Pudendal neuralgia burning pain - Pelvic Pain Suppo...

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Pudendal neuralgia burning pain

Benhur1
Benhur1

Does anyone know whether pudendal nerve decompression surgery is available on the nhs.

Lots of our suffering with pudendal neuralgia burning pain don't know having decompression surgery can help if available on the nhs as going to Nantes in France is beyond for most of us to the costs of the operation.

I know costs of decompression surgery must be high in Nantes, anyone estimate costs.

Living with pudendal neuralgia burning pain and decrease in large bowel movements is taking the toll in my life.

Sometimes you think about the other option as this is no living or even a survival.

I am a male with this terrible this condition and love to from my friends in how to beat or get relief from this.

I'm on gabapentin and pregabalin but not helping much, my GP haven't referred me to specialist yet but I been told there's not lot they can do unless nerve decompression surgery is carried out.

I been told Pelvic Physio Therapist with pudendal knowledge and experience can help but does this include the burning pain.

28 Replies
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this is going to be a long answer so hold on to your seat belt!! absolutely pelvic floor physical therapy can help and it's emotional and mental health help as well as physical help and yes it will help with the burning ...something you might want to try is put a teaspoon of baking soda in a glass of water and drink it this is a trick that women do to stop burning in their bladder and it also stops burning in the rectal area ...mine is mostly in the rectum and I've had it for a year and a half. I have been in pelvic floor physical therapy a year and thank God for it because she talked me through a lot of tough times... I started having Dave's more normal and then weeks more normal but I was also on a low-dose muscle relaxer and gabapentin at night some of that time I also did stretches breathing and meditation... It sounds like you're really on the edge right now and trust me a lot of us have been there you have to talk yourself down from it so download the pathways app... it's free and it's really really helpful to calm your nervous system down which will in turn help with the pain and burning... Some of the other things I've done is I mixed my gabapentin and muscle relaxer with coconut oil and I made suppositories that I can let them melt on the outside since I can't hardly handle anything rectally... I bought suppository molds on eBay that's one thing I tried another thing is jif peanut butter start doing diaphragmatic breathing I know it just sounds crazy that it would help but it really does help and really eliminate as much stress as you can I know people get ablation cryoablation they try all these crazy alternative things that sometimes works sometimes it don't... Trigger point shots nerve blocks but I've held off on doing any of that just to see... I gave myself two years to see if I could get improvement before I do anything more invasive...

Buuldog
Buuldog in reply to kalecolbe12

I have heard that people have had some success with PT indeed you can read their stories on here, I had started on this route myself before the pandemic started but have not been able to return. I cannot recommend PT because I have not yet been through the process but I can maybe save you a lot of time if I tell you that you are unlikely to find that the NHS has anything to offer, this has been my experience in over 25 years with this condition, they will prescribe you pain killers and they might help, we are all different and it is trial and error.

On a positive note I was in very bad pain 25 years ago and it took about 5 years for the pain to decrease and then every year it was a bit better, that was until last year when it came back with a vengeance, what I am trying to say is that it might burn itself out without any intervention and that you just need to hang in there.

I know that it is depressing all of us with this condition can relate to how you are feeling. So my recommendation is to take any pain killers that doctors prescribe but do not keep taking them if that do not work, you will just give yourself another problem. Look into a PT this might help and hang in there because things might improve just with time alone.

kalecolbe12
kalecolbe12 in reply to Buuldog

Yeah I agree time can help but during that time some of us have to take medication to get us through specially if we work....it's kind of a two steps forward one back step back kind of thing but as long as were making some progress I think it's worth it... And you're right it does take years not months.... The Anderson wise protocol say it takes two point five years minimum... Of course that's their opinion with all the research they've done... Why do you think the pain came back?

Buuldog
Buuldog in reply to kalecolbe12

The pain came back because I over did things, I don't mind saying because it might help somebody else.

As I had described before I had slowly improved over a 25 years period in that time I had been able to keep working and have what would appear on the face of it a normal life, you know got married had children paid off the mortgage etc, although I had periods when I had to literally crawl up the steps at railway stations because walking up them made the pain worse, but I kept on going and even changed what I did for a living to make this possible.

Because of my condition I had disciplined myself to the principle of only one sexual encounter per week with my partner, but for some reason I abandoned that principle for about 6 weeks starting in February 2019, then one day while out walking the pain came back not in the same place as before but just as painful as it was when I first developed symptoms 25 years ago. And that is me now with pelvic pain and looking for ways to improve my situation.

Therefore all I can say to anyone reading this is that even if your symptoms have improved, always remember that you are living with the potential for it to return and just be cautious and do not over do anything.

kalecolbe12
kalecolbe12 in reply to Buuldog

So where was the pain before and where is the pain now ?I'm sorry I'm sure you told me but I'm just trying to keep track and learn

Benhur1
Benhur1 in reply to kalecolbe12

Thank you kalecoibe12 and Buuldog

If three successive guided nerve blocks into the ligaments in your ischial spine don’t work, it’s not the rear branch of the nerve that is injured.

