ok, so I was diagnosed with 'probable PN', and have been trying the usual meds and physio etc. I have the 'standard' symptoms though not as painful as some of you.
My questio : Is pain or discomfort when standing a normal symptom too? I get a bruised/stiff/tugging pain when standing so ironing or cooking is uncomfortable. This feeling is right at the top of my thighs, kind of beneath the perineum. It goes away when I walk, si I try to walk a lot. It has always been secondary to my sitting pain, but has recently benn bothering me more. I do have a history of lower back issues, and requested an MRI but no luck there yet.
So does anyone else with supposed PN get a nagging pain when standing?
Yes I have issues standing for long periods, pain n back, thigh and feet. All related to PN.
• in reply to
ok, thanks. Just doesn't seem to get a mention in the literature. Got a 'standing desk' at work, but actually not helping as much as I'd hoped - very hard to find a comfortable position.
I also had severe pain when standing due to muscle spasm. I have worked hard on lateral hip stretches which has transformed my pain levels. Sitting still difficult but can stand a lot better.
ok, thanks. Who advised on the specific stretches, guess it was a pelvic physio? I do a range of basic stretches from Amy steins book, or used to but gave up really...
A fellow pn sufferer, who has cured himself and gone on to develope an excercise program for people. However we are all different and whilst this has helped me it may not be effective for others.
Prior to thisI had tried everything surgery, pelvic physio, injections, Botox, magnetic therapy and much much more.
US-based I see. I guess his work is similar to Amy Stein? I have her book and tried it for months, still do some stretches daily but lost focus as it didn't seem to help. Thanks. Andy
David, actually does a lot on Skype,he is a Brit. Who was living in the UK when I saw seeing him but did some sessions on Skype. He is now living in Central America,but has teemed up with an American and put together a really powerful program based on male pelvic pain. It might be worth you contacting him. I have no vested interest in this.
Andy, I also meant to say that I also went down the route of pelvic physiowith Ruth Jones in Southampton went there for two years with no improvement. David,s excercises are not based on these other pelvic physiotherapists.
Interesting...I considered Ruth Jones, but it is a long way for me. If I could find a program of physical exercise that would really help, I'd be so happy...I'll look him up but if he is not based in the UK I don't see how he can help?
Lucy. Thanks, I really appreciate your thoughts / time. Yes, an email enquiry could lead to something positive - shall I PM you my own email address? I much prefer the idea of a physical remedy than medication. Andy
Let me make contact with David, sometimes it takes awhile due to his location. I will pass his details over to you via email, when I have made contact. I will ask for your email the.
I have made contact with David who is back in the UK in November. He is very happy for you to make contact.His email is. david@freedomfrompelvicpain.com
Let me know if you have any problems. I will be seeing David myself when he is back.
Thanks Lucy. Where is David based when in the UK? I find travel over an hour gets painful. I have made a note of his email and will contact him. Thanks, I appreciate it. Andy
Last time he was in the UK he was in the West Country near Bristol. I live nearby hence I was able to see him for sessions. I,ll let you know when I find out if you don,t get there before me.
Hi Lucy, just read your text. I am Daniella4 and also had surgery in Istanbul. May I ask you how long ago you had the surgery, did it help? I am in the U.K. and would love to know more about whether you feel it was a good outcome? I would love to exchange notes with you. Best wishes Daniella4
I had my surgery five and a half years ago.i was told the success rate was 100 per cent, when you are desperate you believe anything. I had a very bad time in Istanbul and journey home was a nightmare. Afterwards for months it was very painful.
I did make a small amount of improvement .
Most of my improvement I have make from stretching.
Hi Lucy, I am so sorry you had such a bad time in Istanbul. My surgery was done August 2013. I was told around 75 to 89 o/o I would be cured. Were you asked to return in 3 months time for your post operative consultation, I couldn't go back due to lack of funds!! I was also asked to set up some sort of pain plan with the pain consultant I was under in the Uk but again no funding left to do this!! I was wondering if you have shown your x-rays from the m3 tesla and your EMG results to a consultant to confirm where your entrapment was. I havn't shown mine to anyone yet and was just wondering if you had and what type of consultant would understand them. It seems so sad that we both had the same surgery and are still not fixed. I am also very interested to learn what type of stretchesyou are doing that help you. My very best wishes to you. Daniella4
It's really nice to communicate with somebody who has had a similar pathway. If someone had said ten years ago I would go to Turkey for complex surgery I would never have thought it possible. How terrible this condition is.
I continued my pain management at Bristol, as I live in the area. After exhausting everything I was referred for a sacral spine stimulator. However, I had just strarted seeing David McCoid, and felt some progress, so I decided not to go ahead with the stimulator, good decision for me. I believe most of my pain was due to tight hips, the objurator belting a chief culprit. Despite seeing Ruth Jones for over two years at a considerable cost I never really improved.since finding the key to loosening up the hips my life has been transformed. Sitting is still difficult but I can manage quite a lot now with a cushion is cinema restaurant. I remain on a small amount of medication, but this does,not bother me anymore.
