Hi Everyone here.
I have suffered with terrible burning pain for a year now. It started very suddenly. I didn't have any accident. I can maybe just blame guilty my surgery from 2 years back (anal fissure) and prolonged sitting. Maybe my anatomy is the cause. I went through a few GP, sexual health clinics, dermatologis etc. My doc at sexual health center diagnosed me firts with bad case of vulvodynia but after 2 visit she decided it's more obvious that I have PN. After reading some articles I am pretty sure it's PN - terrible burning pain when sitting, getting better but still present when standing - localised around vulva, rectum, buttocks and inner sides of tighs. I have also developed a lot of back pain from being tense and sitting/standing in unnatural positions. Just after a year my pain has grown so much I am considering quitting my full time job (graphic designer) or at least trying to convince my boss to make it part time for me (4h max daily). I am totally depressed and in constant pain. On one hand don't want to lose my job but on the other I don't want to make my nerve worse. Almost every day I get back from work knockd out and crying.
I went through MRI scan which came out normal-however I have some discs in lower back worn out (radiologys said this is nit the cause of pelvic pain).I am currently on amitryptyline which doesn't help and hoping to get a referal to Dr Baranowski (london). All the referals take so long but I am already in such a bad state physically and mentally. I have no one to ask for advice. I will appreciate every suggestion. What do I do next?
new with PN pain. What to do?
Re: new with PN pain. What to do?
Welcome Bunny,
A few ideas although I am in U.S.not U.K. You can look through the UK section for info., the home page list Physiotherapists and FAQs about medicines that can help and things to avoid ( bending, lifting, stretching amd sitting). So maybe see a physio and see if they can loosen up tight muscles and your GP can provide a different drug like Gabapentin or Lyrica. There is also a letter to professionals in the FAQs that might help the GP understand and support you. Part time might be good if you can get that or work at home? Best of luck. Someone from the UK I am sure can give you some more local info but I think Baranowski knows about PN but you don't need to wait to see him to get the other things started.
Janet
A few ideas although I am in U.S.not U.K. You can look through the UK section for info., the home page list Physiotherapists and FAQs about medicines that can help and things to avoid ( bending, lifting, stretching amd sitting). So maybe see a physio and see if they can loosen up tight muscles and your GP can provide a different drug like Gabapentin or Lyrica. There is also a letter to professionals in the FAQs that might help the GP understand and support you. Part time might be good if you can get that or work at home? Best of luck. Someone from the UK I am sure can give you some more local info but I think Baranowski knows about PN but you don't need to wait to see him to get the other things started.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: new with PN pain. What to do?
Hi Janet,
Thank you for replying me.
As my pain has been increasing quite quickly for some reason (probably prolonged siting at work) and spread to other areas of my body, such as lower back and buttocks, anus, leg... I became very miserable. It has also influenced badly my relationship. I have read, I believe, all the information this page and many posts as well, and trying to figure out what to do, because it's hard to rely on GP's knowledge so thanks for your advices. Do you think I would need to find a special physio with a knowledge of that particular area or it can be any physio? I have read of some cases that physio actually made the pain worse. I am very scared after reading those posts because people with these neruropathies tend to suffer more and more ever undergoing various procedures (eg. nerve blocks, surgeries, physiotherapy). I would really like to believe that everthing will be fine. I have always believed I have quite high limit of pain but the fact that it's constant makes me really loose my senses at times.
I think I will try to work less hours and just hope that sitting even 4 hours a day won't make my verve more inflammed.
Thanks again
Any more advices from members will be more than welcome
Thank you for replying me.
As my pain has been increasing quite quickly for some reason (probably prolonged siting at work) and spread to other areas of my body, such as lower back and buttocks, anus, leg... I became very miserable. It has also influenced badly my relationship. I have read, I believe, all the information this page and many posts as well, and trying to figure out what to do, because it's hard to rely on GP's knowledge so thanks for your advices. Do you think I would need to find a special physio with a knowledge of that particular area or it can be any physio? I have read of some cases that physio actually made the pain worse. I am very scared after reading those posts because people with these neruropathies tend to suffer more and more ever undergoing various procedures (eg. nerve blocks, surgeries, physiotherapy). I would really like to believe that everthing will be fine. I have always believed I have quite high limit of pain but the fact that it's constant makes me really loose my senses at times.
