i have just gone full circle and ended up at The Pain Clinic. First of all I had a hysterectomy and double prolapse sorted. I had felt some low back pain before this and was uncomfy sitting but thought it was part of my symptoms for prolapse. After the op I was in real pain when I tried to sit.
That was three years ago. I have not been able to sit properly since. During those years it was found that my coccyx was broken in two places - so I had that removed. Now after three years of not being able to sit, excruciating pain dominating my life, and getting passed from one consultant to another I was sent back to the pain clinic. I have found through trial and error that amitryptilline seemed to provide some relief but The Pain Clinic suggested i change to Duloxetine. Has any one else tried this as I am not sure why I should change at this point and am always concerned about possible side effects?
Like many others on this site I have had to research all my own symptoms as no one in the medical profession could find the reason for my pain. Once i found this site I suddenly didn't feel so alone in the world! I don't want others to be in pain of course but to know i was not on my own and that there were possible answers was like letting fresh air into my life!! A problem shared certainly helps !!
One consultant who knew something about the pudendal nerve has examined me and said he supports the diagnosis of pudendal nerve entrapment but that my area of entrapment was not in his field of work. He sent me on but it turned out i was back in The Pain Clinic.
Before I start full circle again I am interested to know if anyone else has tried this medication.
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marybeex4
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sorry u r going through this ... it is sad how many of us suffer. I have tried it and it did not work for me. I know am on Lyrica ... just started. Best of luck ...
I started taking duloxetine about 2 months ago and, despite heavy drowziness/fatigue, I have gotten more of a reduction in my pn pain from taking it than from the multiple shots and unsuccessful procedures I've had in the last year.
Like you, my pn snuck up on me following surgery (for hemmorids) and it took almost 9 months to (self) diagnose the real problem and then get a specialist to confirm. I had worked up to taking 120 mg of duloxetine but had to dial back to 90 mg because of fatigue making it hard to work.
I'm by no means "cured." But I can now wear underwear again (under baggy pants) since starting duloxetine, and can also manage to lie in bed on my backside without much pain. These are two big improvements from were I was 3 months ago.
On the other hand, it's a still excruciatingly painful to sit in an office chair for very long, which is a bit of a problem since I support my family by writing. Wish I'd never had the surgery that brought this on. Hemmoriods were a walk in the park compared to pn.
I hugely sympathise with you and was diagnosed with bilateral pudendsl nerve entrapment last nov and consequently had surgery in jan 2014. After numerous specialists and hours and hours of research I found mr Gareth Greenslade in Bristol and he was fantastic. I really hope you find some comfort and answers it is a horrible time and very frightening. Good luck x
Yes I had bilateral pudendal nerve surgery 4 weeks ago so it's early days. I won't pretend it's not painful as the incisions are approx 12cms vertically down both buttocks. The nerves were tettered , trapped and flattened but he has managed to decompress both sides. The chronic nerve pain is still there but I do have good days and relying less on copious amounts of tramadol, also taking 600 mgs of pregablin every day. I have been told that I won't see any difference for at least. 6 months and will have huge flare ups but this is a good sign as nerves are regenerating. It is frustrating and had a huge impact on my life as can no longer work or do much with my 8 yr old son who is really struggling to see me in so much pain. It was a huge decision to have surgery but all the tests and symptons were so conclusive that I put my faith in the surgeon. I do feel I've made the right decision just recovery hopefully and a waiting game. Have you had a diagnosis, are you seeing anyone in the uk or France? U
So pleased to hear you are hopefully in the recovery stage now! I hope things start to improve for you because i know it's a pain that is indescribable!!
Were you given any idea of how long it might be before you can possibly sit properly? I am already worrying about the future as I have already had to stop work for many weeks after a hysterectomy and then a repair and then again do another long recovery period after a coccygectomy.
I only work part time but do need to drive to my jobs. At the moment, I am still driving with the use of two special cushions and an ability to hold my weight off my bum for short spells ( I think roll about from one cheek or the other so much that my other muscles are all working differently).
I am quite a positive person but this sort of pain issue has to be sorted because it takes over my life. Getting consultants to listen is enough work in itself but I only ever hear wonderful things about Gareth Greenslade so I am going to ask my doctor if i can be referred onto him. It seems he listens and examines and can isolate the different causes of this pain and if it is pudendal entrapment he can advise treatment. But I just wondered what sort of time issue I would be looking at on the recovery side if i also need pudendal nerve surgery.
