12 years ago my GP appears to have given me a mis-diagnosis of interstitial cystitis when I complained of burning pain that stretched from my anus to the clitorus and then goes deeper if I remain sitting, laying down also give me pain like an unremitting toothache to the right of my vag. I am changing my GP, due to his lethargy and inaction, so hoping to persuade my new GP to refer me, but I'm not sure which consultant? I have an appointment with the NHS pain clinic and due to see the pain consultant. Can anyone who has attended a pain clinic, without a diagnosis, tell me whether the pain clinic consultant was able to confirm the source of the pain?
Which Consultant for a the confirmati... - Pelvic Pain Suppo...
Which Consultant for a the confirmation of Pudendal Neuralgia.
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Hi, ideally you need to be referred to a pain clinic that has a good reputation for pelvic pain. Most pain clinicians aren’t as specifically trained in pelvic nerve pain, which is what you may have. You could ask or go private to see a pelvic floor therapist. Together they will try to see the source of your pain. It’s quite difficult to get to the bottom of this, be your own advocate, I really hope you can get the help you need. I was a hundred times better after finding my nhs consultant. I don’t know where you are in U.K. but if you pm me I will try my best to help as I don’t want to name names on here. Good luck
Sandra
Hello Sandra
I too have dreadful pelvic pain due to taking a medication called Midodrine . I am waiting for an mri as I am sure I have a trapped Pudendal nerve .
My urologist thinks I have IC but I disagree.
I live in Suffolk.but am looking for a good consultant on the NHS as I will ask to be referred to one.
Would you mind telling me the name of the consultant you see? And where is he/she?
Thank you very much .
Sue
Hi , I live in Cumbria, I’m not sure if I’m allowed to mention names on here or not . Do you know how to pm me?
Sandra
The only way to confirm an I.C. diagnosis, your doctor would have to look inside your bladder and verify that you have pinpoint hemmorages in the bladder lining. I know this because I was diagnosed with I.C. 35 years ago and have had numerous surgeries on my bladder because of it.
I am sorry to hear of your diagnosis and experience of IC. However there are significant problems in the diagnosis of IC. In the early phase of IC the bladder doesn't necessarily show Hunner's Ulcers and/or the glomerations, and it is now known that the glomerations can also appear in the bladders of perfectly healthy people with no symptoms of IC and that there are many people who have the symptoms of IC and yet have no evidence of in the bladder. The urologist who told me that I do not have IC said that if I had IC that "I would have lost my bladder by now". This is clearly an inadequate remark, since you and others have not had to resort to this extreme. She also said "Because I get UTI's then I don't have IC". This was also clearly incorrect, since many people with IC also get UTI's. Admittedly she was German so her acquisition of English may not have been perfect, but there is no excuse for her being so dismissive, and perhaps not suggesting an alternative way forward.
Oh wow I did not know that! Thank you for reply. It's been many years since I was diagnosed. I am happy to hear they continue to find more about our IC, that causes SO many of us unbearable pain and frustration. I was diagnosed when I was 17. It started though when I was 14. I will never forget it, instant severe pain that had me curled up on the floor unable to move. The frustration with the disease can be just as bad as the pain itself.
Thank you for your reply . My bladder was a normal healthy one , this was diagnosed after a cystoscopy .
