Rectal nerve pain, a life changing experience

about three and a half years ago when on a motoring holiday in France my wife started to experience chronic rectal pain following a period of increased constipation possibly brought on by the anxiety caused by being told that she had type 2 diabetes. a colleague motoring with us, a consultant colorectal surgeon arranged an abulance and an immediate hospital examination where five fecaloma were removed from her bowel and was told to return to England and have her bowel cleaned and investigated which was done and nothing was found to explain the pain which was like sitting on a ball or acid being poured into the bowel. after three an a half years we have nothing to explain an ever increasing pain now with GERD and bills for £20K having seen the best this country has to offer.

Dr. Baranoski of the London Pain Clinic suggests Pudental Neuralgia but is not sure recent MRI and CT scans show little except the possibility of the nerve being slightly irritated, my colleague warns against a nerve block only to be used as a last resort and suggests we book in to St.Marks, north London, for a further thorough investigation and a possible nerve blocking transmitter.

What has come out of our visits to a dozen or so emminent consultants, most of which were professors, was that very few were aware of Pudental Neuralgia (including our GP) and most disagreed and had no diagnosis to offer.

The constipation has become intolerable, the pain worsens by the day and eating is a nightmare. There have been three attempts to swollow an overdose in the early years, pleading to be taken to Switzerland to end it all in a dignified way rather than endure a painful death and life as we knew it has ceased to exist as we never go out, I do the shopping cooking etc., and my wife spends her time either in bed, a chair (until the pain is so bad) and walking endlessly around the dining table unable to accept visitors or speak on the phone to anybody save her children and occasionally her sister. Fortunately we are well served with a house cleaner and contract gardeners as I, myself, am disabled having to use two sticks to get around and have terminal cancer currently serving as a guinea pig trialling a new drug that could provide an extension to my life.

The point of this post, and I am new to this community but not to Health Unlocked, is to ask fellow sufferers, and I am sure there are many that can tell a sadder tale, for any advice or contacts for specialists that understand the problems. We are located in Kent, we would go to Nantes but any travel by car worsens the intolerable pain.

THank you for reading, listening and understanding and I look forward to receiving any help offered.

17 Replies

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  • Your wife's symptoms sound very similar to my own. I had three years of morphine the pain was so unbearable. I saw many specialists including dr b. I had 8 unsuccessful nerve blocks which I feel made me worse in the long term. I went to nante and they recommended surgery. Thankfully I discovered Stephanie prendergast in San Francisco then Helen keeble a women's health physio at whitehart lane in Barnes sw London.

    Stephanie and now Helen have reduced my pain by 90 percent. I have flare ups but they are manageable now and the desperation has gone. Please, please see Helen. She has turned my life around. I wish you good luck in your search for help.

  • I have written on this site before about pudental neuralgia. I have an entrapped nerve in rectal-anal site. I have tried everything on here and everything as far as medications. I am in excruciating pain all the time. I cannot sit anymore even with donut pillow and ice. O top of this I have neurogenic bowel and have to dis-impact which almost makes me pass out. Laying on bed no longer helps. I am slowly going down hill. There is no more help for me. I want to try acupuncture but have little hope plus its very expensive and not paid by my health care! Rectal pain into vagina feels like burning blow torch up my butt. I also have intolerable pain and distress from sensation of a rock in my rectum causing such pressure. I am in agony sitting, walking, standing. Cannot go out any where. I also have spinal cord injury----no paralysis but my nerves in back are so screwed up that so is my circulation. My feet are either numb or like a block of ice 24/7. and cannot wear socks or shoes since they go on fire the same as my butt. Everything seems to be in France, no help to me in USA! PT does not work and makes everything worse! I can understand why people want to commit suicide. I am trying to hold on with my faith that is strong!

    I had rectal surgery, fissure, ulcer, abcess---no difference. What is it like to sleep?? My heart goes out to everyone on this site with their suffering! Where do we go from here????

