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[Judith57]

Ooh and Hattie, forgot to say, my reward for taking myself off to the shopping centre on Friday was a new coat, even that didn't feel the same though because previously I would be planning a trip somewhere nice to wear it...

My reward yesterday, for walking into the village, was two pairs of new shoes 
Well, a girl has to get her pleasures somewhere.....

[Hattie]

JUDITH 57

How are you ?  Just wanted to apologise as i think my last posts upset you but i didn't intend them to.

Sorry that it has taken me some time to post this - sometimes i need to steer clear of the subject for a while - Maryjane has been a big help and support to me to.

Hattie X


TO ALL

It is a great pity that Emma will not make 'How to cope with pelvic pain' a sticky thread - i have now asked as well and the reply was that the subject isn't popular enough (as the thread had dropped back) to warrant it.

Could any other members especially longstanding ones possibly ask Emma as well ?

Hattie

[Judith57]

Hi Hattie, no your post didn't upset me at all in fact I was worried that I may have upset you, we are all on this grizzly journey together and it is very helpful to know that there are others struggling with the confusing symptoms and the fact that our bodies are a stranger to us now...

I had a horrible time last weekend, I think my body is protesting against all the anti-biotics now. I could feel that I had thrush brewing so took a fluconazale capsule but it re-acted badly to the anti-biotic that I am taking and I spent two days in bed with flu symptoms, I have taken a few days leave from work this week but am now going down with a cold, my poor body is incapable of fighting any infection now. I went to see a medical herbalist this week and am now deciding whether to ditch the 6 month anti-biotic regime and go down her route. I don't know what to do for the best really. These things won't help with the pudendal nerve problem though.

My partner came to see me yesterday and we went to a restaurant in the afternoon and it was quite successful but I had to take my cushion with me. It was the first time that we have been out for ages so it was a minor victory. Today we drove to the coast and I sat on my special cushion in the passenger seat, I find it so hard to accept the limitations that this has put on me.

I go to see the pain management specialist on Tuesday but nerve blocks don't seem to be the way forward for me.

How are you doing? xxx

[Hattie]

Judith57

Glad that i didn't upset you - you didn't upset me either - we are both different people tackling this as best as possible. I've pretty much given up going out shopping and do everything on the internet now.

I had one unguided nerve block done transvaginally about 2 years ago now - everything blew up a bit afterwards and the pain was no different - was told diagnostically it meant that it was not the pudendal nerve - i believe though that a branch off the pudendal nerve going off into the vulva is affected in me. When i open my bowels or break wind for some reason the pain dissipates for a brief moment. I accepted the block on the spot when offered it as i knew if i went home that i would be chewing over a decision cos i am like that ! - i am not sure though if it didn't make things worse in general - as you say it is difficult to know quite what to do for the best each time.

I've had a couple of bad days this week mainly with what i call the cheese wire pulling effect but it is not so bad today.

Do you find when you are out that the pain starts to take second place for a while ?

Is the medical herbalist a chinese type one ? I wonder what they do in China for pudendal nerve problems - would we know over here if they are taking a completely different approach.

Hope that your cold gets better quickly.

Hattie X

[Maryjane]

I didn't get a reply to my e-mail about making it a sticky :-( , that is the problem with this whole " problem". The professionals that I have seen have said that at any one time 2/3rds of the population have some sort of pelvic pain, and 1/3rd have it all the time female and male. The London pain clinic see ten new cases a week, times that with all the pain clinics around the country and many patients being fobbed off with " it's physiological " by there Gps, walk a day in our shoes, there may not be a miracle cure but empathy is 50% of the battle.



Hi Hattie....keeping busy does help......my dog walk i do every day is done at a very fast pace, just enough to get a sweat on ( poor dog one of them is eleven, but vet says he's one of the leanest Westies she seen), and that really gets the good endorphins going which are also natures own pain relief.

I have gone backwards at the moment also, although today I have been almost pain free, but last night I had a small cry, doesn't happen very often anymore but does help.

My mother had a nerve block in London last week, and she is far worse than when she went. I go to the pain clinic the beginning of October in London, and the specialist I am seeing is more " holistic" but I have decided not to have a nerve block, the only people that will do nerve blocks on me is the Professor in France for a diagnosis, and then I would have a good talk with him as the way forward.

[Judith57]

Hi Hattie, I do find that when I am out and about the pain is a lot better but the main problem that has manifested itself now is an inability to sit down due to a sharp pain in my right buttock, as soon as I put pressure on it my pelvic floor starts to spasm and then everything starts burning. I have been walking around Whitstable today carrying my special cushion. I have another cushion that I use at work and when I get myself comfortable on that and engrossed in work I can forget about the pain for a while. The only thing is I get quite exhausted as I cannot sit on the train and some nights I don't get much sleep. I really feel as though I am limping through my life and I think I will need to give up work shortly.

The herbalist I saw wasn't Chinese. I went to see a Chinese doctor a couple of years ago when I was suffering from insomnia and neck and shoulder pain, I paid a thousand pounds up front for some special 'tea' and a course of twelve weekly acupuncture and massage sessions but he scared me to death on week three by saying that he thought I had had a stroke and needed to have a scan on my brain. I managed  to persuade a rheumatologist to refer me for a brain scan and everything was normal. When I came to the end of my twelve sessions he said I needed more treatment and wanted another thousand pounds, I was feeling a lot better by then so didn't go back. I didn't mention my pudendal nerve problem to this herbalist as I went to see her really about the state of my gut after all the anti-biotics, last week I felt as though I was fermenting!

