Re nerve pain

Hi for four years now I have been in so much pain , Pnduel nerve entrapment, this mean for me and others like me we have pelvic pain so when you sit down you are in so much pain.

I have had several types of medication now I am taking 300 mg Gabapentin 3 times a day , today is my big increase on this drug.

I recently found on line that Tameside Hospital is the best place for nerve ending pain and so now I have started new injections there.

Its hard to explain to people (so I dont ) so here I feel I am not alone anymore as lots of people just understand pain ,, we may have different types of pain but its awful in many ways .

I am waiting to visit friends but cant do long journeys and panic is wedding are coming up etc , they thought of the sitting its scary.

I wonder if anyone else does have the same type of pain I have.

I walk every day and no pain there , standing very little pain odd I know unless you are one of the rare people like me if have this .

Only two consultants in England deal with this type of pain , so thin on the ground.

And has my new consultant told me its very hard to treat and that was from someone who is dealing with this .

30 Replies

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  • Its sounds grim. When things are rare there tends to be very little research and as you say your consultant admits he doesn't know as much as he'd like .

    I hope you find someone on the site who shares this complaint. Nothing like a fellow sufferer to support you

  • Oh thank you for taking the time to write and help me , it is so nice to hear from others who are in some different type of pain .

    I just hope this Consultant can help me , not a good day today dont know why just happens that way , its called flare ups.

    Thank you again B

  • Quite a few people on this site suffer with pudendal nerve pain, me included. It is very hard to explain and there are very few consultants that have heard of it and even fewer GPs. Have a look on the Pelvic Pain Support Network community, more sufferers post on there.

  • Hi Thank you for taking the time to write to me, yes so you understand and yes only two Consultants in the country has you will know.

    Where do you get you treatment I hope you have found someone , I have suffered for 4 years and its not getting any better.

    Yes I will take a look at that site ,, thank you for your help, and I hope you have had a good day .

    I have bought many cushions to help with my pain ,, dont work all money and paying out for creams etc,, they dont work .

    More injections soon , this is at Tameside Hospital worth a look for you .

    Thank You

    B x

  • I have been down to Bristol for treatment. Have just had surgery and have to go back for more, but not nerve decompression surgery...yet! Read my posts. I have a valley cushion which I find helpful for driving as that is a big trigger for me. Helps but doesn't take it away. Nerve block have me a huge flare up so consultant wouldn't do another one. The nerve does not like to be messed with at all! Best treatment - don't stretch or put pressure on the nerve, but that doesn't work on the real world! Best of luck and let us know how you get on. Xx

  • Yes, I can relate to you! Have had PN for four years. Cannot sit, lay or stand very long. Have entrapped nerve in rectal anal site. Have had every drug and injection and pain management . No Doctor seems to know or care much about it. I am in agony and on fire 24/7. It finally comes to a point with me that its the end of the road as far as any more research or treatment! . I lay on my side in bed but never sleep much. Try ice packs, its the only relief I get. I have spinal cord injury on top of this. Bladder and bowel ruined. I pray and wish you luck!

    trishj46

  • Hi trish 46

    I just understand how you feel 4 years on ,, you sit and smile and while doing so your on fire in the pelvic area ,, changing for the right to the left side, burning , twisting , like a knife cutting you inside , and then a month ago I got the urine infection , and I came to breaking point.

    I live in Rossendale and my GP sent me to see Dr W F De Mello at Wythenshawe Hospital , now this man is good and I had pnduel nerve blocks but sadly after many this was not working,,

    Dr De Mello went on long term sick , not good for us .

    So I spent my afternoon one day searching for someone who may help me and found Tameside Hosital pain managment now they have the only other doctor who deals in nerve pain , he admits it hard to treat and not many doctors do understand this.

    We are sometimes taken for it all in mind stunt ,, not right and unfair has its not in the mind ,, well its is as far as the pain is a signal being sent that tells the brain that we are in pain and we are not but what we have is nerve end damage.

