Pelvic Pain Support Network
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Butch12

Hi I had a prolapse operation 3wks ago I’ve been left with pudental neuralgia has anyone else have this and how long does it last thankyoi

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sorry to hear your surgery caused it:( I also have PN, it’s not a transient issue unfortunately, start with finding a very good pelvic pain dr who will offer a treatment plan. Are you on meds now?

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Hi yes oramorph paracetamols gabapentin im having a really bad day today waiting for seorgeon to phone me hopefully I’ll get a injection of steroids thanks

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Paracetamol won’t help.. you may need to add nortriptyline to the above meds to ease the pain. I am very sorry.. but PN sucks:( did you wake up from surgery with pain?

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Yes the pain was there as soon has they took the catheter out I screamed the room down when I sat down I wouldn’t wis that pain on my worst enemy I phoned my surgeon yesterday and his told me to take extra gabapenton 3 times a day to ease the pain x

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Hi Butch12,i was told by my top surgeon in London that I needed to be taking pregabalin and amitriptyline to ease the pudental neuralgia, have been on them since 2013 and these 2 meds keep the pain at bay . have to build up gabapentin every day but I found they didn't work for me even on the highest dose so was prescribed pregabalin and amitriptyline, never looked back since. They can cause weight gain though be it any of these meds

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Thankyoi for that information are you able to go back to work on that medication and drive I’m on pregablin 100mg 3 times a day with paracetamol have you been on your medication for that long like you said x

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Hi, yes I have been back in work since dec2013, as I had my surgery in 2012

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Please to hear that how do you manage with having pN are you on a lot of medication I’m 3wks I’n and hoping to get back to work after 8wks x

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I had a bladder and rectum prolapse plus a tot (mesh) but had to have that removed a year later was in such agony all the time 24/7 no one understood my pain I just knew it wasn't right but like I say back in 2013 I had the mesh removed but this didn't make the pain go away. Once the nerves have been damaged through this kind of surgery the pain will always be there so I was told and I know it . so been a chronic pain sufferer now for5yrs. will have this pain for life but with the pregabalin 300mg in the morning and 300mg in the evening plus 75mg amitriptyline in the evening I feel almost pain free most days and have a good quality of life and that suits me fine, I gained weight almost immediately from the start of taking these 2 meds but as someone once said in a post weight gain v pain. I know which one I prefer that's for sure

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Hi Butch12 and I am sorry to hear about your nerve issue ... I had prolapse repair surgery done 1 and 1/2 yrs ago and have just been diagnosed with PN so it is good that you have learned of this early on...I can't take meds I get reactions to it all.....I;ve been using cbd oil and it dose seem to help...I don't know where you live but I went to see a dr. Richard marvel in MD in the usa he is one of only a handful of Dr.' in the us that dose any type of correction with or without surgery ...I was told if I get the prolapse surgery undone I will be 80 to 90% pain free within 3 to 6 months I am going to see another urogyn Friday to see about mine has been a long journey...my biggest issue aside from pain is the feeling of a ball in my vag.....I hope this helps and good luck

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Thankyoi for replying I’m thinking of asking my gynaecologist to take stitches out and let the ball thing fall in to my virgina I’ll do any thing to get rid of this pain I can walk a couple of yards without pressure in my bottom x

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I feel your pain....before you do see if you can't see a PN dr. to my knowlage there are only a few in the u s again I saw Richard p marvel in Maryland you can google him I will keep you in my prayers

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I wish I was diagnosed earlier my uro gyn kept sending me to other dr.s for conditions I didn't have it's been a nightmare

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Ah thankyou I live in England I’m going to see my gynaecologist tmrw he has to do something I can’t walk a. Couple of steps without pain but pizonthankyou so much for your replies they’ve been a good help thankyou x

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Hi Butch12 Ive had PN since my op too which was a rectocele repair I had my op over 1 year ago It has been terrible I have been taking Gabapentin and amitriptylin 20mgs to sleep Also take Pilates and physio My urogyn said he did not know what my pain was and he is a top surgeon in the nhs I had this op privately at a Spire hospital by him and only kept in 2 nights Very poor care post op I would say he was more interested in the money than the patient

