Can a firm diagnosis of PNE lead to treatment, or is it just pain management?

I've had pelvic pain for 10 years, starting with vulvodynia and internal vaginal pain on intercourse, which has progressed to also include other sensations like burning, tingling and pinching, and pain in other areas such as base of spine - and now also bladder pain and abdominal discomfort. My own research points towards pudendal nerve entrapment, or pudendal neuralgia - purely on the basis that reading about these conditions ticks all the boxes.

I have had vaginal and pelvic scans and MRI scans of hip and pelvis, and urine tests from time to time, and no infection or cause of pain has been found, except for a slight degree of osteoarthrits in the sacroiliac joint. (No inflammatory disease). I was referred at one time to a pain clinic and prescribed amitryptiline which I find difficult to take as I suffer from ME/chronic fatigue syndrome and am extra sensitive to medication. I manage my condition by sitting as little as possible, and when on a chair or when traveling I always use a U shaped cut-out cushion (my own customised design with cover/bag, very happy to share details if anyone interested!) I stand as much as possible and avoid movements and exercise that exacerbate the pain - stretching and bending and squatting mostly, which cause me delayed pain of various kinds the following day, as not all pain and discomfort is immediate.

In the last 6 months things have been getting worse. My GP has recently retired, and my new doctor seems to feel reluctant about referrals if a diagnosis is merely going to indicate a condition that is not treatable except by pain management. I understand diagnosing this condition is not easy. My feeling is that I would like a firm diagnosis, if nothing else in order to understand my condition better, but do not wish to provoke disagreement or cause friction with my doctor without reasonable cause.

Is a firm diagnosis possible? And if so, are there different causes for pudendal neuralgia, some more treatable than others? Does this kind of condition invariably get worse as time goes on? I am now 58, and things have deteriorated more for me gradually over time, though the condition fluctuates.

I have read that there is a doctor in Manchester (Dr W DeMello) who has experience and knowledge of pudendal neuralgia and I could possibly ask for a referral to him.

Any advice, comments, and ideas would be very welcome.

Thanks!

12 Replies

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  • I know that people have been referred to Dr De Mello from out of area, but it will depend on how open your GP and then the PCT responsible are. However, there isn't a lot that can be done at the moment for PN patients in Manchester although things do change so it may be worth speaking to them first hand to find out what is available.

    Dr Greenslade in Bristol (Frenchay hospital) seems to be very confident that a full treatment package for PN will very soon be available in Bristol so it may even be worth considering a referral there..

    If the onset of PN does not involve trauma (say childbirth, some surgical interventions, a fall) the prognosis for a good recovery are much better. In this case physiotherapy with a pn aware therapist is a good place to start actually physio is recommended in any case, I should say.

    Take care,

    Helen

  • Thanks for your reply. Manchester is about 40 miles away and Bristol much further, and because of my ME I find traveling any distance quite daunting. Nevertheless I will think about what you say and bear in mind that Bristol may be the best bet.

    I'm grateful for all your thoughts and advice.

  • Hi, listening to your story images mine, I am a few couple of years younger and have been suffering with the same symptoms for 9 years. I also agree with you that you do deteriorate over the years and that the pain fluctuates for no apparent reason. It has its own agenda. I have tried everything and mean everything to work out the reason why one minute I was a happy sexually active lady to one that "doesn't even go there" as the pain, esp afterwards is agonising. For me the sensitivity has got to be the worst thing ever and living every day with some form of discomfort whether its the vagina, bladder, bowel gets me down, I just want rid. For me the alterative therapies didn't help infact made my condition worse in a way. Medication has helped me keep my pain under control and like you now seem to have some form of sensitivity to meds. I can tolerate Amitryptyline, although can't be 100% sure that it works. I have weaned myself down to 10mg but end up sticking to around 25mg as it helps me sleep, I take Pregabalin 100mg twice a dayand that has helped me with my over active central nervous system, hot flushes etc, but the best was Baclofen as it helps with my muscle pain, I take 10mg at night. Diclofenec, anti-inflammatory also help with flare ups.The myofascial pain is a sign that the nerve issues are well under way. PT did not help. Through my journey, and its been a long one, I have had 11 nerve block injections, but for some reason I reacted badly to the steroid injected, and my pain levels hit the roof. So I gave up on them, I also tried botox in the pelvis but that didn't help. What I did discover though since I have a hysterectomy prolapse repair in 2010 that I now have a large ovarian cyst and two large Tarlov cysts in my spine. I have sacroilliac joint dysfunction and have a slight inflammation in the bowel, diverticulitis and minor disc issues in my spine!

