Hi all.
I'll try to do a short intro first before asking my question. In 1988 I had a C section, bikini line cut. Mid 1989 developed a large lump which turned out to be a grapefruit sized ovarian cyst. Boxing Day 1990 had a total hysterectomy through the same bikini line cut after which the surgeon told me he'd "stitched my bladder to my spine to stop it prolapsing". Was on HRT for about 10 years with no problems but came off it and in 2002 started with dreadful left side nerve pain behind iliac crest and down left abdomen. 5 neuro surgeons, 5 pain clinics, 3 weeks in hospital; numerous MRI scans, CT scans and ultra sounds later was given a tentative diagnosis of a T12 problem, stuck on oxycodone and left to get on with it. Ended up in wheelchair and now mobility scooter as I can't wheel my chair because of herniated discs in my neck. Then had a bladder prolapse - untreated. MY GP agreed that everything dropping would be pulling on adhesions and where my bladder had been stitched to the spinal ligaments and referred me to a gynae (again) which will be end of April. They were useless last time. I also have sjogrens, fibro and chronic urticaria and angioedema oh and adhesions round sigmoid colon. About 3 months ago started getting the hyper arousal symptoms and repeated bladder infections???? which I felt were nerve pain not infections at all. No one ever tested urine , just gave out antibiotics. GP just laughed at the arousal pain and said "Lucky you!" 2 weeks ago after sitting knitting for hours, got awful burning pain in left groin then suddenly after a hospital appt last week which meant sitting on a hard chair for hours I got home screaming with burning pelvic pain; pain over right sacro iliac joint, across buttocks and over whole genital area. My oxycodone isn't touching it and sitting is agony. I couldn't get a GP appointment last week so am trying again tomorrow.
My main question is- right through the last 11 years of pain I have had the most horrible pulsing feeling right along my low bowel and rectum. It feels as if the bowel is resting on an artery that pulsates but it's too painful for that. It only eases after passing gas or having a bowel movement. I noticed someone else had mentioned this feeling but I can't find the post anywhere. Does anyone get this and know what it is. It's like having something alive inside me and it's driving me crazy. Also ANY advice please on pain relief. Can't take gabapentin; it almost caused me to commit suicide years ago. Amitriptylene totally knocks me out- even 5mg and I've tried it 7 times now. I have fibro which causes hypersensitivity to a lot of drugs. I'm also severely allergic to kenalog; the steroid they use in nerve blocks and to morphine so I'm very worried about what anyone could offer me to ease this screaming pain.
Have to strop now as sitting to write this has set me of crying again.
Any advice at all PLEASE
Another new member in agony
Another new member in agony
1985 diagnosed fibro; 1990 hysterectomy with bladder suspension;2000 T12 (Maigne ) syndrome; urticaria and angioedema; sjogrens syndrome; adhesions; pelvic pain; two herniated discs in neck.
Re: Another new member in agony
Hello Poppy
First let me say welcome to the forum - it always feels a bit awful saying welcome to a place where we all have this nasty problem, but welcome nevertheless. I too am in the UK.
You've really been through the mill. I am so sorry to hear that you are in such pain and that your GP is not being, shall we say, entirely sympathetic. His response to your PGAD is just horrifying.
What helped me with PGAD was tramadol, and other people have been helped by citalopram or escitalopram - in the meantime, ice is your friend. Do go back to your doctor - or perhaps one of the other doctors at the surgery? - and talk to them about it again. Tramadol also helps with nerve pain rather more than the standard opiates - I don't know if you've had the opportunity to try it yet?
I'm really surprised at their not testing urine when suspecting a UTI, you'd think that would be routine. But you are quite right, nerve pain can feel like that. And if the antibiotic didn't make any difference, you'd think they'd question why.
Could I suggest that you try a wheelchair cushion that relieves pressure on the perineal area? There are some good ones around, I still don't sit at all without my cushion. With regard to meds - nortriptyline is much better than amitriptyline with regard to side effects. And pregabalin is much better than gabapentin for side effects - it costs rather more, so lots of GPS are reluctant to prescribe it, but it is first line treatment according to the NICE guidelines. (Hope that link works, I have not used this tinyurl thing before)
Maybe also you could ask your doctor for a referral to one of the (few) consultants in the UK who have a special interest in PN. We know of Dr Andrew Baranowski and Dr Natasha Curran in London, Dr DeMello in Manchester, and Dr Gareth Greenslade at Frenchay, near Bristol. I don't know whether you have PN, but they should be able to clarify the issues. Also, what about your local Pain Clinic? If your GP hasn't referred you there yet, then that's something else that could be very helpful.
