Please! I am going down to Nante for the first time in two weeks. I am going down alone and have no idea what to expect?

[Emmax]

If anyone can give me a rundown on their time in Nante and their time with the specialists and dare I say it the nerve block which I gather is unsedated? I just want to be prepared mentally. Also I have my notes and would hate to be unprepared, do I take anything else? Are the specialists appointments lengthily? I have an appointment on Wednesday, the block on Thursday, another appointment on Friday, then I fly home late afternoon.

[PPSN_JudyB Pelvic Pain Support Netwo]

The initial appointment is quite lengthy. It's useful to have your e-mail address, postal address and date of birth written on a piece of paper ready to give the doctor.

The nerve block appointment is about the same length of time and you'll be asked to assess your pain after the block while sitting.

Have you got the questionnaire for the pain specialist ? if not please e-mail me for it.

The Friday appointment is with the team when you discuss jointly their findings with you. You may be examined again at this appointment.

[Emmax in reply to PPSN_JudyB]

Thank you so much Judy.

Could you please email the questionnaire again just in case.

How and when do I pay for the consolations, procedure, credit card?

I assume I can eat and drink before the procedure?

Do they not sedate at all?

I have copied my huge medical file for the doctors.

Other than my medication, is there anything else that would be useful to take?

Sorry about all the questions, I like to be organised!

This website and your support is so wonderful.

Were you by any chance in Amsterdam in the weekend for the convention that my physiotherapist Helen Keeble was attending. I am looking forward to hearing her feedback.

Kind regards,

Emma

[FKSW in reply to Emmax]

Hi Emma,

I went to France for the initial appointment two years ago. The nerve block is unsedated, but this is very good, because it helps the doctor doing the nerve block locate the nerve before doing the injection and therefore it's more accurate I think. I'd had four nerve blocks under sedation in London and they did not have such a strong effect as the one in Nantes. It's not majorly painful or scary, the doctors are really really nice, and the nerve block is over in a matter of minutes. Also, the great thing is, you just get up off the CT scanner and walk out and then can spend the rest of the day feeling normal and well (and if the block works - pain free for an afternoon!), rather than sick and drowsy from the anaesthetic!

Kind regards

Fiona

[Emmax in reply to FKSW]

Thank you for sharing that.

I have not had a night away from my children ever except when I have been in hospital. I won't know what to do with myself for three days!

I think sleeping will play a big part. The pain really saps me.

I do try and walk everyday to try and keep some normality in my day.

Take care, Emma

[jacquieb Volunteer]

Hi emma, trying to send you an email, I c an go into more detail what to expect in France, not for the faint-hearted by interesting non the less. [e-mail]

[PPSN_JudyB Pelvic Pain Support Netwo]

Hi Emma,

Will e-mail the questionnaire again. Yes, you can eat and drink what you like before and after. You need to take cash unless things have changed. It's very useful to have reports of procedures you've had, surgeries, investigations etc. Fiona is correct what she says about sedation.

Yes I was at the congress in Amsterdam, I did a presentation in the main hall with Francoise Watel from a French patient Association about the "Role of patients organizations from local to worldwide". There are lots of video clips, tweets and photos of what we did and our input into the congress. Several people from all over the world spoke to me there but I don't recall meeting Helen. Maybe she heard our presentation if she was there on Saturday morning. We also organized a multidisciplinary workshop for clinicians,researchers and patient reps on research gaps and priorities as part of the congress. A book of the event will be published by IASP in the autumn and I have been asked to write a chapter. The next 2 congresses will be in France. ( 2014 and 2015 )

[Emmax in reply to PPSN_JudyB]

Thank you so much Judy, I am fine if I know what to expect. I have lost a lot of confidence going out let alone to a different country.

My pain has been dreadful the last few weeks. It is the one time I hope I am bad down there as I have the odd day with low pain and don't know how that would work.

So good about the congress that people are listening and sharing information. Thank you for all you do to support and share.

[catfish in reply to Emmax]

Hi Emma , sorry this is a late reply but please feel free to in box me too if you want to get any info regarding the pre operative nerve blocks or surgery. I like Fiona had bilateral decompression last year (Fiona was a great help t me as was judy). My pain has reduced from what it was but still hoping for further improvements. im happy to chat & give you my phone number if you prefer it. Good luck & dont be afraid x Caty

[Emmax in reply to catfish]

Thank you Caty,

I feel so much better just getting the information from everybody today.

Emma x

[wall]

Good Luck to you..

I am not familier with this treatment but will follow your progress ..Margaret xx

[Steffie]

Before going anywhere for a very serious surgery I would get tested for Lyme Disease by IgeneX Labs in California by Western Blot. Pay the $1000 for a thorough testing by them. It's worth it. Few people are aware that severe pain anywhere in the pelvis can be related to the Lyme Disease infection (Borellia Burdorferi). After years of consults with the best surgeons and gyny and pain specialists in Canada, the U.S.A, France and Switzerland, I was finally diagnosed with Lyme and now that I've started treatment for Lyme Disease I am finally experiencing some relief from the crucifiying pain that I had in my pelvis for 18 years.

