5 replies to this topic

[andypandy17]

Hi Guys

I don't think I have posted here before, but I am desperate for advice and help if possible.

I am 39 years old, female and had surgery 4 years ago to de-tether my spinal cord. It took over 4 years for a diagnosis, so during that time I because worse and lost the use of my bladder and now have severe weakness in my legs and a supra-pubic catheter. I now have to use a wheelchair due to the weakness caused by the delay.

To be honest I think I have had this pelvic pain since before surgery but always been too embarrassed to tell medics EXACTLY where the pain radiates to. Which is my anus, vagina and it feels like the entrance to my vagina is on fire at times. I also get a sort of sciatic pain in my bottom.

I saw one GP recently who was completely useless and just told me to take more Gabapentin (for nerve pain)

What do you guys think - is it nerve pain ?

Thanks for reading this

regards

Andypandy

[nomis]

Hi AndyPandy. Time to get over any embarrasment and take yourself seriously by hounding your doctors to trace the problem and do something about it. It might be something simple that you don't need to suffer or it might be terminal. You need to find out cos this is your life and your quality of life that you are talking about.

You mention sciatica. That could be one possibility that should be looked into. What about cancer or bad posture? Get assertive with your medical people.

[catmint]

As always wise words from nomis.

Just a thought..do you have a close friend you could confide in. Once you've actually put it into words it may not seem so daunting to speak to your GP. Perhaps she could come with you, a bit of support. Or is there a chance you could see a female doctor.

Now you've taken the first step and posted on here build on th

[andypandy17]

Thanks Guys

I did see a female GP as my usual one is a male and she really wasn't interested partly, I think because my medical history is so complicated, so she just told me to go and see my usual MALE GP - very helpful, not !

I have an appointment tomorrow with my usual GP so I will just have to bite the bullet and like you say get over my embarrassment.

Thanks for your input

much appreciated

[shady]

Hi Andypandy17, I get strange pain and sensations in those areas too. Sometimes it feels like burning and other times pressure as if my interior organs are trying to get out. This is relatively new to me.
After 4 years though, I am sure it is just nerve pain.
Not being flippant or belittling neuro pain as it drives me to the point of insanity sometimes, but I dont think its anything worse than that.
I take pregabalin (Lyrica) and am about to ask my GP to increase my dosage.
I hve every sympathy with you and hope you can find a way to reduce it. My advice would definitely be to give the Gabapentin a go.

Edited by shady, 01 June 2011 - 03:50 PM.

[andypandy17]

Hi Shady

Thanks for replying to me I do already take Gabapentin 1800mgs a day but my GP has now increased it to 3600mgs a day, so hopefully it will help in a few weeks.

They do seem to think its nerve pain but due to other medical problems I have had they need to be ruled out.

The nerve pain makes me feel suicidal at times it gets so bad in my thigh.

All the best to you and yours :-)

Andyp

UPDATE:-

I saw my usual GP (male) a few days ago and he was very understanding and referred me to a different female GP for an examination and has referred me for a scan too. He has also double my Gabapentin. He feels that its a nerve problem but is ruling out other things first.

I saw the other GP today and she was lovely. She also feels that its nerve pain but wants me to go for the scan and then will speak to my usual GP and I will be referred either to neurology or the pain clinic.

Thanks for the replies, much appreciated

Andy p