I've suffered this pain now for 8 yrs ,after an illness and weight loss of over 4 stone ,over a 4 month period ,find it hard to stay sitting without constant chair wriggling .
I'm female aged 68 yrs
I would welcome any advice .
Prudental pain : I've suffered this... - Pelvic Pain Suppo...
Prudental pain
Written by
Marlene47
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31 Replies
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I've had PN since surgery for a prolapse over 6 years ago. The surgeon and his colleagues wouldn't admit the nerve had been damaged and treated me as a liar, it was awful, at least if they'd admitted it, I could have got help. Guess in this world everyone worries about being sued. I'm telling you this as knowing what you've got at least puts you on the right path for medication. I hate taking anything but can't manage the pain without it. I take the minimum dose as I help out with my 3 year old twin grandchildren and need my wits about me. I take 150mgs pregabalin and 10mgs amitriptyline every evening about 8pm. I also use vagifem in pressery form twice a week and a topical cream outside the vagina every evening. Recently I've tried acupuncture, they used an electronic version. I had about 7 sessions but it didn't help. Physio is the best thing I've recently found out but it really should be done as soon as possible after the damage has been done. Wish I'd known sooner but I'm doing it now. I bought a book through Amazon by Amy Stein called heal pelvic pain. It has exercises for women like us. I've also had 5 nerve blocks.
I'm going away tomorrow for a week but I'll check out my messages when I get back. If your live near Bromley, Kent id be happy to meet up.
Hope this info helps.
Paulyne ,thank you for quick reply interesting read ,will re read again make sure it soaks in ,(age thing) .I truly believed after my illness it was a second menopause ( not unusual for some after long illness ) so iv been looking at it as seperate issues always thought I had Sciatica owing to that amount of weight loss. I looked dreadful .Kept telling drs all fell on deaf ears ,just don't listen .i bought a doughnut ring one for chair. And another for my car ,no relief as it was in both areas think Dr thought Gyne even after 3 checks put me on Ovestin ,that never helped this is over 8 yrs ,I've now got a heating pad ,helps but not a lot .Wish Id persevered not left this pain continue for so long .Really didn't know where to get help ,you've helped me here .The anxiety it's raised in me over this condition alone is dreadful ,due to all this daily discomfort .Tend to stay in home because of it ,changed my life so very much .Many thanks again ,Im deeply sorry you have this .
I live here in Dorset thanks for info Im now looking to the physio side for help on what you placed . Marlene 47 x
Hi Marlene,
I'm also in Dorset as well as several others on here. Have you seen any specialist locally for this or just a GP ?
Hi ,I've seen drs local ,but no matter how many times I've said how painful this is ,nothing's been done ,nothing .Ive been like this for just over 8 yrs ,I was reading in the Daily mail an article going back some 5/6 yrs ago ,which described what I was feeling ,took this to my Dr ,and said this is what I'm saying it feels like to the letter .( I have kept this letter to a Dr Scurr ) this Dr said Prudental nerve entrapment,he knew straight away what this women was asking ,as he'd had a male patient who had suffererd 15 yrs before being finally diagnosed .My Dr to say the least did nothing ,so here I am these yrs down the painful road in a much worse condition as time has passed .
They treat me for Gyne as it has affected that area ,numbness ,but how could it be Gyne as Id gone through menopause ? But what did I know ,I'm not the one with a med degree .As Id had a bad illness 10 yrs ago was told my immune system was out ,hence can bring back 2 nd menopausal symptoms ,so how come I had bowel issues ,not had till this all began I asked ,oh that's IBS ,put me on a Fopmap diet .I can't travel far in a car ,due to the pressure ,can't sit on a train ,told drs this again fell on deaf ears ,so for past couple yrs I've just given up ,and try and cope with the pain of it sat and stood .Im in my own bubble with it I feel ,let down asking for med help and nothing forth coming .This is not me at all ,I've totally change ,how a weight loss so quickly could bring this on .
Many thank you's for reading my tale of woe ,but you understand how Im feeling sat typing this in discomfort .
I was surprised reading there were other Dorset people on here with same condition ,sad as that is to knowing that ,Levator ani syndrome a friend in the USA was told she had ,but no she's still got it ,I will now tell her about this .