    Sending blessings & Hugs!!!!!!

    trishj46

  • I travel everywhere laying on foam rubber in back of the car. I broke two tiny pelvic bones, talked face to face with the radiologist, telling her that I felt like I was in childbirth. I've had my spinal cord detethered and Tarlov cyst drainage, have had 3 rounds of CT guided pudendal blocks and got referreded to someone here in US that does the pudendal release, but he takes no insurance and we are poor. I am lucky, I guess, because my Dr is going to prescribe capsules of pure morphia for me to insert next. Already use Valium up there--30mg a day. I can at least point to the day I fractured the two little bones that forever changed our lives. I too have the rectal/ vulva pain, and chronic constipation but no one interested in "why". No one interested at all. Its horrible.

  • Hi, so sorry for you and your wife.........there is Mr Greensdale and Mr Dixon in Bristol Mr Greensdale is the nerve specialist and Mr Dixon is one of the top guys regards the bowel etc. with the amount you have already spent you won't notice the little extra .........people do say when you have tried everything that is the time to go to Nantes there is a lady Called Judith who is one of the ladies that runs this forum, I am sure she will see your post and she will have some possible suggestions.

    I may have spelt the names of the two doctors wrong but look them up on the internet, Mr Greensdale went to Nantes to learn about the Pundendal Nerve, but if I was thinking of surgery I would only let the French do it, as we just don't do enough in this country.

    There is another forum called pudenadalhope it is American, but has a lot of information also and the lady who runs that forum is called Violet she was a nurse, and had the PN. Surgery in France a few years ago it was successful but isn't for everyone, that's why it is a last option.

    Has your wife been to a specialist Physio ? That's what a lot of us do try, but she really needs to somehow get the constipation. sorted as this will only be making the problem worse, I would start off with a double appointment with the two guys in Bristol, they will then tell you if they think it is worth going to Nantes, I guess it depends how many things your wife has going on.

    Has she been seen at a pain clinic? .........and tried any of the " nerve " drugs.

  • I'm sorry to hear about your wife's suffering. PN and IBS can occur together. I suggest you read the "A Headache in the Pelvis" by Dr. David Wise and see his website: pelvicpainhelp.com. These conditions can also be helped by mind-body practices and physical therapy. I had digestive issues for many years until I got help from a nutritionist recognized those symptoms as low stomach acid which was resolved with a simple supplement for a short period of time. When I start getting gassy now I massage my abdominal muscles and it relieves it. I highly recommend Dr. Wise's pelvic pain clinic and using mind-body methods for pain relief.

  • I want to thank you all for your kind support over the last two to three days I have learnt a lot and have new pathways to go down instead of what was a full stop in front of me. I feel warned off the nerve block for the moment and a trip to Nantes may follow but as a last resort. How these things come about is interesting but my real attention must be to a cure or some relief, this could have resulted from a hysterectomy in 2001 because of a large fibroid or nerve damage three years ago when removing the fecaloma digitally. The hypnotherapy my wife is now receiving is of limited help as when pain is real it is difficult to concentrate on someone telling you it is really mind over matter although I am told there are more brain cells in the bowel than the brain!

    Thank you all once again it is comforting to know I can bounce things off others suffering with the same problem and the problem varies from person to person, I will report back if I find useful treatment but at least there are roads to explore allowing some hope of a better life.

  • I forgot to mention everyone considering the implant has to do a two week test period with an external battery pack the size of a mobile phone, you have to do a pain and bowel diary for two weeks before the trial period and one during it.

  • i have similar symptoms like sitting on ball and constipated with lots of pain, i have just had trial of an inter-stim implant i could not believe how better i felt during the trial , the trial has now finished and the implant removed so i am waiting now for funding to be approved so i can have a permanent implant for a better quality life

  • Hi Rugby13

    Thanks for your comment, this has been suggested as a possible solution and I understand there is a department at St.Marks Hospital North London that specialise in this. I would be interested to know what other symptoms you have and how long you have had them and what treatment and or medication you have tried prior to the implant. I note that nerve blocks are not necessarily the answer and can make things worse and that specialised physiotherapy has proved to be useful for some sufferers.

    Have you any details on the permanent implant i.e. cost, size, how long it lasts? it seems that the constipation and straining causes the nerve, if that is indeed what the problem is, to be agitated and in turn the agitated nerve causes the constipation along with all the drugs that are needed to surpress the pain.

