I have been told I have pundendl nerve neuropathy.....!
I have been suffering 24/7 burning & cystitis like pain in bladder & backside.
I have had all the tests & investigations for water infection, bowels checked , gynaecologist, MRI , C T , etc all come back normal...!
Can anyone tell me if it’s normal for people to suffer such sucidel pain like this which I have had since July 2017 ......,!
Can anyone give me any advice on where to get some professional medical help ?
Hi Denise,
I,m sorry for your suffering, this is a tough, tough condition to have which is poorly resourced or understood. I have had it for over ten years and for many of those I was suicidal which is not unusual. I don,t know where you are Uk or States, but you could start with a specialist physio to see if they can help. Different people have responded to different things so it's difficult to recommend any one treatment. Some have benefitted from decompression surgery, or physio,or mindfulness or many other stratigies.
I hope this is helpful.
Regards lucy
Hello Denise,
You have obviously been suffering for a long time without any real help or advice from your doctor. I'm sorry to hear this. I agree with Lucy that you might best start with an expert physiotherapist. If you take a look at some of the posts on this site and google women's health physio you should come up with a list of experts in the uk at least. It's also true that each person is different and requires different treatment depending on where the cause may lie. I hope you'll be successful in finding help soon. Try and be active about looking for it - and use the search function on this site to help you!
Hi,I have suffered with this problem for10-12 yrs,I found a wonderful Physiotherapist last year who told me,it the sssort of thing to catch early,so for me she couldn't help much. So I would definitely recommend trying a women's Physiotherapist. There is still hope for you. I sincerely understand the pain your feeling,and the anxiety that goes with it.
Best of luck🍀
Thanks for your kind words. I have been to Manchester hospital pain clinic, I live in derby & Manchester is the only place that treat pundendl pelvic pain .....!! Manchester ,dr winston demello diagnosis of pundendl nerve neuropathy. They want me to have nerve block injections however I understand they only last a few days & can even make the condition worse.......! That would be hell 😫. I need to know if anyone has had these injections & if they have been successful . I would like to talk to somebody who’s had the nerve blocks .?
The injections I had two then dr sent me in for what I call the big guns nerve blocks they do if from the tailbone and I had went on 3 occasions I could of came off that table VERY PAINFUL 😣
I had nerve blocks in London with Dr Baranoski. I did not respond well to these and was left with additional muscle spasm. If I had my time again I would not have them unless you are considering decompression surgery as they are then useful for diagnostic reasons. Sorry to be negative, but I have never heard of anyone who had any meaningful improvement or relief, of course that does not mean they don,t exist.
Regards lucy
Hi Lucy
I thank you for your reply & letting me know of your experience of the nerve block injections. I am already having muscle cramps which are unbearable. I feel so sorry for you that you have had to suffer additional pain . I have been looking online to see if there is alternative way to finding out if the nerve is at fault or trapped. There are places in the uk that do a MRN instead of a MRI . The MRN scanner can see the pundendl nerve if it is compressed or trapped .....! Even these scanners need the referral of a GP who has heard about this type of scan .
WHY are they not offering this scan for all the suffering people out there who deserve the help to find the problem & get it correctly treated to be pain free.........!!
Denise 56 I have got appointment down London to see this Dr Baranowski could you tell if you have got any better at all after seeing him xxx
Hi Denise,
I had no improvement at all seeing Dr B. I had numerous injections just got more spasm. I don,t know if London offer any better options than they did over ten years ago. I got most of my improvement from David Mc coids stretches.
Good luck. Dr B isn,t the warmest person but he is one of the most well known pudendal doctors in the UK.
Regards lucy
Denise56 thank you very much for that is there. No hope at all for this evil pain can’t believe you can be in so much pain 24 7 xxxx
If you asked Dr de Mello would he refer you.If you explained your concerns re injections? I expect under nice guidelines you would be entitled not that that means anything i reality.
Regards lucy
Regards lucy
Hi Denisei have been under de Mello now for 2 years. I’m from Cumbria so travel down to see his physio every 2 weeks. I also have nerve blocks twice a year. They hVe been my saviour. They make my pain bad for about two weeks after but settle down again. I get about three months of much lesser pain. They just tune your pain down, make it a little easier to get on with things. I also have muscle spasms which make things worse so u need to see a pelvic floor therapist to internally work on these. I have been seeing the one at de Melli’s clinic and now am much easier. I also take my medication alongside. I guess I’m one of the fortunate ones with the blocks but you will never know until you try.regardsandra
Hi Denise
I’m suffering the symptoms you say too but desperate to get a diagnosis
really not sure how to go about it . I’m on nerve blockers call pregablin and after about 6 months and working with a Osteopath Who is doing some cranial work with me the pain has lost its intensity I’ve been able to go back to work . It’s dulled the pain I’d say .