Warm regards Marlene 47 and thanks again Sigh of relief just talking about this .
Hi Marlene 47. I have had exactly the same experience as you. Just coming down from the worst flare up ever. 4 months of agony. I've suffered for 5 yrs post bowel prolapse op. My surgeon didn't want to know when I saw him post op. I was treated abominably. Retrospectively I realised he knew exactly what had happened but was not going to admit it. Years later here we are battling a health service which doesn't want to acknowledge us, has no training to deal with pelvic pain as a whole entity and can only offer us meds which have their side effects. I do feel for you. We all suffer so much. This is a good site but also if you are on Facebook try Pudendal neuralgia and Pelvic Pain Uk. A really friendly supportive bunch and in UK. Keep smiling Marlene. We'll get there 😊
Hi I have pudendal neuropathic pain discomfort too. and it took 6 years to get some kind of diagnosis of this. But my coccyx was also pulled out of alignment at same time during gynae op.
Change your GP, and if no other decent GP in that surgery. Change to another Surgery. If no transport, make enquiries to see if they do a voluntary car scheme in your area for taking people to surgery etc.
. I use Tempur seat cushions, well 2 these days. Can't go anywhere without them. Have had covers made with straps so I can carry them cross body.
Could you tell me what the electronic version of acupuncture is in more detail! I can look for it in the US? What license does the practitioner need to.have and What is the machine called they used?
Sorry to ask do many questions, but what part of the body did they do this? I would love to try!! I would do it vaginally with medication if I could find someone skilled and if appropriate.
Many thanks for sharing.
I'd be very wary of Electro Acupuncture. I was damaged with it and still have the soreness pain to this day after 18 years.
Thank you much appreciated. Are you in the Us? Was there anything specific that helped? Mine is not entrapped but damaged.
I don't know whether mine is entrapped or damaged. I just know it makes life painful and difficult to cope on many an occasion.. I'm in the UK.
Hi Pinky . How did you find out whether it was damaged rather than entrapped? I'm in uk
Im in Us, I had a scan called a Neurography done done in Norristown Pennsylvania. A Dr. FULLER came up with the test and apparently only he can read the results.
It is a fat compression test.that takea the fat out of your body on the scan so they can see the nerves.
Dr. FULLER is not in the us. They send him the results and he reads them.
Thank you Pinky2233
That is so interesting. I have never heard of it before now. I will look it up, but it is very doubtful that it would be available in the uk. Still I could be wrong
neurography.com/dr-aaron-fi...
It is Dr. AARON FILLER. (Not Fuller)
Pelvic physical Therapy has been the only thing to help.
Im not sure but I think there are other scans to find if the nerve is entrapped or pne.
Many thanx for the info Pinky.
Trigger point therapy damaged me further and continues, but perhaps physical therapy is different.
londonneurography.comHope it helps, so Neurography is in both Us and Uk. See link above.
For me It was great to rule out the entrapment.
I had trigger point injections too but no help.
My pelvic physical therapy has been safe and a slow process. Very different and healing, I live for the improvement however slow. I take medication for deeper tissue and faster releases of the fascia as it releases but it frees the nerve and I can feel each nerve release. I have many damanged nerves.
Thank you for your comments . Glad to hear your physical therapy has been safe. I have looked at that website before, but know that I know. Your experience, I see it in a poss next step for me. Will be interesting to see how much it costs.
Thanks again for your comments on electro acupuncture. I wont pursue. I hope an Mri or.the neuroscan tells you if it is entrapped.on not. It could lead to answers and with prayers, healing soon. Keep me posted.
Hello I too have been suffering your symptoms following a vaginal hysterectomy procedure getting on for 11 years ago. Please get to a pain/Neuro Specialist as mentioned above from Judy_B and then you be able to get a diagnosis which is very important especially if it concerns the pudendal Nerve which could be entrapped. I noticed you suffered from sciatica which is a secondary caused by the pudendal nerve entrapment . As your muscles will be going into spasmodic movements due to the pain. Please get a diagnoses. You will get good advice from Judy B and her colleagues on this forum.
