PN has stolen my life

Back at beginning of March it started as an itch in the rectum by the end of March I was unable to sit . The itch turned into twisting and throbbing , then my bottom muscles went into spasm and not forgetting the shooting pain ! I've been X rayed had MRI 's , seen a number of orthopaedic consultants thank god for medical insurance . They found nothing . So I started looking into my symptoms and found this monster called Pudendal neuralgia !

Before all this started I was a fit vibrant mother , I worked in district nursing which i feel I may lose . I loved my garden i even miss housework . I feel very isolated and lonely . Enough of that!

I've been to see consultant in London , had another MRI going for follow up next Tuesday for results and discuss nerve blocks . Has anyone had success with nerve blocks?

I've also been seeing pelvic physio in London for the last couple of months which I've seen small improvements .

I'm on medication 150mg Pregab and Naproxen which takes the edge of it , also been taking magnesium .

I struggle everyday with burning pain , yes forgot to say that's my pain now burning in the rectum , groin , bottom cheeks , down my legs and my feet hurt , so going for a walk which I do daily to get out can be a chore.

I have to say finding this site has helped a lot over the past months , especially the bad days .

40 Replies

  • Hi.......I started my PN journey in February but looking back the signs where there after a simple removal of polyps in my uterus and that's when my urethra started to burn. My mother also has PN.......I have Dr Baronowski in London and I was seeing Maria Elliot. My mother had a nerve block five weeks ago at NHNN which has gone horribly wrong her bladder stopped emptying and has had to have a supapubic catheter fitted........I have not had a nerve block I turned it down, as I decided that it was only temporary if it worked and the risk of things going wrong for me out weighed the pluses, I have two other friends who have had the nerve block and are also worse off. I am 75% better than I was and I am starting to have almost pain free days, I decided to stop everything, I work for myself so I can pace, I walk a lot I did have burning in vagina, rectum, perinium, pain down my left leg, shooting pains in vagina and PGAD which I still have but that has also reduced. Is your bladder fine? As it is looking like my main problem has been a UTI that has gone out of control which aggravated all the nerves, sent pelvic floor into spasm and a vicious circle started. I am now under a Professor in London as I have an infection of the bladder wall.

    PN is a nasty beast that is hard to tame, but for me I have found less is more, as the more interventions my mother has had the worse she has got. I am on 20mg of amitriptyline, lifts my mood so that is good, as I am perimeno I also use local oestrogen which is helping, I also use something called Balance activ menopause from boots a pessary and that has helped the burning more than anything else.

    I did physio for a while but I felt it started to cause flare ups so I stopped, and for me that has been the right decision. The sports physio did help me the most as quite often the leg pain is your piriformis, from the tightening of everything, I also did twenty weeks of accunpucture that definately relaxed me, when I first got it I was like a headless chicken trying to find the cure ummmm, but I have come along way, I breathe differently into my stomach so to help relax the pelvic floor and I let my tummy now flop instead of holding it in. The problem with this condition it plays with your mind as much as the pain with your body, they then keep saying its depression depression, and I said yes so would you be if your fanny was on fire 24/7.

    Regards the bladder even if a sample comes back clear with NHS normal testing, if it's a bladder wall infection it will come back clear. All the best.x

  • I have written before about my PN. I am still suffering. I had three nerve blocks about two years ago that did not work. I am now seeing a neurologist at pain management. H tried me on neurotrytilyn, and I do not do well on those type of meds. I had to stop after a week. He said second option is a different kind of nerve block that I had before. It takes two hours under general A. He says he goes thru the vaginal, pelvic and rectal nerves under cat scan for precision to attack right nerves. I have entrapped nerve in rectal-anal area and a spinal cord injury. I cannot sit or lay or walk without agony. Don't know if anyone else experiences feeling a huge rock like feeling all the time in rectum?? Feels like my insides are going to fall out---but rectal-colon says nothing is there. It drives me insane. I have constant burning, throbbing pain in rectal-anal area all the time. I have been to many doctors and many drugs. I have problems with drugs! I read above where people were worse after nerve blocks---am now leary! I could not take anything worse then I have. Yet I cannot live like this. I have neurogenic bladder and bowel. I am now home bound from all of this. I know all about the Pudental site and forum.