I think I will try to work less hours and just hope that sitting even 4 hours a day won't make my verve more inflammed.
Thanks again
Any more advices from members will be more than welcome
Re: new with PN pain. What to do?
Hi bunny
First, welcome to the forum, and I'm really sorry to hear that you are having such difficulties. I'm in the UK too.
There are several things that I'd like to suggest. I know you've already had a good read through the homepage - there is a huge amount of useful information there, please do keep going back to it.
For immediate pain relief, please don't forget ice. For many of us it is our best friend. It seems such a simple thing, I could hardly believe it at first, how it could help so much. If you don't have a gel pack, use a packet of frozen peas or something similar, and wrap it in an old tea towel - you don't want the plastic actually touching your skin or you may get frostburn, and you don't need that adding to your problems. Then just put it where the pain is. At first it hurts - and then it goes numb, and that's bliss. You can use icepacks for 10-15 minutes in every hour.
If amitriptyline isn't helping, then please go back to your doctor and tell her. Amitriptyline is only the first of many medications that can be tried, there is lots more that your doctor can do to help. You might find this leaflet informative - in fact you might want to print it out. NICE quick reference guide, Neuropathic Pain These are the guidelines that your GP will be following (hopefully!) - and it is kind of reassuring seeing it all in a nice flowchart. Well, I think so, anyway.
Do please also ask for a referral to one of the consultants who specialise in PN. Yes, there will be a waiting list - it is a good idea to get on it asap!
Very important - you need to stop making your pain worse, and that means avoiding sitting as much as possible. I really do mean that!
With regard to your job - have you spoken to your employer about the possibility of a standing workstation? - or have you tried any of the cushions that are available? (I found one that worked for me, within limits.) Most employers are happy to help in situations like this and will go out of their way to accommodate the needs of a valued employee who has developed a health problem - I'm sure they certainly won't want to lose you.
Please don't worry about what might lie in the future, take it one day at a time.
Right now - avoid sitting like the plague. (Honestly - if it hurts, don't do it, because it will be making things worse. It isn't rocket science.)
Use ice to manage the pain. (Well, when you can. It isn't the most convenient of options.)
See your doctor and tell her that the amitriptyline isn't doing it for you, and get that referral underway.
Talk to your employer about how you can sort things out at work until your pain is under control - because it will be under control once you get the right meds.
And just be kind to yourself for a bit. Maybe you could do with some time off work?
First, welcome to the forum, and I'm really sorry to hear that you are having such difficulties. I'm in the UK too.
There are several things that I'd like to suggest. I know you've already had a good read through the homepage - there is a huge amount of useful information there, please do keep going back to it.
For immediate pain relief, please don't forget ice. For many of us it is our best friend. It seems such a simple thing, I could hardly believe it at first, how it could help so much. If you don't have a gel pack, use a packet of frozen peas or something similar, and wrap it in an old tea towel - you don't want the plastic actually touching your skin or you may get frostburn, and you don't need that adding to your problems. Then just put it where the pain is. At first it hurts - and then it goes numb, and that's bliss. You can use icepacks for 10-15 minutes in every hour.
If amitriptyline isn't helping, then please go back to your doctor and tell her. Amitriptyline is only the first of many medications that can be tried, there is lots more that your doctor can do to help. You might find this leaflet informative - in fact you might want to print it out. NICE quick reference guide, Neuropathic Pain These are the guidelines that your GP will be following (hopefully!) - and it is kind of reassuring seeing it all in a nice flowchart. Well, I think so, anyway.
Do please also ask for a referral to one of the consultants who specialise in PN. Yes, there will be a waiting list - it is a good idea to get on it asap!
Very important - you need to stop making your pain worse, and that means avoiding sitting as much as possible. I really do mean that!