    I am now has you may have read on Gabapetin 300 mg 3 times a day ,, not any change as yet , however I do understand that is slow re the nerve endings,,

    I think PNE , ,its the worst thing yu can ever get,, however strange has i is my neighbour had the same thing she came to me in tears and in a state of not wanting to live , she was shocked that I had been in this type of pain for 4 years .. I sit in pain ,, and am okay standing up but you still feel it a little in the back ground the monster is letting us know ,, hi I am still here to make you suffer ,, and now my friend after 300 mg 3 times a day and pysio she has now come off them and only get the pain when she is upset, its a catch 22 has if you are calm is better but the pain get you upset , so now I intend to go to see the Consultant in Tameside again in Sept,, the injections he gave me about a month have not do anything but he told me we have to try different injection ,,

    We live with Pnduel Hope a site for this .

    I do hope you start to feel better ,,

    But I am here if you want to ask me anything , I will help you just as much as possible ,,

    B

  • Can I ask what the different injection is that you are going to try?

    Are you able to work? Or do you qualify for any benefits? I have had to cut down to 3 days a week- mon, wed, fri with a 'rest' day in between otherwise pain just gets too much.

    Xxx

  • Hi Sueboooo

    Firstly I have had problems for over 20 years , and now retired.

    Regarding a benefit I do think has long as the Consultants as confirmed that yes you do have nerve damage that is causing you problems , and yes I do know if I was now working no way could I do my job which was sitting down , its not possible so in that cause I would say yes and have a go get someone to help you fill in the forms has you have to know what to say or they will knock you back .

    Well my old injections were pnduel nerve blocks ,, now at the Tameside they are called Greater Trochanteric injections for Non Acute Pain .

    I have had three and not got any pain relief yet.

    Do you live in England ?

    I hope this helps , you can contact me again and I will help you in any way possible.

    I the end you are not on your by a long way the amount of people who do have nerve ending pain seems to be increasing and I wonder why , yes I do think also if you learn to breath correctly etc, and keep has calm as poss it does help,,

    Hope you have a better day today ,,we are deserve to be without this monster inside,

    have you tried the web site ,, Pnduel Hope,

    I was told to go on this by Dr De Mellow who is the only 2nd Consultant in England who does nerve blocks etc,

    B

  • Thank you. Yes I live in UK. I saw Dr Greenslade, a pain consultant in Bristol who diagnosed me. Pudendal Hope website is very good.

    Take care. Xxx

  • Off I go to google him

    B x

  • Ps out of interest how did he diagnose you with PNE ,, I had a test by the nurse re the vagina area , and a internal , then followed by the pnduel nerve blocks , this didnt help me.

    Yes going now to google him , never know if this consultant doesnt do anything else then maybe I do have to try Bristol , you try anything for this to leave you .

    B x

  • I had already had a pudendal nerve block at my local pain clinic that was fantastic for 24 hrs but then caused a 5 week flare up. My local pain clinic then said they would not do anything further and discharged me. I had to go privately, buti spent an hour and a half talking to him and he said I had given all the parts of the puzzle and it fitted together perfectly for pudendal nerve damage.Mine was caused by prolapse surgery. He didn't examine me as he was aware previous examinations had been extremely painful and I had a 120 mile trip home. My local hospital had diagnosed me with an internal bowel prolapse (by MRI) and he felt that was contributing to the pain as it was putting pressure on the damaged nerve every time my rectum was full. Going to the toilet is difficult and painful. He referred me to his colleague Mr Dixon in Bristol who is going to do a laparoscopic ventral mesh rectopexy to fix the prolapse to prevent the pressure. Nerve decompression surgery was mentioned, but as it is not available on the NHS I will see how my pain levels are post op first. Xx

  • Hi , sounds just awful .

    Well mine at Tameside Hospital is NHS so that may be worth a look at for you .

    I had Greater Trochanteric Injection for Non Acute Pain about 4 weeks ago ,, and had no pain for about 4 days then back to normal , and a flare up , not good.

    I just hope now that this hospital will help me , we can only keep trying.

    This consultant found pain in my inner thigh and also in the pubic area and my outer thigh, so that is were the needles went painful but you will agree we are well used to constant pain of levels that reach 1 10 ,, 10 or near to it daily .