    If I don't get some help I don't think I want to live any longer like this!

    Does anyone know about this kind of nerve block???? Appreciate any input!

    Thanks & sending hugs!!!!


  • Hi Trishj46 I do know what it feels like to have consent feeling of a rock in the rectum , I have found physio has helped especially the breathing technique she has showed me I now have days where I don't experience this if only the burning would stop . Reading your post I do feel for you and hope you find an answer about the nerve block best wishes to you x

  • Hi so sorry to read your post as I have been there myself. You should seek help for your depression as this is a phase you go through before you accept and adjust. Everyone is different so you must follow your own course. My PN started like yours inside my rectum and I had a botox injection under general anaesthetic into the area of muscle spasm in the wall of the rectum. It helped a lot with feeling and pain. However it did not cure my PN.

    Good luck, Marion

  • I had 3 rounds of the CT guided nerve blocks. Only the first round hit their marks and the send two missed. There was no damage from them, just not much relief. But it was well worth the trial. My big concern was the time IN the CT itself with all the radiation. But no damage, and no worsening of the PN. So I wouldn't be afraid of having them done. I am in the USA and though there's an MD very near me who does the release, we are too poor to afford his fee. My husband and I have been in separate beds for two+ years now. We have absolutely no hope of ever having enough money to even attempt pelvic PT, which no insurance covers in the US. At $150US per 30 min session, we will never have the money for that either. I am sometimes so depressed by my total loss of sexuality that I have let myself go physically (haven't gained weight, but went back to wearing glasses, letting my gray hair grow in, never getting it styled, no makeup) because I keep asking myself, "Why look feminine when you can't BE feminine," you know? The pain is so bad that I am squirming in bed, screaming, and hold a pillow in front of my mouth so my husband won't hear me cry out in pain. I can't think of anything worse that can happen to a couple. We are in our 50s, our kids are grown, and now much for those "golden years" fantasies. Life happens, and I think we have to go on somehow. But I don't know how we can go on. You are not alone in this. Almost always PN happens as a result of medical carelessness. It has a fancy name: iotragenic illness. Next time you see a doctor, toss those words at them and they'll snap to attention, they are usually followed by the word lawsuit! But alas, even if WE know who did this to us, it's a way different thing to prove it in court...

    Don't give up, it CAN get better. I use Valium vaginally. It helps when I must go by car, and I have my husband drive, with me laying sideways in the back on 4 inches of memory foam.....

    You have to try what's available to you. If we had gone straight to Dr. Dellon here when it first hit me, I'd be okay now. But we hesitated, then we got a new President, and now we're poor like everyone here is now and Dr. Dellon might as well cost 10 million, he's so out of our financial reach....

  • I have posted last week! I am in USA and right now I am in pure agony!!

    There is nothing I have not done, and I understand what your saying!

    I had three 15min nerve blocks without success. I told all of you I am afraid of the nerve blocks my neurologist is talking about! I never heard of being under for two hours! I have been in agony for days, weeks, months, years! In bed this past week with my ice. All they give me is tramadol. I don't tolerate meds! I have to get off here as I cannot sit. Please God I beg for some relief!! Have spinal cord injury on top of all this! Can't stand it any longer! Wish I had the courage to give in.

    My feet also are under siege, cannot walk at times with that pain.

    The spinal implant is only for incontinence, not really pn pain!

    Take care all of you!!!!!