Hang on in there, you aren't on your own.
First let me say welcome to the forum - it always feels a bit awful saying welcome to a place where we all have this nasty problem, but welcome nevertheless. I too am in the UK.
You've really been through the mill. I am so sorry to hear that you are in such pain and that your GP is not being, shall we say, entirely sympathetic. His response to your PGAD is just horrifying.
What helped me with PGAD was tramadol, and other people have been helped by citalopram or escitalopram - in the meantime, ice is your friend. Do go back to your doctor - or perhaps one of the other doctors at the surgery? - and talk to them about it again. Tramadol also helps with nerve pain rather more than the standard opiates - I don't know if you've had the opportunity to try it yet?
I'm really surprised at their not testing urine when suspecting a UTI, you'd think that would be routine. But you are quite right, nerve pain can feel like that. And if the antibiotic didn't make any difference, you'd think they'd question why.
Could I suggest that you try a wheelchair cushion that relieves pressure on the perineal area? There are some good ones around, I still don't sit at all without my cushion. With regard to meds - nortriptyline is much better than amitriptyline with regard to side effects. And pregabalin is much better than gabapentin for side effects - it costs rather more, so lots of GPS are reluctant to prescribe it, but it is first line treatment according to the NICE guidelines. (Hope that link works, I have not used this tinyurl thing before)
Maybe also you could ask your doctor for a referral to one of the (few) consultants in the UK who have a special interest in PN. We know of Dr Andrew Baranowski and Dr Natasha Curran in London, Dr DeMello in Manchester, and Dr Gareth Greenslade at Frenchay, near Bristol. I don't know whether you have PN, but they should be able to clarify the issues. Also, what about your local Pain Clinic? If your GP hasn't referred you there yet, then that's something else that could be very helpful.
Hang on in there, you aren't on your own.
Re: Another new member in agony
OMG don't even think about our local pain clinic. I've been to 5 different ones over the years; been given injections without consent or warning; been shouted at, been told it's all in my head and the final straw a few months ago at the local one where he told me I was lying about having two herniated discs in my neck- despite my MRI results and the pictures i had on disc oh and there have been NO new treatments at all in the last 10 years!
I saw my GP today (head of practice) who said it's definitely PN but was puzzled why it came on so suddenly. I didtell him I'd been having various symptoms for months but the severe pain only started last week. He suspects it's SI inflammation that has caused it and is hoping that if we can get the inflammation down, the pain will ease. I think he's wrong and that it's the PN that has caused the SI pain but we shall see. I asked about seeing Dr Mello but he wanted to wait and see if it eases off- he should try having it and waiting months. When the other problems started I waited 9 months bedridden before I even got any painkillers let alone see a consultant. He wanted to prescribe lyrica but when he looked at my records and saw how bad I was on gabapentin he decided it was too risky- I almost committed suicide on gabapentin the depression was so bad and it did absolutely nothing for the nerve pain I had then either.I went through all the drugs from paracetamol upwards and tramadol made me violently sick. After 3 weeks in hospital i was eventually put on gaba and morphine. I was allergic to the morphine so it was swapped to oxycodone which I've been on ever since and which did work on nerve pain. I have over the years tried amitriptylene and nortryptilene and both of them knocked me out. I didn't just give up after a couple of days either; I tried them for over a month. Even half a 10mg tablet made me like a zombie. Fibro can cause ultra sensitivity to drugs. So he gave me lidocaine patches today and said to try them first somewhere tough like my leg to see if I had any reaction. After 6 ours it eased my knee pain from a torn cruciate ligament beautifully but when I took it off I itched like crazy, felt dizzy and sick and had blurry eyes. I'll try again tomorrow.
Thanks for the wheelchair cushion suggestion . I did cut some memory foam I had but it's too soft.
