What do I say and where can I go for help ?

[PPSN_JudyB]

New webpage added with some assistance in preparing for consultations and a list of University hospital pelvic pain clinics in England and France for a start.

pelvicpain.org.uk/index.php...

Would be interested to hear what you think of the info

[helenlegs11 Volunteer]

Great Judy, this is exactly what everyone with a pelvic problem(s) needs, a (hopefully ever growing) list of clinicians who can help.

After all we know only too well how hard and time consuming pursuit of THE DIAGNOSIS can be, however, as your poll shows, it is they key to successful treatment which is all we are after essentially.

Maybe you should give names and contacts on the list so that people can make their own appointments/arrangements or you will be giving yourself an even greater work load supplying them individually when asked.

I know that many people, including yourself, suffer from multiple pelvic problems but for someone like me, where it is all nerve entrapment related I would be unsure, if starting out, who on that list could help me specifically.

As being referred or re-referred on the NHS can be tricky, more info on each teams particular expertise would be invaluable.

I wonder could there be a (linked) definitive pain scale somewhere too. I did read somewhere that some doctors would not take patients seriously if they described their pain as a 10, because it was the worst pain THEY had ever suffered. Of course a level of pain can be subjective so a 'pain guide' could help.

I had no idea that there was a pain clinic in Middlesbrough (good news)

A list of pelvic physio's would be good too, without endorsement of course. I have been to soooo many without much success (I would have to qualify that by saying once truly entrapped, as I seem to be, only surgery will help ultimately)

I would still recommend one of the physio's I went to as she had a good level of pelvic knowledge and plain common sense.

I had heard that Stephanie Predergast was visiting the UK in July for a seminar? ? (second hand info) but have heard nothing else since. It would be fantastic to find physio's here who had a similar knowledge especially for pelvic nerve entrapment.

The internet and forums like this are often a sufferers ONLY way to obtain this type of valuable information. I know that when I found pelvicpain.org.uk it was a 'eureka' moment which simply made me hungry for more information like this to help me and others with neurological, and other pelvic pain.

[PPSN_JudyB Pelvic Pain Support Netwo]

Hi Helen,

Thanks a lot for this feedback - it really helps. I wondered whether to add more detail and do intend to in time. The thing is that some of the pain centres have more interest/expertise in treating men than women and vice versa. Also there are other people who are not in such centres that are very good in a particular area of expertise but are not in a recognized "centre". I think accreditation amongst health professionals and centres is important because some have more facilities than others too. Patients don't know what can be done and where: we should learn more about this in the next few months and certainly by the pain summit in November.

A pain guide is a good idea - we have info about this on a different page of the website "talking about pelvic pain " - could you have a look at it and let me know if you think it is useful to add to the "resources" page please ?

Regarding physios : SP rejected coming to the UK: not sure why - didn't have a chance to ask in Istanbul. I suggested S Jarvis who I know is excellent and did the botox trial in CPP with T Vancaillie in Sydney. She contemplated doing it and wanted to do it with T Vancaillie which would have been excellent. However she decided it wasn't for her/them. Now someone else from the US is doing it in September. I've seen the programme and am not sure that it's going to be a balanced approach. Therefore I am wary about physios unless i know them personally. It seems to be soo.. individual.

The thing is people spend a huge amount of money on all this and we don't want to be suggesting people who are just in this to make money which seems to happen a lot in this field.

There will be more of this coming in due course !

[helenlegs11 Volunteer]

The pain scale is spot on and maybe should listed elsewhere as you say resources or as a separate link maybe, because it is so important for patient and doctor to have a the same references to pain.

Maybe you could put a disclaimer under any list of medics. The 'better' ones will always be talked about more on the forum. Although I HATE doctor wars :).

I just think if anyone is prepared to devote their working life to something that is so little know they deserve to be on a list. Then at least patients are aware of them and can make a more educated choice.

So many people miss the valuable information (including me) on sites and are drawn straight into the forum, because they have googled a phrase or symptom being discussed. It is worthwhile reminding everyone that there is a wealth of information contained in these pages.

Updates and as you say as 'There will be more to come in due course' will also keep interested people referencing back to those pages, on a more continual basis.

Are there any scholarly articles from recognised experts linked on there? to help patients with these less know conditions. OOOps better go and take a look :).

[PPSN_JudyB Pelvic Pain Support Netwo in reply to helenlegs11]

Yep, I'm sure most people who would find this useful either don't know it's there, haven't got time or can't be bothered to read it.

We're hoping to add a symptom tracker to this part of the site ( HealthUnlocked ) which will link with the resources and clinics page of the main site.

We have got our pudendal neuralgia diagnosis and management leaflet and the nerve blocks for chronic pelvic pain leaflet which are evidence based and reviewed by our medical advisory panel as well as patients - we should make it more obvious on the site. It was a lot of effort to develop them so we have to ask people to make a contribution to the charity for this. We need more time to do more of this on other subjects.