  • Trish, if you have problems with drugs...well, honestly, it sounds like ME! One thing I would really recommend is doing 23andme salive genetic testing done. It's only $99US and they check your Cytochrome 450 gene which is responsible for the makeup of liver enzymes you have to metabolize drugs. I found out that 3/4s of my meds were as useless as sugar pills to me!! And EVERY narcotic but hydromorphone (aka Delaudid) was useless!! 23andme dot org isn't allowed to interpret your results, but it is dirt cheap to run your raw genetic data thru 3rd party programs which DO generate reports. Then, you will be able to understand WHY the drugs have been unacceptable to you. It's likely you don't metabolize them in the "usual" haha, way. There are several ways you can look more closely at the med problem. And a word of advice (yes more) about pain medication- some doctors don't like that a person even knows what CYP450 IS, because most of them DON'T Know!!! They mostly think you want to fine-tune your "high." But the reverse is true. When you make it to your best med solution, there ain't a high in a mountain of it. Only the drugs you DON'T METABOLIZE make you HIGH. It's because they hang around in you, sluggishly making their way through your liver, making you woozy or euphoric, well, that's what makes people into addicts. I'm not saying I'm NOT attached for the ongoing future to my drug, but at least I'm not psychologically stuck with it, and yes there is a difference. I'm just saying, don't dismiss medication for good. Think about the genetic testing. Pain docs love that they have an irrefutable source of hard fact about your body's reactions to medication. It is kind of pointless to say you can say no to ALL meds forever--in old age you're gonna be dosed with God knows what, without your input. Have it in your records NOW, and in 30 years you'll be safer.... It changed "Saliva" to "salive" above.. Sorry. The 23andme is a spit test, super easy, all managed online, no prescription! No I don't work for them, it just has helped me to see my medical care in an "Offensive" way, rather than just a Reactive way. It was a game changer. If it seems unlikely to you hear this: it revealed that Statins had made me a pain-riddled diabetic. Went off statins, pain and Diabetes went away too. Doctors scoffed, but that was a mere 3 years ago, and now it is commonly accepted FACT that it happens. Ten years of hell and kidney damage too! I'd still be on statins today had I not taken that chance on genetic testing. My family attacked me, I lost doctors.. But family came around, they all did 23andme as well, and I got BETTER doctors!

  • Plus Trish, is there any chance you'd tell who your neurologist is, or at least which institution he's at? I'd be there in a New York minute for those nerve blocks, really I would if my body could survive the trip. Is it in Detroit?

  • Pauline---the name of Doctor is Joseph Richards in Bryn Mawr--I live in Delaware County----suburb of Phila. PA ------It is difficult for me to make the trip too and I am only going 45min. He is at Bryn Mawr Hospital.

    Hope this helps. But I still feel afraid to get it done. I will see him Dec.4th.



  • Thank you for this information Pauline! What do you mean by a 3rd party to get results???? I am very interested in doing a follow-up on this! Thanks again!



  • I totally sympathise. Am lying in bed having had the night from hell. A year ago I was travelling, the kids having left home had a part time job went to the gym etc. Now I have this constant throbbing burning pain. I saw Dr Demello six weeks ago and the physical examination has flared the condition beyond belief. Two weeks ago I was suicidal. My Gp had switched my medication. I am building towards 300mg of pregabalin a day with oromorph for emergency use. This all started years ago with pains in my leg and back which Mri scans showed as nothing wrong. I have been on a long journey including A and E screaming in pain. At present I am in the process of being dismissed from work. I have a supportive husband but it's getting to him to. I no longer feel like a proper woman. I have tried Physio and osteopathy. The one thing which has given me some relief is myofascial release. I have found a brilliant osteopath who does this and was willing to show my husband how to help me. Unfortunately he is based over an hours drive away but I will do anything. I and due to see the pain clinic in a couple of weeks and think injections will be on the cards. However I have been given no information as to the implications of these. Any advice would be welcome. I tried for a blue badge but don't meet the criteria . Pain does not count. We think my piriformis is also causing trouble. I know some on this site have had an operation in France but having suffered botched surgery on my right foot four years ago am reluctant. Having said that I just want my life back . The GP has said I can go to clinic where I will learn how to accept my pain. But I can't see that as I find it hard to cope especially mentally. I don't know what advice I can give as its one day at a time and I can't even follow that!

  • Hi sky58 i do empathise with you not feeling like a proper women I also see the strain it's having on my husband and teenage daughter who have been very supportive . Today I have to see occupational health to assess my capacity which is a joke as I can't sit and as my job involves driving , bending , squatting and sitting I have no capacity I do understand their position but stop putting pressure no me ! It's a crime we have to lose our jobs .

    I too have been having and been shown Myofascial release by my physio , I do massage , stretches daily and also breathing exercises . Amy stein book is good for theses techniques you may already know this .

    All the best to you x

  • Thankyou and good luck with oc health. I find walking on the flat also helps. The meds are do strong they really mess with your head. I have a bottle of oromorph in the cupboard but have not brought myself to take it yet. It's a horrible embarrassing condition x

  • Thanks 66crusader for your advice also great to hear you are 75% better I do feel for your mother , I have not had bladder issues fingers x I don't .