I saw my GP today (head of practice) who said it's definitely PN but was puzzled why it came on so suddenly. I didtell him I'd been having various symptoms for months but the severe pain only started last week. He suspects it's SI inflammation that has caused it and is hoping that if we can get the inflammation down, the pain will ease. I think he's wrong and that it's the PN that has caused the SI pain but we shall see. I asked about seeing Dr Mello but he wanted to wait and see if it eases off- he should try having it and waiting months. When the other problems started I waited 9 months bedridden before I even got any painkillers let alone see a consultant. He wanted to prescribe lyrica but when he looked at my records and saw how bad I was on gabapentin he decided it was too risky- I almost committed suicide on gabapentin the depression was so bad and it did absolutely nothing for the nerve pain I had then either.I went through all the drugs from paracetamol upwards and tramadol made me violently sick. After 3 weeks in hospital i was eventually put on gaba and morphine. I was allergic to the morphine so it was swapped to oxycodone which I've been on ever since and which did work on nerve pain. I have over the years tried amitriptylene and nortryptilene and both of them knocked me out. I didn't just give up after a couple of days either; I tried them for over a month. Even half a 10mg tablet made me like a zombie. Fibro can cause ultra sensitivity to drugs. So he gave me lidocaine patches today and said to try them first somewhere tough like my leg to see if I had any reaction. After 6 ours it eased my knee pain from a torn cruciate ligament beautifully but when I took it off I itched like crazy, felt dizzy and sick and had blurry eyes. I'll try again tomorrow.
Thanks for the wheelchair cushion suggestion . I did cut some memory foam I had but it's too soft.
1985 diagnosed fibro; 1990 hysterectomy with bladder suspension;2000 T12 (Maigne ) syndrome; urticaria and angioedema; sjogrens syndrome; adhesions; pelvic pain; two herniated discs in neck.
Re: Another new member in agony
Hi Poppy
Welcome to PudendalHope sorry to hear of your problems. I have emailed you in response to yours.
Its so hard to find medication that has no side effects, lidoderm can cause drying of the eyes and an upset tummy. This wears off for me after using them for a few times.
Ice is your best friend right now....you cant overdose on that and there are no side effects!
Try if you can to avoid sitting on anything hard or if at all if possible. I bought a memory foam cutout cushion in a disability shop in the UK and it helps a lot when I do have to sit.
There are lots of threads here about sitting etc and if you need to print out some of our information pages to give to your GP or other medical person pleae feel free to do so.
if you have any questions etc please feel free to ask, we will try our best to help you.
Welcome to PudendalHope sorry to hear of your problems. I have emailed you in response to yours.
Its so hard to find medication that has no side effects, lidoderm can cause drying of the eyes and an upset tummy. This wears off for me after using them for a few times.
Ice is your best friend right now....you cant overdose on that and there are no side effects!
Try if you can to avoid sitting on anything hard or if at all if possible. I bought a memory foam cutout cushion in a disability shop in the UK and it helps a lot when I do have to sit.
There are lots of threads here about sitting etc and if you need to print out some of our information pages to give to your GP or other medical person pleae feel free to do so.
if you have any questions etc please feel free to ask, we will try our best to help you.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Another new member in agony
Thank you so much for your email Amanda; most helpful especially the ice.
I tried half of one of the lidocaine patches yesterday on my knee where I could see it just to be sure i had no nasty effects. Yes I felt sick; yes I itched but it wasn't bad. I hope it doesn't cause dry eyes as I already have real problems with sjogrens syndrome.
However when I used the other half of the patch today I couldn't get it off. Seriously it was stuck so hard it was tearing my skin. When it did finally come off it left glue all over me which took 15 minutes of soap and scrubbing to remove. Is that normal? It didn't stick so bad yesterday and just peeled off without problem. Is it perhaps because the cut patch was left overnight although sealed in the bag? Does it get stickier once it's been cut? I didn't leave it anywhere hot or moist. It was in a cupboard. I honestly thought I was going to have to go to the hospital to get them to get it off it was stuck so fast. It took all my strength with husband pulling the skin the opposite way to get it off.