Just out of interest I was put on to Rivotril Clonzapan which helped the vaginally spasmodic electric pulses a lot. Actually helped a lot overall. Yes sitting g is one of the worst things to agrevate the Pudendal Nerve.
I wish you luck on your journey to recovery.
Kind regards
2cv1964
Where do you find a Pain/Neuro Specialist in the Uk? This sounds just the right person. My doctor has no idea where to send me and has left me to research. Also advising me to pay privately as I will not get to see anyone on the NHS when I'm in crisis. My problem is not 'life or death' so I will go on a long waiting list. This is a problem in UK, as most people don't have private medical insurance as we have the NHS, which is our 'right' to use. But we can't access it when we need it. I have learned something from you 2cv1964. I have agonising sciatica and piriformis syndrome. I now realise this is a side effect of PNN. Thank you for this. It goes on and on. I have had no proper tests or diagnosis. This is a ridiculous situation we are all in. There needs to be a proper and defined process to diagnose pelvic pain in all it's form with trained consultants. But it starts with GP's. As part of their training they must be able to recognise and understand the symptoms of pelvic pain and have a system in place to direct us to the right people.
Join the online pudendal hope neuralgia closed Facebook group
Hi to all here ,just on my pad ,what a read again ,by you to.Sad reading to this big ,big problem .Ive not seen a Dr for almost 2 yrs,just trying to live with this daily ,Im now given encouragement to moving forward by all I've been reading here and on the FB site I've now joined ,what a good site it is ,but again sad to reading the postings .
I've been talking to some ladies from another site here in UK prior to coming on here yesterday ,they also have same issue ,I did mention Id looked at Levator ani syndrome ,to which they went and had a look at ,came back and said that's how theirs feel ,but now I willl tell them to come here and the FB site ,this is where I should have looked at yrs ago ,after I read that piece in the Daily Mail .
I've had anxiety really bad ,from the sitting side of this ,tried everything to get that under control ,meditation etc ,but I now know what I called Gyne anxiety to drs ,is Prudental nerve doing this ,knew there was a connection .never had any Gyne ,bowel issues ,so reading your post Im relieved ,and why it's continued way after I put that weight back on .
I have 4 cousins who have Sciatica ,plus saying also the Gyne feeling ,2 are on Gyne meds for the discomfort ,3 have had hysterectomys ,will bring that up in relation to sciatica ,and Gyne probs time wise since those ops ? Never knew any of these probs can arise from that until I came on here and FB ,we talk all of us,see if this is what's their issue .
Can't thank you all enough ,your posts have helped so very ,very much .
No one I agree should be in this pain year in ,year out .debilitating as my MdDs and tinnitus ,and anxiety .Tinnitus no cure .Now to move forwards ,plus I know I'm not alone in this .
Warmest regards Marlene
I have spinal cord injury and pudental neuralgia. It took four years to diagnose. The one thing I was told is NEVER TO SIT!!! I have to lay on side of bed. I have entrapped nerve in rectal anal area that gives me excruciating pain and flair up with burning. I have been to every Doctor, pain management, injections, medications. It radiates to my vaginal area. I have learned more then anything, no matter what kind of pillow, I can never sit again! Right now I am on the most helpful med for PN. It is called Baclofen. I take 5mg with 5mg of valium in morning and night. The dose can be increased. Its the first relief in four years. I still can get a flair up, but the meds have really helped!! Hope this helps you! God Bless!
trishj46
Cold Lazer Therapy is supposed to help with nerve healing, tinnitus and migraines.
It is not cold just a low level lazer (like a flash light) but deep.penetrating that restimulates the mitochondria to re.charge, re produce healthy cells and provide deep tissue lowering of inflammation ( as I understand it ) to help these conditions. I have found.it, Not painful and without any side negative side effects.
Find a pt therapist who uses this and in time you could consisder rent/buying your own to use at home with the proper settings from a health care professional. Especially for the tinnitus.
Trisha ,thank you ,just reading these post helps me understand this condition ,in relation to myself ,I suffer from Mdds syndrome ( swaying and rocking motion ) so I tend to need to sit a fair amount ,this has aggravated this condition whole lot more ,over the duration I've had to endure this .The Mdds ive had 4 yrs ,but think Tinnitus may have brought this on ,the 2 go together normally ,so never a good day here .
