HELP RE POSSIBLE PUDENDAL NEURALGIA

I would be so grateful for advice as I am exhausted from trying unsuccessfully to get help from the NHS for my various ailments!

I have had symptoms which seem like they could be PN or PNE for a few years but over the last few months it has got worse and I feel I must find the right person or direction to follow.

My symptoms come and go in intensity - I originally had cystitis 7 years ago which developed into what I thought was interstitial cystitis. This became chronic but it was also accompanied by clitoral pain and sensitivity which I still have and which I now discover could be connected to PN.

I now have constant aching around my perineum and more particularly the anus. I also get low backache and it can go down my legs too. I went to see a women's PT recently (GP referral) but I don't think she had any idea of what was wrong as she insisted I do loads of kegel exercises "to get the blood flowing". I felt uneasy about this as I had memories of Kegel exercises causing problems before but thought I would give them a go as instructed. I did them as she told me to, in every sort of position and the next 3 days I was in agony.

I have some trouble with bowel movements as although I feel the need to go and the stools aren't hard at all, it is hard to pass them through the anus. I tried massaging around that area a while back (after reading Amy Stein's book) but it was so painful I didn't continue.

Could it be simply muscle imbalance or spasm in the rectum?

I would be so grateful if anyone has an opinion or could suggest a physical therapist who knows about PN and/or can do rectal/vaginal massage/therapy or investigation and diagnosis.

I have looked at the list of physios on the pelvicphysio website but they don't seem particularly specialist re PN from their website info.

I live in Suffolk but am prepared to travel. I am 61 and desperate to get my life back.

9 Replies

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  • Admittedly the pelvicphysio website you mentioned is geared towards pelvic floor dysfunction mainly connected to bladder issues. . . However, I would give the individual practices a ring or e mail, and discuss your own problems with them.

    You mentioned 'Could it be simply a muscle imbalance or spasm' and the answer is yes, it could. I would then say that the physio's you have mentioned will be the most appropriate people to treat this issue.

    You know now that kegel exercises are not recommended, stay well clear, OOPpps too late!

    Glad things have calmed down.

    But we all try ANYTHING that someone who is supposed to know, says will help.

    I think that the fact that you are experiencing anal pain with massage does indicate that a problem there needs to be addressed.

    I have had anal spasms before, Proctalgia fugax, always in the middle of the night for me just as described here en.wikipedia.org/wiki/Proct...

    but it is episodic, not a permanent thing. So painful, massage does hurt but also helps.

    I would say mine occurs because of PN but then disappears completely once subsided.

    Yours sounds a little more constant? ?

    You mention that the anal pain is an achy pain . . . does it ever follow a particular path of rectum pain too? Mine is this latter one. I could draw a line where my pudendal nerve is and I'm sure that I would be correct (wow bragging again!) if there is ever a nerve geography contest I'm your sure winner :)

    Whichever, The pudendal nerve could be the culprit and I would say that a pelvic aware physio would be your best bet for starters anyway.

    Explain your PN worries and a competent physio will be able to rule pelvic floor muscle problems in or out, at the very least.

    At a guess (I know I shouldn't) I would say that your problem could definitely be pudendal related but probably at the lower branches of the nerve. If this is the case a good course of physio along side some medication (gabapentin/pregabalin with cymbalta or other anti depressant) nice.org.uk/nicemedia/live/...

    Then again you have mentioned pain going into your legs. . . this may be attributed to a 'pain wind up'. Hopefully if good targeted physio does help this problem will also be a thing of the past too.

    This would always be a good first step regardless of pathology, some of the physio's are NHS and therefore need to be referred through your GP and/or another consultant. I'm sure your physio of choice will be able to let you know how to proceed.

    I sincerely hope that this is all you will need BUT there are next steps if things don't get sorted.Although a multidisciplinary approach is also a good idea and I would also ask for a referral for some cognitive awareness and mindfulness training from your GP too.

    This seems to be the modern way to tackle pain, although I believe that it definitely does have it' s merits, it should not be a stand alone treatment where pelvic pain and especially pelvic nerve pain is concerned.

    Take care,

    Helen

  • Hi Helen

    Thanks for your prompt reply - I am so glad to have found this help network after struggling for self help for years!

    I personally cannot "track" the nerve pain - it's just an all-encompassing ache that can be mainly around my bum or all along the perineum including the pubis. I can get burning too and I don't know if that's PN or interstitial cystitis! I shall certainly try contacting the physios to see if they know anything about PN - don't want a repeat of the last one (Kegels!).

    With regard to the cognitive awareness - is this a general thing or does it have to be specific to a particular illness (ie PN/cystitis)? Just wondering if the GP will know what I am talking about.

    Could you tell me if the medication you mentioned has significant side effects? I very much want to eventually get back to exercising and would hate anything which would make me drowsy or affect my muscles. I realise I am being a bit optimistic but that's me!!

    Thanks again Helen.

    Corinne

  • Your symptoms sound very similar to mine - chronic cystitis, bowel problems, anal pain, pain down the legs, lower back pain. I had pudendal nerve entrapment and had surgery on the left a year ago. I went to see loads of physios who did internal work and suggested kegel exercises that caused more pain and flare ups. I now see a osteopath occasionally for internal work - but it's more a treatment of the symptoms than of the main cause - which was the trapped nerve. Obviously if you have pudendal neuralgia - the muscles will all be in spasm. Pain referred down the legs does sound like nerve involvement. I could let you know the details of the osteopath I see - but he is very conservative in treatment and for years tried to talk me out of thinking I have nerve entrapment - however I do think he helps with the pelvic floor muscle spasms - which is why I still see him. Another downside is how expensive it is to see him. But I do think with pain like this a multidisciplinary approach is very important. It's a shame that it often has to be funded privately. Please get in touch if you have any more questions.

