New to site

New to site and looking for support and answers. Have had severe pelvic pain for 16 months now. The pain originally started with prolapse, so had a vaginal hysterectomy and repair. The repair didn't do its job and i had a second operation last October. I still get intense pain on sitting and find i am limited in all areas as to what i can do without the pain becoming unbearable :-( Have began to get very frustrated with being dismissed by GP's and Gynecologists and have started doing some research online. All the information i have found leads me to believe it is nerve damage, the info about pudendal neuralgia seems to ring alot of bells. Anyone out there similar to me??

Wendy

12 Replies

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  • Hi Wendy ... what you have described sounds just like what has happened to me .. and I am so sorry that you have now got such horrid pain. I'll explain as brief as possible my story and my journey . Started in April 2007 had vaginal hysterectomy and front prolapse repair. Agony for weeks and still very uncomfy down below. the gynae decided I had a rectocele so had that repaired in the September. Again agony for months this time .. felt like I was walking around all the time with a load of barbed wire inside me. She decided that I had undissolved stitches that needed to come out and so under the knife once again. That was the last straw. I was left with unbearable .. what I was told is "nerve pain" .. nothing more explained to me. Have tried just about every pain killer going, but nothing works , have had nerve blocks ... no good.. tried hypnotherapy, acupuncture , mindfulness meditation ..... nothing works. In the end I was so terribly low that my gp referred me to St Thomas's for the "Input" programme ... a course that helps teach you how to live with and to cope with chronic pain. It was my life saver.. literally. guysandstthomas.nhs.uk/our-...

    And I have "coped" but get dreadful flare ups often. Wendy my heart goes out to you, and I do hope you can get some help and relief with your condition. Yes, pudendal neuralgia does describe how we feel.. there are some very helpful and supportive face book groups (if you are a f/b user) .... and you will see you are not alone with this . Do pm me if I can help anymore, or if you just want a moan... I do understand your pain. Good luck x

  • Thank you Suzie, your kind post made me cry. I have at times thought I was going mad as I could find no one that could understand the pain. Thankfully I have a very supportive husband, but even he struggles to understand the constant pain. I think joining this site is a good move 😃 At last people who I can talk to and can understand what it is like. I am on face book so any support through that would be great. Reading the replies to this it looks like it is going to be a long journey. 😢

    Thanks once again for your support

    Xx

  • Wendy I, too, have a great and supportive husband (been married 46 years !! ) .. I would be lost without him. The face book pages that I have joined and are so helpful are : Pelvic Pain Support Network .. Pudendal Neuralgia and Pelvic Pain .. and also this one : Adhesions pain and suffering . The "nerve pain" we feel can be attributed to scar tissue / adhesions ... and the files sections on all these pages give some very helpful info. very best wishes to you and keep in touch... let us know how things go for you xx

  • Hi, Sorry to hear you are suffering. Your story sounds very much like mine! I found that I was not really listened to and had to go through the pain clinic circuit undergoing many nerve blocks, attending seminars on pain, and talks with different experts only to be treated in the end as if i was making it all up. My doctor was supportive with me but didn't really know where to send me next.

    In complete despair one night I found this site. Through reading, listening and researching I became much more able to discuss my problems using the right language and with more understanding of possibilities causing the pain. At least then better pain relief was prescribed which helped in a small way There are many people out there suffering intensely and it seems so unfair that this is not dealt with more sympathetically because the pain is truly over whelming.

    There are other sites with information pelvicpain.org.uk provided me with more insight. There are also a few hospitals around with specialists dealing with pelvic pain. Southmead in Bristol is one that keeps coming up and there a couple in London. Just keep reading and listening on this site and you will soon find more!

    I hope this has been of some help too x

    .

  • Thanks Mary. It's been good to join this site, at last I have found people than can understand what I am talking about and I no longer feel like I am losing the plot!

    I live in Reading so am not too far from Bristol or London. After a frustrating and needless delay I have been reffered to a hospital in Oxford. I have been warned that there is a long waiting list.

    I am presently working as a TA in a local school just 3 days a week. Am finding it very hard to work. My days off are spent resting as I am exhausted after 3 days of working with intense pain

    Will take a look at the other site you have mentioned

    Thank again

    Xx

  • Hi ladies. I had pudendal nerve issues after an unnecessary hysterectomy for endometriosis. Vaginal suppositories compunded with lidocaine, valium and gabapentin have helped me. Pelvic floor physical therapy as well as getting my peripheral nerves checked, the ilioinguinal iliohypogastric and genitofemoral nerves were badly damaged and my dr was able to give me a triple nerve neurectomy which helped stop the pain.