    Did you ever have an MRI of the lumbar spine? it might be worth having one done. I was told that my Tarlov cysts on the base of the spine are incidental findings, but basically they are nerve roots and are found in S2/S3, so in my opinion quite likely to be the cause. I did travel to France as the next step would really be nerve decompression surgery, but even the French Dr's were not sure it was the pudendal nerve that was the cause of my pain. The first thing is that you have to manage the pain as best as you can, and that means taking medication of some sort. Can you tolerate lidocaine? I have found a chemist that will compound it fo you. For me was emu oil which I put in the vagina at night - can't tolerate oestrogen but my body needs it especially in the vagina as the skin is fragile. After three attempts of emu oil on various sites etc, I found the one which is made from an actual emu farm in MA in the States, its been my life saver. I often wonder what is going to happen to me, how I will be in the next ten years. Without the OC and TC's would I be cured, and all the other inflammatory issues going on also disappear? I believe that hormones have played a massive role in the start of all of this, would you agree?.I am going to have them all tested, all, even testerone I would like to hear more about how your pain first began and any trigger issues that you may have had, or me it was a routine smear. So the answer to your question is to get your pain under control which will enable you to continue looking for the reason for your pain. There is no doubt in my mind that you have PNE, is there a cure? that's a million dollar question. I am not giving up just yet, I owe it to myself and others that suffer from this dire miserable condition to keep searching and you must too.

  • I also have PNE symptoms although have not been diagnosed with the condition as yet. Mine also started after hormone replacement therapy after a post menopausal bleed. I am currently on amitryptiline for pain.

  • Thanks so much for your long and detailed reply! The only thing I didn't mention is that I had the last few vertebrae of my spine surgically removed as a teenager as it was mildly deformed at birth and I used to do a lot of riding and sports that were making it a problem. I had absolutely no problem with the surgery either then or in the following years, and I still have no idea whether this could have any relevance. I have noted what you say about having an MRI of the lumbar spine, and this might be as you say of interest. The onset of my pelvic pain seemed to start around the time I started the menopause, but there was no one event that triggered it, and it has fluctuated a lot. I would say that I would agree with you about hormones. I have used Vagifem pessaries during all this time as my vagina has been very dry and this may have helped a bit by keeping the tissues more supple, and I use Vagisil cream externally (which is lidocaine as you mention) and find that is useful. I've also used hydrocortisone cream on occasions on the suggestion of my doctor but I keep that to a minimum.

    As my pain levels are for the moment within quite manageable limits I try to avoid all medication as far as possible as I find the side effects (because of my ME I think) are at the moment worse than the pain. What I really want to know is whether it is worth my while pursuing a firm diagnosis, when it seems not much can be done anyway - until you reach levels of pain that are so intolerable that you'd do anything at all to seek respite. With many conditions it would be obviously advisable to try to get a diagnosis and then early treatment, but in this case I feel that since there are no specialists or therapists of any kind - as far as I can tell - in my locality of West Yorkshire, I'm not going to be likely to find anyone who could be of much help. In which case I will be doing what you have been doing and continue to do all this time - manage the pain, and hope things won't get too much worse!

    The thing that's helped me the most is mindfulness meditation, and especially a book called Living Well With Pain and Illness by Vidymala Burch. The other thing that's helped is the internet, and this website and forum in particular. Thank you for putting so much of your time and effort into searching for answers and sharing your experiences with all of us, it's much appreciated.

    Very best wishes!

  • I am seeing Dr. Antolak in Minneapolis Mn. and have gone through a series of steroid shots which have helped a lot and I have a much more manageable life with the shots and taking low doses of a muscle relaxant and Valium. I will eventually have the Pudendal Nerve Decompression surgery but not until my life settles down. So yes, there is treatment and it does work - I am sure it works better on some than others but it is worth a try!

  • I have very recently joined this site ( although I have have had sitting probs for 17 years due to repair op) all that you write is so familiar. The standard MRI does not show nerves. The one that now does show nerves is based in London. I'm still thinking about it. do I want to pay for confirmation of having a pudendal nerve problem??

    I wish all us Pudendal nerve peeps could be somehow connected more.

    I felt you put your situation forward so well. That bit about delayed pain I know only to well. I'm in East Midlands. hope you will one day get this. Hug

  • Good to hear from you. I haven't posted here for a long time but read posts regularly. My condition evolves, still technically undiagnosed, pain levels variable and symptoms varying as well. So many people who post here are in a really distressing condition and this forum is a great source of support and information. Hope you'll find it as helpful as I have and do continue to use it - we all need to keep in touch!

  • I have payed to have the MRI neurography in London NO MRI even ths tone can show PN, it is used to look for other problems more of a ruler outer than a ruler inner if that makes sense. It has showed three different things it could be but probably not. It cost £2300.00 plus Dr Baronowskis £££ to see me. I am glad I had it done, but I went with the knowledge knowing it was HIGHLY unlikely to show anything wrong with the PN.

  • Thank you 66 Crusader for these interesting facts. That decides it, I won't be bothering with this type of MRI .

  • And yet it can show up Nerve Compression according to another post on another support group. But there's more to it than just having the MRI scan

  • I had an MRN done at Medtel in 2010, the MRI report was one of the best I have had done, but it didn't show up anything out of the ordinary, so a bit of a waste of time and money. But we all hope that it may show something. Lets face it, that's all we all want is confirmation of what's causing our pain.

    Since my post two years ago, nothing has really changed, other than my vault repair needs to be done again, had my ovaries removed, due to ovarian cyst, had major tooth issue after root canal, yes apparently it can happen when trauma hits another part of your body. Now have issues with tips of fingers, maybe raynaulds disease, more tests.... give me strength.

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