% sitting.

Sitting does remain an issue, and the pudendal pain is much worse than it was before surgery, but I can manage spells of 10 to 15 minutes, which is more than I could before Christmas, so hoping improvement will continue. Have been able to drive on short journeys of 10 to 15 minutes, and pain hasn't been too bad - car seat appears to be quite comfortable, and I suspect having to concentrate on driving means I'm not as focussed on the pain as I am when just sat doing other things. I also have one of the cushions that's been mentioned elsewhere on the forum (thanks Calluna) - which helps extend time I'm able to sit a little.

Off to see the pain specialist (Dr Greenslade) again next week - main topic is going to be medication. I'm still taking ibuprofen, but that's offering little pain relief now. My surgeon was surprised that I wasn't on anything else ahead of surgery, but the simple reason is that I was on medication (including amitryptiline, pregablin, gabapentin) when we were trying to manage the pain in 2005 to 2007, and (a) none of them provided pain relief and (b) they gave me severe headaches, even at low doses, and the higher doses compromised my ability to function, making me dizzy, slurring my words etc. So suspect this could be an interesting conversation, hopefully there are some other options available.

Have to say I'm feeling a bit frustrated that I'm still suffering a lot of pain, and whilst I know that the surgery offered no guarantees of improvement and that any improvement is likely to take 6 to 12 months to appear, I'm now keen to develop some better coping strategies, especially now I've returned to work, so life is starting to 'return to normalcy'. I've also got a slightly longer term objective - I've got tickets for events at the Olympic Games in the summer, so I'd like to be able to attend those in some degree of comfort!

Right, time for me to stop rambling, it's really good to speak with people who know what this is all about, it's helped enormously in keeping a positive mindset, so will post again in a few weeks to let you know how things are progressing.

Take care,

Andrew

Hi Andrew,

adg1403 wrote:I've returned to work in the last couple of weeks, on a phased return. Work has sorted me out with a desk that I can raise and lower (you wouldn't believe how much excitement that's caused amongst my colleagues, anybody would think we'd just built the Large Hadron Collider!) and so far so good, although I'd say at present, it's 95% standing to 5% sitting.

I also have one of these sit/stand work stations and don't use it as it's meant to. I'm working full time and also standing 95% of the time. I sit for my 30 minute lunch break (with a cushion, of course). How many hours per day are you working? The sit/stand station is fabulous for not sitting, but no so much for standing in ONE spot all day long. It's making ALL of my symptoms much worse. Way too much load on the pelvis and lower extremities. I'm an Admin. Assistant and my job is mostly comprised of computer work and answering the telephone. I try to go for small 5 - 10 minute walks when I can, but I can't leave the phones unattended and it's not nearly enough to relieve the pain of standing static for long periods of time.

adg1403 wrote:My surgeon was surprised that I wasn't on anything else ahead of surgery, but the simple reason is that I was on medication (including amitryptiline, pregablin, gabapentin) when we were trying to manage the pain in 2005 to 2007, and (a) none of them provided pain relief and (b) they gave me severe headaches, even at low doses, and the higher doses compromised my ability to function, making me dizzy, slurring my words etc. So suspect this could be an interesting conversation, hopefully there are some other options available.

This is something else we have in common. No pain relief but intolerable side effects. I've been trying to get into a Pain Center but am having a great deal of difficulty. I've been informed that "my case is too complex" and have been sent away with a sheet of paper with a dozen other local area Pain Centers. I've been advised to call around to see if someone else will take me. I was offered Lyrica at one Center, but when I declined, they said they had nothing else to offer me. I've already done every "conservative treatment" and have already seen 22 doctors (most of which had also dismissed me, instead of treating me).
It takes everything I've got to stand in one spot all day. There's no way I could do it medicated.

adg1403 wrote:it's helped enormously in keeping a positive mindset

Agreed!
Best wishes to you, Andrew!

Hi Karyn

Thanks for your best wishes.

My job also involves being on the phone for periods of time, so my work have sorted me out with a bluetooth headset that plugs into a normal landline phone, so I can go for a wander away from the desk if need be. Wonder if something like this might help you with having to stand for long periods? Let me know if you want further details.

Am into second week of my return to work - did 3 shortened days this week, and attempting three full days next week, so hoping to be back full time in next 4 weeks. Unfortunately had a bit of a flare up after physio session this week, so taking things steady for a few days.

Will post again after I've seen the pain specialist next week.

Regards,

Andrew

adg1403 wrote:My job also involves being on the phone for periods of time, so my work have sorted me out with a bluetooth headset that plugs into a normal landline phone, so I can go for a wander away from the desk if need be. Wonder if something like this might help you with having to stand for long periods? Let me know if you want further details.

Thanks very much for the suggestion, Andrew. Unfortunately, I don't think that would work very well for me. I need access to my computer and the abililty to write things down while responding to telephone calls.
Please let me know how you make out with the Pain Specialist.
Kind regards,
Karyn

Andrew - Do you have any other symptoms besides PN? You mentioned sciatic type pain. Where did you feel that?

Hi Karyn

My sciatic type pain emerged 3 weeks after the decompression surgery - you'll see earlier posts on this link suggesting that this was to do with the piriformis muscle being disturbed. Physiotherapy got rid of this after about 3 weeks, and hasn't really returned, unless I've tried to do too much, which resulted in it returning temporarily, but disappearing again after a few days - difficult to know if it's the muscles or the nerve having a flare up. So currently only have the pernineal pain that also existed before surgery, which means that I can still only sit for 10/15 minutes at a time, but that is helping to minimise and pain in my legs from standing a lot of the time at work.

Discussion with Dr Greenslade went well - have been prescribed duloxetine for next 3 months, which I think is a drug that has been discussed elsewhere on the forum. Still on the lowest dose of 30mg, asked to move up to standard 60mg dose after a month. There have been a few side effects, even at this low dose, first few days weren't great at all, dilated pupils, swollen ankles, and felt like someone had put an ice pack on my brain, even doing simple things like making a cup of tea needed more conscious thought than usual, so didn't have confidence to do anything complicated or that was potentially dangerous, like driving. Seem to be settling down now, but key step will how I cope with moving up to the standard dose.

Sorry that the phone suggestion won't work for you, hope you find a solution that meets your needs, hopefully your employer can help, if they haven't already.

Regards,

Andrew

HI Andrew,

I was just wondering if your surgery with Dr Wong was done through the NHS.

Also wishIng you all the best in your recovery.

regards


Jacko