If both anaesthetic and steroid are injected in the aforementioned blocks, and you can sit pain free, the block worked. They usually only last 12 hours or so.

They need to be done a month apart.

If they let you sit pain free BUT the pain worsens.... you need decompression surgery. The sooner the better.

I have levator-ani syndrome causing burning pain and pressure in rectum and debilitating Abdominal spasms. I also suffer from Dysfunctional bladder/Bowel with complications of adhesions.

I got diagnosed about 4yrs ago and I can honestly say my (NHS) specialist physio saved my life. They were the first and only health professional who asked "how can I help you?.

Physio consists of vaginal internal /external trigger point therapy which gives great relief to muscle spasms. Doesn't eradicate pain but makes the pain less intensive.

I also get botox injections into pubirectalis muscles and the combination of treatments helps a lot!!!!

I don't think there is one treatment fits all symptoms. It's trying combinations of meds and treatments to see what works for you.

It's great that for short periods I feel more normal and get to sit on my bottom without being in agony!!!

Best advice is to research what treatments are available in your local area, and discuss with your practitioner what would be suitable for your needs.

Stay strong and good health.

kalecolbe12
kalecolbe12 in reply to Skye22

I was wondering if you can tell me how many times you've had Botox injections and how long they last and also if you get increased pain right after they are done?

Benhur1
Benhur1 in reply to Skye22

Thank you Sky22

Can please ask what treatment are you on for dysfunctional bowel.

I have reall issue with large bowel movement as suffer from extreme constipation whether its result of my peripheral neuropathy or pudendal neuralgia.

I take 2 tablets of senna maxi strength every day and sometimes laxido but not helping much.

Is there anything GP can prescribe to relieve the bowel movement.

Due to the Covid-19 am still waiting to see the NHs specialist.

Skye22
Skye22 in reply to Benhur1

Yeah I have extreme Bowel issues, slow transit colon meaning things don't move very quickly and little to none feeling in rectum to have a normal Bowel motion. Bowel also compromised with adhesions.

Because of the type of slow colon I have, laxatives do not work for me, I could take a whole box of laxido with no effect!!!

I have to use trans anal irrigation (Quofora) daily, and sorry to be graphic but because my push function compromised I have to manually evacuate. Sounds gross but it is my normal and works for me. Anyone who suffers from chronic constipation will agree that you will try anything to be able to have a Bowel motion.

At present surgery is not an option due to risks involved, so it's down to condition management.

Not really coping very well at the moment as all my treatments cancelled due to covid restrictions. I feel very much abandoned!!

Benhur1
Benhur1 in reply to Skye22

Hi Skye22, we're all in the same boat my friend and till we don't get better you have to do what it takes.

You mentioned about surgery is there surgery to remedy the slow bowel movement.

I take 2 tablets of senna maxi strengh everyday it helps a bit but with lot of discomfort in rectum and belly.

Sometimes have to mix it with laxido.

I would really like to know if there is surgery to help the slow bowel movement.

Skye22
Skye22 in reply to Benhur1

As far as I know there isn't surgery for slow transit colon, apart from meds and diet that's about it for me.

Because I have Bowel adhesions my Bowel function is further compromised. I have had previous surgeries to separate adhesions but now the risk of complications is too high.

Have you tried Bowel irrigation? My specialist physio supports me and monitors my symptoms, it's an alternative to taking laxatives.

I celebrate the good days with a walk or meeting friends for lunch the bad days in flare up I just have to get on with the debilitating pain. Hopefully soon treatment will start again soon.

Benhur1
Benhur1 in reply to Skye22

Thank you Skye22

I take 2 tablets of Senna Maxi a day they do work but whe I go to toilet it's always small quantity.

I'm hoping get my GP to give me prescription laxatives for chronic constipation.

Skye22
Skye22 in reply to Benhur1

Hope all goes well. Wish you good health!!

Benhur1
Benhur1 in reply to Skye22

If slow movement in colon it takes long time for stool to reach bowel and rectum. This causes real discomfort and pressure in your bowel.

Even after taking senna maxi 2 tablets it takes nearly 24 hours for any bowel movement

The irrigation system you're using does it to help to clear and whether your stool reach yours bowel to use daily

I get botox injections every 3mths, have had them done 3 times now. Unfortunately I was due them at the beginning of lock down and procedure was cancelled.

I have really noticed a big change since not having them, my pain has Increased quite significantly. Hopeful clinics will return to normal soon!!!

In answer to your question after each procedure I was uncomfortable around injection sites this is because the injection goes into the muscle, it is short lasting.

