I could do with some advice, especially from anyone who has PN. I've had this nearly 7 years now, after a clumsy surgeon operating on me for a prolapse but he wouldn't believe me when I said I was in agony after, so because of his refusal it took years to find out what was wrong. I've had nerve blocks and take 150 mgs of pregabalin and 10mg of amitriptyline. I take as low a dose as I can, as even this amount leaves me a bit spaced out. I've been on pain management courses but that hasn't helped. I've had nerve blocks, acupuncture and recently physio but it wasn't hands on. The physio exercises have helped a bit but they say they should be started as soon as possible after injury, so as I only started them a few months back, it was a long time after the injury. For the last month I've been having a really bad flare up. I haven't been examined for years, but last March I was offered an examination under a general anaesthetic and the appointment has just arrived, to have this examination done in The New Year at a London hospital. Would I be mad not to go for it? I'm nervous as there was another dr in the room when this was offered and I said I'd like to go for it, as I couldn't feel any worse. The other dr said oh but you could. She then realised how insulting this was to the other dr and said oh I'm not talking about your surgery. This is playing on my mind and I can't stop thinking about this comment and desperately need some advice please.
Thank you
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paulyne
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I had an examination under anaesthetic last year at my local hospital with a gynaecologist and a colorectal surgeon. They couldn't identify anything wrong that could be fixed surgically and concluded it must be pudendal neuralgia. My pain levels were the same before and after. I think that all my muscles must have been relaxed under the anaesthetic so it didn't cause a flare. They did this because normal examinations are painful. Also I suppose they didn't 'do' anything to me. I just felt tired etc after the anaesthetic. If your doctors specialise in PN I wouldn't think they would cause you more pain. Can you email/call or see them again before the op to ask the question as to why they said it? Is it just to rule out anything else? Good luck and take care. Xx
Paulyne, I have PN. Have had it for 5 years. I haven't ever heard of an examination where they put you under general anesthesia. Are you talking about just a regular examination without them cutting you open? If that is the case, then there isn't any way you would feel worse from it.
Have you been told by anyone what the cause of the pudendal nerve pain might be? Like is it nerve damage from the nerve accidentally being hit during prolapse surgery? Or is it tight muscles that are squeezing the nerve? Or you've never been told?
My PN pain is due to all of the muscles in my pelvic floor area being very tight/spasmed. The treatment for that cause is internal physical therapy, in which the therapist puts a finger in either your rectum or vagina and searches for tight areas of muscle and then presses/breaks up the tight area until she feels the muscle release its tension. Since all of my muscles were severely spasmed up (there were even bands of knots), it took many, many sessions before I got all of the muscle tension out. Like I was going twice per week for almost 2 years. It really should have taken about 4 to 6 months, but we had some faulty communication. And I still have to go twice per month because the muscles gradually tighten back up.
Make sure your physiotherapist is a pelvic floor therapist who has experience with PN. Also, I hate to say it but there are a lot of misguided/ill-informed therapists out there (it took my 6th PT before I found a good one). I get the feeling she is having you do strengthening exercises for your pelvic floor instead of her releasing the muscles. It's important to know what particularly the problem is before getting treatment because if you have spasmed pelvic floor muscles and she is having you do kegels or other pelvic muscle strengthening, it could make it worse. I hope she at least did a pelvic exam, even through the rectum if you couldn't tolerate a vaginal exam.
Thank you for your informative reply, it's much appreciated. I was told by a gynaecologist at my local hospital in Bromley about 4 years ago that in her opinion it was PN and the damage was caused during surgery. She didn't offer any other help, that was it. I had written a letter of complaint to Benenden hospital immediately after the operation 7 years ago and where the damage was caused but they wouldn't admit they'd caused a problem, so when I found this out I wrote again but they still didn't offer any help. Benenden is a small private hospital, a bit like a poor mans bupa.
I went to see a gp at my local and huge practice. It's difficult to get an appointment with a dr, let alone see the same one twice. I asked about physio but he said it wasn't available. He did however write to a London hospital, (this took another 2 years)they gave me nerve blocks and arranged for me to attend a pain management course. It's through them that one of their gynaecologists is offering an examination under a general. While waiting for this, I noticed a blog on Twitter about 8 months ago, that Benenden were holding a charity fun run. I said, thanks to Benenden I have trouble walking far, let alone run. Funny how as soon as social media are involved, benenden wanted to help me! They offered physio but it wasn't the type of physio you're recommending, so it didn't help.
