Help

I'm at wits end and almost climbing the ceiling with chronic pain I am in a really strong concoction of pain relief but it takes edge off nothing more. I have to top it up with ibuprofen every 4 hours. Pain is a result of a terrible delivery during childbirth where my pelvis was crushed and my pudendal nerve was severed I cannot go to the toilet and have no sensation during sex I'm 31 and this has been going on for 3 years now. I live in Scotland and have the top gynaecologist in Glasgow however looking for a pudendal nerve specialist who can help me. I am desperate

19 Replies

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  • It sounds like you're having a tough time. Pudendal nerve (PN) pain is awful. Sounds like your are having a flare up of symptoms. Perhaps you could ask from some stronger pain medication to get you though the rough patches?

    As for your delivery, I was quite shocked to read about it, it sounds like Victorian days torture! Awful and shouldn't happen in this day and age! I'm glad you have a good gynae, but few are taught about pelvic pain. (Please could you sign our petition to try and change that, see my other post). I see Dr Greenslade in Bristol. I'm sure others will recommend someone in Scotland/the north.

    Have you tried physical therapy for the PN pain? I see a local and he's helping me with the pain from the 'knock-on' effects of not sitting or walking straight for over 3 years. It's the hi light of my week at the moment! Sorry to ask, but do you suffer from incontinence as the nerve has been severed. Must be awful.

    Good luck and take care of yourself.

  • Hi thank you for your reply, I do suffer incontinence so have to wear pads and have catheters and this mini colonic irrigation thing for going for a no 2 or it doesn't work otherwise.x it was pretty horrendous my little boy is 3 tomorrow needless to say I hardly slept last night and I'm sure tonight will be the same. I have something fear about that night and the flashbacks just paradise me. I have tried physio but it doesn't work as I cant feel pelvic floor or not much else but the pain is always there sometimes stronger than others however I feel my body has been on same medication for 3 years and I have built up quite a high Tolerance so not sure what to do next

  • That sounds so awful. I use an irrigation kit too if I get constipated. I hope you have sued the 'doctor' that did this to you. First time I've ever heard of it being severed. Have you ever had nerve blocks? Not sure how that would work with no feeling. Keep in touch and let us know how you are. Rest as much as you can (difficult with a little one I know). Maybe you could get a referral to a PN specialist to see if they could make any new suggestions for treatment. Take care

  • I amin process of suing NHS as it was due to neglect. Long story me and son nearly died during delivery. And now I can't go to toilet by myself can I ask is it the peristeen system you were using

  • I wish you luck, I hope you get a decent payout. It won't undo the damage and make you better, but it will at least help you access treatment privately and hopefully make things easier. I use the Qufora irrigation system. Since I had the rectopexy op I can go much better, really struggled beforehand. But if I get constipated at all I have to irrigate. Straining will undo the surgery and I don't think I have any muscle strength left in my bowels. Do you have a stoma? You don't have to explain if you don't want to, don't mean to make you incomfortable.

  • You are so young to struggle with such pain and disability! No easy answers and I don't mean to be simplistic. But it never hurts (no pun intended) to try 5 slow deep breaths or other calming breathing. That intervention frequently throughout the day/night will allow you to decide what will be most helpful to reduce pain. When you are able, read through the site for practical tips which have helped others, such as cushions, ice/heat, assisstive devices, how to ride in cars. For example, I had to use adult pull-ups for a period of time and it helped to get clothing and hygiene tips. You can regain a life. Keep us posted, we care.

  • Sometimes it's hard to count to 5 with a 3 year old running about. Thanj you for taking time to reply I qm young but nearly dies due to negligence. I am still here and still fighting what Doesnt kill you makes you stronger

  • I'm so sorry you're suffering so. I've been dealing with pudendal neuralgia for over 7 years now. If your nerve is severed it sounds like a different issue. I would see a pudendal nerve specialist. I live in the u.s. but there are specialist near your area I believe. Pudendal hope is a website that has a lot of those answers. Research the doctor as all doctors are not equal. I have found these websites have been valuable in figuring out who to see. Hang in there. I know it's tough with a young child.

