Health Organization for Pudendal Education

Hi to everyone >>>I added my bit to Helens approach to embarrasing bodies, I guess I wasn't chosen as I could not get a picture of "nothing" they were asking for letter and application along with photos.
That is not what I want to ask today. I had 8--16 injections as a pn block and originally thought they would be done spine via ct guided...oops I should have asked first...I had a chance on a lot of occations but didnt..so the day of the procedure was slightly surprised when Transvaginal was mentioned...and that's how it was done plus 4 nurses 2 that held a leg up each and one each side of shoulders, has any one had this block done this way?
WITH LOVE
LITTLE MO

OMG!
No, I've never heard of PN blocks being done that way. Anyone else?!??!!?
How are you feeling today? What kind of reaction, if any, did you get from the blocks? And why 8 -16 injections?? Are you sure these were PN blocks, hon?
Hugs,
Karyn

Little mo

Many years I too had some vaginal injections but mine were done under sedation; they did give me a long relief which sparked off my whole plight that the PN was the root cause of my pain. I hope that the whole ordeal hasnt been too traumatic for you and that you did get some relief at the same time.
The idea of the CT guided nerve blocks is that they are guided and therefore more definitive in their target area. Can I ask where you had these blocks?

The Embarassing bodies programme is a very good one, however it is mainly targeted towards a problem and then a solution...and usually a visible one...we cannot offer a visible solution..what a pity. I have been working on a draft text to the team so that they may target a programme on PN....but as we are an exclusive group with no definitive positive result I dont see that we will be accepted as a good programme project.

Hello to every one
I am so , so sorry I haven't answered it has been very rude of me but the whole truth is I forgot I posted about the transvaginal pudendal block
So, I must be more tuned in for the future.
Well having told the story this side of the atlantic and tother, The whole response is the same...and I really don't know how to view this anymore.
There was no sedation, it was torture, the procedure was ten mins but felt like ten hours to me. IT HAS NOT WORKED ,sorry I'm shouting, going through that I rather expected something would have improved but no.
The big problem now is This doc is the only pain management assigned to me, he has a procedure he said, he will do in the event of the transvaginal not working, I had prior to that a gangalion impar ct guided and that didn't work.
I really really need help because I am the only one who is convinsed that the butrning bulge that drops into the vagina after ten mins of standing is an organ! perhaps the bladder...but every scan and even mri shows no prolapse.
My argument on this is that I am laying down through scanning, that's when I am out of pain, but nobody is listening to me I really do not have a gp who will support me for a manner of reasons.
I hope there is a stand up scan but my gp will not sanction any more imaging. No more medication can be given but I am in so much pain, I worry with these procedures that something will perforate either the bladder or the bowel as the pain and burning bulge is more active after bowel movement.
I am and I am ashamed to say almost suicidal, I dare not breathe a word to any gp as to how depressed and in constant pain for fear they will take away the diazapam..it is 2mg but I now take 3 a day I need to otherwise I will compleatly breakdown. Every day I wait for this bulge to drop and since I have been everywhere there is no one to turn to . Again I am so sorry I didn't answer I forgot.
If someone could tell me they have these symptoms of a burning bulge in the vagina that cannot be seen I think I will stay sane longer but I am at wits end now where to go what to do and no gp who will listen. Thanks for your replies and hope you all quite well
love from me
xx sorry just read another question...I live South east England the procedure was done on a sat at local hospital in day surgery, very painful and no result...

I am so very sorry to hear all that you have gone through. There is nothing to be ashamed about feeling suicidal. I know that there are many of us who have felt that way at times too. Many of us are also on an antidepressant which sometimes helps with the pain along with either Neurontin or Lyrica and pain meds of some sort.

Praying that there is someone on the board who is closer to you and can help you with more local options.

Hugs and blessings,
Grace

Little Mo,

If it's any comfort, I too sometimes feel as if a pelvic organ is dropping out of my vagina. But much like the feeling of many PN sufferers that there's an "object up the butt", it is not real. It's just the way that the nerves are firing. In my case, the feeling goes away after icing and resting. It tends to come when I have "overexerted" myself (by PN patient standards, not a normal person's standards).

If you have been diagnosed with PN, please stop worrying about the cause of your pain and discomfort, and just focus on getting better, finding the right caregivers, icing and resting. Over time you will feel better. Many of us have been where you are now.

Warm regards,

Lernica

Little Mo, the feeling of having a foreign object in the vagina is a symptoms of pudendal neuropathy. It happens because the nerve is playing tricks on you and sending incorrect information to the brain.

