Pudendal Neuralgia cure

[Fertleman69]

Has anyone had any relief from PN and any treatments that have improved the pain?

Has anyone been seen by the drs at Nantes

Thanks all

[Rubysid]

I've treated it through exercise. Uve healed completely from the symptoms of burning pain and abnormal sensations as well as spasming in the perineum.

[kalecolbe12 in reply to Rubysid]

Can I ask what kind of exercise? was it the DCT by David McCoid?or some other kind?

[Rubysid in reply to kalecolbe12]

Yes it was David McCoid dct programme. I've been doing 6 months now. Now I am painfree. I can even travel long distance without any symptoms flaring up. I've got my life back. I'm so grateful to dct.

[kalecolbe12 in reply to Rubysid]

I understand that it works for a lot of people but for some people it flares up symptoms so it's very confusing......are you male or female?I know the David McCoid system was created for men in the first place but I think some women are doing well with it too

[Rubysid in reply to kalecolbe12]

It can flare up up symptoms as you are making changes in your body. Gradually the flares reduce in frequency and then with continued exercising the pain reduces.

David advises you to hold your nerve through it. I followed the program to the letter. It is completely natural so I was happy that it wouldn't have any side affects. Also progress is not linear you flare up from time to time but as you perservere you begin to strengthen your muscles and loosen the restrictions. It's not a quick fix but it is permanent.

[kalecolbe12 in reply to Rubysid]

What do you mean by David advises you hold your nerve through it ?can you explain it to me a little more please? I may buy the program although I've been helped a lot by pelvic floor physical therapy and my own exercise program at home stretches and breathing but I'm really interested in the DCT program,but it's very scary when you've come as far as I have and you're making distinct progress to change anything however ...I just wish someone could give me an example of the exercises you do because I am on a restricted budget and I don't want to buy it unless I know for a fact that I'm capable at 65 years old to do it.. even though I'm very fit I do have some arthritic joints that I have to be careful of... I do know that it's resistance training but is it possible for you to give me an example of a couple of moves that they do?,if not no worries... Oh and by the way does it help pelvic floor dysfunction only or also pudendal neuralgia? thanks

[Rubysid in reply to kalecolbe12]

David from the outset says that progress is not linear at times it may feel like you are not making much progress or even going a little backwards but keep persevering and it will start to improve and be completely healed. That is the key difference for me.

I also had a lot of pt as well as stretching which reduced the pain and allowed me to continue with ny life. What I found with doing pt and regular stretches was that I was just about keeping myself out of pain but if I sat for any length of time, did long distance travel it would all come back and nothing was improving for any length of time. I was stuck and dependant on pt, massage, static stretching and other tools to function.

With dct the exercise routines are fairly easy to do, they're 30 mins each. Of the two routines one addresses the fascia the other addresses the muscles. I believe that my problem was in the fascia because I was tight all over. According to david and Nic the dct physio the problem is not necessarily with the pelvic floor but could be the surrounding muscles. The routines target local tension in the glutes, hips, hamstrings etc there is also exercises for your abs because the lower abs are also involved. So it is a comprehensive and targetted programme by people who are experts in the anatomy of muscles and the pelvic floor. The exercises use small movements that are very affective. The main thing is that I have just done a very long haul flight with no aids whatsoever, no massage balls / tens machines etc. I've been travelling and haven't been able to exercise for a week and still I've been painfree. So that is a result.

The programme is only around 250 usd for lifetime access. You get a lot of support and also join the Facebook forum where other sufferers can help you so you never feel alone.

I'm not being paid for this. I just want to help people who are stuck like aI was.

[AdeleS586 in reply to Rubysid]

I am 54 years old and female. I am symptom-free these days. I saw a pelvic floor physical therapist, and I'm doing a therapy using a therawand at home along with some other exercises She recommended.

I have never heard of pudendal neuralgia being cured. From my understanding, is something I will always deal with. That is disappointing, given that I am getting older and I probably won't be able to use the therawand as I get older.

I do wish there was a cure and then I could get back to my version of normal. I am much better than I used to be and I am so grateful, but I'm still Not where I was back in 2015 when I first started showing symptoms. . The biggest area that I noticed a difference is my sex life. I have a wonderful fiance , but cannot fully enjoy sex with him because I still don't have complete feeling.

Do you think this David McCoid's system could help a female?

[Rubysid in reply to AdeleS586]

David McCoid and Nic Bartolotta's system has been extended to include females because so many females were using it. I'm female and I have been helped. I would say cured. It is permenant. I've experienced huge positive changes since starting the programme. That's why I'm on here because seeing others in pain when I don't have to be pushes me to recommend what I know to be a cure.