    My physio has found I have tight pelvic floor she has also taught me to breathe with my stomach I also need to stay calm as stress increases flare ups by 30% , physio has helped me I know this is not a easy fix ....

    I have follow up with Dr B on Tuesday will be interesting to see the results and I'm not jumping in to have nerve blocks they scare me !

    All the best to you and your recovery x

  • Hi there,

    I have / had similar symptoms and saw everyone.

    Before you start any invasive treatment, please consider seeing Helen Keeble at Whitehart in Barnes, SW London.

    She is an incredible Womens Health Physiotherapist. No other physiotherapist worked until I saw Helen.

    I saw her several times a week for a couple of weeks, I now see her once a week and think I may even be able to move on to once every two weeks. I am 90 percent better thanks to Helen. Only 18 months ago I spent most of my days on the sofa on morphine. I had about 9 unsuccessful nerve blocks in London because I was so desperate. I was also about to have surgery in Nante, which thankfully Helen saved me from.

    Please consider seeing Helen. Also I did have the odd flare initially when we first started treatment until we fine tuned my treatment.

    I was on a huge cocktail of drugs I am almost off. My only regret is that I didn't see Helen sooner as I had several years of horrific pain and then chronic pain set in - general awful tenderness, aching and sensitivity, fatigue..... That has been a big battle to but thanks to a lot of research and change in lifestyle, I am so much better.

    Good luck, its a horrible journey but stay strong, something will help.

    Take care, Emma

  • Thanks so very much for your post Emma.I live across the pond in Canada and am having a dreadful time with peudendal neuralgia.I too go to a very good physio but have not had as good response as you have had with your Helen.I have had 3 nerve blocks, am on a fentanyl patch, lyrica and norytriptiline.Each medication is helpful but these last few weeks I am really fighting the weakness and fatigue and an overall feeling of malaise.

    I was just wondering what changes in lifestyle have helped you with these symptoms. I would be ever grateful for a reply.All happy wishes and blessings to you.Jennyrobin

  • Thanks so very much for your post Emma.I live across the pond in Canada and am having a dreadful time with peudendal neuralgia.I too go to a very good physio but have not had as good response as you have had with your Helen.I have had 3 nerve blocks, am on a fentanyl patch, lyrica and norytriptiline.Each medication is helpful but these last few weeks I am really fighting the weakness and fatigue and an overall feeling of malaise.

    I was just wondering what changes in lifestyle have helped you with these symptoms. I would be ever grateful for a reply.All happy wishes and blessings to you.Jennyrobin

  • I forgot to say, my medical insurance pays for 30min and I pay the extra 30min for Helen. Thankfully they are still paying. When my bottom goes into spasm I have bowel accidents which isn't fun. The pain seems to writhe down my legs and as you say even my feet ache. My legs feel like I am wearing a weighted wet suit the muscles are so tight. I now have only the odd attack and I pop a morphine as soon as I can feel the early signs, have a bath and lie on hotter bottles and I manage to get through. Prior to my little routine I would be lying moaning and sweating on the bathroom floor for half the night.

    I am a mother of youngish children and it is a nightmare. I put epsom salts I buy in bulk in the bath to try and help the muscle issues but to be honest nothing seems to touch the sides except morphine as the attacks are so wicked. I used to have attacks everyday, now I may have one a month but am still quite reliant on Helen to keep me stable. After 4 years of being a virtual vegetable I have gained a massive amount of weight. Thanks to Helen, wearing a fit bit (loads of walking) and now seeing a great women health physio in Fulham for clinical pilates I actually do think I will get my life back completely. 18 months ago, I used to cry about the thought of having to get through the most basic of tasks, such as the supermarket, picking the children up from school etc...

    Enough waffling.