With regard to your job - have you spoken to your employer about the possibility of a standing workstation? - or have you tried any of the cushions that are available? (I found one that worked for me, within limits.) Most employers are happy to help in situations like this and will go out of their way to accommodate the needs of a valued employee who has developed a health problem - I'm sure they certainly won't want to lose you.
Please don't worry about what might lie in the future, take it one day at a time.
Right now - avoid sitting like the plague. (Honestly - if it hurts, don't do it, because it will be making things worse. It isn't rocket science.)
Use ice to manage the pain. (Well, when you can. It isn't the most convenient of options.)
See your doctor and tell her that the amitriptyline isn't doing it for you, and get that referral underway.
Talk to your employer about how you can sort things out at work until your pain is under control - because it will be under control once you get the right meds.
And just be kind to yourself for a bit. Maybe you could do with some time off work?
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: new with PN pain. What to do?
Hi bunny, welcome from me to. I am also in the UK and agree totally with what calluna and janet have said.
Step no. one is to realise that you now have help from this forum and you are not alone in this.
No. two is to get some better medication in place. The NICE guidelines that calluna posted above show what else is available and it is often a combination of antidepressant and anti seizure drug that helps nerve pain. I take duloxetine and lyrica for instance, with 'normal' pain relieving tramadol/co-codamol when needed .
Make an appointment as soon as you can now that nerve pain has been identified, hopefully a referral to a PN Dr will be straight forward although there is always a huge wait on the NHS unfortunately (as you know)
Some people have cut that wait down by going for a private consultation just to get 'the diagnosis', then transfer to NHS afterwards, it's usually straight forward, if you are interested in going that way but Dr Baranowski is more expensive than others.
Obviously you have to factor cost, distance and travel into the equation.
Please only go to a PN aware pelvic physiotherapist, but as suggested do go.
I'm really just repeating what has been said, it's all great advise; standing work station, ice.
Try not to worry, you now have these additional 'tools' that can help tremendously and if you can get to a manageable compromise with work I know that things will improve for you.
Take care,
Helen
Step no. one is to realise that you now have help from this forum and you are not alone in this.
No. two is to get some better medication in place. The NICE guidelines that calluna posted above show what else is available and it is often a combination of antidepressant and anti seizure drug that helps nerve pain. I take duloxetine and lyrica for instance, with 'normal' pain relieving tramadol/co-codamol when needed .
Make an appointment as soon as you can now that nerve pain has been identified, hopefully a referral to a PN Dr will be straight forward although there is always a huge wait on the NHS unfortunately (as you know)
Some people have cut that wait down by going for a private consultation just to get 'the diagnosis', then transfer to NHS afterwards, it's usually straight forward, if you are interested in going that way but Dr Baranowski is more expensive than others.
Obviously you have to factor cost, distance and travel into the equation.
Please only go to a PN aware pelvic physiotherapist, but as suggested do go.
I'm really just repeating what has been said, it's all great advise; standing work station, ice.
Try not to worry, you now have these additional 'tools' that can help tremendously and if you can get to a manageable compromise with work I know that things will improve for you.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: new with PN pain. What to do?
Thanks a lot guys.
It means a lot to me that you replied and gave me all those advices.
I have strong feeling that sitting full time is not an option for me. I have also some problem with my lower back and (geez -all off sudden) hip joints pain so standing is becoming hard for me too. All probably because I try various positions just to avoid sitting. I think I will try working 4h 5 times a week. I have bought some time ago a cushion made by Togo. Sometimes I am not sure if that works at all. Thought it work at the beginning but mah e it's not it after all. I'll probably experiment some more with cushions. Do you girls have sitting position at work?
Do you have some physio in uk (I live in london but can travel if necessary) to help me?
And if I need at some point a private consultation with dr Baranowski do I contact him at King Edwrd hospital or do you have some other suggestion?
I know that it's a lot of questions but you are such a good source of information and I have no one to ask.
Thanks and all the best for you all
It means a lot to me that you replied and gave me all those advices.
I have strong feeling that sitting full time is not an option for me. I have also some problem with my lower back and (geez -all off sudden) hip joints pain so standing is becoming hard for me too. All probably because I try various positions just to avoid sitting. I think I will try working 4h 5 times a week. I have bought some time ago a cushion made by Togo. Sometimes I am not sure if that works at all. Thought it work at the beginning but mah e it's not it after all. I'll probably experiment some more with cushions. Do you girls have sitting position at work?
