I have suffered with pudendal pain almost around 10 months now. Can anyone reccomend a physio around London area?

[bunny82]

I would like to use NHS rout for that but if you have also some private therapist I would also welcome any contacts. What costs I would have to look at?

My pain has been progressing recently very quickly and I simply cannot sit at work. Hard to make such huge changes to work part time or even quit job. I guess we all have to make sacrifices. If you have any advices I would really appreciate. I have some advices about using ice and some other meds now.

I am in beginning of my a treatment. For now just on meds but still need a proper diagnosis and a specialist care. I am hoping to get to dr Baranowski with nhs too. Do you know how much does he charge privately? And what is the waiting time?

Please help guys

[PPSN_JudyB Pelvic Pain Support Netwo]

Just wondering whether you could get a desk that you can stand at ? have you asked occupational health at work ?

I think the NHS wait is long, possible longer than 9 months but others on here will know. Private appointments are around £250 I think, but you can probably contact the secretary to check.

I hope others on here can help with physios. What meds and doses are you taking ?

[MLDonna in reply to PPSN_JudyB]

St George's used to have a good women's health physiotherapist, are you near there, gp should be able to refer you and if affecting your work should be prioritised - good luck

[bunny82]

Hi Judy,

Thank you for your reply and advices. I was thinking about desk I could stand at, but I have also some trouble standing for long. From sitting in strange positions (I do it unconsciously to relief pain) and a lot of standing I have developed a lot of pain in my lower back and hips. I work in quite small private company where it's a lot of pressure, so I get also stressed out of not being fired as for causing "to much trouble".

I am slowly trying to get some help as just quite recently my doctor realised that my pain might be PN - I am on Amitryptyline 10mg now. I think my GP will prescribe me some higher dosage this week.

I am also thinking if necessary to go to Nantes as I have read many good opinions about their way of treating patients as I.

Unfortunately I have also read so many sad stories here, and people not being able to get better, and I am also worried about my future. I have very often bad moods and I find it hard to cope with constant pain.

For now I have plan - try to get to dr Baranowski, than if necessary go to Nantes. Do you have any suggestion - should I go see physiotherapist after I get diagnosis from Dr Baranowski or try to do it in the meantime?

Thank you again,

Take care

[AvidRae]

Hiya

i've been looking into this recently. have a look at pelvicphysiotherapy.com . its a site run by Maeve Whelan, a specialist in pelvic physiotherapy; she has written papers and books on manual therapy of the pelvic floor. on the site is a directory of practitioners throughout the uk and Ireland.

good luck x

[AvidRae]

PS they are chartered physiotherapists - which means they are members of the Chartered Society of Physiotherapists and registered with the Health and Care Professions Council

[edythe]

I suggest you get hold of the book Heal Pelvic Pain by Amy Stein (you can get it from Amazon). I went to Maria Elliot at the New Medecine Group 144 Harley Street (simplywomenshealth.co.uk/in... and she gave excellent allround help as well as triggerpoint release. This was private - £130 for the first 60-minute consultation; cheaper after that. You should be able to get an appointment reasonably quickly.Hope this helps.

Edythe

[bunny82 in reply to edythe]

Hi Edythe,

Thank you for your advice. I have actually found her details somewhere, but I wasn't sure if someone can recommend that. Do I need to have a diagnosis first to go there? Can you also tell how many of these appointments did you need? Did you also get some set of exercises to do at home by yourself?

Take care

[edythe in reply to bunny82]

Hi there,

You don't need a diagnosis to go to simply women's health. When you make an appointment you are asked at some point to provide information about what help you are hoping to get.

For me this was just a one-off appointment when I was on holiday in London as I don't live in the UK and in Germany there are very few pt who are specialised in pelvic pain.

After the first assessment Maria would be able to give you some idea of how many sessions you needed or maybe where else you could go. She showed me what exercises I could do at home and checked I was doing them correctly. The book I mentioned also provides very well-explained exercises.

All the best

[bunny82 in reply to edythe]

Hi Edythe,

Thanks for that, that's really helpful. I hope that even though you had just one session it helped you a bit.

Take care

[Tooto]

I can recommend Maria Elliot without any hesitation. After ages of searching for help in Sweden I went to her in London and she changed my life. Sounds a bit dramatic perhaps and I still have some pain, but less, and above all she gave me my hope back, which I had lost not finding doctors or a PT in Sweden that understand, or even acknowledge, pain in that area. She was very empathetic and it was obvious she knew what she was talking about and the treatment had effect immediately. If you live in the London area, you should definitely go to see her. I wish I could be there for a treatment that was longer than two sessions... She also has a colleague, Helen Keeble - they used to work in the same clinic but maybe not now (I think they still work together somehow) - who works at White Hart Clinic in Barnes (SW 13, whitehartclinic.co.uk/) who also has a good reputation when it comes to treating women's pelvic issues. Treatment at the White Hart Clinic is generally cheaper and has nothing to do with competence. I saw Maria Elliot when she was still working at WHC and it was much cheaper there than in her city clinic.

