Chronic Pelvic Pain Sydney

[Chand]

Hi Violet,

Thanks i hope it works, well i'm not sure about the 40% improvement from the injections. It would be different for everyone. Unfortunately you have to get the nerve block done to eliminate nerve compression as a cause of pain. It is a expensive procedure but i'm glad i did it. The MRI is also expensive and it's done by Dr Toos Sachinwalla (Recommended by Dr Vancaillie) they are in Sydney Northside imaging.

Right now i'm using external and internal trigger point release techniques taught by Sherin Jervis. I'm happy to report that my pain level has decreased, the golf ball feeling has decreased, frequent urination has decreased. I'm doing alot of stretches and managing my pain. There are flare ups but not as bad as it used to be.

I'll be seeing Sherin Jervis in September so she will review my treatment plan. I'm still not taking any medications.

[Jackson]

Hi Chand,
It's good to hear someone having progress with the conservative approach with Prof. V. We don't really get much feedback about Sydney , so thanks for keeping us informed on your situation.
Cheers

[lozzy89]

Hi everyone,
This is the first time I have posted on this site though I have spent a lot of time here in the most few years. It has helped me to get my head around this crazy and debilitating condition that we share.
I now realise things have never been great but I really developed symptoms while on a student exchange in The Netherlands (lots of bike riding). I tried physio and botox and was treated for thrush for years before I found my way to prof V.
It's now been a week since I had a bilateral TG decompression of the pudendal nerve.
I currently feel like my symptoms are worse!! Prior to surgery my pain had subsided greatly and was mainly characterised by an inability to have sex. Now, all the feelings that i had at the beginning of this journey - the itching/burning/buzzing feelings in the vulva and anus have returned.
Can anyone who has undergone surgery shed some light on whether this is normal?? I really really really hope so.
L

[Positivepoppy]

Hi lozzy
I had bilateral TG surgery 12weeks ago and the first 2/3 after surgery the pain was pretty intense. It did subside then for 8+ weeks but last 2 weeks has returned and been crying in pain. Many people have kindly posted that nerve pain can intensify around 3/4 month Mark as nerves coming back to life. It is a roller coaster but I remain hopeful and optimistic that surgery will help and I'll get my life back
The very best of luck with your recovery

[Violet M]

L, I know it's scary right after surgery and you are feeling worse because I had the same thing happen. Do you have pain medication to help keep the pain levels down a bit? Also, ice can be extremely helpful after surgery. Recovery can be a slow process but slowly this new pain should subside once the nerve calms down after being irritated during surgery. Try to take it easy and avoid anything that flares things up.

Violet

[catherine a]

Hi L,

Sufferers of PN have various levels of pain ranging from mild - medium - intense - extremely unbearable. For those who's pain is absolutely intolerable before surgery will report that post PNE surgery pain is probably much the same as before only with a few newer 'nerve firing' kind of feelings. For me, I didn't feel any more pain after surgery. It was much the same pain levels for more than 12 months. I slowly but surely noticed small changes of the next 3 year period but the first 12 months were pretty rough.

For those who's pain level is mild or medium then I think the rise in pain following surgery could be worse. Like Violet says, the nerve has been disturbed and will take some time to settle down again. This can be months or years. This is why it's a difficult decision to make as sometimes people feel worse after having PNE surgery. but I would say that the rise in pain will not be forever. Give it time to heal and setlle. At least 12 months anyway. I'm still not entirely cured of this condition and sometimes have Botox to the obturator muscle and nerve block at the coccyx to help keep the pain at bay. But looking on the bright side, the pain is never anywhere near as bad as it was before I had PNE surgery. So hang in there. Changes will be slow but give it time. Take things easy. The less stress you have the better for your recovery.

I run a support group in Perth and some of our members there have had surgery too in Sydney. If you're ever over this way get in touch and come along to our meeting. Stay positive.

