New here! Pudendal neuralgia sufferer

[Jessthecatlady]

Hello all,

I've signed up here and am writing this on behalf of my mother who is 67 years old and is suffering from Pudendal neuralgia.

The condition started 8 months ago and she has gone from a full time business owner and worker with an extremely active social life to lying in bed all day long in a great deal of pain. Her mental health has also suffered immensely and it has not only affected her, but consumed the entire family and we are desperate for some help.

It was mentioned in a book that a place in Nantes, France exists who specialise in this type of pain but we have been unable to find any real information about who to contact in order to book a consultation/treatment bar a few dead links and unworking email addresses and if anyone here could help in that department then I would be most grateful.

We really are in dire need here. My mother can no longer drive, walk and even lying down is aggravating the pain and the cocktail of antidepressants and painkillers that the doctors have her on do not seem to be doing much past dulling the pain slightly for an hour or two so we are currently exploring every single possibility.

Thank you all,

Alan

[Pippins2]

Hi sorry about your mother.Have you looked on pudendalhope.org ? On that site on the left hand column there is an option of doctors ,I followed the link ,pressed Europe,then France and it came up with 3 doctors based in Nantes .It included info and postal address,phone numbers ,email etc.Hope that helps

[Hidden]

Look on the pudendal hope website to begin with, it has a wealth of information. If you are uk based there are 3 Drs who specialise in pidendal neuralgia, in Manchester, Bristol and London. I saw Dr Greenslade in Bristol who was very helpful for me. The pudendal hope website has contact details for uk and European doctors. Hope this helps. Take care.

[costagran]

i am also new to this site and just finding my way around it.

I am 67.

I have this pain in my left pelvis and despite all the gynno and digestive tests , theres been no diagnosis.

the gynnos say it cant be my fibroids cos they're calcified.

I have several theories but I am grasping at straws like your mother.

my digestion has been hit badly and after my evening meal i.m usually doubled up.

I also had 3 years of diarrhea.no that's not true. it was 1 bm per day very runny.

I've recently started taking vitamin b complex and its stopped the loose motions.

I've also started taking hot water with apple cider vinegar before evening meals. that's helped.

as for the pelvic pain, I still have it but not to the extent as before.

like you I am on a 'try anything' process.

let me know if you come up with anything and I will also let you know if any news.

[Jessthecatlady]

Thank you all for the replys, I showed my mother and I think just knowing that she is not alone in this horrible condition helps slightly.

I will check out the website for sure, on a glance it seems to be a great resource and although we are far (far FAR) from a rich family, money no longer seems to be a factor as long as this pain can be helped. We are honestly thinking about selling the family home to cover costs so we just want to make sure that we find something that is effective.

Thanks again everyone for your wonderful help, everything like this is a step in the right direction and I'll be sure to come back and post any breakthroughs if we encounter them.

[Hidden]

She is definitely not alone. Ask any questions you want, someone will more than likely know the answer. My journey with this condition has already taken two years, but I have a little bit of hope. Unfortunately it has cost me to go privately though, NHS not good at this kind of thing. Whereabouts are you based?

[Hidden]

Who diagnosed your mother with PN? Why did they not signpost her to access treatment either in the UK or in France.

[Jeremy1969]

Hi, I am sorry to hear about your mother - pelvic pain is the pits. Although I do not have pudendal issues I do have pelvic pain, and as I have just started this process to diagnosis, I might be able to offer some advice.

In the first instance your mother needs to get an accurate diagnosis. She can either do this in the UK with Dr Baranowski or in Bristol with Dr Greenslade. I've heard people talk of a Dr in Manchester but I do not know his name.

Although experts in pelvic pain exist here in the UK, many people opt to go to Nantes in France to see Dr Roberts or a member of his team as they are the supposed world leaders in this field. Apparently, Drs from all over the world come to learn about pelvic pain from him.

As I have trouble sitting/travelling far, I chose to see Dr Baranowski who is by all accounts the leading UK pelvic pain specialist. On the NHS you will wait a year to see one of Dr B's minions, but privately you can see him within a week (he works privately on a Tuesday).