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I'm happy to reply take care and keep me posted good luck to you I go tomorrow to the new urogyn (2nd visit) to discuss the surgery????? so not happy about this

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Hi Butch just wondering how you made out with your dr. and how your feeling

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I’ve been put on oramorph and 100mg of paragabin 3yimes a day it helps to numb the ache but I can’t keep taking these for life I need to get back work my daughter takes me shopping in the wheelchair I hope this is not a permanent thing x

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Hold your head up I'm rooting for you...my dr. wants to confer with the PN specialist in MD and another dr. before he will remove the stiches...he wanted me to go back to the original sergeant because every dr. has there own way of putting them in but the original dr. let me live like this for 1 and 1/2 yrs now I have no faith in him so they are going to put their heads together one dr. wants to take all the stiches out and the other wants to take only the ones close to the PN and the siatic nerve....the timming couldn't be worse i'm going to miss my god daughters wedding ....I hope you feel better soon...do you have any PN specialists in or around you area? Keep me posted I will include you in my prayers

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have you still got stitches in after this long time I thought they rot out if he can still do it I’m going to ask my seargon thanks x

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hello...yes the stiches are permanent they are made of a braided gortex material, I think that is the problem I think my body is rejecting them...no one has said that but 2 of them have crystalized which means they have formed a blood blister (if you will) on them and they have to come out they are causing inflammation...they do have stiches that dissolve very slow...but a permanent stich ensures nothing to fall again....no mesh was used and the material is suppose to be a different material then the mesh??? I really don't know much more I just hope they can leave some of them in I just want my life back I wish I would have gone to this out of state dr. sooner I still can't believe that the uro gyn that did the surgery wouldn't have thought of the nerves being interrupted I have been suffering with this for 1 and 1/2 yrs....that is why I said it was good you found out so early exactly what was wrong I've been to sooo many dr.'s trying to find out and the original dr. keep wanted to put me back in for surgery for things that aren't wrong...I feel like he wanted me to be his mortage payment.....how are you feeling? What does your dr. want to do for you other then medication?

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Hey Butch I've been thinking about you how are you doing?

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Had a bad day yesterday phoned the surgeon he has told me to come back down to the ward and he’ll put another steroid injection up my vagina at the back where my bowel is and he increased my pagagaben to 150 mg it’s helped a bit still can’t walk far I’m fed up need to go back to work thanks for asking x

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So sorry your not feeling well....I know and feel your pain but as I said before I am glad you found out as early as you did I agree with peril if I would have gotten a second opinion I think I would be feeling a lot better??? My new Dr called yesterday and I will have out patient surgery in a couple weeks I pray for us all and hope this is the end for me I don't want to keep having to have surgery after surgery I am so tired....please keep in touch and again I will keep you in prayer

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So sorry to hear about your pain. I was initially diagnosed by my GP practice with a prolapse, but after seeing a private urogynaecologist (I couldn't bear to wait for an NHS appointment until 10th October), I was told I didn't have a prolapse, but genito-urinary atrophy. Another GP did put me on Vagifem, but didn't pick up that it wasn't a prolapse. The private consultant told me to remain on Vagifem and he also said I needed Ovestin cream. I am waiting to start this. The moral of all this is, try to get a second opinion. The consultant said GPs don't know much about gynaecology as they usually only have 6 months training, and don't always come across the problems we all suffer from. I am angry that I was mis-diagnosed by the GP practice, and had to ask to be referred to NHS gynaecology, but with a 3 months wait. I'm glad I went to a private consultant, but it cost me £200, which I can ill afford (I rely mainly on the State pension), and had the worry of believing I would need a prolapse operation).

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hello Butch12 just wondering how your feeling? I hope all is well and that your on the road to recovery please keep intouch

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Hi yes was feeling ok then 2 days ago I had a prolapse back in my virgina been to my drs and he said the stitching had come away and my eutruse has falling back in he emailed my gynacologist for an emergency Appointment but I told my gp I’m.not going in for operation I can’t go through that again I’ll put the pessarie back in hope everything is ok with you

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sorry to hear of your troubles I will keep praying for you I hope the pessarie works for you I go in next week I am very scared take care and please keep in touch

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Hi Butch I've been thinking of you and praying as well I hope you are feeling better please let me know how it's going

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