Hi I read your post with interest..... I too had been going backwards and forwards to my GP for some time at which point they thought it might be vulvodynia, so I was referred to a gynaecologist (I did have private medical cover). The GP thought might be nerve pain to started my on Amytriptillyne (which helped in the beginning) but has no effect now! (I have been on it nearly 3 years). After going to see the gynaecologist for a good few consultations she didn't know what else to do so she referred me to a pain management consultant. I looked him up and he did deal with pain management, but also was an anaesthetist..... Needless to say I did not hold out much hope of getting anywhere with him, but told him all my symptoms and he was first one to mention Pudenal Neuropathy or pudenal nerve entrapment. He sent me for an MRI just to check nothing else sinister going on, which there was not. He then advised the only way to check for definite it was pudenal nerve entrapment was to do a pudenal nerve block injection. Meanwhile at this stage of things I had been through every feeling, thinking it was all in my head, how could it be so excrutiatingly painful when I had not done anything (I just have to sit down all day at work) and think this is where it stemmed from! Pain feeling like someone has poured acid on my skin.... or terrible toothache like pain on left side of my vagina (as you describe). Pain goes to a few areas so now thinking it must be pudenal neuropathy. I can't wear any tight jeans or even tight knickers can make it all worse. (I have totally been enjoying during the lockdown living in leggings!). I had read quite a lot of mixed reactions of having a pudenal nerve block i.e. could make things worse, therefore decided not to do this. So have been struggling on with this for like 3 years or more..... I read on this site a lot of people have found help with seeing a Pelvic Health Physio, so I am awaiting an appointment for this, but she cannot see me for 3 weeks. I am now back at work (sitting all day) and by end of the day I just want to scream!! Sorry to go on.... but wanted you to know our symptoms very similar, but I would say definitely attend the pain clinic and hopefully they will give you a diagnosis and suggestions of what might work. It does really help anyway when you know it is not all in your head and someone gives you a diagnosis. Please do let me know how you get on. Good luck x
This response is encouraging because I deafest building up my hopes that the consultant would diagnose only to find the opposite. I am so fed up being observed as though I am neurotic. I take it that you have a specially shaped cushion at you office. Mine does offer me some telief
Yes I have tried various cushions but nothing really helping.... I have had doughnut cushion and the "U" shaped cushion.... Just been back to work last week and this week and it has come back with a vengance as sitting all day, all only on my left side, nothing affected on the other side. Yes like you, you start to begin to think you are neurotic and making it all up..... I have been told to up my amytriptylline tablets but so far no difference.
Hello. Yes it does appear that we both may have PN, and I agree with you that it is so frustrating to think that one is talking to a brick wall or that there is an underlying opinion of neurosis. I have a telephone conversation with my new GP and I am crossing my fingers that he has an open mind. I also bought shaped cushions and one was good to begin with, but as it appeared to reshape itself was less effective. I have now made my own and to avoid sitting on plastic, which sweats, I have stuffed it with feathers. It's a U shaped cushion and I made the cut-out longer and wider to encompass the area from coccyx to the front. I have used for about a week and it is much more comfortable. Moreover, I can give it some good punches when it flattens and also when I feel frustrated 
I was referred to pain clinic for condition management as far as I know they don't diagnose what your condition is. For me I felt that my consultant gave up on me as any further surgery had too high a risk of complications. Pain clinic looked at what treatment/meds I was on and came up with coping strategies to help with my symptoms.
What saved me was my specialist physio who was able to diagnose me better than any consultant!!!!
I have severe pelvic spasms, which is located from rectum to vagina, so bad I cannot sit on my bottom. I have a constant pressure in rectum which feels like I constantly need a poo.
Had lots of tests and blood work and was diagnosed with levator-ani syndrome, Dysfunctional bowel and bladder and colitis.
Physio does Internal/external vaginal trigger point therapy which really helps with intensity of spasms. I have a fantastic female gynaecologist and colorectal consultant who work together with me in managing my symptoms. I receive botox injections into pubirectalis muscles between rectum and vagina which really lessens severity of painful spasms I also get bladder injections which helps with incontinence.
It took nearly five years after severe haemmorage from rectum to get diagnosed and a treatment plan.
I hope you get the help and diagnosis that works for you. We know our bodies when something feels not right. I wish you good health and a positive future.
Thank you for your response to my query. Hearing the experiences thar people are enduring on here truly shocks me. Formerly I had no comprehension of this hidden world of pain. I have different opinions as to whether the pain clinic will diagnose my problem but I’m changing my Gp in readiness to ask how I get a diagnosis. When I was given an IC diagnosis it helped me cope. Falsely now I realise, but being older and wiser I shall want the rational. I do hope things start to improve for you.
I too was misdiagnosed again and again and also told on more then one occasion that I had IC..in total over a 1 and a half year period I saw 25 different dr.'s/specialists I too had the burning or electricity type pain sometime pressure ect..all on the left however mine also come with the sensation of a ball inside my vagina that moves to my anus ... I also had pelvic floor muscle spasms I found the only thing that helps (all nerve type mess. Made it so much worse with the side effects that accompanied each med) is a book titled Reliving pelvic pain but Amy Stiein and a yoga cd by Dustinne Miller titled Pace Yoga for pelvic pain...I also did go to the physics and she was helful and got myself an herbalist...the medical dr.'s have done nothing for me sorry to be so chatty but I do hope this can help I am not cured but am off of the sofa good luck
Hello, Thank you for responding to my text. I hope you don't mind but I was shocked to see how many Dr/Consultants you had seen, and thought that perhaps you were in the USA, where it is so much easier to move between various medics. Sometimes I wish it was easier here to obtain a range of opinions, but would not have the American system, the profit incentive I possibly also very harmful.