I tried half of one of the lidocaine patches yesterday on my knee where I could see it just to be sure i had no nasty effects. Yes I felt sick; yes I itched but it wasn't bad. I hope it doesn't cause dry eyes as I already have real problems with sjogrens syndrome.
However when I used the other half of the patch today I couldn't get it off. Seriously it was stuck so hard it was tearing my skin. When it did finally come off it left glue all over me which took 15 minutes of soap and scrubbing to remove. Is that normal? It didn't stick so bad yesterday and just peeled off without problem. Is it perhaps because the cut patch was left overnight although sealed in the bag? Does it get stickier once it's been cut? I didn't leave it anywhere hot or moist. It was in a cupboard. I honestly thought I was going to have to go to the hospital to get them to get it off it was stuck so fast. It took all my strength with husband pulling the skin the opposite way to get it off.
1985 diagnosed fibro; 1990 hysterectomy with bladder suspension;2000 T12 (Maigne ) syndrome; urticaria and angioedema; sjogrens syndrome; adhesions; pelvic pain; two herniated discs in neck.
Re: Another new member in agony
If you have a problem with adhesive from a plaster stuck to the skin, I've found that oil is usually the best thing to remove it. I have some dry oil spray from Avon bought specifically for this.
But I have no idea why your lidocaine plaster stuck like that - I've never had that happen, and I cut bits of the patches all the time and put the rest back in the bag. I haven't noticed it getting stickier once cut. Something to mention to the pharmacist perhaps?
So sorry you have had such a bad experience at your local pain clinic, I know I've been very lucky with mine.
But I have no idea why your lidocaine plaster stuck like that - I've never had that happen, and I cut bits of the patches all the time and put the rest back in the bag. I haven't noticed it getting stickier once cut. Something to mention to the pharmacist perhaps?
So sorry you have had such a bad experience at your local pain clinic, I know I've been very lucky with mine.
Re: Another new member in agony
Poppy
The glue on versatis versus Lidoderm is different....i dont know why? Normally if I have a shower with the patch on it peels off without the tension and pain...soaking it can help loosen the glue.
If it helps then thats ok, maybe if the glue is left behind then thats not a big problem....The main thing is to not use them without a 12 hour gap between.
The glue on versatis versus Lidoderm is different....i dont know why? Normally if I have a shower with the patch on it peels off without the tension and pain...soaking it can help loosen the glue.
If it helps then thats ok, maybe if the glue is left behind then thats not a big problem....The main thing is to not use them without a 12 hour gap between.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: Another new member in agony
You folks on here are wonderful. Thank you so much for your help. The pain has reduced very slightly now that the SI joint isn't as sore and I can now perch opn one side of my bottom for 2 or 3 minutes just to write this. Believe me that glue is strong. I will bathe it off in future LOL. I did leave 12 hours between use but will remember to always do that.
1985 diagnosed fibro; 1990 hysterectomy with bladder suspension;2000 T12 (Maigne ) syndrome; urticaria and angioedema; sjogrens syndrome; adhesions; pelvic pain; two herniated discs in neck.
Re: Another new member in agony
I spoke too soon. Am just back from A&E. What a fiasco.
I woke up at 4am in terrible pain low down in my sacral spine, tried to turn over and realised I couldn't feel my right leg at all. The whole leg was buzzing and I had pain in my calf muscle but no feeling except it felt like there was a tennis ball or something under my foot and my ankle was stinging. When I tried to stand it wouldn't hold me up. I rang 999 and that's when the fiasco started. Despite telling the operator to be sure the ambulance did NOT come down our lane as it was too narrow; they failed. The ambulance got down then couldn't turn round or reverse out because he had to fold his mirrors in. He had my husband move our cars and tried to turn in our drive which is impossible; couldn't get past the roof of the next house down where there is turning and it took them 40 minutes reversing 2 inches at a time scraping the side with bushes to be able to finally reverse out onto the road. AT A&E which is 45 minutes and an £18 taxi ride away a very young nurse came and stood by me with a pillow and didn't speak. The whole time until a doc arrived she never said a word; just smiled even though I was writing around in pain. When the quite senior doctor arrived he didn't examine me at all. He asked when it started so I told him about the pudendal pain and this new dead leg. He just said "It's sciatica" He then suggested various painkillers; anti inflammatories which I must not take, muscle relaxants and cocodamol. He said I needed an MRI "But we don't do that here in A&E and there's no point doing an x ray", I should take diazepam "but we don't have that here any more and it's another two hours until the pharmacy opens", gave me a box of cocodamol and said "You can go now". Oh he suggested I get the diazepam from the on call doctor service when I got home.Have you ever tried tat? It takes them 2 hours for a nurse to phone you, another hour to get a doctor to phone you who then says can you come down to the health centre?
