I have my answers! !

[samanthac]

Today was the eagerly anticipated pain clinic appointment. and I have my answers. It is nerve damage to the two nerves either side of the womb. I'm having steroid injections in both of them. she told me it's got a limited chance of working. had anyone else had this experience?

[Poppy26]

Glad hopefully you have found some answers· I initially had several steroid injections last year as I was told nerve damage but sadly didn't help then finally got a diagnosis of pne· What are your symptoms and how are you feeling? Really hope the injections offer you some relief and you get much needed answers

[samanthac in reply to Poppy26]

Thanks I have just pain from my pelvic bone to my belly button she said that's my nerves shouting so the pains diffused. she did say the injectiins don't always work but im at that point where I'll do anything

[Poppy26]

I'll keep everything crossed for you hopefully the injections will be effective· Good luck

[sammyannc]

thanks, i am both nervous and excited, i found out today i am possibly losing my job this week due to my health so i really hope it works cause everything sucks right now i need good news,

[xweeta]

hello samanthac,

I did not follow your case here in the forum, but I received this post in my email.

Can I ask you how did you found out that you have nerve damage? through some image exam?

do you know exactly which are the nerves and why do you have that damage?

do you feel sharp pain in your belly (laterals) when you get sexually aroused (not related to penetration)?

thank you

[sammyannc in reply to xweeta]

HI

I went to Pain Clinic at my local hospital and saw the pain specialist, as all my xrays and ultrasounds have only ever shown a tiltied pelvis and no other real issues she just needed o do a physical exam to find wherre exactly my pain was, it hurts the most just above my hips in the same spot on both sides and she said these were the damaged nerves. the pain is constant and not resally painful when aroused but just worse if i move around!The damage can be done in many ways, a lot like spraining something apparently.

[Poppy26]

Nerve damage/entrapment is very difficult to see via mri, ct, ultra sound scan· I went through a similar thing saw a pain specialist in hospital who happily gave me a series of pelvic steroid injections in different places but sadly just caused a flare up· The site of my pain though was different to yours so fingers crossed you will have more success· Is the person you are seeing a nerve specialist or a general pain manager? Sadly there are very few experts in pelvic nerve pain in the UK

Good luck and sorry to hear about your job

[sammyannc]

thanks for the support. i am just trying to keep my chin up and think sod it ha ha Access to work came in to my work this week and are doing things to help me so fingers crossed infdeed!

Dr forey is a pain specialist not a nerve one. to be honest she was pretty sure the injections may not work but as you probably feel, i will try just about anything. i did a google of hre and she lectures for the british pan society so i am hopefull thats an extra good sign!!

[Poppy26]

Are you uk based? I am uk based and after a similar story to you seeing pain specialists , gynocologists, gps rec through this site and the internet I found a pelvic nerve specialist and finally had a diagnosis and surgery to help. I'm no expert but usually general pain specialists don't have the specific expertise to help· You could be lucky though and might strike gold and wish you all the best

Sounds positive about your job so stay positive

[Eggcustard in reply to Poppy26]

Hi, I have nerve based pain too and have been having problems at my pain management clinic as they don't seem to understand. Can I ask where you went and who your pelvic pain specialist is please?? Please please reply, I am getting desperate!!!!!

[Poppy26 in reply to Eggcustard]

Hi I saw mr Wong in spire cardiff first and he gave a provisional diagnosis of pudendal nerve entrapment. He sent me immediately for ct guided nerve blocks in Frenchay hospital in Bristol. I then saw mr wongs partner mr Greenslade for a consultation and ultra sound. He gave a definite diagnosis of PNE bilateral and I had surgery 5 weeks later in Bristol and mr Wong was the surgeon. You need to see a pudendal nerve specialist. Think there's a dr in Manchester one in London and the Bristol team. Good luck

[sammyannc]

thanks i have just had the date for the nerve injections and its A WEEK TOMOROW bit freaked aout as i thought it would be longer!

[Poppy26]

Glad you've had a date and don't panic it will be fine and just think it could make a huge difference! The very best of luck

[sammyannc]

thanks poppy!! last quiestion: i am needle phobic and last eyar i have a guided injection through my heel and man alive it freaking hurt, is this gonna be the same? i just think if i know what i am facing i can survive ha ha

[Eggcustard]

Hi, I have had steroid and anaesthetic injections into my genito femoral nerve for pelvic and thigh pain. Initially I think the pain was a bit worse and I swore I wouldn't have it done again, but then I did find I could move around more easily than normal for about 3 weeks. At the time I though it didn't work very well until the pain returned full on. It is definitely worth a try and I hope it works out for you. I think 4 nerves might be involved in my pain so that might be why it didn't work so well for me. Please post how you get on, hope you aren't feeling too bad today xx

[Poppy26]

Needles are not pleasant however it will be over quickly and pain shouldn't last. Good luck x

[Poppy26]

How did you get on with the injections?

[sammyannc in reply to Poppy26]

Hi

poppy!! it went well actually, it was 'bilatral abdomminal wall steroid injections somthing something ha ha. i am sore now but more because someone stuck five needles through my fat and muscles rather than it had a negative effect. however i am not experiencing any benefit from it yet but bthe dr didnt think it was going to do much as she just wanted to give it a chance. with work i am just trying to learn to relax. if im upset its not gonna make me feel better and i wont be performaing at my best and there is no point in worrying about things out of my control!!

thanks

[sammyannc]

do you know if this is menat to have an immediate effe ct or will it take timne? i am no better

[Poppy26]

I think steroid injections can take up to a week to see any difference but I'm no expert? How are you feeling now?

[sammyannc]

thanks for asking poppy, the outer soreness and bruises have gone down but the pains the same, i started the increased dose of pregablin today so hopefully thats gonne help, i alos have nerve problems in my neck and back so hoiping for an overall benefit,. I am also astarting slimming world this week to try and get some of this fat off as they keep saying its probably not helping,

[Poppy26]

Good luck with everything. I friend of mine has last 20 lbs going to slimming world last two months

[Poppy26]

How are you feeling now after the injections, has it helped with the pain?

Hi eggcustard fab name, how are you have you managed to see anyone that can help?

Take care both

[samanthac in reply to Poppy26]

i am doing quite well (touch wood) i think i may be the 1% it helps, as well as changing my does of lyrica to 600mg a day has help, its only a little better but given how i was a little makes a huge difference. i have lost 2 pounds as well so feeling motivated.and positive for the future, things are going well with work as well. the pain clinician talked about the 'upward spiral' i will be in once she starts to help me and i think i can see it happenig, i am feeling like i can be me again. i know the pain clinician said it will take years of work and i'll never fully be pain free becasue the damage cant be repaired just managed. I just have to have a new mind set that fits with it !!

[samanthac]

I fogto to ask how you are?

[Poppy26]

Really lovely to hear you so positive about everything, fab news! I'm ok thanks still managing a gentle swim several times a week but still having flare ups. Like yourself though I'm positive that one day I'll be free from this condition and back disco dancing!!!

Keep your spirits up and well d own on weight loss, take care