I have seen a text that having an operation on your pelvis is the most common event for then developing Pudendal Neuralgia. So much for the Dr's ethic of not injuring their patients! However, I'm not sure how I ended up with PN, possibly one day when I slipped and bounced down the stairs on my butt. It didn't hurt at the time but it's quickly making up for it. I note the book that you have mentioned and I will look it up. I have tried Yoga, but to no avail. However, I hope that I am just about to get an appointment with a Specialist Physio who works inside on pain trigger points to loosen everything up. Apparently it is the most successful intervention one can have for PN.
Like you I have a special cushion, but mine has an opening like a tear drop through the middle and this helps enormously. I also don't eat anything like tomatoes or spices because this causes a flare. (Not sure if my bladder is implicated somehow because I get pain after a pee and it stays for ages) I know PN can do this, but because the cystoscopy showed that my a part of my bladder is raw, then it is bound to react to irritants - I want to know whether it is linked to PN?
The responses that I have had, have made me feel stronger and more confident and ready to go forward with my views. I think I have heard all the excuses in the book for not needing a diagnosis; why they can't do anything, and to stop reading authoritative papers - as though it is the reading of research papers that is making me persist. When all I want to say is "It's pain and it has taken away all that I enjoy in life".
Sorry for the rant.
Dorne
How many times do we read the same script that tells the story of numerous doctor visits and what I call the blank face look, when you know that they do not have a clue and you are about to hear those words again, we do not know about this condition.
It is truly shocking they must see many of us over the period of 12 months and yet they have not thought that maybe they should know a bit more.
I have been suffering with this for 30 years and have had many attempts during this time to find a solution, believe me 30 years ago CPPS was not something that any of them had heard about.
I had managed the condition without treatment for 29 years but unfortunately my symptoms got worse last year so went back to my GP, but it is the same response referred to the hospital, blank face, referred to the pain clinic, blank face, asked for referral to a specialist pain clinic in London, I was optimistic about this one but the only outcome was a referral to a self management programme to manage pain, no actual treatment. I had been self managing pain for 29 years so again another dead end.
Just before the pandemic I visited a PT but have not been able to progress with that due to the restrictions, starting to think that disability is something that I will have to accept, everything about this is so difficult not just the pain but also finding any remote sense that there could be help out there.
Thank you writing to me, I appreciate your being honest with how you feel. How impelling your words are. The pain of so many years has influenced the strength of your experience and disappointment. Like you, the blank faces, were not of discouragement but of ignorance and they don't seem to be able to think of any constructive response.
When I first met a new GP, 8 years ago, I knew there was a high level of medical ignorance about IC, I actually left her with a book on the topic of Interstitial cystitis, (not knowing I had the wrong diagnosis). Bless her, she read it, and was one of the most co-operative and empathetic GP's in my search for treatment. However she recently retired and I found that I could no longer take Amytriptyline but found myself up against the blank faces. However, a Gynaecologist I met also knew nothing about the symptoms of the pudendal nerve. A urologist once told me, that they feel desperate when faced with an IC patient because there is nothing they can do, and anyway "It doesn't kill you". I quickly responded, saying, "But the suicide rate is significantly higher is this group than any other patient group". In retrospect, I felt his honest reason was more one of self-interest because chronic pelvic pain is one health problem that can easily be pushed under the carpet, while they do more 'respected' surgery, like removing pelvic organs.
There is treatment available but how does one recapture the confidence in medics? My daughter who works in Devon is an Acupuncturist, and she performs Myofacial release, which is similar to the Physio pelvic relief treatment. I think some Osteopaths also offer similar therapy, and there appears to be some complimentary opinions about Osteopath treatment. I would go to my daughter but I am not sure this is the true meaning of mother/daughter relationship. I am currently waiting to hear from a physio based reasonably near to me. Do go back to see the physio, or alternatively a qualified alternative. The NHS pain clinics also offer manual therapy and this appears to be the most successful treatment for PN/PE. Don't leave your seat in from of the GP until you have the referral you need and that the Medic has a good reputation. So lovely to hear from you.