Did you make any improvement after surgery?
Tell me a little bit about your story, you can pm me if you would prefer.
I would be happy to pm you the stretches I do but caution that just because they worked for me they may not improve the next person.
Hi Lucy, it is nice to finally find someone who understands and has gone through the same surgery as myself. I have a entrapment of the pudendal nerve on the rlght side. I have had
2 nerve blocks and 2 CT guided blocks all with very short term relief. I meet with the Turkish consultant in London early in the year of 2013 and he said if I came to Istanbul he could help me. I live in Hertfordshire so my closest pain consultant was in London. I have had both private. And nhs treatment at the pain clinic at the NHNN queens square London. I havn't done much pelvic internal physiotherapy I saw an internal pelvic. therapist in London but was short lived as I developed an bartholinabscess so I couldn't continue. My pain is all on the right hand side affecting bowels through the pelvic floor to vagina, siaticia nerve and right hip. . I was told that the branchesof the pudendal were trapped at the trunk and were therefore released on the right side. I am in less pain but can't sit for long either. I am on Lyrica and sometimes on naproxen. Are you under the Bristol
Team? I would like a 2nd opinion of my X-ray results. I feel I am just left in limbo at the moment.Best wishes Daniella4
I assume the doctor we are talking about is Dr Erdogru?
How did you come about seeing him in London? How much improvement have you had?
I don,t think there is anybody in this country who would be able to interpret scan results. Even in the states where there is greater expertise around imaging , there seems to be little evidence that any sort of scanning changes the outcome from whatever.
Are you still being seen at a pain clinic? Has anyone suggested an implanted stimulator or is this something you would,not want to consider.
I am sorry you are going through this, it is such a ghastly poorly understood poorly funded condition it feels as if you are up against the world.
Please let me know if I can be of any help. It's a shame we live such along way away or we could meet up.
Finally do you have any communication with Dr Erdogru? What did he say after your less than perfect outcome?
I have a Turkish friend who contacted Prof Tibet directly and he told us he was coming to London so we meet up with him and had a meeting.He told me if I came to Istanbul he could help me., hence all the x-rays and EMG test ing and then we arrangeda surgery date. I did contact him after the surgery and he said I could have another pudendal nerve block or radio pulsed frequency .
I did not return to Turkey and I wasn't under the pain management clinic so I was just left to get on with it.
I think I am slightly better at sitting but the nerve pain still flares up and still have the pelvic floor spasms.
I feel this nightmare never ends. We all throw so much money at it hoping for a cure but so far nothing seems to help. Maybe stretching would be a good option.
Do you mean by pm is to email each other.
How does your pain clinic help you? Do you have to have any more nerve blocks or other treatments or do they just monitor your pain meds.
I have never been offered a stimulater.
It is a shame we live so far from each other. Are you under Dr. Greenslade, I hear he is a very nice man.
Thank you for all your advice and thank you for responding to me.
Hi Daniella, I am currently no longer under a pain clinic as I reached the end of the road with the offer of a spinal stimulator.
You are within your rights to be referred to one, I imagine London would be your obvious one. I did see Dr Greenslade in Bristol he was by far the best in my opinion of them all including London.
I have just replied to somebody else saying it was the monster walk that has given me so much improvement, I think the hips play a very large role in this condition, which is so poorly understood. I add caution to doing any stretches to start slowly and gently. It may not make any difference but it does,not cost anything and is not invasive.
I was told by the spinal implant team that this area of technology is moving so fast that there should be more hope for the future, of course funding will play a role.
I think you are absolutely right about the hips playing a major role in our symptoms. I was told by the pelvic therapis,Marie Elliot that my right hip was completely twisted, and I feel I walk like a crab always turning into my left. Standingup I still feel like something is pulling inside.
I should go back to the GP and get a referral to the London Pain Clinic but it would take months before I would been seen.
It would be nice if we could meet up, maybe meet halfway so the journey wouldn't be too much for us , any way something to think about!!
Lucy did you not see Prof. Tibet Erdogru after your surgery?
I am happy to hear that the doctors are making progresswith this condition. I hope you can email your stretching regime to me I would be willing to try them to see if it loosens up my hips. I do still have problems standing up for too long.
I was wondering if you got PNE after a surgery or a fall?
I think this is one of the hardest conditions for a person to bear and most embarrassing condition to have to explain, and for so many doctors to tell you it's phycological.
It's been nice having you to exchange notes with, and understands exactly what we are going through.
I look forward to your posts. Hope you are coping better now. Have a nice weekend.love. Daniella4
I saw Dr Erdogru whilst I was still in Istanbul and continued email communication with him for a period of time. I was not invited to go back and quite frankly there was no point, as the surgery did not do what I was told it would do.
If I had my time again I certainly would not have gone.
Pain clinics are very overloaded so I do appreciate there would be a long wait to be seen.
