Sounds Like I Might Have PN - UK

[Charlie123]

Hi Clare, i read your message & felt compelled to post. I too had similar symptoms to you 18 months ago & did lose a lot of weight. I think this was down to worry. despite being a health professional i struggled getting the correct diagnosis. i tried all the conservative treatments & had bilateral pudendal nerve decompression in france in june of this year. it transpired i was trapped bilaterally but worse on the right. im slowly recovering - back to work, driving & sitting. please send me a message if you want any details of my journey & if i can help you in any way. i did try virtually all avenues of treatment before opting for surgery which isnt always the answer. i would just like to take this opportunity to thank everyone on this forum for your help & information.
caty

[ClareW]

Hi,

HerMajesty - The rare form of thrush was Candida krusei, but I have been tested twice for this after the treatment and it came up negative both times. I've also been tested for other STD/infections, both genital and urinary, so I think all is OK in this respect.

Dragon - I could be peri-menopausal, I have to confess to not knowing much about it, so I will check out the site you recommended. When they examined me, the doctors said that they could not find signs of 'vaginal atrophy', so it was unlikely the symptoms were due to the menopause/per-menopause, but it is of course possible..

Charlie123 - Thank you for your message. I suspect that my feelings of light headedness/wobbliness are due at least in part to my worry and unhappiness and I have literally 'worried myself sick'. I have wondered whether if the other symptoms were to go away, I would be back to my old bubbly self, but of course it is impossible to tell. I would be very interested in hearing your story and will send you a message. I'm very glad to hear that you are recovering x

[Bobby]

Do you ever find yourself tensing your pelvic floor, maybe do to the pain? Doing so will have a reverse effect and cause more pain and make things worse. If you find yourself tensing your pelvic floor (muscles used to control urine flow) than I would recommend reading "A Headache in the Pelvis". Also if that is the case I have more advice I can give you.

So my advice is just ignored? Myself among others have found great success with this protocol. The pain is caused by the over tensing of the pelvic floor and the over tightening of the pelvic floor is due to the pain. It's a vicious cycle that needs to be broken. Your pudendal nerve is not likely "entrapped" but rather just being irritated do to overly tight pelvic muscles. The pudendal nerve spans from your spinal cord, down the side of the right buttox slitting into threes, 1 ending at the end of the penis or clitoris and the other 2 going down each of your legs to your feet. Therefore you need to stop subconsciously tensing those pelvic floors and stretch stretch stretch all the pelvic muscles as often as possible. Also its dangerous to force urination or BM as that will only strain your pelvic floor. This is the answer to all of your pains. Try it for a couple months daily and if you see no improvement that go ahead and get your unnecessary surgery. I have been to an all time low do to alot of the very same symptoms alof of folks have here but am now seeing great results. I'm just here to spread the word and help as many as I can.

[ClareW]

Sorry Bobby, I wasn't ignoring your advice, just hadn't got round to digesting it yet... I am grateful for all the advice I have been given.

[helenlegs 11]

Hi Clare,
Sorry you are going through this but hope that we will be able to help You have had some good advice so far. It is often a process of elimination and many things need to be taken into consideration. Thankfully some problems can be seen (or not) fairly easily, often the problem is that pudendal or indeed any pelvic nerve problem is usually last on any doctors list if indeed it is listed at all.
Just to say I am in the UK too. I wouldn't worry too much about your GP just offering amtryp, that is a first line of neuropathic defence, so to speak and it can help. Although it is especially helpful combined with an anti depressant like cymbalta. I would always suggest that if you do take any medication it is taken separately as you are doing, then you can see what works and what has no/little or any adverse (side effects) that can not be tolerated are not worth tolerating. Any side effects do need to have time to see if they will lessen or disappear, as this usually does happen. It's all a bit of an experiment.
Bobby you are right, of course tense pelvic muscles can cause PN and many people as you mention, get extremely good results with pelvic physio PT for this. Unfortunately all PN isn't the same, after all, as you also say the pudendal nerve travels thru' the pelvis, branching into three separate nerves (although they terminate in the pelvis and not the legs or feet) so there can be a few different places where the neuralgia occurs, not just at the pelvic floor. This means that everyone doesn't benefit from the same treatment, although I think most people have already mentioned pelvic physio as an initial approach which hopefully will result in a good outcome as it has for you
I don't think anyone has mentioned surgery?
Take care,
Helen

[ezer]

Bobby,
Many of us have done the "headache in the pelvis" clinic. We were not successful. it looks like you had a psychosomatic issue so your were successful but don't assume that we all fall in that category.