Dorne
Hi,
I can attest to the wonders no of myofascial release.
I have a pelvic OT (Similar to PT) who started doing this for me before the pandemic locked things down.
I received great relief from this.
I had lost full range of motion in one of my hips, and it also fixed that problem.
Since I'm not able to meet with the OT right now, she sent me some information about how to do this myself.
I'm not sure I can attach a pdf, but if someone knows how to do this, I can share the links she gave me.
LB
You may be able to copy and paste the pdf into the ‘reply’ box. No harm in trying ...
try these links:
dochub.com/019db247d4ccfdc8...
dochub.com/019db247d4ccfdc8...
What is the foam roller supposed to help with?
So, she told me that it's to replace the myofascial stuff she does with me. Because I can't go in to see her, this was another option for me to do at home. Actually, my husband helps me with this because i can't do my tailbone effectively without help.
I also do the cupping (don't leave the cups in one place, but suction and then pull across skin)
Both of these have kept me feeling halfway decent since March (last time I saw my PT)
You need to see a urologist and a neurologist.
I saw two urologists last year and both were useless and clearly pissed off with jobs and who had no interest in seeking out the source of my problems on the grounds that they can’t treat it anyway. How more discouraging can a urologist be! Eventually, the second urologist referred me to the pain clinic - hence my query ‘will the pain consultant diagnose me or just issue pain killer?
PM&R can diagnose pudendal neuralgia if that is indeed what it is.
Hello, thank you for writing. I read your email with great interest. The USA is like the U.K. in that our GPs are also useless. I have found a physical therapist who comes highly recommended. I have spoken to her and have my first zoom interview on the 11 th Aug. I also have my urine sample results back from Microgen DX which is based in the USA. They test for bacteria but tracing the DNA in the sample - the bugs DNA not mine !! My strip tests have always Shown E Coli, but the DNA test shows 95% of volume was Klebsiella pneumonia, 3% Enterococcos faecali, and only 2% E. coli. I was right the Fosfomycin has effectively killed off the E. coli, but the Klebesiella will not be so easy. I am resistant to penicillin (which is strange because my penicillin intake has been low) so this knocks out all the antibiotics ending in ‘Illin’ I may have caught the Klebsiellia at the hospital where , for 16 weeks, I was given bladder instillations. That was a waste of time! Anyway, I need to contact my new GP to get a prescription, and to make an appointment to persuade him to refer me to neurologist.
So I can sit down I have made myself a feather cushion. It’s rectangular with a long wide opening to keep the sitting pressure off my painful bits. I took time to get the dimensions correct for me and have been using it now for a couple of days. It works optimally when I turn the long opening towards the coccyx. I feel I’m making progress I only hope that my first meeting with the new GP is equally encouraging.
Have you tried Erythromycin? That’s what killed my Klebsiella pneumonia which had caused me to have a severe kidney infection.
Microgen sent a list of antibiotic that are ok to use, but I need to check because the list contains several that would be no good for me. I want to be able to discuss with the Gp how best to clear it completely because it has the potential to infect other organs as well as other people. Did the dr tell you that you must wash hands frequently to prevent the infection of , say, a member of your family. Thank you replying I have made a note of your recommendation
I was pregnant when this happened. They thought I’d lose my baby.
A smart nurse did a urinalysis on me and realized I had the issue. I’d been swimming in a lake that likely had germs in it but the city kept it open.
Perhaps stool got into my urethra? I’ll never know.
Make sure you see a neurosurgeon or neurologist. You need to have pudendal neuralgia ruled out as a diagnosis.
Thank you just what I need in terms of advice. I will ask go to refer
If they decide to do nerve blocks, make sure they use imaging and both anaesthetic and at least 30mg steroid.
Where they inject is important as well. If your rectum and perineum are the most painful, the shot should be done between the sacrotuberous and sacrosphinous ligaments where most entrapments are.
I hope you’re treated with compassion and quality care. Keep in touch. I can recommend European doctors if you’re dismissed by the NHS doctors.
Thank you. I am determined that I shall not be treated so flippantly again, and that I get a diagnosis and referred to a good hospital for treatment ...
I had a private consultation with Dr Krishna Pain Specialist and he made a diagnosis. Similarly, I'm now with a pain consultant under NHS and he would make diagnosis and try treatment such as injections even as a diagnostic tool. In short, I think the answer is yes.