Good luck anyway and fingers crossed that you will soon be out of pain and enjoying life with your son with more ease
I had a unilateral decompression surgery which helped for about 6 months. a physical therapist said later that perhaps I should have had physical therapy during the recovery to keep scar tissue from forming around the tissue and recompressing them. you may want to inquire about this.
Thank you for your kind words. I really hope you get to see Gareth he is lovely and has been a huge help. The recovery for the incisions to heal has been 4 ish weeks but real recovery will 6 /18 months if it is successful, there is a 30% chance it won't work but llike yourself I'm very positive. I was told nerves seemed so bad that surgery was only answer and pain was so bad I couldn't hardly walk and sitting was a definite no. I am positive and now have better days but have been told I won't see any difference for at least 6 months and pain may get worse as nerves start to come alive again. Like you I had 12 weeks off work after my hysterectomy then returned for 3 weeks but had to finish as pain was unbearable. I lovey job as a teacher and have sleepless worrying I may lose it, it's been such a wonderful important part of last 2 decades . I really hope you get to see him, I went private and paid £250 to see him in Bristol as I was so desperate. Good luck and hope you manage to get some answers and the correct treatment
Hi Poppy26. Just wondered how things were going for you now? As another fellow sufferer slowly working my way through the health system I was more than glad of your support when I needed it! Hope things are improving for you1
I don't mind any questions more than happy to help as appreciate how awful this condition is. Gareth and his partner Chris Wong (the surgeon) are very proactive and really explain things. I had. Ct guided nerve blocks and high quality sound that showed both arteries were sluggish which suggested both pudendal nerves were entrapped in many places. My symptoms were chronic pain deep into vagina , electric shock pains, stabbing stinging pain as though shards of broken glass were being moved in my insides. When it returned to school after hysterectomy all staff were supportive and insisted I sat down all day even when teaching. The pain prolonged sitting brought on was horrific, it was so intense that I was unable to walk and certainly drive home from work. My pain gets worse and worse as the day progresses and I could cry. Wearing certain clothes and underwear causes pain down there and if I get stressed mentally it hurts physically, very strange. Yes I was fortunate to go private for everything as I have private medical insurance thankfully. The total cost was approx £4000 with consultations and surgery.
Are you symptoms the same? Maybe if you see Gareth privately it may help speed up the process ?!i do appreciate though that it is expensive especially when condition means we are out of work. Let me know if I can help at all.
Hi, I just want to find out how it going with you after the surgery. My mum is going through excruciating pain just as you described. Although surgery won't take out the pain entirely will it help being here some relief. As I'm worried surgery might just worsen her case since she's had lots of surgeries.
yes, and you should google "withdrawl symptoms for Cymbalta". it did not work for me, and it took me about a month to get off of the drug. others were not as lucky and spent much longer getting off of it. I recently started klonopin or rivatral (European) for PNE and that seems to be doing much more than any of the other drugs that I have tried and I think that I tried them all.
Thank you! Just looked it all up. Not really sure why this consultant wants me to change medication as amitryptilline helps. She more or less told me that I should live with this pain. She said pelvic pain was difficult to deal with, that I should change medication and also to see a psychologist. When I asked why that was recommended i was told that they can talk to me and help me get on with my life. Since i have got on with my life and am considered to be a fairly positive type person i am not sure that this is what will help me. I want help with the actual pain! I see my own doctor this week so will discuss this medicine change and ask to be referred on to Bristol where they seem to want to help or correctly diagnose at least!
Good to hear from you, how are things going? Did you manage to get a ref to see mr Greenslade? I am now 8 weeks post surgery and pain levels seem to be improving slightly. I no longer have electric type pain but tight clothing and underwear is still a no go. I have been using a pool in my local gym last 2 weeks only to do gentle exercises and bounce up and down the pool but think it's helping? Still can't sit for any time and if I do I'm garenteed a flare up but mentally keeping positive. I would love to return to teaching on a phases return June ish but spoke to surgeon last week and told this might be too opomistic but good to have a goal. Still on 600 mg pregablin per day but have managed to decrease tramadol intake . Still feel surgery was the best decision for me but time will tell?