[charmed3]

Hi there, I have had relief with Vaginal Suppitories (baclofen & lorazepam) they are specially made at a pharmacy compound. Also pelvic floor wall physical therapy and literally a strict diet eating 1500 calorie a day (eat healthy) no sugar at all. It’s done wonders for me!! Xo

[kalecolbe12 in reply to charmed3]

I have found pelvic floor physical therapy to help a lot also but you said pelvic floor wall physical therapy so do you mind telling me what they do? And can I ask why you're on a 1500 calorie diet?thanks

[kalecolbe12]

I have found a lot of help with pelvic floor physical therapy where she does pudendal nerve glides and mobilization to loosen up the muscles from the nerve it's all external work but a little invasive so you have to be prepared for that... Also cyclobenzaprine muscle relaxer and home stretches and breathing has been amazingly helpful ...so they think I have pelvic floor dysfunction with pudental nerve irritation so hence neuralgia... I've had it for a year and I've been going to pelvic floor physical therapy once a week for 7 months.... everyone is different and different treatments work for some and not others a lot of people are having the botox into the puborectalis muscle to relax that around the nerve ....people are on various medications gabapentin ,cymbalta ,Lyrica, ,amitriptyline ,cyclobenzaprine... Sometimes a couple of meds at once and I know some people are having cryoablation of the nerve and nerve blocks and various other treatments ...some people interstim or a TENS unit works....and some people get the actual decompression surgery which is the last resort which sometimes works sometimes doesn't so it's all a throw of the dice.... Best to start with the least invasive... pelvic floor physical therapy etc

[willemine]

Hi Fertleman 69 I had improvement by ptns treatment it was for my over active bladder but my PN pain went down to the half of it when i jused it ones a week. You can look the treatment ptns up its a small intervention with for me great impact

[Fertleman69]

Thanks for this advise are you in the UK can you recommend me a PT ?

[Hidden in reply to Fertleman69]

Haven't seen the Physio yet so not sure I can recommend. The appointment is next Wednesday. I live in Southport, Merseyside. Physio is South Wirral. Quite a distance to travel.

If you Google Pelvic Physio near me you will hopefully find someone. It's worth noting that some work is done internally so might influence your choice!

Know there's definitely someone in London came up when I looked.

Best of luck from Korin x

[Hidden]

Hello,

I'm going to see the team at Bristol who trained in Pudendal Neuralgia under team at Nantes. Appointment is on Thursday.

I have just spoken to a specialst pelvic physio who seems very switched on about the condition and thinks she should be able to help.

Best regards from Korin

[Fertleman69 in reply to Hidden]

Hi Korin

Are you being referred by your GP or is this a private appointment?

I’m desperate to see someone to help me

If it is by your GP who did you ask the referral to be made to

Thanks for helping me x

[Hidden in reply to Fertleman69]

Hi,

First contact at Bristol is Dr Greenslade. He works from the Nuffield hospital in Bristol.

You need to contact his secretary to make appointment first. Hospital will give you her number. As far as I know he only works privately now. Could be wrong. Think some treatments might be available on NHS but not sure.

Secretary not in every day so be persistent!

Don't need GP referral but good to get one together with copies of test results and summary of medical history. You can do all that while waiting for appointment day to arrive. Secretary will explain. It's so Dr Greenslade has all info before appointment.

First thing is definitely to make appointment. It's almost three weeks since I made mine.

Very best wishes

Korin

[Hidden]

Where are you in the UK? I see a PT in London. There's a list of women's health physiotherapist s online but I can't remember what it's called. You need specialist women's health or pelvic and even then need to check that they have experience helping people with PN as they don't all.

[Fertleman69 in reply to Hidden]

Any ideas of PTs in London ?

[Hidden in reply to Fertleman69]

I see Bernie at Bounceback in Chingford E4. Very knowledgeable about women's pelvic health issues and hands on. She's in private practice. If you would like more information about her and treatment I've had you can private message me.

[Fertleman69]

I have been advised to look at DCT

Do you know about this ? It’s special exercises for hypertonic pelvic floor

I’m so confused to be honest and don’t know what to do next

[Hidden]

I just read your latest post above. I also have hypertonic pelvic floor. I'd highly recommend the PT mentioned above for this. I understand your confusion. Different people seem to find different things useful. I found the books Healing Pelvic Pain by Amy Stein and A Headache in the Pelvis by Wise and Anderson helpful. Are you also in London?