On my first consult he took a thorough history and did the necessary examination and sent me for an MRN, which is like an MRI, but is said to be able to visualise nerves. The use of MRN is contentious, but since it gives all the info an MRI does and was covered by my insurance, I opted to have it anyway.

As Dr B suspected, the MRN showed nothing relevant, but at my follow up appointment he suggested a diagnostic block which I have scheduled in a few week's time. The idea with the block is that you inject the offending nerve near its root with local anaesthetic and if the pain reduces you have your diagnosis.

The key difference here between Dr B and the team in Nantes is the use of steroid. Dr B likes to use it and the team in Nantes do not. The use of steroid is contentious and has the potential to cause more trouble. Dr B also likes to do the injection using awake sedation whereas the team in Nantes prefer not to in order that you have your full senses about you.

Interestingly, In order to accommodate my preference, Dr B has agreed to forgo the steroid and not use sedation. In this respect he seems very accommodating. His bedside manner may not be for everyone, but I found him approachable and he responds to emails immediately.

As far as costs go, although I am covered privately, I know that the 2 root nerve blocks (S2/S3 if that means anything to you) I am having will cost £500 as Dr B gave me a the costs to give my insurance. The info sheet he gave me said it is likely that there will be other hospital costs on top of that. I do not know the costs of a consultation as it was covered by my insurance, but I imagine it would be around the £200 mark.

Should you wish to find out more about Dr Robert and his team in France, you should email [e-mail]. When I did I was told that if I went to France, Dr Labat is the first person to see in the team (he does the history and examination) then Dr Riant (pain specialist) or his colleague who does nerve blocks. The cost is 300 Euros for the consult with Dr Labat and about the same for a nerve block. If you would like to see them, Judy, who runs the PPSN can request appointments with them for you, although this is likely to be not until May/June.

One final thing to mention is that Dr B is very anti elective surgery for pelvic pain issues, whereas the team in Nantes does actually perform them. Dr B told me surgery was successful in a third of cases, of no help in another third and disastrous for the final third. If you look at the pudendalhope website you can see there has been lot of discussion about this recently and it is very off putting. I only include it here as I think it is important to know all sides as the debate: pudendalhope.info/forum/vie...

There is also a facebook group called pudendal neuralgia hope which might also be useful although my wife tells me too much information starts to be counter productive

I hope this has been of help. Good luck to you and your mother.

Jeremy

[Pepper1977]

Look up the Pudendal Hope closed Facebook group and the hope has a website to help people find help. She needs to see a pelvic floor physical therapist and get on some compounded vaginal suppositories that have valium lidocaine and gabapentin these will help the nerves. I had full blown 8 months ago and its calmed down.

[Hidden]

Very interesting pepper1977. I have got an appt on 17th April with pelvic floor physio (been on waiting list for 8 months!!!) NHS. I think the pudendal specialist in Manchester is called Dr Winston Mello but i can't remember which hospital he is based. He is a pain specialist/anaesthetist.

[Catmama776]

Hi love. Has your mother had a nerve block? I started getting them done 6 years ago. I was in the same shape as your mom. It’s a combination of Botox and Lidocaine and it’s injected right into the pudendal nerve. They use a ct scan to ensure they inject the nerve. When I started I was having to get them every 3-4 months. I am now a year between shots. They have been a life saver for me. I am a single mom with 2 kids so I know the havoc this pain wrecks on a family.

[AuntieH in reply to Catmama776]

Where do you get your injections?

[Catsalas in reply to Catmama776]

Hi how are you feeling after your nerve blocks . I have PN and thinking to get the nerve blocks , not sure if will work ... after read all the bad reviews . You are the only one that says that helps you ..

[Ailiesonkerr in reply to Catmama776]

Hi I wondered did you get your nerve blocks done by a local doctor or did you have to travel elsewhere?

[AdeleS586]

I've been living with Pudendal Neuralgia for over 5 years. Can't say enough good things about pelvic floor PT.