Please hang in there because maybe a PNE specialist can help you. There was a time I did not want to live either but now I have my life back. So keep your courage up and keep fighting.

Bless you for those words of comfort and hope! I have been in this situation just over 3 yrs and seems a big chunck out of a normally healthy active person, as I was...I went from specialist to specialist Doc to doc even had hysterectomy but that didn't help with the pain, then it was considered I see a pysciatirist but that was wasted as she said it wasn't imaginary.
The very first day it was a friday I could feel a lump inside the body behind the clitoris and had a whole urology team shaking their heads saying nothing was there.
All savings spent on tying to find what wa wrong.After being on my own (happyly) for 17 years since my partner commited suicide I met this wonderful person Tony and he has been such a tower albeit that the life we looked forward to was snatched.
I have not had a diagnosis of pudendal, it was by sheer luck that by being on this site a few years ago I suddenly realised most if not all members lived in the states (I had not seen the uk bit) Violet guided me towards it bless her, then one day when I was able to climb stairs (it was I think a fall down these stairs that started off )I found I had a pm and this nice sounding lady said she lived just down the road to me. I thought I don't think so, but she wrote back to my reply and she did just 4 miles away how uncanny. We have been good friends ever since and have so mant things in common as well as our two men play golf and have probably played together in a competion, this lady has same christian name as me and I child in same proffesion as mine. It gets more spooky as she works at a surgery where my gp visits to do alternative therapy, and the big shock , the surgeon who did pn blocks on me lived right next door to her!! the similarities go on and on how strange.She has been my tower of strenght, the person I write pages and pages of sometimes woe is me others to make her laugh she is a true friend and suffering herself, she has been to many of the top surgeons of Pudendal and has a management of her pain.
In the first month of my strange pain I visited my reg gp and he upset me so much by saying he was concerned at the amount of times I was turning up there. He asked what did I expect him to do ..I felt so alone, so frightened and decided never to visit him again. I had many to choose from as the surgery had 6/7 gps.
O ne in particular was so supportive I always tried to book to see him, not always possible, then one day he told me he was no longer looking for a cause and not sanctioning any more scans etc. but had put me into the hands of pain management it was the first time Pudendal nerve was mentioned and I thought a cure was in site, (this is the doc that lives next door to my friend)For the first time,I was hopeful, alas, gangalian failed so to this transvaginal bilatarol pudendal nerve block. My follow up appt to this in July ...have written and phoned asking to be seen earlier.
My chosen gp phoned me one evening and told me he could no longer give me care he said I had gone behind his back. I had been proactive , researching, and trying to find the cause and the cure and was having more scans (not many) but this he didn't like.
I really felt the need for a consistant doctor as I believe a lot of test results and letters have not been read.
There is a practice manager assigned to the three surgeries where I live so I wrote and asked her could she please arrange someone who could give care and support I need, and for several weeks I had no answer untill I wrote again. She said I need to change surgeries, but not saying no doctor would take me on as a reg patient. I went into tears as I felt so abandoned, no one to talk to about the pain my concerns or the next step. I asked if she could kindly arrange this as my energy is fast fading and not a moment free of pain. I have had no reply in two weeks. I don't know what to do now as I am hoping this pain doc will get back to me soon. My son is not very assertive, my daughter not understanding and Tony embarresed at standing up for even me as he is quite shy.
If I had energy I could ward off this depression, if I had a caring doctor I could face the future, I am so very scared that my energy will not return as sometimes it is almost afternoon before I can do anything. So woe is me and thank you so much for sharing your ordeals and for listening.
love from
little mo
xx

Little Mo, I hope some of the UK forum members can guide you to the right doctor and procedure to follow in the UK. Often it is just a matter of finding the right person to treat you.

Hi Little Mo

So very sorry that the pn block did not work, that must have been so disappointing for you, to say the very least. This was a pain management doctor that did it? There aren't many places getting good results with PN blocks. What is he going to do next? And have you had a diagnosis yet? I hope you don't have to wait long. If you don't hear soon, it might be an idea to try to ring his secretary and see if a letter has gone out to you yet.

And please don't feel that you need to apologise for not answering promptly! - this board is here for information and mutual support, we all come and go as we wish - also, remember that everyone on this board is in pain and understands how it is.

How to get a new GP - choose the practice you want to attend, and then just turn up there and ask to register. If you know your NHS number it is helpful, but they can manage without it. It is all very straightforward. I wouldn't recommend waiting to hear back from the practice manager, I doubt that she'll agree to arrange it for you, better to just do it yourself, I'd suggest.

And hang on in there!