Re: I think I might have Pudendal Nerve Entrapment, Can anyone please advise?

[CGRM]

After 32 mths of debilitating pain in lower back/right groin/pubic area I have developed difficulty in emptying my bladder and need to push hard. The orthopaedic consultant has asked for an urgent MRI scan and I have been referred to gynaecology. (Tests have shown my bowel and bladder to be normal). No one has mentioned pudendal nerve entrapment but I am afraid I might have this and I am concerned that I won't get appropriate treatment at this hospital. My GP said "We do not want you to lose control of your bladder and bowel functions".

[PPSN_JudyB Pelvic Pain Support Netwo]

This is an interesting comment because it implies that pain doesn't matter but bowel and bladder function do !

Have you looked at the information on the PPSN website ? which hospital are you at ?

[jacquieb Volunteer]

Hi

You need to see an urologist and gyne and go from there. Do you have an ovarian cysts??? sometimes they can get so large that they cause your symptoms, esp if it is pressing on your bowel. Lots of tests I am afraid. Keep going though, as it sounds very frustrating. As far a p/n is concerned its an area to explore after the above. Just a thought.

[CGRM]

Thank you Judy and Jacqui for your answers. I saw a urologist in August (before I had the problem in emptying my bladder). I had a CT urogram and a flexible cystoscopy and all was normal. I've also had a sigmoidoscopy and barium meal bowel scan and all is healthy. To be fair to my GP she has prescribed different tablets and I am now on pregablin and tramadol/paracetamol and I have at last some pain relief. I attend Blackpool Victoria Hospital. I have looked at so much information, I just wish I had more confidence in the doctors.

Carol

[jacquieb Volunteer]

Hi

It seems thaat you are on the right meds, but the bladder should be functioning properly. The MRI you are having is the next thing, which you said you have already booked to have. If there are any cysts this will show up.

Let us know how you get on.

j

x

[Sheilam]

I do sympathise with you; I have had similar pain - right groin, through crotch etc. sore, throbbing, pressure. Mine is worse after a bowel movement. It was thought to be a pudendal nerve entrapment and I had two guided x-rray, nd then two guided CT nerve blocks, with injections of small amount of steroid and anaesthetic, hopefully into the pudendal nerve, which might stop the brain sending pain impulses to the area for a short period, kThereis what is called a 'pain gate' which can remain 'open' after the cause of the pain has ceased. Thus the brain continues to send 'pain messages'. That's the theory. It didn't work for me, but the longer you have had the pain the less likely it is likely to be of benefit. The message is impressed on the brain. It was done at the National Hospital for Neurology in Queen Square London which is art of UCL Hospital . It's a procedure developed by Dr. Baranovski, aided by Dr. Curran. I don't know if this information helps. i HAVE HAD THIS PAIN FOR MANY YEARS AND AM DESPERATE AT THE MOMENT! All good wishes for health and relief. Sheilam

[CGRM in reply to Sheilam]

Thank you Sheila for your reply. I am sorry you are having pain. I am taking pregablin and tramadol/paracetamol and they have got me up and moving and I feel I have been given part of my life back again. Have you tried different tablets?

Carol

[Ragdolly in reply to Sheilam]

I'm in the same position, Sheilam, I too have had this pain for years. It began as a mildly amusing feeling of being easily sexually aroused, before long I could have orgasms easily although I had been a person who couldn't before, then the arousal gradually became pain, then it spread in a diagonal line up to my right hip, and now I am at the stage where I can not tolerate the sever pain that sitting upright or propped up causes, my belly swells, the pain is excruciating in the back of my vagina, and all investigations are 'normal'. I had a hysterectomy for the pain, a re-sect of my CS scar, and I am on huge doses of slow release morphine 24/7. This is my sixth year of pain. My GP gives me Instillagel, it's a big syringe of anaesthetic gel that I can use internally to deaden the pain a little, it makes the difference between lying awake all night wanting to stab myself in the groin and being able to drift off. I am waiting to see Dr Andrew Baranowski and hope this will mean I can access some help. I feel very desperate, some days I want to cut my own pelvis open to be able to rub the pain away better.

If the nerve blocks didn't help, is there anything else they can do for you?