Do you have some physio in uk (I live in london but can travel if necessary) to help me?
And if I need at some point a private consultation with dr Baranowski do I contact him at King Edwrd hospital or do you have some other suggestion?
I know that it's a lot of questions but you are such a good source of information and I have no one to ask.
Thanks and all the best for you all
Re: new with PN pain. What to do?
Bunny,
The seating section has many cushion ideas. Ultimately ( now post surgery) I got a roho custom cushions that is usually used with wheelchair and a new wheelchair since I also have chronic bunion foot pain. This is keeping me working as I have a sitting position at work. I still only work 6 or 7 hour days but I only have a few years until retirement. I checked the PT list off the homepage and the "UK and Ireland" section listed Edinburgh and Dublin physios. Dublin is Maeve Whelan I have heard most and under her name were some URLs that may list others such as UK? Please make sure if you try these links to ask if they are PN pelvic aware. The other pains you have are typical the whole core seems to hurt or pain moving around for hips and low back. Not that we need all these extras! I always forget ice and glad to see the others are filling in the gaps and should help with your other UK specific questions. Take Care,
Janet
The seating section has many cushion ideas. Ultimately ( now post surgery) I got a roho custom cushions that is usually used with wheelchair and a new wheelchair since I also have chronic bunion foot pain. This is keeping me working as I have a sitting position at work. I still only work 6 or 7 hour days but I only have a few years until retirement. I checked the PT list off the homepage and the "UK and Ireland" section listed Edinburgh and Dublin physios. Dublin is Maeve Whelan I have heard most and under her name were some URLs that may list others such as UK? Please make sure if you try these links to ask if they are PN pelvic aware. The other pains you have are typical the whole core seems to hurt or pain moving around for hips and low back. Not that we need all these extras! I always forget ice and glad to see the others are filling in the gaps and should help with your other UK specific questions. Take Care,
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: new with PN pain. What to do?
Thank you Janet,
I will definetely look at roho cushion since you've mentioned it. I have already looked at cushion section of forum but it' hard to decide. Especially if some of them are quite expensive but can end up not bringing any relief to some other person.
I have looked at pelvic pain physiotheraphy http://pelvicphysiotherapy.com/manual-therapy and there are some physio near me, even in London. I will probably ring them first if they are PN aware. I have already decided to try only 4 hours a day. Hopefully that won't be too much for me - the last thing I want to be left without any income.
I have also read that even if I have PN and have problems working I am not eligible to get any benefits. I know that it's not widely recognized illness but it's being treated by doctors, so how can this be so hard to get it?
Is that true that the nerve get damaged more if I continue to sit? Or is it that the nerve is just more sensitive to pain. My GP told me it it's just more sensitive but I have read it becomes more entrapped or damaged.
Thanks a lot for your support. It means a lot.
Take care
I will definetely look at roho cushion since you've mentioned it. I have already looked at cushion section of forum but it' hard to decide. Especially if some of them are quite expensive but can end up not bringing any relief to some other person.
I have looked at pelvic pain physiotheraphy http://pelvicphysiotherapy.com/manual-therapy and there are some physio near me, even in London. I will probably ring them first if they are PN aware. I have already decided to try only 4 hours a day. Hopefully that won't be too much for me - the last thing I want to be left without any income.
I have also read that even if I have PN and have problems working I am not eligible to get any benefits. I know that it's not widely recognized illness but it's being treated by doctors, so how can this be so hard to get it?
Is that true that the nerve get damaged more if I continue to sit? Or is it that the nerve is just more sensitive to pain. My GP told me it it's just more sensitive but I have read it becomes more entrapped or damaged.
Thanks a lot for your support. It means a lot.
Take care
Re: new with PN pain. What to do?
