Pudendal Nerve Damage

Our Daughter had a hysterectomy a year ago today. Shortly after, she experienced a sore, burning feeling. Her GP didn't know what was wrong. After researching herself, it would appear to be PND. She's had a nerve block operation, which sadly didn't work. She is so depressed and now has anxiety, near suicidal and is taking a cocktail of drugs for this, but still in pain. She is a shadow of her former self. Has anyone else had this and if so, we'd be so grateful for your help and advice, we are so worried about our Daughter. Thank you so, so much.

12 Replies

  • I unfortunately haven't experienced this before but I just want to say how sorry I am to read your daughters experience . I also had a hysterectomy last year and now experiencing some post up complications. I completely understand how devastating it is to go through through such a huge operation in the hope that it brings some relief only to end up suffering again. I really hope your daughter finds the treatment that she needs xxx

  • hi there, sorry to hear of your daughters experience, although I haven't had an hysterectomy I too can relate to her discomfort. I had a prolapse repair and a tot (a mesh) put in place back in 2012. it was hell for months to follow. burning, feeling sore and pain I had never experienced before. gp couldn't understand or a pain management consultant. so after joining a support group on line called messed up mesh I wasn't alone with this. to keep this short I then asked my gp to refer me to miss el Neil in London on the NH's ,she then removed the tot and put me on Ignore and amitriptyline ,since then I am still on these meds for life and the pain seems to be under control. After suffering for so long prior to seeing her this was heaven. still get flare ups now and then but I can cope with this. don't worry that pregabalin is an anti conversant and amitriptyline is an anti depressant they just work well together on nerve pain. hope this helps

  • I can fully empathise with your daughter. I had a hysterectomy twenty years ago and have suffered with Prudendal Nerve Pain ever since. I have seen two gynaecologists but neither was listening to what I was telling them and they were only concerned with my slightly prolapsed bladder. I have basically given up and feel I just have to live with it. When it gets too bad I take Ibuprofen. There were complications during my operation and I believe the surgeon was responsible for this damage, but when I tried to explain to the doctor during my post-operative appointment, I was told that I had to give it time and was signed off. I hope your daughter is able to find a doctor who is aware of this problem and can help her, because it is a very debilitating condition.

  • Ah your poor daughter, it must be so worrying for you. Has she tried physiotherapy? I'm with a specialised women's physio who helps nerve damage and she does internal work too, I'm getting help with burning down below and soreness around uretha. It may be worth trying to speak to one over the phone, if you Google women's physiotherapist in your area there are quite a few around who specialise, I would also recommend she see a pain management consultant to go through her meds?? Xxx

  • Hi, I'm sorry to hear that another person is suffering with this horrible condition that rarely anyone seems to recognise :( however after living with it for a few years I can hopefully give you a few pointers. Firstly get it diagnosed, it helps as once you can put a doctors name to a diagnosis other doctors seem to believe you. I saw dr Gareth greenslade at Bristol hospitals on the NHS however he is also available privately. Even though you know you're living with the condition a definitive diagnosis helps. He may try to do another nerve block but not necessarily. There are many drugs that they will try to get your daughter to take (I imagine they may have given you these but thought I would mention it) mostly antidepressants or drugs traditionally used to treat epilepsy as they now both have applications in neuralgias. It's a tough road as I found both have horrible side effects but it's worth persevering as you may find one that works for you. I take gabapentin at night (to minimise how the side effects affect me) and it does have a small affect. Another thing I can recommend is lidocaine gel to put on the most sensitive areas, as this helps me when I need to leave the house (as my condition is severe enough to make wearing pants and trousers uncomfortable so the gel helps)

    For everyday I find that the shooting pains make cooking hard as you can slip and insure yourself easily - I now have some special cut resistant gloves which are wonderful and I can highly recommend. Just a small change can give some hope to living a more normal life.

    if sitting down is impossible like it is for me, find one of those plastic toilet seat covers - the kind that raise toilets by 2 or 4 inches, and put some foam over the top of it (following the shape) as it seems to be the only shape my pudendal neuralgia can allow me to sit on without being in horrific amounts of pain. It's not comfortable and it's taking a while - I'm still in the process of making mine but I'm looking forward to 'sitting down' for the first time in years, even if it will only be for 10 minutes

    I also tried electro-stimulated acupuncture - it wasn't for me as it didn't work but I have heard great stories about it.