Sorry for long reply but I wanted you to see the full picture. I think I will let this gynaecologist examine me, she's a London gynaecologist that also has a big private practice, so really, I am lucky she's offered this. At least then I'll know for sure if she thinks it really is pn.
Whereabouts are you please, I'm hoping it's near London, as I'd love to know the name of the physio you see, as it would be wonderful if I could arrange to see them?
Ugh - I hate when a doctor refuses to admit he did something wrong. I had that happen to me once when he screwed up a basic coccyx injection and had me in bad pain for weeks until another physician reversed the damage he did - so beyond frustrating.
Yes, it does sound like the surgeon must have done something during the prolapse surgery that caused the pain to the nerve. I wonder if he accidentally nicked the nerve or if the nerve is entrapped between a couple of structures. Sometimes a special sort of MRN or MRI can show if there's an entrapments somewhere - I know who the right people are in the states, but not UK. If it's nerve damage or entrapment, then I'm not sure the physiotherapy would help, rather surgery for an entrapment or pain management for damage would probably be more helpful. I would still certainly recommend the examination by the gynecologist, since it doesn't sound like they will be doing anything risky/invasive, and they might be able to give you some information as to if you also have spasmed muscles or if they notice anything else that might be contributing to the pain. If nothing much comes of the examination, I think the next step would be to get imaging done. Actually, there is a great website for PN/PNE sufferers that has a great step-by-step for diagnosis, a list of treatments, a list of PN/PNE doctors and physical therapists around the world, and a forum. It is:
pudendalhope.info
They have listed a pelvic pain physiotherapy clinic in London, too, in case you find out you do also have a lot of muscle spasms or otherwise need physiotherapy. No idea how good they are, as I haven't been there.
The gynaecologist who did my prolapse repair and caused my PN refuses to accept any responsibility for it either. He has not done anything to help me either. It's criminal what these surgeons get away with! Our lives will never be the same again. Anyway, rant over!! Take care and keep in touch. Xx
I'll let you know u know how it goes. Thank you, it's so nice to feel the support on here. I can't remember what it was like to be pain free but I know all of us on here are sadly in the same boat xx
At last, last year I was referred to a specialist physiotherapist ( like you said I needed)who said physio should be started as soon as possible after an injury. If only I’d been referred to her earlier.
If unsure always try for a second opinion. I never felt a need for this. Surgery always ought be a final option. I recently had an operation on a trapped left pudendal nerve.
It has been putting me through a grinder for years and it took years to get a diagnosis. The cause of the problem may have been trauma from an assault or just one of those things. I chose to focus on the treatment and set aside causation until the problem is dealt with. I had a lot of negativity about what I had been through but found looking to the future with hope more beneficial for the here and now. It will be many months before I will know how effective the operation has been but as I say I can only hope. Stay focused and stay strong,
I think there will be a possibility that the PN will be very irritated after an examination. However, you want answers so I would go for it. As your nerve was possibly damaged during surgery, perhaps they can check other structures as well with an examination under anaesthetic. All the best.
Thank you, I feel more confident reading these lovely replies to my blog and I'm more hopeful about getting a proper diagnosis through this operation. I think seeing a proper physio after will be the way forward for me.
Hi Pauline, I think I may have spoken to you in the past. Your post reflects the exact same problem I have. Ever since I had a rectal prolapse repair back in 2012 along side a bladder prolapse and a tot put in place, despite returning back to see the surgeon twice with agonising pain but refused to accept this was from the surgery he did. Ive been through every test possible like yourself to get answers to why this continues. ive had nerve blocks etc etc but continue to suffer with this terrible pain and pressure I get in my rectum. I could almost copy and paste your post as my story is exactly the same. Taking 300mg pregabalin twice a day and 70mg amitriptyline which seems to help and with it brings a quality of life. I've said all along that the surgeon caused all this just like you. Most of my procedure's to find the cause of my pain in the bum excuse the pun were in London and after all these different tests I was offered pain management but refused as It meant travelling to London once a week for 6weeks . Nothing more could be done so I live with this day in day out and sometimes the pain gets so bad like yours I just have to bear it till it dies down despite taking the meds. So its for life for me, Wonder what the hell he did to cause such pain for life. You almost feel like you are banging your head against a brick wall ,even pin pointing where the exact pain is this never shows up on any scans. So I can fully understand your situation. I've given up on any treatment or other meds as I don't see any more help out there for us.
Hi, yes we've spoken before, thanks for responding to this blog. I just wrote you a long reply and lost it, most frustrating! I'll try again.
It was just to say I found out today it's a laparotomy I'm having in January, so nothing evasive. Apparently they're checking out my bowel pain and problem, I suppose they'll just talk to me about the findings after.