  • Hi Emmax good to hear your success I'm seeing Maria Elliott and have seen slight improvements but I have read about Helen so may consider seeing her if it doesn't work out also good your insurance covers some of the cost , may look into this but think they may sack me due to the many consultants I have seen . Keep up the good work x

  • Hi Emma saz41 here again just curious to know what treatments you have had / having with Helen ? I haved a crap day basically written off by my work my days are numbered they don't consider physio the answer /cure to this condition it's probably because it's not a quick fix ! Reading your post has given me hope and god I need it . Would be great to hear from you thanks Sarah x

  • Hi, I'd like to know what your physio is doing for you. I saw a good physio for a while on NHS and she did some acupuncture and small exercises and that did help. I now go to one of the GPs at my health centre for acupuncture and believe that does help, but I'd like sound advice about exercise and massage if you could pass it on.

    I had two steroid injections last week into my pudendal nerve area. At the moment it all feels worse again but the consultant did say that would happen and that I need to be patient for the first weeks until the steroid takes full effect. So I'm holding on to myself, trying to not sit down and using my hot water bottle a lot.

    I wish everyone on this site all the very best, Julia.

  • Hi Julia not sure where you live I go to see Maria Elliott at Harley street London it's not cheap ! There is also Helen Keeble in SW London . Hope you get some relief from the steroid take care Sarah

  • I'm up in the Scottish Borders, so can't make use of London services even if I could afford them. But I am now linked into the Pelvic Pain team at the Royal Infirmary and hope they will be helpful in the long term. They arranged the recent injections and seem to be developing some expertise as so many women have come forward who have had problems following bladder repair operations that have caused them damage. I am feeling pretty down just now as the pain is so much worse again; it's hard to be patient and positive.

  • I understand when you say about feeling down , it's hard to feel normal and live life to its full when in pain . I purchased a book by Amy Stein a pelvic physio she also has a DVD which I found very helpful for massage , breathing techniques, trigger point release you can do at home ( not sure you already no this ) Sarah

  • I did buy the book but may look for the DVD. Thank you for that.

  • I've just been looking for the DVD but can't find it over here, only in US. Where did you get it?

  • Hi Julia I'm seeing my physio today so will ask her and get back to you.

  • Hi Julia I'm seeing my physio today so will ask her and get back to you.

  • Hi Julia go on this web site or mobile no. 07545096962 / Email this lady sells the DVD and the EZ fit glass wands for internal massage hope this is helpful

  • Hi, I'd like to know what your physio is doing for you. I saw a good physio for a while on NHS and she did some acupuncture and small exercises and that did help. I now go to one of the GPs at my health centre for acupuncture and believe that does help, but I'd like sound advice about exercise and massage if you could pass it on.

    I had two steroid injections last week into my pudendal nerve area. At the moment it all feels worse again but the consultant did say that would happen and that I need to be patient for the first weeks until the steroid takes full effect. So I'm holding on to myself, trying to not sit down and using my hot water bottle a lot.

    I wish everyone on this site all the very best, Julia.

  • This is all so useful. Unfortunately I live in the north west but I have heard Tamsin Brookes is supposed to be good. As I said befored I have found myofascial release very helpful. Also I use my hotties and have a belt with a tens for my lower back. The hardest thing is to stay positive ,see friends as distraction is also a great help. Not easy tho when everything is burning. Sometimes I just have to have a rest day. Still on this horrible journey.

  • Hi

    I have posted here before on behalf of my wife who has the same problems and sees Zurich as the only real solution to the rectal pain that she has had for the last four years. This site is very comforting and useful in exchanging ideas but everybody is different and what will work for some will not work for others. Like a lot of you she is housebound and more often that not bedridden with the added complication of GERD brought about by four years of anxiety with no proper diagnosis or prognosis and in the absence of that the firm belief that she has an undiscovered cancer that will shortly provide a painful death. So eating is no longer a pleasure, it is a torture and any food has to be specially prepared more or less as you would feed to a baby, no taste no lumps. The acid reflux has burnt her throat and now mouth, sucking ice cubes is the only relief.

    I see no real light at the end of the tunnel, thankfully we do not have to go to work but I do have business matters that take me to meetings around the South East and these days only increase her anxiety with no one to turn to in an emergency. Added to our plight I have terminal cancer and am disabled in need of a new hip using one stick around the house and two outside. My wife's condition puts cooking, washing, shopping on my shoulders.

