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[Bath mum]

gosh mary jane...thank you for all your time and help...its so kind given I am a complete stranger!! but this condition certainly makes you seek out allies in the hope of hope!!

In short....i have had thrush twice recently...Candida Glabrata...and treated by fluconazole..but LOTs of it..both episodes took two weeks to clear and were really painful....i assumed this kicked off the PN.
i have cut out all sugar...did that about a month ago....been doing high grade probiotics etc too...i tried to stick to the candida diet but lost too much weight...so just have some bread and potatoes etc....
But I am also peri-meno so, maybe its that...or just a combination of things?
I have been going to my GUM clinic, and they ARe good...yes...
as I am on 6month fluconazole anyway..i took an extra one last night (dr said that would be ok) and am taking pessary tonight...
Previously I bought some multi-glyn flora plus - at boots for vagina balance re thrush and bv,  which sounds similar to the product you suggest? I thought I might use that for a few nights too...
I don't have the arousal symptom...
I am very anti any invasive procedures....although this pain is chronic, I don't feel its going to rectified by anything like and injection....I hear they are doing Botox?? but, I would be very very cautious..
The poor lady with the baby.. that must be AWFUL...

And yes, I have been off work for 2 months..I loved my job..I am a lecturer...I loved jumping on my bike and popping off on day trips with the kids...even getting to the physio I had to lie in the back of the car yesterday...but the worst is not being able to be the mother I want to be...I haven't left the house much for weeks...i've been in too much pain. I am also worried I won't be able to continue with my job..I am the main breadwinner...SO many bloody worries, and for such a little known condition...

The physio gave me pelvic floor breathing relaxation exercises...to try to relax the area..she also texted me late last night to say she wanted to get me referred to Greenslade sooner rather than later..if that was Ok...but he's overseas for two weeks..I appreciated her care though...

If you had ANY simple steps for me...from now in...to get to where you are..what would they be Mary Jane? I am so worried I am going to make it worse???

i am trying physio
relaxing
not sitting
heat pad
ice
tens machine
nortrip...30mg as of today...worked up from 20...

What CAN you do now? I really need to see a positive light at the end of the tunnel...

I hate the idea of Morphine..HATE it.......but I needed it to even function..and stop me wailing in agony....i've only taken 4 5ml doses so far...but its probably two weeks before I can see Greenslade..and even then I am not expecting a golden fix!

Cannot thank you and Judith enough..is there a forum equivalent of buying you a drink!!!??

[Bath mum]

Sorry posts got out of sync there....is notriptoline I am on....and that seems to be risky for irregular heart beat..I am awaiting a call back now from 111!!!

They did check my heart and liver function recently...

[Judith57]

Dr Anna Pellacaros actually phoned me at home once to 'check that I hadn't done anything silly' when I took one of the fluconazale with the amitriptyline. I had tried to contact her because I had taken one of the fluconazale with an anti-biotic and the amitriptyline and I felt dreadful - like I had been hit by a bus and was terrified. I had to spend 24 hours in bed with what appeared to be a very bad dose of flu. I also took myself off to A&E once as I thought I had damaged my liver with all the AB's I was taking. I am more careful now and don't entirely trust the medics!

[Maryjane]

I am afraid there is NO magic cure for this.......you are doing everything but it is a time thing I am afraid Dr Green as we say in the horse world, as in turn the horse out to pasture and let nature do its thing.


Your main enemy is stress as this winds up the central nervous system and it goes it o over ride searching for the pain.......however I was stressed enough with it but I am not the main bread winner so I really feel for you......I paid for all the specialsits I have seen £12,000 no insurance, and I and Judith 57 have seen the best the UK has to offer and the only thing that has worked is time......and ami for Judith 57 I was on it but got heart palaptiotins from it.....and they can change the heart rhythm to a very few for life.....I also got bad dreams on them.......the problem with this is we are robbing Peter to pay Paul , trying to mend one area to make another area worse......so you have to choose your medicine I guess pain or side effects.

Just remeber NO ONE not even the French  can say for definate it's PN but they go on the suggestive symptons......if we where in the US we would have had EVERY investigation known to man kind and most of them get worse........with each investigation they have.   

All the physios I have seen are against botox.....firstly it is a poison and has side effects that again are brushed over.....secondly they paralyse the muscle usually the levitor ani muscle.....so that stops spasaming.....but what happens is in the world of physio talk is the other main muscles have to pick up the work load so to speak and they then eventually can become a problem in themselves.....again fixing one problem to set off another.......you have to decide for your self how bad your pain is on a 1-10 and if you want to try whatever is offered to you, or calmly try and wait out the storm......Dr Baronowski who is the guy Jusith and I have seen wrote a paper in January 2014 with two other pain docs regards PN saying the first step is physio and medication CBT pacing life changes/then drugs the nerve blocks......and no one should have more than three blocks because of the accumulative effects of the steroid injections and the x-Rays on the pelvic organs, and if you have CT guided nerve blocks that's even a stronger dose of x-Rays........so for me personally and what happened to my mother I decided against them.

The best thing for you is walking.....keep the blood moving in that area and not sitting there stagnant.
I really don't mind helping people.....as belive it or not it helps me take my mind off my own fanny.....do you still have periods? If so is it better when you have a period?

[Judith57]

Mine will be a kir royale please 

Actually, I have just poured myself a drink to have while watching the derby - I backed the winner!