  • Thanks Pepper. Will do some more research, have not come across the nerves you mentioned. How did you get a diagnosis and treatment. Was that through your GP or did you have to go elsewhere?

    Wendy x

  • Peripheral nerve surgeon. GP knew nothing. Physical exam then nerve blocks

  • Hi Wendy

    I don't know where you live but I have found the colorectal surgeons in OUH Oxford very understanding. I have also found a very pleasant and helpful GP who is now leaving! I had a Rectopexy for an internal prolapse and rectocele a couple of years back which helped a bit with the pain but I have now got pain returning which my consultant has diagnosed as pudendal nerve compression. I am trying pelvic physio whilst i wait for a decompression op and this does help temporarily. I am paying privately for the physio but you may get it on the NHS. You must find one who specialises in pelvic pain and not that many do but they are out there.

    It is a long haul to find someone interested and GPs usually know very little about pelvic pain and colorectal conditions in general. I had a massive internal prolapse of the bowel and a rectocele and one of the GP's suggested I was making a fuss over piles! Keep on trying to find some help - if needs be change your GP if he/she is unhelpful. All this is very hard when you are in pain but unfortunately the system dictates this is how it is done. I am contemplating paying for an op as pelvic pain is very debilitating and sometimes if you are able to bite the bullet and pay you could be out of pain sooner. Hope this helps.

  • Hi Wendy

    Just read on and see you live in Reading so Oxford is a good choice. I am currently under Mr Lindsay and Mr Cunningham carried out my rectopexy in 2014. I am going back today for an appointment to see what other ideas they have. Keep on the waiting list as they are worth it. The pudendal nerve specialist is Mr Tony Dixon in Bristol so I may end up there in due course!

    Sue

  • Hi Suzy, thanks for the encouraging post. Still feeling overwhelmed at the moment and beginning to feel that the journey towards a pain free life is going to be a long and maybe even impossible.

    Have not been diagnosed with pudendal neuralgia. But reading up about it has caused me to come to that conclusion. My consultant said he would refer me to John Radcliffe in Oxford, that was 29th Feb. A couple of weeks ago I found out he hadn't done it. Made a complaint and soon after i received an apology from him he said he had 'mislaid' the paperwork. . I have now found out there is an 18 week waiting list to see the specialist in Oxford. So I am looking at a long wait just to get a diagnosis. ..😕. Of I could afford to go private I would. But have had to cut my working hours right back as I wasn't able to cope with a long day. Please keep in touch and let me know how you get on

    Wendy

  • Hi Wendy

    Gosh, so sorry to hear about the delay in referring you by your GP. Sometimes I think they forget they are dealing with people who have lives and just want to get on with them. One way of cutting down on waiting times is to consider paying just for the initial visit - Mr Lindsay works out of the Manor Hospital in Oxford. I think I paid around £250 which then enabled me to see him and you may then be able to get into the NHS system a little more quickly. I know it sounds like jumping the queue but when you are in so much pain ethics go out of the window!

    I am now waiting for an appointment at Stanmore Hospital who have a peripheral nerve specialist who carries out pudendal nerve decompression on the NHS. I still need to make sure it is not my initial rectopexy failure which is causing the pain - possible double whammy unfortunately! I think this part of the body is so complicated with so many nerves running through it that it is hard even for the specialists to make an accurate diagnosis and get it right first time. GP's know so little about it unfortunately and I don't think anyone appreciates how painful it is unless they have experienced it. What type of painkillers are you taking? I find tramodol helpful, they don't stop the pain but do take the edge off it at night and help you get to sleep - eventually!

    I know this makes you feel lousy and the additional frustration of your GP being ineffective really does not help when you are in pain. I am sure there is light at the end of the tunnel, it just takes a while to get there. As I am a bit further along than you are at the moment I will keep you updated with my progress and if there is anything I can help with please let me know. I am starting to become an expert in navigating the complexities of the NHS, so if I come across short cuts or ways of coping I will let you know.

    Have you tried physio? I have a lovely pelvic physio who is incredibly nice who works out of Windsor and I do find it helps to ease the pain when I go to see her. She charges £90.00 for the initial consultation and then £45 after that for treatment which lasts half an hour. If you are interested I can send you her details. Otherwise you could ask your GP to refer you which will take time but may help ease your pain whilst you wait for your Oxford appointment.

    Let me know if I can help.

    Sue

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