Hi I have recently been diagnosed with this awful condition. I have been taking amitriptyline for 3 weeks, it helped a little initially but has now stopped working. I would like to hear how others can live with this, I feel so incredibly low and cannot see how I am going to cope with the unrelenting pain.
I have had a very traumatic time getting diagnosed, none of the doctors I saw new of this condition and it has taken a long time and left me at breaking point.
I have just been left to deal with it.
I feel incredibly isolated and alone as friends and family do not understand.
Sorry for the short and snappy post first time on here many thanks
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Hedgerow14
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I understand. I have both pudendal and femoral neuropathy and what I’ve found helpful is to avoids sitting directly on pelvis but to be on beanbag chair to lean back and pudendal nerve blocks combined with an opiate RX. With these tools I had years of pain free
Thank you so much for replying and understanding Thank you for your advice about sitting, I am trying to find a way of sitting but it's so painful, i cannot tolerate any pressure at all.
Glad to hear you managed to be pain free that's possitive.
May I ask if you are still pain free and manage a normal life and are you reliant on painkillers in order to do this
hey what are you symptoms? I understand you can’t sit , I have similar symptoms pain in glutes and perineum, my pelvic floor feels crushed when I sit and I have sit bone pain. I have been told it’s due to a tight pelvic floor and I’m on Lyrica . The meds take time. You can get relief in the first month or I can take a few months for the nervous system to adjust…3 weeks is a little early , but if it was helping then I think that’s a good sign and you should try and stick with it….
You are not alone in the search for a diagnosis and pain relief and especially at the beginning, This is a lonely business. I have been through this and although it has taken time, I am now much better and almost painfree.
I always suggest finding a specialist physiotherapist first, preferably near to where you live. They not only understanding but can often find a tight pelvic floor and suggest what to do to improve your situation. Look for cushions that help; This will be different for each person. And in general be as proactive as possible. Have a look at what other people on this site have tried, read, taken in the way of medication.
Oh I do understand how you must be feeling and want to reassure you that even if it can,t be cured it is possible to come to terms with and manage .I had a similar experience to yours seeing various GPs and 2 gynaecologists and having mri scans .I was prescribed amitriptiline for depression as I had given up most of my hobbies and outside interests ,I persisted and finally saw a pain specialist who agreed with my ,by then self diagnosis. This was a turning point for me as he listened and empathised suggesting different ways of dealing with the pain and discomfort ,I am waiting for a nerve injection as it seems to be the only option available .You could ask for a referral I Don,t know which area of the UK you are ,I,m in West Yorkshire . I understand your feelings of isolation as it is a difficult thing to discuss and for other people to understand ,I am lucky as my husband is very supportive but most of my friends and family knew there was a problem at the start but as I now never mention it and as I Don,t show how I am feeling presume I,m OK.I have found this site to be a great help too , the first time I read about others similar problems and experiences made me feel quite emotional as you realise you are not alone with your problem . I know everyone is different but I now feel to be managing by taking each day at a time ,taking paracetamol and sometimes ibuprofen during the day only if needed a nd amitriptiline at night .I have come to realise that relaxation and reverse kegel exercises do help to some degree and most evenings try and lie on the sofa and do this while watching TV etc. I bought a doughnut cushion to use in the car but didn't find it much help .I have rambled on a bit here but wanted to try to reassure you of some improvement to your daily life by trying to manage what seems like an unsurmountable problem to begin with .I hope you manage to get a referral and that helps to some degree.
I cannot thank you enough for your your reply I have done exactly as you describe and have given up on any enjoyment of life, all my hobbies and interests were outdoors and being physically fit and active.
It is very emotional hearing messages to me on here as I have felt completely and utterly alone in this.
I can no longer drive at all anymore, even with a cushion and have stopped going out as I cannot sit anywhere and have really bad urgency to use the toilet.
I can only walk for a short time on the flat.
I have just been switched from amitriptyline to nortriptyline my gp thought I might have less side effects with the latter, I shall try it tonight.
I have read about injections and surgery and all sorts but some of the outcomes are not always good and seem to have made some people even worse which is terrifying.
I think I am still at the stage where I can not except that this will be my life from now on and everything I wanted to do is now not going to happen. I have read that exeptance is an essential part of pain management, can't imagine that as yet.
I have an appointment with a pain management doctor soon.
Have you tried any other medication ?
And may I ask if you can walk or exercise in any way, doing house work, gardening ?
Can you travel any distance ?
Sorry, I guess I'm trying to see if people can manage a relatively normal if restricted life without making things feel any worse
Hello again am glad to be of some help, ,I'll try to answer some of your questions.I have found it easier to cope with this condition if I keep as busy as possible ,I am retired so can plan my days to suit myself,I feel for people who are still,trying to work especially if their job involves sitting down for long periods. After 6 months or more of not going out much and cancelling holidays due to anxiety about travelling I gradually started by going back to playing crown green bowls and found that when I'm occupied and chatting to others the discomfort is there but not over riding , I sit for a shorter period in the break and walk around and do the washing up to keep busy. When the weather permits we go out now every day for an easy walk by a river canal or park and meet people for a coffee staying for as long as I can cope with .I also do some gentle exercises to music at home as used to go to a class .I do the usual housework and gardening which I love ,now not doing any digging or lifting of heavy pots as I used to .I used to wear quite tight fitting jeans or trousers , have bought looser fitting ones and treated myself to a few dresses which I didn't used to wear .I think what I'm trying to say is gradually by modifying things to try and make things easier to bear I can get by ,some days are better than others .I hope you will find ways of coping with this awful condition and get back to doing some of the things you like to do .Keep posting as knowing there are others out there with the same problems is a way of finding support, ideas and encouragement.