[jacquieb Volunteer]

Hi Emma, can't get thru with my e-mails so thought I would respond here with regard to your visit to Nantes. First of all you will be fine. Not sure where you are staying but look for somewhere near to the hospital. OK your first visit will be like a consultation, you will have to pay for the fees before seeing the Dr. I paid in euros. I saw Mr Riant/Prof/Dr, anyway it was a very lengthy consultation. his English was poor, but he had a couple of students with him who could speak English so it took quite a long time, back and forth. At the end of the consultation, probably took two hours, he will examine you and try to find out what hurts and doesn't. I remember going ouch on many occasions. Its very open, in as much as there wasn't a curtain but it seemed the norm for them. Mr R, was very pleasant.

The following day I saw Mr. B which was in a different hospital, you will need to get trams to and from this hospital, the first you can walk to. I found him OK, more rushed I would say, but had to fill in a chart to say where my pain was coming from. The following day I joined the queque and saw Mr B again to have the lidocaine infusion, bit like a nerve block injection, sorry to be vague, not sedated but didn't hurt,,I will have to look at my notes, but their policy is different from ours over here in the U,K ,in as much as they insert lidocaine only rather than lidocaine and steroid. this makes sense to me. The next 10 minutes I had to wait to see if the area that is driving me nuts has been deadened, if not then I was told it was not the pudendal nerve. I didn't go numb so in their eyes I didn't have pudenal neuraglia but something more complex. There are plenty of shops so you won't get bored and the time will go very quickly for you. So don't worry. Emma call me if you want me to go into more detail or find all the info you need. You will need a map, but everyone knows where the hospitals are so you should be ok. Its so annoying not being able to talk to you as there is so much more that I can tell you about what's happened over the past nine years. I think I gave you my telephone number, just give me a call and I can tell you more about Tarlov cysts.

[Emmax in reply to jacquieb]

Thanks J, this is really helpful.

I am hoping that I will be well enough to have a nice wander and I am very fond of shopping so that is good news too.

You have prompted me to get a map. That will be reassuring to get my head around where everything is.

Back to feeding time!

Emma x

[PPSN_JudyB Pelvic Pain Support Netwo in reply to jacquieb]

Jacquie,

Wasn't it Dr L you saw first followed by Dr R ? this is the usual sequence ?

During examinations in other European countries, you don't get a towel to cover you up. I'm sure most of their doctors would think we are very strange in doing this routinely.

Thanks for informing Emma.

[jacquieb Volunteer in reply to PPSN_JudyB]

Yes you are right, I saw Dr Labat first and then Dr Riant. Us English are a bit conservative, but I still find it difficult standing or sitting in front of everyone with me bits showing!, examination is different...

[Jeanmw]

Hi Emmax

could I ask how it was in Nantes? I had a total hysterectomy in August 2012 which has left me in pain and I am considering going

Jean

[Emmax]

Hi jean, lots of people have success in Nantes but after going down there and then researching further myself I decided to go and spend a week with Stephanie prendergast just out of sanfrancisco. After one week of very intensive physio and a strict physio routine In London i am 75 percent free of pelvic pain and right down on medication. For me it was the right choice. I found her the most insightful of any of the specialists I have seen. After 3 years of unbearable pain I am now left with chronic all over pain that I can't seem to beat. If only I had seen Stephanie earlier.

I am probably the wrong person to ask about Nantes.

Take care and good luck for the search for what is right for you.

Emma

[Hidden in reply to Emmax]

Hi Emmax

I am new to this site and was just wondering which physio you saw in London.

Hope you are feeling much better. Take care.

[Emmax]

I see Helen Keeble at the Whitehart Clinic in Barnes, SW London.

She has been absolutely incredible.

By far the most insightful during this horrid journey.

I am miraculously 80 percent better other than still battling the chronic pain which has been tough to tackle.

I have my tough days and the odd bad attack still but nothing like I used to.

I see Helen now once a week for an hour for maintenance and every six months or so I book in for a few sessions in a week if I feel I am sliding a bit.

Good luck,

Emma

[Hidden in reply to Emmax]

Oh thanks, I saw Maria Elliott in London a couple of months ago and she indicated that she could help, but after 4 sessions she gave up on me as there was no improvement. I thought it was a bit early, I was travelling from the Midlands. Do you think it would be worth giving Helen a try?

So pleased that have found help, my next step was going to be Nantes as this condition is life changing.

Best Wishes.

[Hidden in reply to Emmax]

Oh thanks, I saw Maria Elliott in London a couple of months ago and she indicated that she could help, but after 4 sessions she gave up on me as there was no improvement. I thought it was a bit early, I was travelling from the Midlands. Do you think it would be worth giving Helen a try?

So pleased that have found help, my next step was going to be Nantes as this condition is life changing.

Best Wishes.