Judy

[Cincy in reply to PPSN_JudyB]

Please where can I locate the leaflets you describe here? When you have time could you tell how to find them? There is no obvious way to find this information from what I have tried on this site.

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Cincy]

You can e-mail the charity that moderates this message board: Pelvic Pain Support network , [e-mail]

[Raybellene]

Here is the information for the clinic I visited at University College Hospital. First for a consultation and diagnosis, then to the pain clinic:

uclh.nhs.uk/OurServices/Ser...

uclh.nhs.uk/OurServices/Ser...

uclh.nhs.uk/OurServices/Ser...

[PPSN_JudyB Pelvic Pain Support Netwo]

Thanks for the links above which are mainly urogynaecology. The page listing clinics around the country has been updated recently here: pelvicpain.org.uk/index.php...

[Cincy in reply to PPSN_JudyB]

Thank you. I have heard of a place in Arizona, but getting the most up to date information is important. I am dealing with doctors here that don't know me and don't understand the diagnosis. I am going for Pelvic pain PT. I will try to be patient but honestly I am not going to waste time with anyone who doesn't have the knowledge or experience. I have done that for yyeeaarrss and it has costs me more than I can add.

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Cincy]

Have you contacted St Joseph's in Phoenix ?

[Cincy in reply to PPSN_JudyB]

Hello Judy, Yes I did call and spoke to a nurse or medical assistant. I can schedule a Skype consult with Dr. Hibner which would cost 600 dollars. I am suppose to have some physical therapy from a PT who specializes in pelvic pain. Once I see her I will have a better idea if she can help. Doctors I have recently (urogynolcolgist and neurologist ) offer something for pain but I am more interested in getting to the bottom (pun not intended) of this. My referring physician prescribed gabapentin and I had a rare reaction to it, it caused incontinence! The neurologist want to get 2 MRI's and from what I can tell from reading online these tests do not necessarily lead to an accurate diagnosis but they do at least rule out some possible problems. As soon as these traditional route is finished - not trying anything else from all the options I see online - I will contact St. Joseph again and schedule a Skype appointment. I think all will be done in January. I saw there is some possible financial help from donations. If I go for surgery with Dr. Hipner I will be applying for help. Before I knew about the possibility of some donations I was already writing my "Go Fund Me" appeal. So for now I will do all things I have been doing to keep my life good and get through the next month the best I can. Hearing from you is truly a pleasure. I will update you when I have some news. If you do have ideas or other suggestions I am open. Sophia

[PPSN_JudyB Pelvic Pain Support Netwo]

It sounds as though you are doing the best you can in the situation. The PT might help and even though Gabapentin was unsuccessful, a low dose of Pregabalin could be worth trying. Have you tried Amitriptyline or Nortriptyline as these are usually the first line treatment ?

[Cincy]

Hello Judy,

I believe the medications you mention made my hands swell. I got carpal tunnel from taking Lyrica and was taken off of it. I had bi-lateral carpal tunnel surgery in 2014. The PNE throws off my posture do much my spine is beginning to curve and my right shoulder and arm are having nerve issues. My right hand carpel tunnel did not heal well just like my right knee surgery. The pelvic imbalance affects so much. My balance is pretty bad and I don't know how I am going to stop the problem from further disabling me. If I can determine if the hernia mesh is the problem or if it is scar tissue that may help me decide to pursue surgery or stay with PT.

The surgeon move the nerve which was the only way I knew I had a hernia but the surgery actually made the nerve hurt more (unbearable pain) the pelvic muscles have compensated and my pelvis is chronically tuned outward.

After doing the breathing exercises the PT has me doing the nerve pain increases dramatically. The muscle contortions allow me to get around but getting around is slowly going to destroy my hip. I am in good health otherwise and 60 years old. If I am going to get surgery I think I'd had better do it soon or I'll be too old to recover.

I am growing poorer every year. My retirement savings doesn't exist. Everything extra goes to help cleaning my house and to medical bills. I am socially isolated am not sure if I should give up and move to a low income retirement apartment or try to continue to work and get help. Having a hidden disability promotes misunderstanding and judgement. At least I now have a diagnosis so others can begin to understand rather than blame.

I have lived alone most of my adult life and can't imagine dating anyone with this condition and no solution in site. I am grateful I have made it this far without becoming more disabled by well meaning physicians.

I am afraid of surgery with dr hibner but would probably chance it if I had a shot at getting my pelvis back in balance. I should know more by spring.

Thank you and all on this site for giving us somewhere to be heard. I had so much potential just out of my reach because of a disabling condition no one understood or could even name. This should be and may be prevented in the future by this site and all those who contribute.

[elliem70]

stupid question but where do I find the pain score table

[Rossie21]

I notice on the list of Dermatologists Dr. Helen Lotery of Southampton Hospital is not listed she has a Vulval pain clinic ,has anyone any knowledge of her treatments.