[Sheilam in reply to Ragdolly]

Dear Ragdolly, (I like your name!) You sound as if you have similar symptoms to me. I wonder how you got on with Dr. Baranovski, and whether he was able t offer you any help - or maybe Dr. Curran. I found them both to be very good in their special capacities with the nerve blocks, but after that there was nothing except the Pain Management course, which meant getting up to London early for ten weeks. I felt I couldn't do it, and am struggling at the moment, feeling that noone understands and my surgery can only tell me how well I am for my age - 81? I don't think they are at all interested or have the least understanding. I think that nerve pain is a huge area where research is needed, but I guess they are up against the last great challenge for researchers - the mind and the nervous systems. I have only only found your reply in March. Sorry about that. I hope you are getting some real relief - if you are, plese let me know! Regards and best wishes, Sheilam

[Sheilam in reply to Ragdolly]

Hello Ragdolly, I'm sorry I haven't replied before;I have only just come across your letter. I hope you have now seen Dr. B. and that he has some answers. I was referred to Dr. Curran at the National Hosp. She is an anaesthetist at UCH I think, and I understand that she has been taught the special nerve block technic by Dr. B. He did my two CT-guided nerve blocks. He was very nice, but I didn't see much of him as I was tucked in the CT doughnut, and didn't have a consultation with him at all. He just did the actual nerve blocks. I had two, but they didn't help. Do let me know how you got on with him. I am sitting here in agony, and know just what you described in you letter - excvept that I don't want to stab myself in the groin, as it feels as if I have just BEEN stabbed in the r. groin - raw, sore pain right through the groin to the vulval area. I do hope that bly now something good has happened for you, hopefully with Dr. Baranovski. Did you have a consultation? I didn't and still think I haven't been diagnosed properly; everyone assumes that I have 'been thoroughly investigated, and I don't think I have. It has been assumed that it's neuralgic pain, and nothing much can be done. Thely didn't suggest anything at the nat. Hosp. only the Pain Management Clinic - which is where you go when nothing else can be done! My best wishes, Sheila

[xcht in reply to Ragdolly]

Have you been diagnosed wi anything specific ???

[Matilda1304 in reply to Ragdolly]

I know it was a long time ago but I have same symptoms and wondering if you ever got a cure? Thanks .

[FKSW]

Hi Carol,

I had pudendal nerve entrapment. I got diagnosed with PNE a year ago. I had surgery for it this summer. I have pain passing urine, and bladder pain, as well as other pain. If you want to ask me any questions, I'd be happy to help if i can.

Best wishes

Fiona

[CGRM in reply to FKSW]

Thank you Fiona for your offer. I do have most of the symptoms of PNE but do not have the 'excrutiating pain' when sitting which seems to be the classic symptom so I am not sure that I do have this but I feel I need to help myself and get as much information because I know that early diagnosis is important. Where did you get your diagnosis and where did you have the operation? Did the surgery help with your problem?

Carol

[amera in reply to FKSW]

Hi fiona

I have just read your comment I have been through the same. .I had a pain block done in Bristol privately. . It was promising now he recommends surgery. . I want to get it done in Bristol but funded by the nhs even better still get it done in France and funded by the nhs. .. Just wanted to hear about your experience your recovery and was it weird being in France and also what the after care like their. .. Can you write to me in [e-mail]. .. please any info will be brilliant

[sparkyrn in reply to FKSW]

Yes Fiona,after 2 years of Dr.s thinking it was my back I had an ileopsoas injection that points to pudendal nerve entrapment. constant pressure left inner buttocks, left perineium, unsolicted clitoral excitation, chronic pain in those areas, numb anterior thigh. what surgeon did you use and how effective was the surgery?

[FKSW]

I was diagnosed in London, by Dr. Baranowski. My GP was unable to get consent from the PCT to refer me on the NHS, because she'd sent me to so many different specialists over that year. So I paid privately to get the diagnosis, the waiting time was a month. Once I had a diagnosis my GP referred me, but the NHS waiting time is 9 months or more. So I paid privately to have nerve blocks in London, and then eventually went to Nantes in France for surgery. The nerve blocks I had in France definitely eased my pain. The surgery I think has helped, im definitely more active. I'm still in pain, but it's early days, because I only had surgery 4 months ago, I think you have to wait at least 6 months to feel any real benefit. I hope this helps, I think there may be pain specialists in Bristol and Manchester area who now diagnose pudendal neuralgia too.

Fiona

[Ragdolly in reply to FKSW]

Fiona, reading this post has been like seeing a flash of light, of hope! We are at the point of wanting to pay privately, did you have Dr Baranowski to do the nerve blocks? And I'd love details of the Nantes clinic and surgery. When you say 'surgery' in France, was it only nerve blocks or something else as well? I'd be so grateful for any information, my life is getting intolerable and I can't sit down except curled up on one side - even that leads to emergency doses of morphine.

Allie

[FKSW in reply to Ragdolly]

Hi Allie,

I'm glad to help. I know how you're feeling!

