How do I get an appointment for a Consultation in Nantes

[Humming]

Hi, Please could anyone help. I would like to know how to arrange a consultation with the Drs in Nantes for Pudendal Neuralgia. I would like a second opinion whether I have irritation of the pudendal nerve or entrapment. I was diagnosed in Jan 2019 with irritation of the pudendal nerve and have been doing the recommended stretching religiously everyday since Jan 2019. I also started internal trigger point release this year but this has been interrupted because of COVID. I have had three nerve blocks ( one in the alcoves Canal) and pulsated frequency neuromodulation from which I have had no benefit. Slowly things have been getting worse from when I first got symptoms in Oct 2018. I thought with an early diagnosis I would have a reasonable chance of recovery but that seems to be getting further and further away. Anyway I digress.

Any help regarding getting an appointment at Nantes would be much appreciated.

I'm male and live in Kent in the UK.

Thanks

[lucyp]

There used to be a lady called Judy from the uk who arranged this. I don,t know if the administrator has her details.

Lucy

[Skye22]

Good luck getting an appointment my treatments including trigger point therapy and botox injections have been cancelled since early March due to covid.

I was doing really well with my regular treatments noticing great benefits in reductions of pain and frequency of flare ups.

I think in general across the country there are many individuals who have been left in limbo with cancelled appointments and I am desperate to get back to some kind of normality. I am feeling very much abandoned and struggling to cope with pain.

Mabe in nantes they have different systems in place but giving the restrictions on travel it might be difficult. Hope you are able to arrange to appointment and wish you good health.

[Alaine1 Administrator]

Hi Humming,

Yes Judy has arranged these appts and is our CEO at the Pelvic Pain Support Network. When Judy mentioned this to me earlier this year the waiting times were 12 months from referral to being seen in the clinic. This might be longer now we have had the worldwide Coronavirus pandemic but will check with her today via email and hopefully she will get back to me over the weekend.

Pain is very individual and unfortunately even getting an earlier diagnosis doesn’t always guarantee quick results or even a reduction in pain which is a major source of frustration for both the person affected and also the healthcare professional. Even with treatment there is still no guarantee the pain will completely disappear but often the pain becomes more manageable. This is seen in all types of pain in different areas of the body. Many of us with pelvic pain (myself included) know this through personal experience. I also know this from having broken my ankle 4 years ago and to this day still get pain in this ankle despite the injury completely healing up.

Have you been able to restart the physiotherapy again or are appts still on hold? Was any underlying reason found such as previous surgery within the pelvis? I saw a women’s health physio via the NHS and found that the treatment and level of expertise was far below that of a private women’s health physiotherapist. It’s something that still baffles me seeing that women of all ages will be referred to them at some point in their lives and increasing numbers of men are also being seen for men’s physiotherapy. I think part of the reason is likely to be that private physio/clinics place a strong emphasis on ongoing training/attendance at workshops etc whereas the NHS might pay for one of the team to attend and then teach the others with varying degrees of success. Fortunately my experience of NHS physio with the broken ankle was more positive and they are highly regarded professionals in the NHS and myself.

Have you found anything else that helps? Such as sitting in a warm bath or jacuzzi? Have you been offered any pain relief either in tablet form or suppositories? When managing pain it’s often a combination of treatment treatments that provide the most benefit. I have 3 medical conditions causing pelvic pain and also suffered with pelvic floor dysfunction on top. For me it was a combination of treatments that helped. So I had surgery for the endometriosis, Zoladex long term for the adenomyosis and helping keep the endometriosis suppressed, other off licence treatment for refractory interstitial cystitis/painful bladder syndrome. On top of this and to help with the pelvic floor dysfunction I did a year of women’s health physio which included internal trigger point release, breathing, acupuncture and working on my core which had been affected by the pelvic pain and was one of the factors involved in my back pain. I did do other treatments including dietary with a dietitian (privately) as I was underweight and wanted to work on some of the other symptoms I was having from the pelvic pain including constant nausea. This was on top of the pain medications. I hope some of this helps but feel free to ask me any questions

[Alaine1 Administrator]

Hi Humming,

I emailed Judy first thing this morning and she’s gotten back to me. They are seeing patients in person and via teleconsultation ( the latter is 100 Euros ) we have managed to get teleconsultations for a couple of UK patients recently and they will be going over as soon as it can be arranged.