Best of luck Bunny! If you find what you are looking for, please spread the word. The more information/choices we get on good treatment, the better!

[bunny82 in reply to Tooto]

Hi there Tooto,

Thanks a lot for your reply. I really appreciate every single one, as no on is able to give me that kind of information as I get from this and Hope forums. You and Edythe mentioning Maria Elliot have given me a bit of hope. I will try to find out about the cost at both clinics and make my choice as I wait for reply from Dr Baranowski. I still don't know if I will be able to see him on NHS basis but fingers crossed. I wish to start physio as soon as I can.

Do you mind me asking what is that is causing your pain? Is it also PN?

How do you deal with your condition over in Sweden? Have you tried anything else that have helped you so far?

Best wishes,

[Tooto]

Hi Bunny,

I'm glad we can help. Finding a doctor was my main goal until I went to Maria Elliot. Her knowledge and suggestions has made me feel that I can tackle this myself for now. If I get any worse I will reconsider though. Yes, I also have pain in my pudendus nerve. It comes and goes (comes mostly...), and I have found it to be related to the "health" of my piriformis muscle and to my hormone levels (all this started when I became "menopausal"). I've tried all sorts of help in Sweden, but no specialists are interested. Gynecologists seem to think it is a "pain doctor issue" and pain doctors say it is a gynecologist issue. I've totally lost faith in the Swedish medical profession after this. So I have given up trying to get help from doctors.

Nevertheless, I have a brilliant Feldenkrais PT. She has not focused particularly on pelvic pain, but knows a lot in a general sort of way. She - and Feldenkrais thinking - has helped my a lot. Feldenkrais is a bit like "anti-gymnastics". Instead of straining and stretching muscles you learn to relax them. But it is not a quick fix. You have to teach your body new ways to move, sit, use muscles and relax muscles. I had been doing it for a few years prior to PN-problems so I could just return to the knowledge "my body" already had. I guess some types of yoga - not the stretching ones - can do the same job.

I've been in contact with other PN-sufferers from other parts of Sweden. It seems we still live in medieval times over here, as long as it comes to pelvic pain. So I'm becoming a long distance commuter, both for PN-support and gyneacological matters...;). It's going to eat all our future holiday savings, but health is more important.

I'll keep fingers crossed that you find help soon, either through the doctor or through Maria. I'm pretty sure you well feel better after seeing Maria so if you can afford it, hurry up to see her! Let us know!

[bunny82 in reply to Tooto]

Hi Tooto,

I have new hope and a bit of energy to fight for my health thanks to your post. Do you see some improvement through PT?

I have arranged an appointment with Maria and hope that this will be helpful. I also bought a book that Edythe recommended to me. It's called Heal Pelvic Pain by Amy Stein. I have done the exercises for 2 days now and will continue for at least a couple of months to see if they help. I really hope that I can find some relief and improvement without nerve blocks.

I will have to look into some chairs because the one I have in the office is really bad... Can you recommend something?

I will let know how when I am back from the consultation.

Thanks a lot for advices. It's all so helpful.

[icrelief]

Hi! Just wanted to let you know that Maria Elliott is fabulous, I've seen her myself. Amy's book is excellent, I met her at an abdominal and pelvic pain conference recently, she's an expert in the field. May I also suggest Dr. Claudine Domoney, in Wimbledon, she's a uro-gynecologist. She often uses trigger point injections that can be very helpful; they sound worse than they actually feel. Good luck! You've gotten great advice from the other members.

[Raybellene]

Hi - so glad to find this list of medics and specialists. I'm at the very start of my diagnosis. So far I have been discharged from gynaecologist as he says it's a nerve thing, the neurologist in Croyden had a god awful bedside manner, but said he was going to track down a specialist in London after referring me for an MRI. I am taking nortriptaline for pain - only medium success. All this has led me to try and find some immediate help, I had a positive appointment and some relief with a women's health physio at the National Sports Centre: Sarah Cross Physiotherapist

e-mail:[e-mail]

web:cpsic.co.uk

She taught me some pressure release points (is that what they are called?) she thinks I have an overly tight pelvic floor. Exercises offering some relief and feel much more in control and given me some hope that I can do something to help myself.

I seem to have classic Pudendal Neuraligia symptoms, no pain when I get up - made worse by sitting. I have quite good relief using a valley cushion. I'm sure this is too much info for one post, so will try and find other threads!!