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[Judith57]

That's good news x x

[Bath mum]

I will try to get to a physio asap..struggling to know which are good ones...i have found a women's pelvic pain one nearby...I will talk to her and see what she says about pudendal conditions..ie if she says its about relaxing etc...then hopefully she is one in the know..but I don't want to make it worse..

My kids are 9 and 10...my husband has given up his job as he worked in the evenings and it was all too much..we were all ragged. The kids know I'm ill, but I've been trying to be normal around them...of course they can see me in bed a lot..

The morphine is the last thing i. wanted to take but I couldn't carry on in that much pain..I was just wailing on the sofa...I didn't get much sleep last night, but wasn't in pain and was peaceful....My pDr is hoping that the notryptoline will start working in the next few days..although i know it can take a lot longer..I have been advised to go from 20mg to 30mg on Sunday...and see over the following week what happens.

The Bristol teamu are trying to see me asap, but Dr Greenslade is out of the country till the 18th...I am not expecting that to be a quick fix though...in any way...

[Judith57]

Hi there, glad you had a pain-free night. How are you feeling today?

[Maryjane]

Hopefully the Noratriptyline will start working.....I no it gives some ladies complete relief......but remember and this is really important the nerve is still damaged all the drug is doing is altering the signals to the brain......so don't go and sit all day.....as when people start to come off the drug the pain can be worse than ever.......you have to really look after your self.......I have spoken/emailed quite a few people in real life with this and they have told me the mistakes they made and what not to do.........and one being if anyone suggests injecting your clitorise with steroids.......run for the hills as fast as you can....and also remeber when we pay private we are " cash cows" Judith 57 and myself found that out immediately......I have spent thousands of my own money on this ( no insurance) in desperation as I no how you feel......and what's helped " Dr Time" .......I am still not the old me don't think I ever will be again, as it's now a weakness.....

I am glad I had the MRI Nureography very expensive and only three in the UK.....but it ruled out "travl cysts" (sp) that can in rare cases be the cause of this.....the problem is also it showed up three other things that could also be the cause ......but the treatment for them could make it worse ....so I am letting sleeping dogs lie......I would try vagifem also if I was you. Hope the Bristol team see you asap ....he will more than likely want to do a nerve block.....and if you decide to have one I would only have the numbing part to give an idea if it is the PN or not......but a really good physio is your best starting point.

[Bath mum]

thanks so much guys...I am ok because of the morphine..and I am seeing a physio today....i will try to find out how good she is..I couldn't speak to her before seeing her as she's in clinic...but she came recommended by another physio who does a lot of PN work, but lives too far away for me to see.

 so...thank you so much for your advise..You speak so much sense....my preferred routes are nortriptoline, physio and time/rest... I am not even sure I want a diagnostic nerve block...

[Bath mum]

Back from the physio, she seemed very knowledgeable...I have some good breathing excercises to do and am seeing her again next .friday. She was all about relaxing and breathing...she also works with Dr Greenslade in Bristol..they refer to each other. She was realistic....no quick fix.....but things can improve....maybe not to 100per cent...but better than at present. Also advised a coxyx cushion, rather than my wwobbly doughnut..

[Judith57]

Ok that's some positive news. I have a donut at work but for home/restaurants etc I have one that was specifically recommended for PN. Got it from Amazon for about £30.00 and it has a handle to carry round  .

I was thinking earlier about when I was in the early stages of this and I went on that scary HOPE website. Someone had compared the pain to end of life terminal cancer pain. That really freaked me out. I do know exactly what you are going through as the pain during the initial flare was horrendous and it has never been that bad since. I wanted to get a knife and slit the area between my vagina and clitoris to release the tension  My husband died from cancer and it wasn't until the last few days that he was in agonising pain, I called an ambulance in the early hours of Monday morning as I couldn't deal with his pain, they gave him paracetamol which did work to a certain extent but then the McMillan nurse came out first thing and called an ambulance to take him into a hospice. They managed his pain then with morphine and he died on Wednesday evening.

Like you, I remember wailing with the pain and screaming for someone to take it away. Today I have paced myself and am having a good day, I don't work on Fridays. Driving is still a problem due to the trapped nerve but I no longer have the intense vulval pain and am no longer aware of my fanny 24/7.

When I made the initial appointment to see Dr B his secretary asked me how long I had had the pain. I told her six weeks and she was genuinely shocked, said most of his patients had been suffering for about five years!

Take heart, it does improve but there is no quick fix! Listen to Mary Jane - she is an expert now and has helped me through some tough times. We did have a pelvic pain thread on here a while back, you have probably already found it 

Also, I did not find the scary websites helpful because usually when someone recovers they don't go back on them.

Let me know how you get on over the weekend xxx

[Bath mum]

Thank you so much Judith....You are very reassuring, without giving unrealistic hope, and I really value that. My physio this morning also said how important it was that I was getting help early, as physio has better outcomes then....

I am really sorry to hear about your husband. That must have been terrible for you. I witnessed similar with my father in law..

And yes, the pain I was having was horrendous. I am 46 and feel so fortunate to have ben so healthy till now...if I have to manage this, that's OK....the morphine is odd...it kept me awake? but I needed it....

And yes, I saw some other forums...and the physio said don't read them! But, There is a real difference between some very helpful support like I have had on this site, and the horror stories on the others.... I did find a thread on the HOPE one which was just loads of people saying that they had had good results with nortriptyline  and come off it to find they were ok in a few months...so I know that that CAN happen too..I want to nurture my nerve..as MaryJane advised...the drugs only mask the problem...so if I can take the advice of my physio, and let time take its course without being in too much pain that would be ok..