    Please encourage her to speak to a counsellor or someone outside the family as it helps. It's hard to tell someone in your family how truly horrible it is to live with this and to say how hard it is mentally. The anxiety and depression of the condition consumes you everyday, especially as I can't see it ever getting better but having someone who won't get upset about the words you say, is a massive help.

    I hope this may help you in some form, Beth 😊

  • I had hysterectomy then prolapse with repair. I began experiencing the burning and rectal pressure shortly before the hysterectomy which was blamed on the large fibroids. I honestly think it was a combination of heavy exercising and weight lifting including jogging that started my pudendal nerve issues...the hysterectomy and the prolapse repair were the icing on the cake. I too found myself consumed with the burning and pressure. What has kept me is first and foremost my faith and trust that God will heal me. A combination of stretches, walking, medication (Neurontin, Cymbalta) an occasional Tramadol I keep going forward by faith. I am praying for your daughter right now. Try physiotherapy for pelvic disorders. Praying that God will heal her in whatever way He sees fit. Be encouraged!!!!

  • Thank you, I'm the daughter!! Thank you and hoping you are feeling stronger with Gods help

  • I also had a hysterectomy and prolapse operation and from day one was in real trouble. I was unable to sit at all and the burning pain was indescribable. No one can explain the intensity of that agony and nothing would help. I spent a few years being sent around pain clinics and no one was really listening. This site helped me... I found out more about this condition and was able to read up on where experts in this field were available in various parts of the world. Don't give up because there is help out there but its finding what is available near you and by reading posts from other sufferers it is easier to get knowledge and then be able to explain the problem more clearly. I was actually at my wits end when a female pain expert asked if it could possibly all be in my head. i only wished it was!! some help that was but at least it spurred me on to find help. Good luck and don't give in

  • Hi, have you come across the pudendalhope website? It provides a list of some of the doctors and physiotherapists who deal with this condition. I've had some success with physio, but I'm afraid there is no quick fix. There are others who can help as well. A specialist pelvic pain clinic is a good start. Good luck to you all; as much as I hate having this condition, I'd worry more if it were my daughter.

  • She should find a physical therapist that has experience in pelvic pain, pudendal nerve PT. It could really help.

  • I have pn. I have had several nerve blocks. Some doctors only do blocks in one place along the nerve. I have had VERY different results from blocks. I would try another block, even if it's just numbing medication and not steroids. I get much better relief from a block at the ischial spine, than Alcocks canal. Also, you can try blocks to other nerves like genitofemoral and ilioinguinal. I know just how she feels. Keep digging, you will get to the bottom of this!

  • I had a horrible UTI EColi resistant strain. Led to a hypertonic floor which has affected my pudendal nerve. My issue is sitting, sometimes clothes bother, even wearing a panty. I have been like this since October of 2016. The infection almost killed me but now I have all the after effects. I have read so much about this. So far this is what I have found.

    Many doctors don't know how to treat this. I have pudendal neuralgia caused by all of these things. I was mistreated and wrongly diagnosed many times. I am my own advocate and you need the be informed. I have left 2 doctors already because of their lack of aggressive treatment. I have a Pudendal Nerve block and it worked for about 4 hours. Currently on Lyrica 75 3 times a day, Valium suppository, dexamethasone to bring down the inflammation of the nerve and hypertonic floor. I am beginning to have some relief. I am in Miami, Florida but found a guru in Pelvic Floor. Her name is Pamela Downey. She has taught me numerous things. Diaphragm breathing. She says she has to do the internal massages because I could hit the Pudendal Nerve and irritate it more. She showed me the exercises I can do at the moment. Your daughter needs a good doctor that knows about this. She needs a Vulvodynia specialist and a PT Pelvic floor specialist along with pain management. I see a big difference since I started on this drug. I sit on towels rolled up while in the car. I am also taking Vitmain B12 as it helps with the nerves. She should do an MRI of the pelvic area to make sure she has nothing there or a CT with contrast. If she wants to talk to me I am more than willing to help anyone. I have been in my own desperation for months. Leanne 786-210-1896

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