update

[calluna]

Hello again Andrea

I think that if you've just been tested to see if there is a UTI and it was all clear, then you can indeed set your mind at rest.

The body needs to heal, to let things settle, to find where the new normal is.... and it isn't a quick process. It seems to me that with each surgery, recovery takes longer than it did the previous time. And please don't forget - you've had a lot of work done. Mr Dixon did a lot of sorting out. Just do what you can - pace yourself (you know about this?) - schedule rests for yourself and don't skip them. Also schedule some gentle exercise, necessary otherwise you will get physically weak surprisingly fast. Has someone been through all this pain management stuff with you? I would recommend this book, if you haven't read it already - Coping Successfully with Pain ( it is £6.74 from Amazon at the moment including delivery) Very very worthwhile reading this, I would recommend it to anyone who has to deal with ongoing pain.

Now - I don't know if you've talked to anyone about being so down? Because if you haven't, then I'm going to suggest that you do. I was lucky enough to be referred (by my GP) to see a psychologist (for free, and only a couple of weeks to wait for an appointment) when I became depressed, and she really helped me, both with the depression and with pain management. In fact I think she helped me more than any single med. I would wish the same for you.

With regard to your relationship with your husband, please don't do anything without talking it through very thoroughly indeed, both separately and together, with someone uninvolved. RIght now, you are both unwell and you both need each other's support. And if you are feeling low in yourself, then it is hard to think straight in the first place. This goes for both of you.

Please, seek help from your GP tomorrow about feeling so down. And I hope that today goes better than yesterday did.

[chillijava]

i have just ordered the book you recommended and i am hoping this will help with the pain, i think the main problem for me is that i cant find any meds to help me that dont give me bad side effects even at low doses and as you know standard painkillers dont do anything. i wish there was something i could take to help, anyone have any ideas


andrea

[calluna]

Are you using ice packs? They do help.

[chillijava]

hi yes an ice pack is continually stuck to my nether regions.
just had a very strange conversation with dr greenslades secretary, she is seeing dr greenslade tonight so will get back to me then, but the strange thing is that she said that mr dixon hadnt finished his work with me yet, and that a letter from him had been sent to me, but i have not received it yet.
when i last saw him i said how dr g was going to do a nerve block but had decided to wait until i saw mr dixon later that day, mr dixon did say it was worth trying but also mentioned decompression surgery to the pn nerve and said he would talk to dr g to see the next way forward. if this is what they have decided to do how would they know where the nerve is trapped, if it is, as i have never had an mri or nerve block, can mr dixon be so sure through the surgery he has already done and also internal exam, by the way he really hit the spot when i saw him last, boy was it painful, that it is the pn nerve, really confused now

andrea

[helenlegs 11]

I would think the person who would be able to asses your situation the best would be Mr Dixon (and Dr Greenslade, with his post surgery feedback) After all Mr Dixon knows what is going on in there, he's actually seen it. From what Calluna also reports the two do seem to be a good diagnostic team.
I would say that the way you reacted in the examination would have given Mr Dixon more information about your pudendal nerve. That the nerve pain from slight pressure does show a problem there.
I've never had an internal exam but react like this (with sound effects) every time when my pudendal nerve is squeezed on a skin roll test on the RH side but would not react the same with the left. It is such a sharp, instant and particular pain I don't think it can be mistaken for anything else.
I know mine goes in a line which I can find fairly easily. However I would still wonder if there is any inflammation from your surgery that may still be influencing the nerve and putting a little more pressure on it?
I think it is wonderful that this team are still very concious of your problems and are assessing them for your future.
Helen

[Rosemary]

Hope that you are doing better today Andrea.

Are you considering Calluna's suggestion of the psychologist ? I have been referred by my gp to see someone linked to the pain management clinic and the appointment has come through quickly to start soon.

love

Rosemary x

[chillijava]

not doing too good at the moment, i have definately got a good flare, how long do they normally last? the burning pain starts at my vagina and goes all the way up to the clitoral area and it makes me feel like i want to wee all the time, its really painful and horrid and i have also got stabbing pains in the clitoral area, i was very silly when last week i squatted it wasnt for long only a few minutes but i cant think of anything else that could have caused this and i am hoping its not going to be in flare forever


andrea