[Fertleman69 in reply to Hidden]

Yes I’m in London but I’m not sure what to do next

[Hidden in reply to Fertleman69]

It might be worth having at least one appointment with the PT I see. She costs £80 per hour which is quite a lot of money but completely worth it I think. She would diagnose and treat, but most importantly recommend self help for you to do at home. She would also suggest who else might help if she thought it necessary. She is 100 per cent honest. She helped me a lot. Before I saw her I spent 2 years seeing various professionals, none of whom were helpful, and I think I may have been in a similar way to how you are feeling in not knowing where to get help and feeling anxious and frustrated as well as having the pain.

I've been told the PTs at st Mary's hospital are good. This is NHS. I think you may need to be referred to them via their gynecology department. Not sure about this. I'm going there next week for a gynecology appointment, I'll see if I can find out. I'd still recommend Bernie though as you'd wait for months for St Mary's appointment. Hope this helps.

[Fertleman69]

Ahh yes I have heard of headache in the pelvis I will get that Today

[kalecolbe12 in reply to Fertleman69]

You will find headache in the pelvis very helpful it's helped me a lot... also heal pelvic pain and pelvic pain explained are two other books. If you don't mind me asking what are your symptoms ?rectal ,penile ,scrotal or a mixture of all etc ??I'm a female in mine has been rectal so I'm thinking it's the inferior rectal nerve although I'm waiting to see a neurologist to get an mrn and see if the pudental nerve is trapped anywhere or if it's just irritated, but I've had it for about a year and I've gotten a lot better with pelvic floor physical therapy as well as muscle relaxers for 3 months and now only as needed as pain is 60% better ..some days no pain...now and again and some pressure but I can handle it and headache in the pelvis says it takes about 2 years.....and I've also looked into David mcoid's DCT which I may buy since it's only $250 for lifetime membership....there's so many treatments and so many things work and so many things don't ...it's a real coin toss....but pelvic floor physical therapy is a good place to start because they will assess and tell you what they think and they are so used to seeing every kind of pelvic floor dysfunction with men and women that in my mind are the best people to go to as a first step anyway

[Hidden in reply to Fertleman69]

What part of London are you in?

[Fertleman69 in reply to Hidden]

I live near WATFORD Hertfordshire

[Hidden in reply to Fertleman69]

Not that far from me. I'm in Chingford, which is on the edge of North East London, near Essex border

[Benhur1 in reply to Hidden]

I live in Luton not far from Chingford, I'm male with rectal and penile pain issues.

Have tried Bernie at Bounce Back and knowledgable about PN.

My pain only start last week but calling my GP tomorrow, but I do suffer from other nerve related conditions

I could really do with all the help in reducing PN pain.

I self diagnosed my PN condition from internet.

[Fertleman69]

Hi I’m a female and I live in London but will travel anywhere for a PT that knows about PN

[Konagirl60]

I had entrapment. My right pudendal nerve and my right inferior rectal nerve was stuck to fascia and being pinched my ischial spine ligaments every time I sat down.

After PT, it became so bad that I couldn’t lie down either.

No medicine helped and only three of seven nerve blocks ( four were not done properly) helped.

I had decompression surgery. 20/10 life threatening intractable pain is now 7/10 pain.

I am medicated but sleeping isnt great. Driving causes flares as does too much lifting, bending over, and climbing uphill.

I’m trying to use mindfulness at bedtime and in the morning. So far, it’s relaxing but with movement I flare up. I still lie in bed frequently,

[AuntieH in reply to Konagirl60]

You have been through alot. I really admire your tenacity. May I ask how old you are? I am 65 yo female.

[Konagirl60 in reply to AuntieH]

I’m 62.

What happened to me should be criminal. Doctors almost got away with murder.

[AuntieH in reply to Konagirl60]

Yes, sure sounds like it! Are you still in Canada, I think I read that somewhere along the way? I live in Wisconsin. As of today we've had 5 deaths due to the corona virus. Is it affecting people where you live too?

[Konagirl60 in reply to AuntieH]

No

[AuntieH in reply to Konagirl60]

That's good.

[Konagirl60 in reply to AuntieH]

It is now. We’ve had 8 deaths in my city but over 25 in nursing homes. So so sad.

[Whangareinik]

Only relief in four year is a drug called Pregabolin 100mg morning 100mg in evening. No lifting pulling stretching, stress all triggers for me. Wonder drug I can live now still have the odd off day but who doesn’t? Bare in mind I have had many nerve blocks investigative treatment etc heaps of different meds, which I couldn’t tolerate...Please look into it, there is life after Pudendal Damage

[Daniella4]

I live in Hertfordshire too, perhaps we could meet up and exchange ideas too. I have pudendal neuralgia and its so deliberating the pain has completely ruined my life. private message if you want to talk. Daniella4

[Fertleman69]

Hi Daniella4 yes would love to chat can you PM me