  • Thank you you have my complete empathy.x I have a great gynaecologist however not pudendal specialist

  • Maybe this is TMI, but there are various bowel retraining programs depending on the cause of your constipation. That's tough to have both pain meds plus severed nerve causing constipation.

  • I'm not constipated the faeces are there I just can't empty as nerves are severed

  • Yeah, as someone else mentioned, the pudendalhope.info website has a list of pudendal nerve doctors. Maybe they can try cryotherapy, in which they freeze the nerve. You might try methadone if a doctor would prescribe it over there in the UK. I'm on a small dose of it, and it takes away about half of my nerve pain.

  • I didn't know that would be an option. What side effects does that come with

  • Nothing near as bad as it sounded like your pain was.

  • On scale of 1 to 10 10 being the most it's a 9 and 10 all day every day

  • I always think of a 10 being like sawing my arm off with no anesthesia, while others say it is more like pushing out a baby during childbirth. Make sure to leave room for if the pain ever goes higher. Doctors expect you to be near unconscious and screaming wildly if you say your pain is a 10 (because a 10 is the worst pain possible). If my pain were severe (a 7 or above), I would take the strongest med available, while also keeping in mind it's for nerve-type pain (some meds are better than others for neuropathic pain). Methadone is for moderate to severe nerve pain. My pain is an 8 if I sit without it and anywhere between a 1 and 6 with it, depending on if I get the sharp pain that day or just the burning and how long I sit for. That's on a relatively small dose though with no noticeable side effects. If I took a double dose, my pain would be like a 1 or 2, but I would start to get a little chatty and a bit hyper. That's my only noticeable side effect and it's only if I take extra, which I rarely do. But you'll need to research on WebMD and talk to your doctor about any other possible side effects because everyone is different. But for me, it's been pretty easy. You would need to start on a really small dose for a couple weeks because it builds up a bit for 2 weeks. I started with 2.5mg per day, shortly went up to 2.5mg twice per day, and a couple months later increased to a 5mg dose a few times a day (and am still on that dose 5 years later). Some doctors who are not as educated about it think it's "bad" just because it was first used to get heroin addicts off of heroin. It's now prescribed more for pain, but the stigma is still there. A pharmacologist/pain doctor I wrote to also recommends Nucynta for nerve pain, but after doing research it looks like it probably wouldn't be as strong as methadone, and therefore probably not as helpful for me, but you may want to research that, too, in case your doctors won't prescribe methadone.

  • Hi, I am sorry to hear of your horrific experience during child birth and for you to have to go on suffering all day and every day since. It must be absolute torture for you. I am pleased you are taking legal advise / action you deserve to be financially compensated as you will need the money to pay for a very special pudendal nerve specialist to put this right. it may also mean that you have to go international to find this pudendal nerve specialist. - Please could you research Doctor Michael Hibner, Phoenix, Arizona, who has dedicated himself to helping patients with pudendal nerve and pelvic pain. He is also I would say the pioneer for treating the problem nerve with ' ice ' instead of botox or cortisone injections. The ' ice ' treatment apparently is permanent pain relief. - You can google ' Doctor Michael Hibner, Phoenix, Arizona.

    Doctor Hibner has written many articles on pudendal nerve pain and sees many patients who have this problem following child birth. Although yours is extreme as your pudendal nerve is severed, I believe this is the Doctor who can help you.

    Please let us know if there is anything else we can do to help you. Good Luck and all the best.

  • Thank you so much I will certainly follow up on Dr hibner.j am willing to try anything to stop the pain it's horrendous. Xx

  • I am so pleased. I know you can email his clinic so that you can explain your situation. If you do go I would get your solicitor to get all your expenses included in your compensation. I would definitely trust no-one else in your situation. Please hang on in there and let us know how you are getting on. You have our greatest admiration for coping with such horrific pain and looking after a toddler. Be strong. xxx

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