Health Organization for Pudendal Education

Hi everyone, hope i can get some feedback and suggestions on this site. I have had chronic pelvic and vaginal pain for over 3years and to date no definite diagnosis.
It all started in 2008 after i had urethral stretch for frequency and bladder fullness. I had the same symptoms in 1996 and 2001 and were resolved both times after urethral stretch was performed. In 2008 when symptoms started again, and no infection found, i had the procedure again and as i was 51yrs at the time my uro thought menopause
might have be causing the problem. After the procedure instead of being resolved pelvic pain, bladder pressure, frequency, trouble voiding became worse and i was in so much pain i could hardly stand to work. I went back to my uro and he sent me for urodynamic tests which showed a slight hesitation in voiding probably due to the pelvic floor. He put me on a couple of bladder relaxers, but side effects were too bad and only helped with frequency, not pain. I have no burning when voiding and was sent to pelvic floor specialist who couldn't find any tightness, but i continued for 8mths and at this point she thought i needed another uro opinion as i was making no progress, only getting worse. By this time vaginal ache had started and i saw a prof. of urology at the Royal Womens Hospital who did cysto with hydro to check for I.C., but nothing but a perfect bladder which was on the large side. She put my on Endep (amitrip) 10mg and suggested i go back to pelvic therapy even though it was not working. I then went to my Gyno who found no pelvic floor tightness, but an ovarian cyst on my left ovary was found after c.t. scan and i wanted him to to a laparoscopy to see what he could see as i had c.t. scans, ultrasounds and was getting no diagnosis.
He did lap and as i have had 3 c-sections and hysto with lots of endo stuck to evey organ 10yrs ago, he suspected adhesions would be a problem. He said i was a mess with adhesions every where bowel stuck to bowel, pelvic area and he couldn't even see the ovaries, so he did vaginal ulrasound but no cyst showed up. He assumed that the adhesions, even though surgery was years ago could be contributing to my pain. I could no longer work, standing, walking makes it worse and laying down with a heatpack is the only time i get some relief. My G.P sent me to a pain specialist who tried accupuncture and increased endep to 15mg and thought i had visceral pain, as i didn't have the typical nerve pain, burning, stabbing, numbness, it just felt like my bladder and urethra was going to burst with pain and once that started, vaginal ache followed. I did well on 15mg for about 12mths, and late last year was diagnosed with stage 4 thyroid cancer with spread, but not related to pelvic pain. I had treatment and while i was going through that, the pain seemed to become less. Maybe my body was just giving me a break so i could deal with the cancer. Im doing ok and having regular check up's but this pelvic pain is destroying my life..... or should i say i have no life as most of you would understand. Im single and feel very isoloated, cant even walk 20mins at the moment and sitting is a problem once vaginal pain starts. Pain specialist said i could try pudendal nerve block, but there is no evidence that its nerve related and it wouldn't be a permanent fix and could make pain worse. I think that when i had the urethral stretch nerves were damaged and perhaps the adhesions are not helping. I dont know what to do next, my g.p. said i can go up to 20mg endep, but i already suffer constipation and i have heard weight gain is a problem with this drug and that would cause more pressure on my pelvic area. Please can someone help!!! Is anyone on endep at higher dose than 20mg and what are your side effects? I have tried movicol for constipation, but for some reason i feel more pain after taking it, or maybe just a coincidence ? I also cant tolerate any of the strong pain meds like tramadol, oxycontin ect. and my pain specialist said even if i could tolerate them, i would end up going up higher in dose until nothing helped my pain.Thanks for reading my very long story.

Hi Lynette,

I'm so sorry to hear about all you've been through. I'm from NZ, but there are Australians on this forum who may also be able to help you.

Meanwhile, re amitriptyline, if I were you I'd heed your doctor's advice and try the 20 mg. I used to take 30 mg and was told I could go higher, say to 40mg, but it made me sleepy and I needed a clear head to work, so I settled on 20 mg. The recommended upper limit for amitrip. for pain (as opposed to depression, for it's an antidepressant) varies, but I'm under the impression that there's nothing much to be gained, pain relief-wise, at higher than 50 mg, for most people. I still take it, and I've never gained weight. It's often used to relieve intersitial cystitis as well as pudendal neuralgia, so it may well alleviate your symptoms, at least in part. Bladder and urethral symptoms can certainly be related to pudendal neuralgia, whether the nerve is entrapped, or compromised by pelvic floor dysfunction; I've had them myself. I can also relate to your abdominal surgery and adhesions history; a few years ago, in an effort to relieve my pain - on going since decompression surgery in France in 2004 - Professor Thierry Vancaillie in Sydney cleared the extensive adhesions, but to no avail.