How? I'm miles from home, have no wheelchair or scooter, just crutches which were killing my shoulders and the herniated discs in my neck , I can't sit in a car seat and can't support myself on my right leg. It's 4 bus journeys to my house.
Thankfully my husband who is deaf had thought to move one of the phones next to his bed and he woke up and heard me ringing and had to drive the 45 minutes to come an get me while I, having been discharged, managed to find a wheelchair outside in the ambulance bay that I could lie across until he arrived at 8am.
I woke up at 4am in terrible pain low down in my sacral spine, tried to turn over and realised I couldn't feel my right leg at all. The whole leg was buzzing and I had pain in my calf muscle but no feeling except it felt like there was a tennis ball or something under my foot and my ankle was stinging. When I tried to stand it wouldn't hold me up. I rang 999 and that's when the fiasco started. Despite telling the operator to be sure the ambulance did NOT come down our lane as it was too narrow; they failed. The ambulance got down then couldn't turn round or reverse out because he had to fold his mirrors in. He had my husband move our cars and tried to turn in our drive which is impossible; couldn't get past the roof of the next house down where there is turning and it took them 40 minutes reversing 2 inches at a time scraping the side with bushes to be able to finally reverse out onto the road. AT A&E which is 45 minutes and an £18 taxi ride away a very young nurse came and stood by me with a pillow and didn't speak. The whole time until a doc arrived she never said a word; just smiled even though I was writing around in pain. When the quite senior doctor arrived he didn't examine me at all. He asked when it started so I told him about the pudendal pain and this new dead leg. He just said "It's sciatica" He then suggested various painkillers; anti inflammatories which I must not take, muscle relaxants and cocodamol. He said I needed an MRI "But we don't do that here in A&E and there's no point doing an x ray", I should take diazepam "but we don't have that here any more and it's another two hours until the pharmacy opens", gave me a box of cocodamol and said "You can go now". Oh he suggested I get the diazepam from the on call doctor service when I got home.Have you ever tried tat? It takes them 2 hours for a nurse to phone you, another hour to get a doctor to phone you who then says can you come down to the health centre?
How? I'm miles from home, have no wheelchair or scooter, just crutches which were killing my shoulders and the herniated discs in my neck , I can't sit in a car seat and can't support myself on my right leg. It's 4 bus journeys to my house.
Thankfully my husband who is deaf had thought to move one of the phones next to his bed and he woke up and heard me ringing and had to drive the 45 minutes to come an get me while I, having been discharged, managed to find a wheelchair outside in the ambulance bay that I could lie across until he arrived at 8am.
1985 diagnosed fibro; 1990 hysterectomy with bladder suspension;2000 T12 (Maigne ) syndrome; urticaria and angioedema; sjogrens syndrome; adhesions; pelvic pain; two herniated discs in neck.
Re: Another new member in agony
Poppy
Wow Im sorry to hear of your A & E experience, I can only hope that the medications given to you will help you...co codamol is a great drug which is short lived so wont have long lasting effects.
I hope that you can relax and try to use ice etc to chill out to recover from the experience. Many A & E doctors only spend a few hours in their many years of training delaing with pain so they dont understand chronic pain, they are used to dealing with patients who have acute pain which is so different.
Hang in there and try to get some rest in whatever form that takes.
Wow Im sorry to hear of your A & E experience, I can only hope that the medications given to you will help you...co codamol is a great drug which is short lived so wont have long lasting effects.
I hope that you can relax and try to use ice etc to chill out to recover from the experience. Many A & E doctors only spend a few hours in their many years of training delaing with pain so they dont understand chronic pain, they are used to dealing with patients who have acute pain which is so different.
Hang in there and try to get some rest in whatever form that takes.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.