Catherine (WA)

[Dizzyblonde]

Hi everyone, I've never strayed far from this site as I've been busy sitting on the fence and watching - surgery versus conservative measures. I was one of those candidates that Prof Vancaille offered bilateral TG back in early 2013 but with spinal cord stimulater also. I started medication too and dwelled (perhaps too long?) on whether I should have surgery or try conservative measures. Suffice to say I went with conservative. Over the past year I've been taking (pls excuse if I get dosages confused Bween mg & mcg) 600mg a day of Lyrica, 60mg Cymbalta, 10mg endep for PN/E. I already take 1mg of Rivotril also for a migraine condition. I started using a cream with 2% endep topically and had improvement. Over the past 12 months I've also been seeing the physio Sherin Jarvis who is spectacularly good and carrying on physio stretches at home as well as visits every couple of months. I'm seeing Prof Vancaillie & Shein Jarvis this coming Tuesday and I don't know whether conservative measures are going to cut it for much longer and perhaps I may have discussions to see if the operation is still on the table (minus spinal cord stim as I'm not keen on that). At my last visit prof Vancaille and Sherin Jarvis were both pleased and encouraged by my improvements. The topical cream seemed to improve my condition to where Prof Vancaille suggested to start reducing meds thank heavens. The side effects are very significant. I started with dropping the endep off and within 3-4 days my pain scale went from 2/10 to 8-9/10. I started endep immediately and relief came very quickly. I've been despondent ever since. I'd appreciate advice, I don't work and have made a lot of lifestyle changes, clothes, seating, cushions, social - no contact with friends for over a year. I feel for my poor supportive hubby! (I can only sit for half hour with cushion). The conservative measures don't look good, I'm medicated to the hilt. What to do, what to do.... I'd really appreciate anyone's take on this scenario, thanks

[Positivepoppy]

Hi dizzyblond
It is a really tough decision to make and certainly surgery isn't right for everyone. I was in such delibilating pain prior to surgery that when the consultant told me conclusively I had bilateral PNE and needed surgery asap I didn't have time to think or catch my breath, I took the plunge and had TG surgery. Looking back I probably rushed into it but that's my personality I like things done yesterday!!!
Surgery revealed that both nerves were in a sorry state and it is my belief that due to the poor condition of the nerves surgery was the only option and I remain positive although still in pain.
Surgery is tough on you and also your husband as they need to look after you. My husband had to take time off work after surgery and do most things for me for the first few weeks.
I don't envy your decision maybe write down and make a list pros and cons. Prior to surgery I had a ultra sound test that showed both arteries were sluggish a sign pudendal nerves were impinged on them that convinced me to have surgery?
I wish you lots of luck, stay strong and I'm sure you'll make the right decision for you
Happy Easter

[Dizzyblonde]

Thanks PP, I'm glad you're on the 'other side' of your operation now and on your way to a great recovery I'm sure. Just about every post I've read indicates recovery is slow. I think my stumbling block initially to surgery was the recommendation to have a spinal cord stimulator implant. I had an initial interview with the rep and I was shocked by aspects of its function and although in great pain, I took stock of my condition and asked Prof Vancaillie if I could try the conservative route first. He of course obliged and I have slowly but slowly had improvements over the past twelve months with the help of lots of medication. I've felt mildly optimistic until just recently when I started very very slowly reducing just one med with disastrous results and I'm quite shattered. I think my consult tomorrow with Prof Vancaillie and Sherin Jarvis my physio is very timely in view of how I am feeling. I don't even know if surgery is still on the table but I'll wait and see what they advise and try not to second guess them with only one more sleep before my appointments! I wish you well on your journey to recovery, I don't think waiting to have your op would have done you any good and it's time well spent for you now to have your recovery rather than prolong your pain. I am feeling the side effects of my medications somewhat persistently and had hoped that would have settled. I don't enjoy distributing all my pills each week, I currently need to use a pill box which is quite full and I'm only 54 - with plenty of time for pill boxes ahead

[Positivepoppy]

I wish you lots of luck for your appointment tomorrow and hopefully you will start to feel better
Take care