If you can send me your e mail address privately, I don,t know how to do that but there must be a way. I would gladly share my limited stretches with you. Would love to meet up if we can come up with a mid way point.
Hi Lucy, I have emailed you privately,I don't know if it has worked or not. I have googled monster walk, it looks very interesting, I need to get the elastic bands.
I think we all live in hope and want to see the light at the end of the tunnel, I think because we are in so much pain , we grab at straws and make a lot of wrong decisionscertainly on my part anyway. I have got to the point where I am doubtingany decision I make as it all seems to go horrible y wrong.
Yes I did get your email I was thinking about trying to photograph my monster walk. If you have goggled it then you can see what a simple stretch it is. Please go careful if you try it. Pray that it helps you even a little bit.
I,m doing OK. I have periods that are better or worse, no Ryme or reason just the nature of the beast. I have had pulsed radio frequency with Dr Baranoski. It gave me a few weeks of slight improvement that's all. I have had a couple of spinal blocks with Dr Greenslade, again slight improvement for a short while. I think there are some promising treatments coming out of the states, I expect it will be a long time before we see them here.
Something I do find helpful is heat pads either from Band M or the pound shop if I think I,m going to have a poorer day I will put one on as they last twelve hours. I am careful not to apply to the same place if I need regularly as the skin becomes sore.
I try not to think about what I used to be able to do and focus on what I can do now, I know it's hard.
You sound like such a wonderful and positive person. I could certainly do with some positively in my life at the moment.
I had some Pain injections on the right side of my back and one into the SI Joint which helped for a while but they do wear off.
The heat pads do sound like a very good idea.
I try like you to get on with life but as you said, everydayis different !! It is hard but I am hopeful for new treatments that could help us In the future.
What are you able to do on a regular basis. Swimming is good, are you able to go for walks?
You are entitled to ask for a referral to a pain clinic although in all honesty I don,t know what they could suggest.
Have you considered the Sayers clinic in London. I have heard lots fo positive things about it, not sure I,m convinced about all of it ,if I lived closer I would probably give it a go be it for a short time.
I can do most things like food shopping, walking the dog, but all in moderation, even the house work, I can sit in restaurants but if I overdo it, the nerve pain sets in and I have to rest.
I have heard of the Sayer Clinic in Kensington London, it might be something worth looking into.
I can't go swimming as the nerves go crazy in water. I have to shower instead of bathing because of this.
Like you everydayis different and I try and get things done on a good day.
My pain levels fluculateall the time, no two days are the same.
The nerve is so prominently affected on the right side, even on my EMG report , it shows such a high reading of disturbance of right pudendal nerve compared to the left.
I really need to see a specialistto discuss the findings.
I have non stop pain on the right side which never stops thus stoppingme to do too much.
I guess life goes on , but I am still hopeful something comes along in the future to help us.
I hope you are feeling better with your stretching routine.
Just wanted you to know that Sayer & Mr M are lovely but no better than any physio you can find nearby. I didn’t a year travelling there every wkend for sessions & althoughtotally charmedcan confirm they have no more expertisethan the website & hype suggests.I don’t ever post but I hate to see others chase something that doesn’t exist & waste time & money being promised a cure that can’t be fulfilled.
I guess all these pelvic floor therapists work in the same way. I must admit I havn't done much pelvic floor therapy in the past.
How are you? Are you getting anywhere in finding out what treatment you will be having? I was told by a gynaecologist in Turkey that I had thickening of the womb lining, so I guess I have endometriosis as well.
Are you seeing a specialistgynie for your laparoscopic surgery?
I hope all goes well with the procedure.
I am so sorry to hear of your loss.
My Mother passed away in January and life hasn't been easy without her.
Hi Lucy. Ever read Peter Dornan's work? He is a physio and treats pelvic pain by focusing on the SIJ, which kind of ties in with your thoughts on hip mobility. I wonder if David's approach is similar? Andy
Yeh i have this exact pain well it not pain it a tug pully feeling. It just drives me abit nuts but i find it hard to sit for to long so i have to move about or il b in discomfort. Then the pulling comes, there no answer lol.
I have found a great book by amy stein heal pelvic pain and i have been doin her exercises in there and that has helped massively as ur p nerve shorten so it needs to b re stretched.
Also gives u good relaxation exercises as ur pelvic floor can become tight and tired through over use.
I also take glucosamine, coq10 and msm tablets they are for inflammation and healing connective tissues and they are really helping. Also i see a physio that specialise in that nerve and pelvic floor pain and she is a blessing all in all im prob 80% better .
Hi, I noticed you all wrote on this a year ago. How is everyone doing now? Anyone healed? I get a dull ache when standing or walking for a long time! If anyone can help me I would appreciate it
I’m being treated for prostatitis at minute but I’m nearly sure it’s to do with my lower back and nerves I’m getting burning and like a knawing feeling just each side of my perineum inside of thighs plus pain in my penis .....burning down both legs ..... it’s bloody horrible as its very hard to explain to people how energy draining these symptoms are ...... all the best
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