You've certainly got a lot to deal with ,Im so very sorry reading you post .Where do you live ? I'm sat here on heating pad ,totally fed up .yes it does help to talking it through with others Gob Bless Marlene x Hug
Hi marlene47,
Just to say I'm another member who lives in dorset.
I believe I have PN, but no diagnosis yet. I am just about to start physio with UCHL next week. If I don't get anywhere I'm seriously thinking of changing to the Bristol team......... Or even visit The Nantes team in France .
It means expense and travelling... But a few years down the line I'm fed up ( as we all are!!!)
You could always ask your fr for a refferal to one of the PN specialists in London or Bristol?
All the best.
Hi Suzy ,Im here in Poole ,I've got a balance prob ,so travelling is really limited ,even a trip to Poole Hsp takes its toll on me ,I find it hard to sit in a car ,train etc ,sets me off down anxiety road .im hoping some physio might just help .
How long have you had this ? ,I've been telling and describing this to drs ,but they never done anything so I've been in agony .i even took an article I found in for drs to read ,describing what I was feeling .2 yrs ago ,I just gave up .The pain they needed to feel for themselves .
I hope you get in to see someone ,but how people can sit to getting from A to B ?
Marlene
I don't sit.... I lay down in the back of the car and my husband or friend drive me!! No way I could sit long enough!
I was seeing a colorectal surgeon a couple of years ago in poole hospital. I'm down in weymouth. It feels like we are in the back of beyond down here... With no specialists.
I suffered with bad anxiety when this all started... I still get anxious if I know I've got alot to do, or have to be somewhere in case I'm in agony, but I take citalopram now and that has helped me enormously.
Suzysheep x
When I use to ask my Dr at the very start of what I thought were Gyne ,meno ,is this how all menopausal symptoms end ,as this is what I truly thought this in the front was ,and the back a seperate issue ,3 gyne checks later nothing over a time of 6 yrs ,still they didn't catch on .plus they read what Id shown them I felt like .
You wonder what your notes consists of ,join the dots ,like I've had to ,I've wanted to scream at them ,one Dr specialised in female probs ,as I had an immune prob ,asked her is it allergy related .No came back from her .So on and on it went ,one even took a swab ,never got back ,so took it swab was fine .Should have gone to a vet ,maybe had better luck at diagnosis .
Dorchester would have been closer for you ?
I rarely venture far outside ,only short car trips ,I know what your saying .Wish drs could just experience what we feel .
They put me on various meds for anxiety ,knew that wasent going to help ,as pain was so great ,and they didn't .Thats all they offer if female .Then they put us on hormone replacement ,when in fact this is the cause ,not meno .Ive even asked is it AV . Do you still feel it if stood ,as I do ?
Thanks Suzy for chatting ,hope we both get help
Marlene xx from a wet and windy Poole
Hello there to all of you. After being on this site and reading so many sufferers posts.. It all boils down to the fact that specially in the UK that the medics are not aware of pne or a lot of other pelvic pain disorders..The Gynaecologists seem unaware of being able to diagnose the problems so we need somehow to do a petition to the minister of health so that Dr's And gynaecologists are trained to understand pelvic pain and diagnose the problem. I simply can not bare the thought of so many people in pain. I have been operated for Decompression surgery in Nantes France and in slow recovery at home.
I may ask The board on this forum if they know how we can get something off the ground for the UK sufferers. I live in France. But education and diagnosis is the big issue to prevent the terrible wait.
I will try and look at the f.b. site as it may get lots of men and women to put there names forward. Hope I have not rocked the boat!
Lots of good wishes for a brighter future free from pain
19642CV
I'll back you on that one. The US has made great strides recently with a petition (I kept the letter written to lobby gov). There system is very different because they pay for Health Insurance, so therefore would be able to access medical attention when they need it. Our system doesn't allow that in Uk. That needs to change as well. We need to see a specialist when we are on a flare up for diagnosis. Not wait in agony for months for an appointment when pain may have calmed down. My doctor tells me if i want to see someone, then it's easier if I pay but the NHS is 'my right'. I've been paying into it for years.
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