Has anyone suggested you contact Prof. Thierry Vancaillie in Sydney? He's a gynaecologist who's become a PNR specialist and runs a PNE clinic at the RHW.

I hope this helps. Stephanie

Thanks Stephanie for your reply, sometimes if feel like im the only person in the world trying to get a definite diagnosis and the right pain relief, but i know that there are millions world wide. I have as from last night gone up to 20mg amitrip and i think, from what i remember, it takes a few days to a week to experience any results. I will have to make sure it doesn't give me heart palpitations as due to my thyroid cancer removal i have to keep my thyroid meds suppressing so im kept almost overactive and that can cause palpitations, but will talk to my oncologist in a few weeks.

Thanks again

Hi Lynette,
I hope you get some answers to your problems, even ruling PN out would be a step forward, everyone is SO helpful here. Take a look at the home pages as there's a list of Doctors and PT's that may be able to help you. Check out the symptoms too as nerve issues can manifest themselves in so many different ways.
I don't have any endo problems myself but did read this http://en.wikipedia.org/wiki/Endometriosis If you take a look at 'Causes of pain' this is the last bit which I found interesting . . . . Also, endometriotic lesions can develop their own nerve supply, thereby creating a direct and two-way interaction between lesions and the central nervous system, potentially producing a variety of individual differences in pain that can, in some women, become independent of the disease itself.[3]

Here's hoping you tolerate the increased dose, Lynette, and that it helps. As I recall, when I first started taking it, it helped with sleep immediately but didn't start to dampen down the pain for about 3 weeks. Maybe your response will be quicker, given that you're simply increasing the dose. Have you thought about seeing Prof. Vancaillie in Sydney for a PNE assessment? Have you considered avoiding sitting altogether and seeing if that reduces your pain? As you're probably aware, a compromised pudendal nerve is irritated by sitting (although not by sitting on the toilet). For some people, sitting causes pain immediately, but for others the pain is delayed a day, two days, even a week.

Hi Helenlegs & Stephanie,

I have found just by going up by 2.5mg (17.5mg total) that it has helped with the pain and its only day 2 of new dose. I still think that when i had the urethral dilutation 3yrs ago for frequency and constant full bladder pain, that somehow a nerve at the top of the urethra or bladder was damaged as all my pain became worse after that. I also think that maybe my extensive adhesions from my c-sections and hysto may be pulling on nerves thats why standing and walking bother me the most. I find once the pain starts it also starts the vaginal ache and laying down is better than sitting.

Its funny because my pain symptoms don't fit nerve pain e.g. i have no burning, stabbing or numbness pain the only way to describe it is if you had a bad bladder infection, without the burning, just a constant full bladder and urethral ache like your busting to go to the loo and it just gets worse when the vaginal ache starts. As i seem to respond to amitrip my conclusion is that it must somehow be nerve related even though i don't fit the usual nerve pattern.

Stephanie, i live in Melbourne and i don't think i could afford to go to Sydney, im single with no partner and very little family and as this has caused me to stop working im on a disability pension and every 3mths have to go back to Hospital for my cancer check ups as im still in my first year since surgery and treatment, so finding the money and the time in between hospital check ups may be a problem, but i will keep it in mind. The good news is Movicol morning and night seem to be helping with constipation, i bought some prune juice today so i thought i would have 1/2 glass a day Yuck!!! and hope it helps.

Thanks so much for your support,
lynette x

That's encouraging news about the amitriptyline, Lynette. I do hope your discomforting symptoms continue to improve. Do keep us posted. Take care, Stephanie

Hi Lynette,

Im Erin and i live in Sydney. Like everyone on the forum we are all here to listen to each other n provide assistance.

I am fortunate to be under the care of prof V and also my pain dr without the two of my important ppl i dont know where i would be. I had pundendal surgery two years ago and recently had a stim inserted and still going through the teething with the stim.

If you need to talk to anyone pls pm me and i can give u my contact num n email.

Good luck

Hi Erin,
thanks for the reply i tried to PM you, but it wouldn't go through. I'm not sure whats wrong with me or if i will ever know just want some pain relief.

thanks lynette

Hi Lynette

I have pm u with my details