    I hope and pray someone some day comes up with the way to treat us , has to be honest I think they know very little ,, but I will keep you up to date, and perhaps you will to me .

    Hope it helps that you have someone who really does understand.

    B

  • Will do, thank you. Take care. Xx

  • I also have all the simptoms on PNE. I can not sit, stand around or lay on my back without feeling like I've got a burning hot knife up my bum!

    I have been suffering for years with painful fissures, and the numerous surgeries I have had have shredded my nerves down there.

    I have just started to see dr Andrew Baranowski in UCHL. I am yet to start any treatment.

    You are not alone !!!!

    Xxxxxx

  • Hi Suzysheep.

    Yes has I added in another reply , on attending the Wythenshaw Hospital I was shock to find out about men having this also you just dont think men would , but yes so lots of women some so needing to have their nerve blocks they couldnt sit down, one young girl wondered why I was sitting she was curled up , she said when we spoke about going out for meals her family knew and she used to just stand up and leave the table for a while ,I dont do that I just put up with it,,maybe I am mad.

    Its burning , twisting , stabbing , throbbing , just horrid monster ,, and to be honest I am just praying these tablets will work,

    I did the mindfulness course it was okay ,, but to be for pain it hard has all you learn on a bad attack ,, or flair ups has the consultants call it , they make it worse,,

    I dont tell my family has not point and when I get up I put make up on done this just has I feel better , when I went to the GP in the first place they try to say its all in your mind,, mmmm not a good reply and to follow up with , ,oh you look so well ,, not good either no indication of what you are feeling , and no one can see anything so a all round crazy problem for us.

    ButI do try and have to has I wont give up easy , a determination will get us through .

    I hope you have a better day today ,

    B

  • I find the Tempur memory foam seat cushions enable me to sit down without causing further pain in rectal area. But for me they seem heavy to lug around. And it's so tiresome!. But I have several so always have 2 to hand in car and some with covers on with cross body straps. Plus the wheelchair sized ones for use when driving my car.

    Over the last 17 years, I know I have got slightly worse with the pudendal problem only because it used to start as soon as my feet touched the floor but now it wakes me up or is there when I wake up with other pain such as the nerve damage from the Tigger point therapy from the Physiotherapist. I do have some help from going for Traditional Chinese Acupuncture usually every month which also helps the coccyx which was pulled out of alignment by the surgeon at same time of pudendal situation.

    x 🌹

  • Hi Rosepetal 60

    That is a awful long time to have this horrid monster has I call it,, if someone had told me I some sort of something moving inside me and it could be take out I would be so happy ,,

    Where did you buy you cushions from sounds different from the 4 I have bought they have holes in center , mind you lots of companies are making cash of our monster inside, to be sure I look at website with promises of tablets that take away the pain ,, not any good and lies of course.

    Well I go to Tameside Hospital now the best Hospital for nerve ending pain they say,,

    How do you think your pain started ?

    Mine I think was after a awful fall and hurt right the bottom of my spine.

    Also they do say emotions , so I did the mindfulness course its very good but when others are sitting there ,, well I am thinking ,, wish I could stand up ,,

    Its quite shocking when I attended the Wythenshaw Hospital how many men and women suffer from this and to be honest its so sad that not much is known.

    I am on my tables and just wish every night to wake up an please God its gone,, but no you just know when you wake up ,, and its hard to get out of bed to continue ,, I get ready and make up and hair done etc etc,, and smile , not many know , well what would they say ,, oh you look well, has this is what I get all the time,, little do they know .

    Hope you have a better day today ,,

    B

  • Thanx for reply. I have bought max of 2 from Tempur direct many years ago. But it is an expensive way of doing it. But in recent years, I have bought Them off EBay . Some new some second hand. I have cut some off them down just a little bit to make them easier to carry. If I cut too much off they loose their strength to work. If you do decide to buy one, don't be put off by the fact they seem firm. They need your body heat to soften up a bit. So if I was using my car in winter months I would put a hot water bottle on it first so it wouldn't be hard to sit on it. But that's the only time. I can't use the donut style cushions because I have rectal prolapse as well. All from the operations anterior and posterior repairs. One of which was a mis diagnosis. Took me 6 years by seeing consultants out of my area to get some sort of diagnosis.