    Fiona

  • Hi Fiona

    Thanks so much for your reply. It is such a help to know there are others out there like me!

    Could I just ask you how you got a firm diagnosis and with whom? Do you think this is the best way forward initially for me or should I try a physio/osteopath first?

    Also, have you tried or had any success with self-help as in Amy Stein's book "Healing Pelvic Pain"? I have that book but when I tried internal massage it was so painful that I stopped! I am so confused. I will try anything/go anywhere to try to get better.

    Are you able to lead a normal life now? I think I read somewhere you went to France - ironically I have just moved back from France! I would be interested to hear whether you think it has all been worthwhile; sorry to give you more work! I did see an osteopath myself for some weeks back in London before I moved to France - for the interstitial cystitis - I think it helped a bit (internal manipulation) but he seemed to think I was cured - how wrong can you be?!

    I am desperate to get back to being the fit person I used to be. I was OK until I got the initial cystitis attack 7 years back; since then it's been downhill all the way!

    Thanks again Fiona. Wishing you well. Corinne x

  • Hi again Corinne,

    I take tramadol for the ache pain that I get across my buttocks. I know that this is dur to my piriformis muscle (which is where I have the nerve problems, so high up by comparison)

    This drug can cause constipation which isn't the ideal when dealing with pelvic/bowel issues, so I do try to be sparing with it and use senna and/or movicol along side when needed.

    I also take cymbalta (anti depressant) and although I know there are side effects this one works well for me (not anything like 100% but it helps) I do have THE most strange dreams if I forget to take it (some horror types) but find them quite entertaining tbh (like you I am a total optimist :) Best way! )

    I used to take gabapentine but was completely stupid with that one so tried (after a GPO fight) to get pregabalin but that didn't suit either. So at the moment that's all I take.

    I didn't ever used to like taking anything but there is a chance that this 'wind up' of symptoms could start as the pelvis is such a complicated interacting structure with so many organs and functions. Sometimes a working prescription can address this 'wind up' in the early stages so it';s always worth while considering.

    Do monitor any drugs taken for side effects of course but also for actual benefit, sometimes we take these things ad infinitum without really studying if they are beneficial. If not, STOP.

    It must be mentioned that with drawl for some medications can be difficult too.

    I mentioned the cognitive behavioural therapy CBT and mindfulness because it is the newer buzz blah,blah :0 to help conquer chronic pain. Many pain consultants have this as an option now. It is worthwhile taking advantage to help deal with chronic pain if you have somewhere nearby (if not there is an absolute ton of stuff on the internet and books etc. about both)

    I would follow this up if it is an easy option and on offer but you also need 'fixing' too.

    If there is a physio near you who is PN aware, go there first of all.

    It can be something that could really help, some are cured :) especially if there is no history of trauma, like onset of symptoms following childbirth, fall or post surgery.

    You haven't mentioned this so I hope physio can get you back to your old self. BUT as Fiona said it needs to be the right kind of physio.

    If I were you I would probably make some inroads to see a consultant who is PN aware too.

    They are Dr Greenslade (pain consultant) in Bristol also Dr Wong (surgeon) but Dr G is usually the first stop.

    Dr's Baranowski (urologist) and Curren London

    Dr De Mellow,(pain consultant) Manchester

    The all do have a private practice (not sure about Dr Curren actually)

    But are all NHS too.

    Hope this helps,

    Helen

  • Sorry you asked about which Dr. . .I see Dr Greeslade in Bristol. I can recommend him wholeheartedly.

    He studied with Professor Robert (author of the Nantes Criteria on PN and the PN bible it seems) so did Dr Wong (it's possible MR C Wong??)

    He has very diligently studied my case and has diagnosed sciatic,pudendal,inferior cluneal and possibly post femoral cutaneous nerve issues at pifirormis level. He does listen and tries his best to match symptoms for a complete diagnosis, although this can be very difficult at times.

    Are you anywhere near Bristol? I'm in the north but fly down (easy jet can be stupidly cheap)

  • Hello,

    I have the same symptoms. Especially problems with spasms in the perinal area and difficulties with bowels. My PT said it is difficult to pass the stool, because the muscles in that area are tight. She gives me release with massages and lengthening of that area - outside and inside. Menstruation, stress and sexual intercourse make it worser...do you also have pain during a bowel movement sometimes ? Val

  • Hi

    Thanks for writing. Yes I definitely do have probs with bowel movements. Quite often I feel a desperate urge to get to the loo (say after breakfast and coffee!) but when I get there and try to go it is really hard for it to come out! (sorry to be so graphic). It feels like the hole is too small and it really hurts. I did once try self massage of the perineum and anus (God, it's weird writing this stuff) on the advice of a book I read on pelvic pain but it really hurt in the bum bit so I stopped. I haven't had any PT opinion on it cos the person I got to see from my GP knew NOTHING about such probs and just gave me kegel exercises to do which made everything worse.

    One question for you - does your problem come and go? I am fairly bad now (dull aching, bowel probs) but then I can have days when I am OK. This puts me off seeking help - does this happen to you and do you think I should see a specialist PT for diagnosis? Has it helped you? Thanks so much - so nice to hear someone has the same probs. Stress does make me worse too but luckily i seem to get away with sex! Corinne

  • After 5 years of NHS not knowing what to do, I was lucky enough to find a "physio" who has really helped. He has been through this himself and will be able to help you. He does SKYPE appointments and so you won't need to travel.

    David McCoid

    Restorative Exercise Specialist

    MovNat Certified Trainer

    freedomfrompelvicpain.com

    david@freedomfrompelvicpain.com

    Hope this helps.

     Paul

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