Add-on• in reply to
Thank you for your reply. Some weeks ago I contacted Dr Krishna, whose clinic is within a do-able travelling distance for me. I wanted to know if my symptoms fitted either Pudendal Neuralgia or Pudendal entrapment. The NHS have been dreadful in trying to get to the source of the pain, so I have been searching possible causes. When I read the symptom description of Pudendal entrapment it said no pain on laying down, and I get pain laying down, sitting down and after a pee for hours, and then it is like a continuing tooth ache with burning. He came back to me online and said that I fitted Pudendal Neuralgia criteria. I am so grateful to him, but I am trying to see a neurologist in order to get a diagnosis. I have an appointment with the NHS Pain consultant in 10 months but lack a diagnosis and I am dreading getting to the appointment and then being told that they can't give me pain relief without a diagnosis. I am trying to get an appointment with a Specialist physio meanwhile. Did it take Dr Krishna several appointments to arrive at your diagnosis? His appointments are quite expensive and having the wrong diagnosis given to me 12 years ago, I have already spent a small quite a substantial amount of money on constellations and medications - all to no avail? Would really appreciate your reply.
• in reply toAdd-on
Just had one what's app consultation with Dr Krishna. He was tons better than Greenslade.
It is definitely better to go and see him though. In my case, it's actually my coccyx that appears to be the problem. My problems mainly at the rear.
I would trust Dr Krishna with diagnosis face to face. He wrote to my GP with his diagnosis and recommendations. He is very caring and experienced.
Please keep in touch and let me know how it goes.
Love Korin
I have many of the problems described above pain on peeing etc. I have tried AZO with much success as a urinary pain relief (not a cure) which works very quickly although it turn your pee a red/orange colour but glad I found it.
Thank you for responding. I do have AZO, but don't think the it is the answer. Unlike a UTI, I am not sore when passing , but sore for hours afterwards and when I sit down and lay down. I may try Bicarbonate of Soda, but it tastes dreadful.
If you are desperate and your doctor is open to other opinions, look up Dr. Jacques Beco in Belgium or Dr. Bruno Roche in Geneva Switzerland. These are the Europe pudendal nerve experts my surgeon recommends.
Good luck. I know how hard it is to be left in so much pain from neuralgia and having to advocate for yourself when you’re exhausted, stressed, not sleeping and living in a survival mode.
Thank you very much I will find out the details for both of them. This corona Virus is holding everything up. Our local physio service has stated no services because they are all working on the wards so I’m going private at £99 a session! She comes highly recommended, so I’m hoping she is thorough. Patients like us will be way down the NHS
list ... anyway, thank you so much for your advice and kindness. Hope the sun comes up for you soon.
Good luck. I pray you get expert care.
Just thought about your sores. It is an old fashioned remedy but I find it works because I used regularly to swim in sea. Use some cold boiled water and make it salty, splash yourself with this, and twice a day for 30 mins expose to air. I looked after a little boy at one time and he came to me with severe nappy rash. I Removed his nappy and washed him With soap and then with salty water, gently dabbed him dry and in three days he had healed.
My sores and wounds are internal.
Ouch ! Good luck with the next phase of treatment.
I live in the United States, in the state of Michigan. I was diagnosed 5 years ago with pudendal neuralgia. I was diagnosed in part do to my sister typing my symptoms into Google, which led her to an internet website. After seeing my general practitioner who was no help at all, at my insistence she referred me to a gynecologist who expressed a lot of concern. I ended up seeing a urologist because they thought it was my bladder, before seeing the Dr. who finally confirmed my diagnosis. They referred me to a PM&R specialist.
This stands for physical medicine and rehabilitation. They specialize in musculoskeletal disorders that involve muscles,bones,tendons, blood vessels and nerves and soft tissue. I was sent for a number of tests. An EMG confirmed it. It seems like it took a long time because when you're suffering it seems like forever until you're diagnosed. I had my first symptoms in September of 2015 I was diagnosed in December of that year.
The best thing I ever did what's go to pelvic floor physical therapy after my diagnosis. I am not back to normal and don't know if I ever will be but I'm not living with pain and numbness and prickly nerve pain anymore. I'm still unable to feel certain things and while that saddens me I still have hope that that may return.
And I agree with other people here that you have to stand up for yourself and advocate for yourself or nothing will get done. Hence the reason why I switched General Practitioners 5 years ago.
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