Good job you didn't bother with the pain management course. It was a total waste of time. About 60 women all with various pelvic problems met up and we were told we would be in groups of about a dozen. The course would be every week for 12 weeks, a follow up after 3 months, then a follow up after 6 months and the last on, one year later. The course would be run by a physio, a psychologist and a nurse every week. A dr would come a few times too to discuss things. I was so full,of hope but so disappointed. There were 12 on the course but it was ridiculous that some had endometriosis, others had vulvodynia, only one other had PN. We all suffered but with different things, so I couldn't do the exercises. It was a 'one size fits all approach'. A total waste of time, so you didn't miss anything. I was hoping to have been able to meet women in the same position to talk through things they found helped them. We're better off on this group.
I'm sorry you're no better though.
I'll let you know what they say in January.
Hope you have a lovely Christmas and hope your pain will be kind to you X
I understand the gabapentin is awful, I hate the drugs and do all I can not too take them. But it might help in the next year to give yourself some help while getting on the right treatment path for you. I suggest, especially while going up and or down on gabapentin or pregabelin, Maybe consider raising it little bits at a time. I had to have the doctors prescribe in 100mg pills, then to increase, I would open a pill and release all but a quarter. Stayed in that dose for a month then raised it to dusting out a half and so on. This really helped to increase the does without getting slammed with the side effects.
I believe the doctors are there for imaging mostly. I have not had the anesthetic exam so I would speak to someone who has. f you don't find anything post imaging and exams, the Pelvic Floor physiotherapy releases whatever is pressing on the nerves. It can truly help nerve damage!!!! I would seek those with advanced certifications in myofascial release. I'm in the us so I don't know the training institutions for advanced myofascial release or visceral therapy but I would call everyone on the local lists and ask for referrals for pelvic physical therapists who specialize in PN. There have got to be sites in London with professional associations that have them listed. Not all pelvic floor therapists know how to release tight bands and deep trigger points. Ask if they specialize in pelvic myofascial release. Ask if the know anyone who does. Make an appointment with several. Once you find someone you like, 2x a week for 2 hrs each however the costs could be well worth while.
Have you had an MRN? Nerve conduction study tests done? Ultrasound for hernias? If you have any peripheral nerve irritation they won't see it during an exam. I'm unclear why they want to examine you when you're under? What is their goal?
I also have suffered pn for seven tears following treatment from a gynaecologist. Whilst he did admit to getting it wrong, I never got anywhere when I tried to take legal action, so I know like so many of us the anger and and anguish you have been through.
Personally I would be very wary about an exam under anaesethic. I have found any sort of inter fence ranks up my pain. Also you will not get a pn diagnosis, it will just rule out other things which I think an MRI I would do. Just my opinion.
I have had many many treatments over the years most have not helped a couple have given me a small amount of improvement.
This year I did see David McCoid for six months. David was a fellow sufferer who had had three failed surgeries.
David teaches restorative therapy and whilst I did,nt make the vast improvement that he did I definitely did improve and continue to strech daily. David does do distance sessions so you don,t have to travel if you are a long way away. I just happened to live locally.
Thank you, I've heard of David. I just wish I'd known about physio when this first happened. I found out today, it's a laparoscopy that I'm having done, so nothing invasive, as that was what I was a bit concerned about. I have had an mri, this must be costing a fortune, all because of a careless surgeon. I have a bowel prolapse I think now, (again) so that's what they're looking at apparently. Presumably they'll discuss the findings with me after. I hate taking meds but I can't bear the discomfort at best and pain other days, which sadly we all know about.
Hi there , so sorry you are in pain. I too suffer with pne and have had my days of struggle. I however am slowly getting better because of my pt and Amy steins book Heal Pelvic Pain. This has helped me immensely as my pelvic floor is out of whack on the left side. I'm hoping it could help you also so I am trying to share it with others. I would also join the face book group pudendal neuralgia hope. It is a closed group but great resources to share
Kskuce88 thank you for your reply. I bought the Amy Stein, Heal Pelvic Pain book book a few months back and it's really good and I do belong to pudendal neuralgia group too. I need to get to doing the exercises again but I've had a difficult time recently but I'll definitely start them again after reading how they are helping you.
Have a happy Christmas and hope 2016 will be a good year for you X
Look into having a Platelet Rich Plasma injection (cutting edge). They use your own blood and separate out the plasma, which after it is injected into the injured area, causes your own stem cells to stimulate the tissues to heal! This doc is an expert in the Washington area. jasonattaman.com/pudendal-n... There are others in other parts of the country.
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