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[Judith57]

I can't really work from home as it is quite a hands-on job, I need to interact with a lot of people and it would be difficult from home. I so didn't think I would be having to put up with this c*** at this time of my life. I had such plans for when I retired - travelling etc.

Ho hum, what doesn't kill us makes us stronger apparently 

[Maryjane]

Bath mum .....I am reading a excellent book called the V book.....a doctors guide to complete vaginal health......by Elizabeth G. Stewart, M.D and Paula Spencer........the clitorise has 8,000 nerve endings and guess which nerve it is? Our friend the Pudendal nerve😔and is the most sensitve organ in the body.

[Bath mum]

Hi Maryjane....well yes, its crazy isn't it, I never gave my clitoris a second thought and now its ruling my life....I wish they could just inject it and kill the nerves off...i wouldn't care!

Saw my physio today.....she is at a big pelvic physio conference this weekend..and is going to see if anyone else has had a case like mine, none of the physios on her forum have had this presentation aparently...its PN but only the one branch she thinks...and she's finding it hard to find trigger points?

[Bath mum]

And Judith..I know what you mean....I had mental plans for all these amazing family holidays now the children are a bit older....but I am not giving up on my hopes...we will get better...the body wants to heal itself....we have to believe that...

[Judith57]

Yes positive thinking! You are sounding so much better than your initial posts xxx

[Nemesis]

I tried to resign last week but my boss won't hear of it. It is such a shame as I love my job and don't really want to leave but it is so difficult struggling with this pelvic pain. He told me how much he relies on me, I am his rock etc so I have agreed to stay for now 

He said he wants the old feisty super-confident Judith back. SO DO I!!!!

I want the old super feisty confident me back. But sometimes you have to do what you have to do, if you need all your strength and resources to get well maybe you should follow your own instincts not your bosses. Perhaps s/he could give you a six month sabbatical ? It sounds like you are excellent at your job, when you recover (positive thoughts) you could either go back or get something similar. I have had to give up work for the present to deal with my debilitating condition (not PN).

Hugs to you all and better days ahead.

[Bath mum]

Hi yes, its hard to know when to let go and when to fight on.....I need to keep my salary coming in till my husband gets a full time job...he's always done more of the childcare while i had the bigger salary...and now its hard for him to get work...its awful how people are so wary of men who have had a career break....

my work are being amazing, and letting me do bits from home as and when i can, but its difficult. It does make me feel like me though..rather than just a member of the angry bits club!

Looking forward....Can anyone give me their wisdom on nerve blocks? i know MaryJane you said..no way in Bristol..which is near me...

! I know that will be the next thing i will be offered...I have read a promising paper from Australia showing 40 percent of women with PN found their symptoms didn't return, yet other papers show that nerve blocks only ever give temp relief....I am usually pretty good at wheedling out the facts...but this is confusing...

[Bath mum]

...i wish you all well too.....i keep looking at wimbledon amd thinking how odd it is to just be envious of people who can sit down! and i ordered my valley cushion today.....ho hum....

[Judith57]

Me too, I look in envy at the people sitting at Wimbledon and sitting on the train and can't believe how much I used to take it for granted. I had two separate meetings at work today and couldn't really take my cushion with me so that was a challenge. I have a sit/stand desk and had to spend most of yesterday standing. I hate this so much 

[Bath mum]

I feel for you so much Judith, but you are doing so well to be at work. you must be very strong to keep going with all the problems you have....I read some of your and MaryJanes earlier post yesterday....gosh what a story.....

 I am at home still unable to sit in a car or at a desk...I spend all day going from standing to lying on my front..I have now got to start with the work Occupational Health process....but I can't really get to work in the first place...a 40 minute commute by car...so, I don't knownwhat will happen.

 I actually had a good day yesterday and thought I may be turning a corner, but today isn't quite as good again....so I have to keep positive and hope....that said, Dr G's letter said I have depression....which he didn't say at the meeting...I just wonder if anyone was faced with these symptoms out of the blue, when they had a life they loved, a job and young children, then well yes it might be quite hard to remain happy!!! one day at a time I guess....and waiting for these higher doses of nortriptoline to kick in...