From making contact it will be a few months before a TC or face to face appointment can be arranged. Not quite as long as has been previously. I hope this is some good news for you. Let me know if I can help any further.

[Humming in reply to Alaine1]

Hi Alaine

Thanks very much. I would like a teleconsultation initially. Do they speak good English as my French is non existent? Can Judy arrange this for me? I know they have some tests which measure blood flow around the pudendal nerve which may suggest whether it is true entrapment or not. As mentioned l was diagnosed with irritation of the pudendal nerve but I would like a second opinion just so that I can make sure I am doing everything I can. If I go over to France and they rule out true entrapment at least I know for sure. If it is true entrapment I would need to consider my options. I have been doing physio (stretching) since Jan 2019 and am currently doing internal physio (trigger point release) so I will continue although I haven't noticed any benefits yet. I do meet the Nantes criteria. Obviously an operation is the last resort but I have heard that the longer it is left the less likely a successful outcome.

Thanks for your advice. Re pain - I can now only sit for 10-20mins although my pain levels are 5-6 out of 10 in my worst flare up. I have pain everyday and it is becoming more and more continuous both sitting and standing. I measure this against when I broke to tip of my finger at Christmas. My finger got shut in a door and that was 10out of 10. However it is completely healed with no pain now. Sometimes I get pain in my toe which I broke in two places on the joints over 20years ago in my early thirties however that is nothing to what I am getting now with this condition. Most days my pain is around 2-3 although I might be underestimating it . I will get deep internal pain in the perenium or privates or external burning pain in the perenium where the legs join and deep pain at the top LHS leg. I also get pulsating like mild electric shocks in my privates when sitting to long. More recently I have additional pain in my lower spine where I have a bit of very early onset arthritis. Sometimes it is pot luck what I will get when I wake up. There seems to be no rhyme or reason for it no matter how careful I am. The worse bit for me is not being able to travel ,exercise and play with my 7 year old daughter like I did. Fortunately I still work as I I have a stand up desk. I'm not taking any medication yet except for PEA although sometimes I wish I was. I do find that a hot water bottle can ease things. Anyway I'm rambling.

If a teleconsultation could be arranged that would be great.

[Alaine1 Administrator in reply to Humming]

I will link back in with Judy and see what she suggests. She knows the team better than I do so will know if they are currently taking referrals or if they’ve asked for a hold of a few months.

I believe the team does speak English but I will check with Judy how fluent they are. Saying that they’ve seen plenty of people from the UK so it’s very doable. I hope this helps.

[Humming in reply to Alaine1]

Thanks Alaine

[Humming in reply to Alaine1]

Hi Alaine

I hope you are managing. I just wanted to check whether you have been in contact with Judy regarding trying to get me a tele appointment with Nantes Drs. I know you must be very busy and your time is very much appreciated. Hopefully you can give me an update. Kind regards Humming

[Alaine1 Administrator in reply to Humming]

Hi Humming,

Good to hear from you. Previously I decided not to ask her as no referrals of any type were being accepted at the time. This week I’m going to ask her if referrals for the service have restarted again. I’m not overly hopeful as the number of COVID cases in France is higher than ours, but hopefully they might have decided like the NHS that other illnesses can’t face long delays in treatment or referrals.

Hopefully she might be able to give me an answer right away as I know she knows the team there well or she might need to contact them to ask. I hope this helps.

[Humming in reply to Alaine1]

Thanks please keep me updated.

[Hidden]

Have you tried Pudendal org for contact details? Professor Possover in Switzerland also does it. Will give an opinion with completed questionnaire. His clinic is open. You can even phone them.

Also, did you try the team in Bristol? Dr Greenslade is first port of call although I didn't find him that good.

[Humming in reply to Hidden]

Thanks. Have you seen Dr Possover? How did you find him?

[Hidden]

Haven't seen him myself but in touch with someone who had major surgery with him for pelvic pudendal nerve damage. She's very pleased.