    And the last disaster was the trigger point therapy less than 6 months ago. My hopes were way to high with that. But what I didn't realise was that I was going to end up worse than when I started.

    The only people who understand are the people who suffer with it or something similar or worse.

    Hug🌹

  • Hi yes indeed your so right , no good explaining , is like giving birth cant explain it.

    Oh okay I will try with the cushions.

    Its try anything ,

    My new Consultants is trying Greater Trochanteric Injections for Acute Pain, had three no difference up to now that was a month ago now.

    Also my Thyroid gland in running to quickly so now that has been found out ,, that I thought wouldnt help.

    Well had my text from my friend walk every day so that has to keep me fit , to cope with the monsters ,,,

    B x

  • Yes, I get the ' you look really well' thing said to me all the time. Little do they know what's going on inside both physically and mentally.

    I've not heard of Tameside hospital..... I'm off to google it!

  • I was cured of pudential neuralgia by dr. Eric Bautrant in France. look him up on google. He is a leading expert in this field and he speaks fluent English. He operates in Aix en Provence and he receives patients from all over the world.

  • Fantastic news! I will look him up. When did you have surgery? Can you give us more details? Was it a long recovery? So nice to hear a success story. Thank you. Xxx

  • I was diagnosed by dr. Bautrant some years ago. He recommended physio therapy by a specialist dealing with this problem which involved using an electro stimulation device three times a week for two months. Surgery is the last resort I think.

    Later I did have a minor operation for vestibulitis performed by dr. Bertrand which was successful. I think the two conditions were related.

    If you can contact Dr. Bertrand I'm sure he could advise you your best options. Good luck.

  • Hi Suzyhayes

    Well I have his name now , however would this be private.

    Can you let me know what happened in the treatment that cured you has I am interested to know .

    I am having new treatments myself.

    I am so happy for you its must be wonderful to be out of pain,

    how long did you have PNE,, and did you struggle to find this doc,,?

    B

  • Please see my reply to Sueboo regarding treatment

    I live in France so I am covered by the excellent French health system. I was referred to Dr. Bautrant by my G.P.

    This was a few years ago but I can still remember the pain and discomfort. However the story doesn't have a happy ending as for the past three years I have suffered from intense neuropathic pain in my hands as a consequence of having three operations on my neck for cervical stenosis and cannot find any relief.

    This week I am starting a course of hypnotherapy at a pain clinic in Avignon. Anti depressant drugs are recommended but I don't like taking these drugs that affect the brain functions.

    I hope you find a treatment that works for you. Living with constant pain is no joke. Good luck.

  • It is horrible and similar to the pain I have. I'm also on Gabapentin and I take OxyContin as well. Have a look at the Vulval Pain Society online. There are opportunities to be involved in research and also you may find a local support group. As well as sitting being painful, sometimes very painful, I find lying down can make the pain worse. I hope this helps. In a perverse way it's good to know one isn't alone.

  • Hi Nora 1

    Yes I am to same re sitting its so so bad , I take now 300 mg Gabapentin , but I feel quite odd when trying to drop off to sleep , I can only think my central nervous system is so fired up its hard to relax .

    How long did it take for you to find any pain relief from Gabapentin

    I can even feel the pain slightly when I am stood up , but not has bad so my daily walk is wonderful and ironing today was .

    I went to a meeting last night oh dear so horrid the monster inside has I name it was on full alert , oh so painful .

    I just hope that the tablets kick in soon , I also go back to the Hospital soon so hope I get the correct help.

    B

  • I feel it pain n fully understand. I have also suffered with chronic pelvic, coccyx, buttock n lower back pain since pregnancy over 7 years ago. Have been diagnosed with myofacial pain syndrome n pelvic floor dysfunction. I get very desperate sometimes n hate living in constant pain :(

    Going to ask my gp to refer me to Dr DeMello in manchester as am having to have my pain medications reviewed tomorrow. Been in agony for over a week now with my lower back. Normal doses of buprenorphine n additional naproxen r not touching it x

    I hope this site helps to support u. I have only just joined this evening.

    Keep strong

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