I had four nerve blocks with Dr. B, all with a little bit of relief but not a lot, as they were nerve blocks at the ischial spine, which is higher up, and my pudendal nerve was trapped both there and at the alcocks canal which is deeper in the pelvis. I went to Nantes last May and had two nerve blocks at the same time, one at higher up and one at the alcocks canal. I had a lot of relief after that and that was a good diagnosis for the doctors in France and I had the nerve decompression surgery in August.

In Nantes the team has a surgeon and a pain specialist, and a specialist urologist. The nerve blocks in Nantes only cost me 200 euros. So it's quite worthwhile making the journey.

Seeing Dr. B was good for a diagnosis, but as far as Im aware he cannot offer more than conservative treatments. Have you had a diagnosis of pudendal neuralgia yet? Any other questions, please ask.

Fiona

[FKSW in reply to FKSW]

Oh, and the clinic in Nantes is the CHU Nantes, Dr. Riant is the pain specialist, the surgeon is Professor Robert and the urologist Dr. Labat. I did not contact them directly, I did it through this organisation, I emailed [e-mail]

[Ragdolly in reply to FKSW]

Fiona, I can't TELL you how helpful and hopeful this is, I am SO grateful to you for replying, and so quickly. Bless your heart. After reading your post this morning, I rang Dr B's private clinic and booked in to see him in June, with a view to having nerve blocks with him if he diagnoses PNE (which I think he will as that is what has been suggested by lots of other consultants and my symptoms are absolutely classic pudendal entrapment) His secretary was so kind and helpful, quite a change from my experience of the NHS. If he gives me a diagnosis, would I then be able to go straight to Nantes for private blocks and maybe decompression? I am so desperate, I don't want to waste any time in going where they can help me. How did they find out it was also trapped in the Alcock's canal? My pain stems from further down and to the right. I wonder what made them try a block in both places - was it more expertise or just the fact that the ones in the ischial spine didn't work on their own?

Can I ask how much the decompression surgery cost? My stepdaughter lives near Nantes so I could easily get there. Do they insist on a diagnoses from the UK or will they see you in the first instance?

Lots of questions, I know. Sorry. I am just clutching at hope, and your story shouts 'HOPE' to me.

Allie

[FKSW in reply to Ragdolly]

Hi Allie,

they only diagnosed that it was trapped in both places during the surgery when they actually saw it, but they had a good idea that it may be as both types of nerve block did have a positive effect. To go to Nantes you don't need to have a diagnosis in the first place, they will do the diagnosis themselves. Dr. B's secretary is very nice. Only problem was that Dr. B may try to dissuade you to go to Nantes, maybe because he does not want to lose patients, but I don't know. He suggested a surgeon in the UK for me, however he was not a specialist in pudendal nerve decompression, so I thought it best to go to Nantes. It may make sense to go straight to Nantes as they do the deeper nerve blocks immediately if they think it necessary, but on the other hand, maybe you would prefer a diagnosis before you go? In Nantes they have the expertise and equipment to do both types of nerve blocks, whereas if you have them done in London, they cost even more than the other nerve blocks already cost.

All in all the appointments, the surgery and hospital stay cost me around 4000 euros.

June seems a long time away. I don't know what the wait is for Nantes, the Pelvic Pain Support Network may be able to give you an idea how long you would have to wait for an initial appointment in France. I am myself off to France tomorrow for a six month follow up after the surgery so I can let you know what kinds of follow up treatment they suggest in France. I am much much better, but having had it for eight years plus, I think I have to give it time to heal, nerves take a long time!

Hope this helps, good luck with organising appointments.

Fiona

[Ragdolly in reply to FKSW]

That is so Fiona, I wish I could hug you, you have brought such a ray of hope into my life today. I would be happy to go to Nantes for the initial appointment and for surgery if that proved wise. I am so grateful to you for this advice. I'd love to hear how you get on in Nantes for your follow up. Let me know? My stepdaughter lives in Jouac which is close enough to Nantes to mean we could combine a visit to her and the treatment - almost like it was meant to be. I have waited years for help and the idea that it may be only months away is such blessed relief, I can't tell you. Love, Allie

[Sheilam in reply to FKSW]

Dear FionaKim, I would be very pleased to know if you have had any real benefit from the surgery you had about a year ago in Nantes. Your letter was dated 30.12.ll I do hope it has helped. Regards, Sheilam

[Jeanmw in reply to FKSW]

Hi Fiona

I think I have nerve entrapment after a total hysterectomy last summer. I am interested in your journey to France, who did you see and did you go privately?

thanks

Jean

[Anna24 in reply to FKSW]

Hi Fiona

I have PN and my pain consultant has agreed I need to see dr Baranowski in London. I see you saw him. Do you recommend him and what did he do? Should I get a neurography scan as well? Also do you know who is best Mr Baranowski or Mr Greenslade in Bristol. I live in Bath so Mr Greenslade is close but I want to see the best man for the job!