Honestly just avoid sitting as much as possible, I always have to sit sideways on the sofa now with a leg tucked under me but my foot keeps going to sleep. Give it time, look back at the first posts that MJ and I posted - you will see that we were where you are now and we are both much better although not where we want to be!

I have a bike and I would dearly love to go for a ride on it, couldn't even contemplate it 

You have already been really pro-active, I was the same - couldn't believe what had happened to me and how much it hurt!

[Bath mum]

Thanks again....and a nice image of you watching the Derby Judith...I feel very lucky to have your advise....and Mary Janes....and others...I will have to see where the pain takes me I guess....Right this second, I am ok...but haven't sat down all day....

people must be really desperate to go to France from the USA...But I think that a lot of people have too much faith that there must be a cure....especially the men that have this maybe? I may look up that paper...

The Dr at 111 said its OK to take the low doses of my two meds...its when both are given at higher doses that it can be a problem, and then usually in people who are already sick....its not great though...but if my thrush inflames things again, then that will also not be good for the PN!!

And yes,still having periods and it seems much worse at that time...although I have only had this for two periods...so it could be coincidence that it was a tiny bit better between the two..

Its all a big shock isn't it, at first....and a worry.....

[Judith57]

Yes it really is. If you google Dr B on mumsnet, there is a post from a woman who weaned herself off all drugs and finds she can increasingly sit on the tube on the way to work now, but it's been twelve years!

I try not to think about the changes to my life now and just am thankful that I can remain almost pain-free. I was one of the people fighting to get a seat on the train to work, now I just stand by the door and read my paper or do a puzzle. Whoever thought that sitting would become impossible?

My cushion does enable me to go to restaurants though, best 30 quid I have ever spent 

[Bath mum]

Gosh...yes..I am hoping that as I have started 'treatment' ie physio etc, breathing and so on early..that I may be able to keep things at bay...I get stressed with the pain...but who wouldn't??? This is why I am so fed up that the ruddy thrush is back....I really need a break here!!! I feel like I've got some terrible curse!!! But If I can get to being nearly pain free and go to work...then that would be great...its not the life I imagined for myself....but that is what life throws us I guess. I thought me and my hub would be globetrotting retirees....gotta keep hoping I guess....

[Maryjane]

Forgot to mention a TENS machine......it helped me a lot in the early days I had it on 12 hours a day , doesn't stop the pain but is a great distraction I whacked it up high enough so the sensation was stronger than the pain.....it's all about distraction whilst the nerve is having a temper tantrum.

[Bath mum]

Can I check what cushions you use? my physio recommended a coxyx one...I just tried a few in a shop (after lying in the back seat of the car and being driven there)...and that seems totally wrong to me! A little hole in the back, then pressure on your bits and front? I think a u shaped one would be better..that supports bum and thighs but has nothing between the legs...

Today isn't great..went to the GUm just to check for thrush...they couldn't do the test as I had used a pessary two nights ago...fair enough...but the Dr there said she doesn't think that the vaginal pain I have IS thrush (even though when I had this pain before I tested positive for thrush, and had inflamation and white discharge!). She basically said..we are not the place for you...you need the pain specialist and your GP and probably anti-depressants....well, I know I need the pain specialist and am waiting...but I only wanted to know what was going on with my vaginal pain...and if they can't help then who can?!

You have both recommeded Dr Anna P....but I guess she is in London? I seriously couldn't get there at the moment....I wonder if there is anyone similar in Bristol/ Bath area..does anyone know? In all of this I've not seen a gynecologist....

[Judith57]

The one I use at work is like a ring donut but I honestly don't think it is very good for me. The one at home is U-shaped. I haven't had a very good day today either, my OH drove me to see my mother in her care home yesterday and it is a 140 mile round trip. Everything is throbbing today 

[Bath mum]

sorry to hear that Judith...that is way too much I would think....I led in the back of the car for 10 mins....and have had to resort to morphine again tonight...very reluctantly...this is the pits isn't it!!!

[Judith57]

It really is the pits, how can this happen to our bodies ?? I had never even heard of the pudendal nerve before all this c*** started 

[Bath mum]

Me neither.....my sister is coming up to look after me this week...and We were both saying this last week..we never even knew this existed....wish I still didn't!!!!

[Maryjane]

The cushions are trial and era what suits one doesn't another.......however the coccyx ring isn't usually suitable for PN.......as I said earlier I have never used one......but I have recently had one made for me just in case as my daughter gets married in seven weeks and I need to sit......another PN lady made it for me......she was also normal five years ago had a hysterectomy and bang......


Dr A is London yes......she is a sexual health specialsit......there will be a privare one in Bristol I am sure.....as I assume there is a teaching hospital in Bristol?

Yes you should see a gynae just to rule out.....at least have a transvaginal scan......however your symptons in my un medical opinion are PN or one of the other nerves down there......Dr Greeesdale can refer you to a gynae if he thinks it necessary......problem is most gynaes are useless at nerve damage......just remember as little invasive investigations as possible.......

Sorry about the GUM clinic .......they suggested the antids in the form of ami/Nora/duloxetine etc for nerve pain.......what dose are you now on? also you could ask your GPS about a Lidnocaine patch and put it on your butt to get to the area where it's needed it's what a lot of them do in the States and some here.......it's just quite expensive so some GPS are reluctant to use it...

Did you say you think your mum has/had this? Glad your sister is coming to help......must be so hard with children ......have you tried the instagel numbing Lidnocaine on your clitorise?