Combination of injections and trigger point therapy with physio really helps me cope with pain, it also means I can manage with less pain medications.

Just a few thoughts . I agree with all those who have already suggested finding an experienced PT. Once you have found someone, you are likely to find that they are a mine of information - well beyond what they themselves can do.

As far as surgery is concerned I suggest you use the search function on this site to look for those who have had decompression surgery and find out about their experiences - positive or not so positive. As far as I know there are places in the UK - Bristol, I think, where such surgery is done. As long as the UK has not finally left the EU it may be possible to have surgery done in Nantes on the NHS. Those who have had it done are better qualified to give information. The administrators may be helpful here and certainly reliable.

Benhur1
Benhur1 in reply to edythe

Thank you edythe, your info very useful.

Bristol is private I think you need to arrange funding from nhs first prior to decompression surgery in Nantes.

I am in my 12 year of right sided pudendal nerve pain

I have been to loads of specialists in this country, I went to dr Greenslade in Bristol, he said he didn't think I had it but no tests or anything , no offer of a ct guided injection

I went to dr de mello Manchester, told I had it had two non guided injections 2nd made it worse ,

No one on the NHS does decompression surgery

My partner sorted out the long winded affair of getting me to Nantes about 5-6 years ago , they did a c.t guided injection and said I had right sided pudendal neuralgia

They told me that they DO NOT operate on everyone who has pudendal issues , they only operate on people who they feel have true entrapment , then they explained that , which made perfect sense

They said pudendal neuralgia in their opinion is when the nerve is being trapped by other means for example a muscle in spasm stopping the nerve gliding and pudendal nerves need to glide

Doing compression surgery cannot help this because the nerve is feeling the pain but the muscles which is causing it will still be in spasm so if decompression surgery was done , and healed absolutely nothing would be achieved because the muscle in spasm or other pelvic floor issues causing the problem would still remain

I was told pudendal nerve entrapment was a lot rarer and they call it true entrapment

That is when the nerve has come out of the channel it is meant to be gliding in and then is trapped and can need releasing, this is not straightforward though

I was told the trouble with that scenario is that it can retrap and move out of place when healing !! Plus then there is scar tissue that can compress the nerve

And also you can end up in worse pain because of this

There is no quick " chuck yourself under the surgeons knife and you will be pain free" I'm afraid

They felt mine was pudendal neuralgia caused by something muscular trapping the nerve

not classed as true pudendal nerve entrapment

Therefore they would not operate

I believe and understand what they have told me , I am pretty sure mine is being caused by a tight rectal muscle on my right side at the front impinging on the nerve , in fact a colerectal surgeon ( the 8th one I saw!!)

Examined me a certain way and said he felt that was the cause but knew of no one who does rectal pelvic physio for a woman , so still trying to find someone

They do rectal work on a man a male physio but not on a woman and I know my,problem lies in my rectum not my vagina , as I have had the vagina muscles ruled out as tight , hypertonic

Sorry the post is long !!

Add-on
Add-on in reply to electricjaws

Very interesting ...

Benhur1
Benhur1 in reply to electricjaws

Thank you electric jaws

At least we know now nhs do not do decompression surgery and surgery at Nantes doesn't always help.

Good luck and hope everything goes ok for you

Lib1956
Lib1956 in reply to electricjaws

Where do you live? There is a female PT who I use and who does rectal pelvic therapy. She is in Canterbury Kent and she told me there is only one other specifically trained like her in the country, she’s in Manchester I think. I just googled ‘woman’s health physical therapy Kent UK’ and found my PT.

electricjaws
electricjaws in reply to Lib1956

I live in York ,Manchester would be not be impossible but Kent would

Would it be possible to find out who the one is in Manchester if you get a chance to ask her ,( don't worry if you can't) x

Oh dear

Thank you for this information.

I have been told it’s a year before you get a phone call from Nantes. How disappointing, to be told surgery won’t help. So what do they recommend for you to do to help with the pain?

I have only had this pain since June 13th and have yet to convince my Urologist I have this condition and to refer me to a pain clinic in London .

Thank you for this information.

I have been told it’s a year before Nantes call you back.

If you don’t mind my asking, how much does a visit to Nantes cost?

I’m guessing it costs a substantial amount?

I’ve still got the uphill struggle of convincing my urologist I have this condition and to refer me to a pain clinic in London , which is the nearest to where I live.

I am finding it disheartening to hear of the years of pain and the struggle for everyone suffering from Pudendal neuralgia.

Pudendal neuralgia can also be because the myelin sheath that is surrounding the nerve and protecting it has worn away, and the nerve is exposed.

Mine is also being caused by overly tight pelvic floor muscles.

Have you considered seeing a pain specialist? This is a painful issue and you may need pain medication.

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