I have had pudendal neuralgia for several years. My survival medication is Pregabalin. I take this capsule two or three times a night (200 mg capsules). Now I take this medication with Paracetamol and my Pain Relief nurse specialist says this is acceptable.
During the day I use a special Cushion designed for sitting with this condition (a Google search online reveals a selection). I take no medication, distracting myself with work although 'retired'. Hope this helps.
I have pudendal neuralgia and obturator neuralgia. They added on piriformis disorder. I have found great relief from pulsed radiofrequency ablation of the pudendal nerve. I have tried amitrityline, gabapentin, oxycodone, sevella, and others. It is a lonely painful business. It is hard to find someone who understands. I have gone to pelvic PT's, tried tens units, and even had 2 interstims implanted (they decreased the pain about 50%). So by far, the pulsed radiofrequency ablation has relived 90-100% of my pain.
I am so sorry to hear of your pain and as you can see you are certainly not alone in getting a proper diagnosis and it has been my experience trying to find the right treatment/medication can be just as challenging in my case it was pure hell..I have had this horrid condition for 8 years now and after two LONG AGONIZING YEARS going from one dr to the next trying medications that made me feel worse and was unable to live life I was stuck lying on my sofa all day ..what I had to do was jump off the medical rat wheel…I stoped seeing Dr.’s due to the more they tried and the meds they prescribed the worsts I felt…I started seeing an herbalist read the book by Amy Stein “ Healing Pelvic Pain” and started meditating and yoga by Dustine Miller “ Your Pace Yoga Reliving Pelvic Pain”…only this helped me I now take valerian root and hops ….i am now able to drive and live again….I can’t do all the things I could before however the things I can now do that I never knew I could have given me a different/new life ….i am no Dr. and do not claim to be this is what has worked for me ..please try reading the book and find an herbalist to help this was all that worked for me …the reality of the world today is being sick is what the medical profession makes money on there is no money to be made if you are healthy..no there is not a cure for this horrid condition however for me personally with the right mind set and finding the right people to help (and for me it was not the medical professionals) I was and able to live again not like before but I am truly blessed..I hope this helps you I found the more research I did the better I felt by taking my health into my own hands was the only way to feel better..❤️🩹 I will keep you in my prayers
I am glad you have found peace with life after what you have been through.
I just don't know how to do that right now, I am still so upset this has happened to me as I have battled chronic migraine and bowel issues for many years and was hoping for a break when I hit menopause and then this horror.
I guess I would like to know what to expect from life with this chronic pain so I can get into the mindset of lowering my expectations and letting go of all my thoughts and plans of what I wanted to do
Keep wishing it away isn't going to happen.
I also find it difficult with family and friends, they do not seem to understand a condition that is not going to go away and talk to me as if I'm going to get better soon and will be back to doing this and that like I used to, this really upsets me.
No apologies needed…I understand people do not understand because you look normal I gave them the name of the Neuralgia and had them google it for their own education…yes the book is where I started you will like the yoga as well you can get it on dvd but look her up as well Dustine Miller she has yoga flows to help with bowel issues as well as the book ..these are the things that truly have helped me once you start understanding it hopefully it will help with other health issues..I wish you the very best please keep me posted much love
Thank youGood idea to give freinds and family the idea to look it up themselves.
Yes, I see what people mean by invisible illness.
I have just found the book on the Internet and will order, interesting to read about the bowel too.
I have had some more possitive thoughts today after hearing from all of you beautiful people, still had a few moments of despair when it dawns on me but it's a start
HI I am so sorry for your pain and suffering. It is a terrible condition and one that is hard to explain to friends and family. I worked with a pelvic floor physical therapist and an amazing doctor at the Cleveland Clinic in the states. He is a pelvic floor pain management doctor. He performed some nerve blocks that helped which eventually lead to us ablating my pudendal nerve which was the root of all my pain. I had to have it ablated every six months in the beginning and then eventually with continued physical therapy the time in between the ablations got longer. To the point that things have now finally settled down. It is a process but relief can happen. None of the drugs like gabapentin or amitriptyline ever helped me much. Sending you hugs and prayers and know you will get better in time and you are not alone. xo
I am close to the Cleveland Clinic…I have had this condition for 7 years…Been to a OBGYN at the Clinic but zero help. Could you please send the name of the Dr. that you saw at the Clinic. Thanks I really appreciate it.
Hello and so sorry to read all your pain. My husband has had a tight pubic floor and by God's mercy is doing better. He still has flares, but better than he was. There's a book called headache in the pelvis, and there's a doc in California there is a clinic you can go to for 6 days but we couldn't make it there. We found a doctor in Bethlehem Pa, Dr Echenberg of the Echenberg institute for pelvic and sexual pain. He does Botox to the pelvic floor to relax the muscles so the nerves will stop firing causing pain and by God's mercy it really helps. It calms everything down enough to do the self therapy everyday. Just keep doing the therapy and if you get the Botox injections, and he also does trigger points injections and nerve blocks. Please Google that and give them a call. He is the best doctor we have ever met and a great friend. He's retiring soon but will still take calls and then he has 3 doctors taking over for him and we met one of them and she is very nice and very skilled and knowledgeable. The new docs are in NJ (only women), KY and FL. I don't know anywhere else you can get this great treatment. By God's mercy my husband is off of his meds and just had them for back up if he gets a flare. Also for sleep doxepin for a short time really helped my husband. Once you start sleeping and get your pain reduced your anxiety will get better. Keep up the good work and do your therapy and try to get a hold of DR Echenberg. God be with you all and may God heal you all completely and speedily.
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