I know what you mean by the cheese-wire effect, I used to get that but haven't had that for a while now. The pain for me now is in my right buttock and around my anus, if I sit without my cushion though I get the vulval pain.

This is turning into a real humdinger of a cold on top of everything else!!!

xxxx

[Hattie]

I may try again for a sticky thread Maryjane - it doesn't seem much to ask for.
A couple of ladies on here recently with VA have written how things are feeling worse after sitting down - which is one sign of the pudendal nerve getting irritated.
Having a sticky thread may help someone make the right informed decisions as to what to do as there is little general help out there for pelvic pain and you are left to yourself mostly with medics that tbh in some cases aren't really sure either.

Going for a walk i find makes the area look better too - i guess more blood is pumping around.

I had read about nerve blocks before i had it done - things were gradually getting worse for me anyway so maybe if i hadn't had it done i would have been left wondering if it would of helped.

Sorry that you have had a set back as it is difficult to know what you have done to cause it - glad though that you are now having some painfree days.

Hattie X

[Hattie]

Hi Judith

Sorry that things are so bad - i had a part time job that i was due to go back to but couldn't then do it - it meant i lost an outlet and some structure to a week. Imagine giving up your job will be hard especially when it is not really by your choice. My daughter is an accountant and has a bright and active mind.

We used to have a chinese practice/shop in town with lots of jars and stuff in the window - sounds like it is best avoided ! I tried some acupuncture chinese style at a local centre the beginning of all this but it really was a waste of time. I also had some western style acupuncture done at the pain clinic which got nearer the mark but didn't help. I am all up for trying alternatives to some degree though.

If i can get engrossed in something the pain doesn't dictate so much for a while - i just get sad that it is there waiting to take over again afterwards. I usually make the effort with family to do small things that can take my mind away but get upset that i can't commit like i used to. I can have an arranged meal with my daughter but can't arrange to freely meet up or go out with her anymore like i used to.

I've got one hot dot at the back of the vulva which i now think is a nasty trigger point as there are tight muscles surrounding, general burning and the cheese wire which as you know is like someone pulling one up between your legs ! The anal pain must be painful.

Hope the cold passes soon.

Hattie X

 

[Maryjane]

Hi Hattie......I have read some threads recently also that I have thought that sounds like the PN to me, my physio is getting a lot of new cases as it is starting to be found on the internet via forums etc. it really is the main nerve down there that's is in "charge", and as you and Judith 57 know I have really researched this, and there are quite a few specialists that also now realise that the PN nerve and IC are linked, and Vulvudynia are also linked.

Also some ladies get the PN problem after a hysterectomy, colonoscopy, childbirth especially forceps delivery and an untreated UTI there are more, and more ways of getting it, and there are an awful lot of ladies/men who have it and don't get a diagnosis, when I started this journey of diagnosis my local specialist hadn't a clue, I then went off on my own trail, got my diagnosis went back to see her and she suddenly had two new ladies with the condition, when I first had it I took a picture in of the nerve pathway of the PN and  I said that's what I think I have! that nerve gets in everywhere.........and this is my own personal opinion nothing medical! but I think the PN is probably the one that gets in on the game with VA.

I think my set back is being caused by my bladder, as I was a lot better on the nitrofurantion I go back to see the uro/gynae on Wednesday, although so far having another good day.

If you can Hattie try and set a goal of going for a good walk everyday, and perhaps stop off for lunch " with the friendly" cushion in tow. Walking really is the one thing that has kept me sane, just listen to everything around, and yes it is good for the blood supply especially down there as we are designed to keep on the go, I go in the afternoon as well for a gentle stroll.

Xxxxxx

[Hattie]

You are right i need to get back to a regular walk - i was doing so at one time but have slipped back recently - the cooler weather suits me so i have no excuse.

Well i have emailed Emma again and asked for sticky thread to be reconsidered considering that one of the  factors can be Menopause - somewhere permanent to share and let others have some information - anything here is going to roll away. Fingers crossed.

Hattie X

[Hurdity]

Hi hope you don't mind me butting in but lots of popular threads aren't sticky threads but if they are popular will always be at the top. What you could do is ask to get the thread's title changed to what the main issue is (or start a new one) and then if it is a common issue that members want to find-out or post about then it will always appear on the first page of that section or you can bump it up? Do you see what I mean? The Burning Club is one of these (Dancinggirl started this one) and CLKD started one called "My Bladder" which can be for anyone to talk about their bladder. We also have weather ones, and What have you done today, as well as wild birds, and they are never far from the top!

Hope this isn't too off topic but thought it might help

Hurdity x

[Hattie]

Thanks Hurdity

For the moment i have asked Emma if it is possible to have a new sticky thread started with title 'How to cope with pelvic pain' or some similar title on the premise that popularity is not the main issue here but having an easily available thread is, as information is sparse elsewhere.

i think Wanderer would have to ask for the title of this thread to be changed as she started it.

I will leave it to Maryjane if she wishes to start a newly titled thread - at the moment i am trying to back up her original idea.

I will post back if i get a reply from Emma.

Hattie X

[Emma]

I did reply in an email about this. It was discussed and decided that if it was popular it would stay at the top rather than make it sticky.
As Hurdity has suggested, we could rename a thread and merge other similar threads with it.

Emma

[Hattie]

I have now asked Wanderer if she could possibly ask for this thread to be renamed with Pelvic Pain somewhere in the title.

Hattie X
 

[Hattie]

Thanks Wanderer & Emma