Totally understand your distress with the pain bless you it’s relentless. ♥️
I’d love to be tablet and pain free but I’m really not sure if that will happen . If anyone has any good idea about how to get diagnosed please let me know .
Pippa
The pain of a pinched nerve IS excruciating. Can you sit pain free?
Can you lie pain free? What do you think started your pain?
Denise 56 hi no it kills to sit and lay down
Denise56 seems to be bowel and bladder related it’s 24 7 pain that n ever goes away fullness in retum and bladder all time burning like you have boiling hot water pour over yours constant pain that never goes away dr mello in Manchester said it’s pundendl neuropathy Some times it changes to cramping and throbbing
I think the rear branch of your pudendal nerve is being pinched.
You need a CT guided nerve block done with both anaesthetic and 60 mg. steroid directed towards the nerve root in your buttock.
That hurted me so bad went three times & no results 😭😢 they dint help me
I’m sorry. They helped me.
Myself and One of my friends who both completely recovered from PN you can watch her interview here
I've just watched this. It sounds very encouraging, and thank you for posting it. Is the course carried out though skype? I sound ancient, I know, but I wouldn't know how to set that up.
Denise 56 hi I have had it sent to me I won’t no my self how to set up lol
It's not just me then! I don't feel so bad now...ha ha
Denise56 no lolxx
Very interesting, thank you for posting
Denise56 thanks for the great interview on pn ever symptom you had I got spits worth looking in to once again thank you very much xx
Denise56 sorry about my spelling lol in so much. Pain xx
i have it too its horrible . Luckly it changed from suiocidelpain in pain level 7 the last years because of PT opoids and menthal help to carry the burden . There is a site pudendalhope were you can find info. There is no cure but some people are helped by PT , meds nerve blocks or interstim neuromodulation implants
I have suffered with this all my life and then 10 years years ago developed “Complex Regional Pain Syndrome,” which is calculated at 140 times the pain of labor. Injections, physical therapy, opiods, OTC’s, suboxone, morephine, not even methadone helped my pain, although high doses of Gabapentin took the edge off the stabbing searing burning type pain. I was preparing to take my life, a last ditch effort was trying LDN I am not sure you have read about “Low Dose Naltrexone.”(LDN) (3.5 mg) It blocks the sensory nerves at the brain source. I have found it nothing short of a miracle. The pain is still there but how I perceive it makes it bearable. The lowest dose available at the pharmacy is 50 mg. so I have to have it compounded at a sizeable cost. I find it such a miracle that I actually pay for the compounded capsules. Pharmaceutical companies are not interested in it’s manufacture as there is no money in it. I thought I just throw this out there because I made a commitment at the start, when there was no information out there on this subject, that if I ever found anything that helped I would put it out there. I am so sorry for your pain.
This medication blocks opioids so it cannot be used concurrently. In fact, it is what the pharmacy gives to have on hand to reverse a drug overdose. If you think of phantom leg syndrome, where the leg that has been amputated yet still hurts, as if it is still attached, the brain did not receive the information that the leg was severed and is still sending out pain messages via the nerves. So, this medication somehow blocks the pain message from my brain, to my damaged nerves. The pain is still there but I can live now. I was 8 years tipped backwards in a chair, to take pressure off my pelvic nerves, 24/7. I have a bit of life now. The pudundal neuralgia, although called by a different name then, was first documented at age 8, caused by childhood trauma. I have never known a different life on that one, but the CRPS came after surgery where they ripped a fibroid suctioned to the pelvic floor out, calling it fascinating, and thus severing a major nerve bundle, and doing further damage to the pudundal nerve.
That is the story, that is the drug, and that is my experience with it. I am so so so very sorry for the all the suffering for all the women who share this condition, I wish you comfort.
Hello, thank you for sharing your story and experience. I'm glad after all the trauma you found some relief. I heard about LDN and managed to get a prescription and found a compounding chemist who would make it up, but it's so terribly expensive. I opted for a dose I could mix with a measurement of water then divide into 3 doses, which did impact the cost a bit. However, I can't work out how long to try it out for before giving up. Some people mentioned you had to try for a long time, but when it came to buying a second bottle for $100 I was reluctant to throw more money at it, as I'm on disability and it hadn't worked yet. I would like to know how long you would recommend trying it for before giving up. I'm willing to give it another try. I have pudendal neuralgia and other pain issues in other parts of the body, lots related to spine and nerves. Thanks again, Molly
Yes , I have had it for 10 years as well as fibromyalgia, widespread mayo-fascia pain and spondylosis
Trigger point Injections/nerve block 
Pudendal Neuralgia Hell