Bunny,
Good to see you have a lead on physio. I also use the cheapest cushion idea which is gardening kneeling cushions that are placed about 3 inches apart and your it bones rest on the edges of the cushions and lift your center so it does not hit the chair. To find the width apart I was told to put two hardback books down and move the spines apart until your sit bones hit their edges and you feel pain relief. For tbe roho a physio wotked with me to lower the center 3 air pockets fom the back rows up towards the front just 2 or one center air pockets. Again you end up eith the pressure on the sit bones.
Not sure about the damage of sitting but hopefully someone else will be able to answer that.
I think the benefits problems may stem from the fact that although there are some medical treatments for PN there just is not enough data collected to support us. With the many variations seen on this site for the different branches of the nerve and how it affects us so differently the consistency of data in big numbers is just not there yet. I do hope over time this straightens out for those in the future to have better support. Just my theory.
Janet
Good to see you have a lead on physio. I also use the cheapest cushion idea which is gardening kneeling cushions that are placed about 3 inches apart and your it bones rest on the edges of the cushions and lift your center so it does not hit the chair. To find the width apart I was told to put two hardback books down and move the spines apart until your sit bones hit their edges and you feel pain relief. For tbe roho a physio wotked with me to lower the center 3 air pockets fom the back rows up towards the front just 2 or one center air pockets. Again you end up eith the pressure on the sit bones.
Not sure about the damage of sitting but hopefully someone else will be able to answer that.
I think the benefits problems may stem from the fact that although there are some medical treatments for PN there just is not enough data collected to support us. With the many variations seen on this site for the different branches of the nerve and how it affects us so differently the consistency of data in big numbers is just not there yet. I do hope over time this straightens out for those in the future to have better support. Just my theory.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: new with PN pain. What to do?
Hi Bunny
I am in the Uk - like Janet i have made something to sit on out of garden kneelers.
Just to say what i have done - I bought 2 kneelers (bright yellow !) from B&Q which are hard foam - my husband cut them into two similar rectangular lengths the size of an ordinary dining chair and stuck two similar pieces together with evostick so that pieces are thicker than just one kneeler which is quite thin. I find having two pieces adaptable and just push one piece under each butt when i sit down to raise the vulva area off the chair. I also use them in the car.
I haven't used them when out because of the colour - intend sometime to cover them with something so that they are not so conspicuous.
I asked at the pain clinic for a clear diagnosis in case i need to claim benefits at some point - i was told to keep all the letters from the chronic pelvic pain clinic (i keep any consultants letters anyway) and that anything would have to be dealt with by the GP not the clinic. I did get a written diagnosis of vulva pain in a last letter from the clinic - whether this would be good enough for any benefit claims i can't say at the moment as i haven't yet put it to the test.
A bit like you i had anal surgery not for a fissure but to remove a polyp - i now wonder if something 'happened' to some nerves then which aren't helping things now.
I was on amitriptyline for two years and now on nortriptyline and gabapentin - a few less side effects with nortrip. The combination of drugs helps with some of the pain.
take care
Rosemary x
I am in the Uk - like Janet i have made something to sit on out of garden kneelers.
Just to say what i have done - I bought 2 kneelers (bright yellow !) from B&Q which are hard foam - my husband cut them into two similar rectangular lengths the size of an ordinary dining chair and stuck two similar pieces together with evostick so that pieces are thicker than just one kneeler which is quite thin. I find having two pieces adaptable and just push one piece under each butt when i sit down to raise the vulva area off the chair. I also use them in the car.
I haven't used them when out because of the colour - intend sometime to cover them with something so that they are not so conspicuous.
I asked at the pain clinic for a clear diagnosis in case i need to claim benefits at some point - i was told to keep all the letters from the chronic pelvic pain clinic (i keep any consultants letters anyway) and that anything would have to be dealt with by the GP not the clinic. I did get a written diagnosis of vulva pain in a last letter from the clinic - whether this would be good enough for any benefit claims i can't say at the moment as i haven't yet put it to the test.
A bit like you i had anal surgery not for a fissure but to remove a polyp - i now wonder if something 'happened' to some nerves then which aren't helping things now.
I was on amitriptyline for two years and now on nortriptyline and gabapentin - a few less side effects with nortrip. The combination of drugs helps with some of the pain.
take care
Rosemary x