[Judith57]

Of course you are depressed, your life has been completely f***ed up! Dr B sent me to a CBT guy and I had to fill in a questionnaire:

Do you feel shame at what has happened to you - Yes

Do you ever contemplate suicide - Yes

Are you depressed - Yes

On and on it went and I answered yes to everything 

It did do some good talking to him though....like unburdening myself!

I have had two relatively good days, I don't work on a Friday anymore so have finished for the weekend now.

Sending you warm thoughts xxx

[calluna]

Hi all, this is my first post on this forum, brought here by someone who told me about this thread....

I've had PN for six years now - during that time I've been through meno at long last due to having to come off HRT so I do have a bit of forum relevance at least.

I do hope that you don't mind me jumping in here, but maybe some of what I've been through can help someone. This is such an awful condition and so overwhelming especially until the pain comes properly under control. 

Where I'm at, just so you know -

The PN was brought on by damage done during NHS mesh surgery to repair a pelvic prolapse. I saw Dr Greenslade on the NHS, out of area for me as I live near Bath but my GP agreed to refer me to him at Frenchay - and he in turn referred me to a surgeon at Frenchay.  Dr G has also sorted me with a med regime (topiramate, pregabalin, duloxetine) and I'm now back in the care of my lovely GP.  I'm pain-free as long as I stay within my limits.  I'm sitting to type this on my laptop - I don't sit without an appropriate cushion, I've sorted out what helps me.   All my treatment has been on the NHS.

I don't know where to start replying to people's posts - my heart goes out to you all -

But IMO that happy ending does exist. 

I'm not scuba diving (don't make me laugh) nor am I running anywhere and please don't ask me to walk up any significant hill.  The PN is not gone, it is not all better, but it is managed.  Either I am ok or I have overdone things and am lying on the sofa with my feet up - but when I am ok, then I really am ok.  We were out on our narrowboat recently, one day I worked 22 locks on my own, wonderful day!  Two days later I was paying for it and needing to rest and take a bit of tramadol but wow I did enjoy myself in the sunshine!   And I will have more days like that, I just have to learn to stop before I overdo it, ahem.

[Maryjane]

Hi thanks for re-plying Calluna........I was given your details to pass on from the person who directed you here, and was going to do so this weekend as I have been snowed under with my work and daughters wedding plans three weeks today.


Glad you are doing well.......but I no I couldn't tolerate that amount of drugs, and SSRIs are a big no no for me as the risk of making the PGAD worse is too great.

Yesterday I was completely pain free, it's just so odd......however I stood 95% of the day I reckon.....I private messages you on the other forum at the beginning of this journey, if I remember rightly as you mentioned doing too much gardening and it was causing it too glare a bit.

[calluna]

I used to have PGAD - it disappeared when the mesh was removed at Frenchay.  I know I've been really lucky.

I had to go and look up which med was the ssri - not as 'up' on all this as I used to be. It's the duloxetine if I have it right?

Anyway originally it was just topiramate and pregabalin.  But then I got v depressed and GP added sertraline, Dr G changed it to duloxetine as being likely to help with pain as well, and I think it does.  It took ages to end up with topiramate and pregabalin and get levels sorted out, we had tried just about everything else.  Once neurosurgeon has finished what he can do re TN which is a bit of an issue recently then we'll start reducing these meds if poss because as you say it is a lot. 

I remember you from the other forum!  (despite pregabalin brain haha)  not sure it can have been me that you messaged though, I am no gardener.  I do remember someone else talking about doing too much gardening and getting a flare.  But who it was, there I have no clue.

So sorry you are still stuck with PGAD, that's horrible.  Hope all goes well with the wedding plans and not surprised you are snowed under - but what fun! - hope the sun shines!

[Maryjane]

 Calluna I am not the Maryjane on the other forum.....although she actually lives about five miles from me.....I have a different name.