Thanks

Anna

[Sheilam]

Dear CGRM, I'm so sorry I haven'at answered your question. I haven't been on the site for a while - don't feel well, computer not always working properly (I'm just lost a letter I had typed to you and was just finishing) I have had loads of differed (all anti-depressant-type drugs, I am sure) over the years and forget their names, part from amitryptilene, to which I was allergic, became jaundiced, and was advised never to take it again. I was interested to read that you are taking tramadol with your pregabalin and that it seems to help. I must mention this to my GP. I haven't lbeen onto this website for a while, as I found it rather depressing to read all the letters from ladies who have been unable to find real help, relief and certainly not a cure. It would be great if the general public knew more about the condition, and would be more supportive. Even my GP doesn't seem to believe in it, and told me recently that I 'looked well, didn't look my age (80), blood tests are O.K., got over breast cancer and a mastectomy' (eight months after my husband died), and gave the impression that he thought I was perfectly well.....if only he knew!!! I am seeing another doctor in the practice tomorrow and will mention tramadol and see if she thinks it worth while giving it a try. I am on the highest dose of pregabalin 300mg twice a day,, and don't think it gives me much relief. Must get off my bottom! I can't sit any longer! My very best wishes. Sheilam.

[PPSN_JudyB Pelvic Pain Support Netwo]

Sheilam,

It just occured to me whether it is possible for you to have your computer on a raised table ? I was bending down to use the computer for years and developed a major sacro-iliac joint problem. Eventually I got a high desk to put the computer on which has helped the back/joint issues.

[FKSW]

I'm so glad it helped. I hope you get an appointment soon. I went yesterday, and the surgeon is happy with my progress. I will go back again in September to monitor my progress and see if I need other treatment, but at the moment I just need to wait and be patient. And it's really good that you have somewhere to stay, will make it all easier. Best of luck! let me know how you get on.xxx

[Ragdolly in reply to FKSW]

Good news that your progress is steady, Fiona. I will definitely stay in touch, and let you know what happens. And again - thank you!!!!! xxx

[JudyRentz]

I can promise you will not get an answer.After almost three years of searching,plus two well known specialist studying me,my husband found my diagnosis online.I had gradually developed the most horrendous pain of my life,often thinking there was nothing to do BUT die! Contact Dr.stanley Antolak. At pnfdn.org. There's hope !Judy Rentz

[Acapa in reply to JudyRentz]

I am at about at this point, curious as to where the pain was and what the pain level was 1-10

[pelvichealthphysio]

Hello,

I've read some of the comments and I'm somehow surprised that pelvic physiotherapy hasn't been mentioned! I know the Dr's mentioned above and they are excellent. However i feel that the one part - and quite possibly- the most important part of the puzzle missing is floor pelvic rehabilitation.

Nerves are surrounded by muscles and the tension in these might be the cause of all the 'neuropathic' type of sensations that you are getting including bladder, bowel and sexual dysfunction.

I work in the NHS and privately in London and I see a lot of patients with the type of symptoms described here - all very characteristic of pelvic pain syndrome.

Feel free to look me up and hopefully I or another specialist pelvic health physiotherapist can help!

Natalia Vásquez

[pizon]

hello and I am sorry to hear of your pain my only advise is to find and see a dr. that specializes in P/N they are few and far between I was misdiagnosed for many months after prolapse repair surgery and found a Dr. Richard Marvel in Annapolis MD that is working with my new uro gyn...good luck to you

[swarke22]

I went to see Mr Christopher Wong in Bristol. Hope that helps.

[Boingi200]

Hi I thought I hade Pudental neuralgia 2.4 years ago had Pudental block x 3

No positive response at all impar block inter muscular impar block

then trigger point

3rd Pudental inside

3 cystospy

3rd said I had int cystitis as blood spots on bladder knew that was wrong as i struggle to empty my bladder use my abdominal muscles but had 6 instllation no improvement

Pain is horrendous sit on ice pack

Take Tapendol and on high dose

Went to South Africa I have auto immune and should have been treated 2 years ago

I wish you luck it is a nightmare

See a excellent rheumatologist starting methotrexate on Friday. I had to wait because I didn’t know after being on steroids much more likely skin cancer and I’ve had it in nose I’ve had that

methotrexate works

I hope your journey is easier than mine

I wish you like