Thanks again.....its really helped me.

[Judith57]

I made a big mistake in the early days of trying to wean myself off my cushion at work. The physio that Dr B sent me to (not a hands-on one like I had been seeing in Harley Street) told me to try ten minutes on and ten minutes off. I got back to the office and sat on my chair without the cushion, eventually everything went numb and I thought 'well if ten minutes is good a whole morning must be really good'. Then everything started fizzing like I was sitting on an electric fence and that is when I think I went from pudendal neuralgia to pudendal nerve entrapment. So be careful, do not aggregate the nerve any more than it already is! Mary Jane and I refer to it as 'cushion-gate'. You have to find some humour somewhere. Honestly, it will become easier 

[Bath mum]

Not such a good day today...I am in a lot of pain, and to top it all I think my thrush has returned...which was what started it all off in the first place....and is painful on its own, let alone with the pud nerve.....I'll get a swab on monday...but I am pretty sure...this even when I am on fluconazole for 6months...I just wonder what an earth has happened to my body in the last six months...even the morphine didn't dull the pain last night...how do you cope???

[Maryjane]

How do we cope ......we have no choice I guess😔firstly regards the thrush the dose given by the NHS quite often isn't strong enough to knock it on the head......but anyway I would definatley go to your local GUM clinic on Monday not the GP.......firstly the GUM clinic look immediately under a microscope and then they send off there swabs to a top laboratory better than your local hospital.....I have been three times now and Judith 57 has been also and they are great and so more experinced.

Could you have BV ? Bacterial vaginosis (sp) also VA vaginal atrophy.....I really do advise you to use vagifem I also use estriol that I rub onto the vulva.......as it is known that perimeno/meno can start off PN also the muscles become lax from lack of oestrogen and takes the nerve with it.......I am just making sure you have not been told to do pelvic floor exercises as this will make it worse.

You can buy from the chemist instagel or emla cream or 5% Lidnocaine all numbing products but if you put it on the clitorise this may help.......you must be carful with the morphine as it can start off as your friend but become your enemy......pain clinics do not give it out for nerve pain........what dose of Nora are you on? You can add Pregablin to the mix but you have to weigh up the side effects of these drugs and it is imperative you come off them slowly......you need to cut out all sugar from your diet regards thrush......boots sell a product called balance activ vaginal pessaries for thrush and BV they work better than the thrush pessarys.......and the thrush is becoming immune to fluconazole.......I no a lot of ladies use nystatin which is no longer available in the UK.....because I believe costs thus get it from a German pharmacy.......there is also a condition called Ureaplasma that is not checked for as standard which is worth checking out....I strongly recommend you do go and see Dr Anna Palercarous for the hidden vaginal infections etc I can almost guarantee you will find no one as thorough and gentle as her......wear skirts and go knickerless......send hubby off to Boots for the pessarys.......ice the area......and yes I also can't belive what has happened to my body 18 months ago I was riding my horse 5-6 times a week for three hours ago , my life is dramatically changed, no more horses, jeans, long car journeys, luckily went to visit my daughter in New Zealand 6 months before this started as there is no way I could do that now.

As a six emote I have been chatting to a doctor in the UK who has this after childbirth 9 months ago.......she is dealing with it no better than anyone else , she had no idea what this sort of pain is like......and she has had the electric pulse frequency treatment and guess what she is in much worse pain......so how ever desperate you feel really do your research before any procedures.....and regards the steroid jabs.....they don't tell you about the cushings it can cause, autoimmune diseases, plus all sorts of other things......it's a short term sticking plaster......do you have any PGAD problems? That is the feeling of arousal without wanting sex at all? Just try and keep calm and avoid sitting.💐

[Judith57]

When I was really bad I used to find that going for a walk helped sometimes, also lying in a bath sometimes helped. Have you had a vaginal swab to check that it isn't gardnerella or something? I see that MJ has posted while I have been typing this and she has said what I was going to. I think MJ is right, take yourself off to the local GUM clinic. I went one Monday morning last year and found myself with all the teenagers that had had unprotected sex over the weekend, not my finest hour. Anyway, they did a test for thrush there and then and it came back positive. Another thing, do all the different doctors you have seen know what prescriptions you are on, you are not supposed to take amitriptyline with fluconazale, Dr Anna Pellacarios actually wrote to one of the specialists I was seeing as some of the drugs I was on were contra-indicated, I don't know if noritriptyline can be taken with fluconazale.

I had a UTI, then thrush then the damned nerve became caught up in it all.

Have you tried frozen peas wrapped in a tea towel?

[Bath mum]

good point judith...its my GP who knows about all the different drugs and I have reminded him too...but he seems to cut fast and lose with prescribing I have to say..he really does his best..but I often think he must be missing things...

yes, I have also been to the GUM...feels like being at work for me with all the students...i hated it actually, just wanted somewhere suitable for middle aged women with genuine problems...but the service from them was very good...they picked up the candida glabrata (rather than usual albicans).. and i have a very good specialistvGP there..but she only works on Fridays..sods law..

When drugs are contra-indicated does it mean they wont work or its dangerous?

[Maryjane]

Both......but I believe with ami and fluc......it is to do with the liver and how it is metabolised.......however I do no of ladies who take both as they are on long term antibs, and ami for pain and thrush medication........just ask the chemist as I feel they no more quite often regards the drug interactions......I always double check with the chemist........but the liver dose recover well generally speaking......

[Taz2]

Info here http://www.webmd.com/drugs/2/drug-8611/amitriptyline-oral/details/list-interaction-details/dmid-2250/dmtitle-amitriptyline-fluconazole/intrtype-drug 

Taz x