    Thanks again for your help it is most useful as will the answers to my questions. having someone that has exactly the same troubles is very helpful as there are many variations and causes of pelvic pain.

  • i have had lower abdominal pain ,chronic anal pain and constipation for over seven years.i also do anal irrigation daily but during the trial i only had to do it twice in the two weeks. i have been diagnosed with Levator syndrome and Anismus. i have tried nerve blocks , botox injections and biofeedback to no avail.

    the implant i have just tried is not a nerve block is it sacral nerve stimulation sending electical pulses to the nerve, if you go onto a site called Medtronic and look at interstim therapy. it is a bit like a pacemaker to make the muscles work without pain the and straining. i believe the cost Is about £10,000 and the battery last about 3 to 5 years and it is about the size of a £2 coin . i hope this you gives a bit more info if you need any more just ask

  • Thank you Rugby 13 for your help, my wife has had bad constipation, gradually getting worse for five years but the pain for three and a half years and in the last twelve months GERD with bloating and stomach pains, I suppose she has always had constipation from time to time but nothing like this now I think she has given in trying to find a cure and imagines a cruel painful death shortly as a result of what is wrong as there has not been a proper diagnosis despite countless tests and scans at the best in London, now she spends her days never going out or seeing friends just in bed or in a chair rarely dressing, eating is very difficult with no taste due to the GERD and burning throat, hypnotherapy is having little effect on her mood. I am interested in the anal irrigation that you undertake daily for the constipation and any preferred pain relief medication. Tramodol has some benefit but it does cause constipation and I think we have been through the lot where constipation relief is concerned even the latest drugs like Prucalapride and Constella let alone the likes of Lactulose, Senna anf Dulculax, and now supositories do little.

  • The irrigation system is Peristeen by Coloplast it is easy to use and available on prescription,you have to be shown how to use use the system the first time by a medical person, i use Bisocodyl as the laxative the night before irrigation, i use Tramadol with paracetamol it helps slightly ,for the bloating i take Buscopan and Simeticone . The thing about the irrigation it relieves the pressure of constipation, i have tried several other pain relief like Duloxitine , Gabapententin etc.the other medication i take is Nortyptyline at night to help Relax the muscles. i really hope you find some relief for your wife as i understand what she is going through,if you need any more info just ask

  • There's a product called Natural Calm which relaxes everything and helps tremendously with constipation

  • Thanks for that LizzyQ

    It sounds too good to be true, however I have read about it and it appears to be a wonder cure.

    Which NaturalCalm product do you use and where can it be bought? TruMag seems to be the most successful but I notice Amazon sell a variety of it.

  • I sympathise with you. I also just lay in bed due to intense rectal discomfort. I was diagnosed last year with a large rectocele and rectal interssusseption. After intense pain for nearly three months, it seemed to be under control. I was referred to a pain specialist nurse who insisted I use rectal suppositorys every day. This has triggered it all again I am now 6 weeks having intense discomfort, have now been told most likely nerve damage. I am located in Kent also and would be grateful if anyone could give me advice or where to go for help....

  • I have only just found this site and I am amazed at the number of folk who are suffering in almost the same way that I am.

    Apart from the rectal pain I am a normal 67 year old male. At the end of 2008 I had a stapled hemorrhoidectomy and that is where my problems began. The surgeon did not tell me that I could end up with damaged nerves in my rectum and that is what I now have. I have ongoing discomfort that is only relieved when I lie down in bed, sitting is uncomfortable and I get very twitchy and have to move around. The pain is difficult to describe but it is very different to say that of a broken arm. It is a nagging pain that consists of a large degree of discomfort.

    For a few years I have had a ganglion nerve block and that has largely worked. This is carried out at an NHS hospital in South Manchester. The time gap between the injections grew from 6 months to around 8 or 9 months and the last one was in February of 2016. This does not appear to have worked and now I will have to wait for the next session but I feel that in the meantime I will be miserable and very difficult to live with as the discomfort makes me really irritable.

  • I have not had an official diagnosis, but have had a couple injections down there. I found that lidocaine patches help me sleep and stop the spasms at night and keep the leg jumping and twitching at bay. Also, the tense unit helps if i place it close enough to the area. Massage and epsom salt soaks also help.

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