What is your situation now and how are you feeling? If I can help in any way please let me know. Take care
Hi So glad you feel as though things are improving. My doc has been brilliant throughout and has agreed to find out about going to Bristol so things seem to be going ahead and hopefully I will be able to learn what is causing the pain for once and for all. One consultant confirmed pudendal entrapment but everything stopped there and it was back to the pain clinic. I know everyone has been doing their best but I do feel as though I have wasted so much time wading through the system. My doc is as frustrated as me!
Pain is still as bad. It's always the sitting that hurts!! I can walk and dance but standing still or sitting is a nightmare that only someone like you would understand! Are you able to drive yet at your stage of recovery? I can at least drive, with a variety of cushions, but only for short distances!
Thanks for your kind words, I would like to keep in touch to see how things work out for you after your op. Fingers crossed it will all be good!
Hi I'm now 9 weeks post surgery and had s good week last week but think I over did things as had a flare up this weekend· Body reminding me to take things easy and not to run before I can walk· I am able to have a 20 min daily walk and use pool for a swim several times a week· Not driving yet as sitting upright is still too painful· Goodluck to everyone long through this
I think you can't tell what your personal side effects will be unless you actually try the drug, because as the cliche says, everyone is different. Duloxetine did help me with pain, but the side effects were bad enough to make me stop taking it. Nausea was the worst effect, with weight loss from not eating another.
You may not have these side effects though and you will have to try it to find out, It does help some people with pain.
Thank you Alan 1646. I have decided to carry on with amitryptilline now as I seem to just about manage with this. The consultant didn't explain the need for me to change to duloxetine and since it had seemed to me at the time as if I was being told that pelvic pain may be something I should just learn to live with, I personally lost faith in this one consultant.
I do realise that this sort of pain issue must be a nightmare for the medical profession to get to the roots of, but it does seem that many people are suffering huge amounts of pain. This site at least, reassured me that i wasn't going mad - I had explained the problems to so many people but somehow just ended back full circle and didn't know where to turn. I was at the end of my tether but now I am learning more about the possible different reasons for my own pain issue and hopefully I will be able to see the right expert in this field instead of being passed around until I feel dizzy and helpless!!
I take 40mg duoxetine twice a day I have been taking it for 2 years but I also take 200mg tapentadul it does not take all the pain away but it a little easier . Dr Hobbs as tried me on a range of pain medication but these suit me also side efforts not bad for me.
Did duloxitine help at all. I tried it 2 months ago twice got ill. Not if it was please everybody there is a test call a MRN not MRI it’s done in London at the pain clinic it found I don’t have entrapment. I had previously had 2 x bilateral Pudental nerve and no pain relief at all. I also Ganglion impar , pirifirmis intermuscular and S1-S3 blocks. Now they think it’s poly myalgia and I’m on prednisone for past 12 weeks and not sure as bloods don’t prove it apparently 15% it doesn’t show.
I do have ischiofemoral impingement severe bilateral bursitis etc I can’t sit or lie down at all. I sit on ice between my legs and eventually entire are off throbbing electric pain on sides if vagina starts to numb and then numbness goes to legs and feet.
I will make an Appointment with Gareth but will send my reports in first as if you do that many consultants say it’s not in their field. My quality of life is zero and pain made me go back into a severe depression and I’m having ketamine infusions which have helped the depression but not the pain!
Thank you. I have decided not to change at the moment but am sticking with amitryptilline as i can deal with any side effects and understand what I am doing. However its good to hear that the side effects of Duloxetine are not too bad if its suggested again as better option for me. Thank you for sharing your experiences.
Hello marybeex4 I have tried Duloxetine for severe rectal scar nerve damage. I found it took the pain levels down a bit but the side effects were too much to bear. I started hallucinating and having awful nightmares, then insomnia so I had to stop taking it. However, and you shouldn't follow my example without some advise, that if I use Duloxatine for a couple of days, before the side effects kick in, stop it, leave it 48 hrs then take a tramadol it eases my pain for a while. Duloxetine initially seems to change my brains response to pain signals allowing the tramadol to be so much more effective. You cannot take these two drugs together as it is dangerous. I just keep experimenting on myself with different medications and therapies because I am desperate for the pain to stop. Hope this helps.
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