    However, that said, the only way is forward, albeit facing the guns. We have stopped all medication for the PNE and take an occasional Tramodol when the pain is bad, also Clonazopam which relaxes the muscles and releaves anxiety, one in the day, one before bed, and an occasional sleeping pill for a good night's rest. We also have weekly visits from a hypnotherapist and a personalised self hypnosis recording to play every day for mind over matter as the mind will increase the pain. But to eradicate the pain the nerve needs to rest and in our case with rectal pain and constipation to aggrevate the nerve rest is impossible but we can confuse the nerve. Like many others we have seen everybody including Baranowski and turned down the nerve blocks under advice from a far more qualified mecical professional. Our advice is to visit St. Marks hospital in north London where they have a special team dealing with these problems and ask for a Sacral Nerve Implant. This treatment will confuse the nerve, much like Tens, they will trial it for two weeks before a permanent implant to see if there is sufficient benefit.

    It may help some it may not, but it is another path to follow that will keep hope alive.

    For me and the many others trying to help those with this intolerable life changing condition it is difficult to imagine the suffering and pain as it goes to the core of the body but all I can offer is support when needed an the knowledge that in all things the only way is forward introducing as many distractions to our mind as we can.

  • Could you tell me why you have turned down the nerve blocks??? I understand when you talk about the rectum and constipation and setting off the nerve. I stated I also have spinal cord injury. I have neurogenic bladder and bowel, which means I have to self-cath and dis-impact my bowels. In the course of doing that I set the nerve off and experience more agony then ever. This issue with a different kind of nerve block is scaring me now with all the negative input of the post here. I feel like I am trapped!

    Reading everyones post is a real story about every one's suffering. As far as distracting ones self from this condition is just not possible for me. Prayers to all of you!!!


  • Trish

    You obviously have a lot more going on and as I have said everyone is different and need different treatment, however my collegue who I cannot name but is a celebrated surgeon in this field suggested that nerve blocks can have an adverse effect creating more pain and more problems, paricularly incontinence, and for that reason guided me towards sacral nerve implants which are tested first and are reversible if subsequently they stop working or cause problems. I suggest that you speak to St.Marks, there is a professor there that is a specialist nurse, and discuss your problem, nothing ventured, nothing gained. They may be able to help, they may not but they will be able to advise.

  • Thank you berrytog for the input! I myself may do some research on sacral nerve implants. Would you know if that would help with rectal nerve pain???

    Some people say only for low back, not rectal. Thought you might know since you have a friend for consult. Many Blessings!!!!


  • PS I am in the USA !


  • Trish

    I am sorry that you are in the USA but I imagine they have experts in this field there now you know what to ask for. Just put sacral nerve implants into your search engine and see where it takes you.

  • Trish

    We have known him and his wife for many years and been on holiday together, he is fully aware of my wife's exact problem location which is lower rectal. Make the call, discuss your problem, it can't hurt. My wife has all the precise symptoms of PNE

  • I wish you the best. I've been suffering PN now since 1996 after I had a hysterectomy. I still have all your symptoms and am going next week to another pain management doctor for pudendal nerve blocks. I've had it all and so far nothing has worked. My rheumetologist has told me I have a progressive neuropathy and I believe him. I am losing the feeling and power in my feet (which hurt as if they were broken) and my hands which turn numb and burning. It all started with the horrible nerve pain in my belly which everybody said would go away and now it's 18 years later and I can't even walk a block. The only things that really help are prednisone and swimming. I do laps if I can get access to a pool and the water cools my nerve ending and allows me to stretch my tightening muscles. I've gone crazy these years as doctors look at me and I look fine and I'm still strong but the pain is terrible and it seems to be triggered in my rectum and tail bone. I use Lethicin tablets as a suppository and over the years I have managed to control the constant intestinal blocking that occurred. I'm not going until 11/20 for the pudendal nerve blocks (I've had epidurals, shots around the scar, ketamine infusions, spinal blocks) so, if you get there before I do I would like to know how you do.

  • I have had 3 injections but they did not work tried a lot of pain med that did not work. Including morphine patches I had the op at The Spires hospital 3years ago private op with Mr Wong I am still on painkillers tupentadul 250mg am and 200mg pm and paracetamols in between but I still get pain but not like the first 2 years of suffering with pudendal neuralgia and I still have appointments with pain management team

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