don't know what to do next re pudendal nerve treatment

Hi all. I was diagnosed with pudendal neuralgia in june after having a period of 2 weeks of no pain at all following an x-ray guided pudendal nerve block into the nerve via the buttock. The anaeasthetic part didn't work at all but the steroid kicked in exactly 2 weeks after and I really thought I'd been cured. The consultant I am under (who didn't perform the block and gave me a phone consultation 8 weeks later which lasted minutes) told me that it meant i had pudendal neuralgia and she would 'get me in for another one and to buy a coxxyx cushion". I've been waiting 21 weeks and now the pain is worse and I have severe buttock pain and sciatica and a chiropractor has diagnosed piriformis syndrome.My g.p has prescribed pregabalin 75mgs which I take twice a day along with amytrityline 25mgs and naproxen for the buttock pain. None of it helps and I have had to take time of sick which is untenable as I'm a single parent with a mortgage and I also care for my mum who has dementia.I've been feeling suicidal as I have no faith in the so called pain consultant. She rang me after my gp sent 2 letters within 2 weeks explaining the sittuation and I was given 2 minutes of her time,I was so low I couldn't express myself.I asked if she had any idea when the block would be and she just said "i have no control over these things and no, there's nothing you can do, just wait for the nerve block'. I feel so angry as everything i have found out has been from this forum ( and judy and helen have been so kind answering my previous questions).I've got to the point where I don't even know if I should have a nerve block again as I have no faith in her and wonder if the piriformis syndrome was as a result of the first block I had as I didn't have buttock pain prior to that. I am seeing a chiropractor out of sheer desperation and my friend is paying for the treatment and it did seem to be helping the piriformis but now its worse. I can't sit down or lie down without pain and even standing doesnt ease it. I have thought about asking for a second opinion from Dr de mello in manchester but how do I go about it?Sorry for the long ramble, I just don't know who to turn to. Many thanks for any advice anyone can give :-)

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  • My first piece of advice would be to change your pain consultant - if you can. The problem with wretched nerves is that they don't like being pushed around. For many of us have endured years and years of treatments only to find that they aggravated the pain big time. I am in the process of seeing a chiropractor as i have been told that I have SIJD - sacroilliac joint disfunction, where one of the hips is slightly higher than the other, and a coccyx that has twisted causing a twist in the lower spine. It took weeks to get over the manipulations and he told me to dance every 15 minutes for a couple of minutes. Big no no, but back to you if the first nerve block injection helped that that is a good sign. Two weeks however isn't very long at all to have relief. Did you go numb at all when they put the lidocaine in? Also have you had an MRI? thiis is worth having if possible. Maybe your Dr could fast forward one or you if you cry with despair in the Dr's surgery. There is a priority system going on but you need to push it. Maybe the Dr could up your medication to see if that helps. Also muscle relaxants like Baclofen may also give you some relief, keep off of Diazepam if you can. I take Baclofen 5mg at night, must more user friendly. So in summing up my advice would be to change pain consultant, you can do that when you are sitting in the surgery in tears discussing meds and asking very politely for an MRI as you are in despair and have suicidal thoughts. Be strong sweetpea, you are going to have to be. jx

  • Thanks so much for your reply J.

    I had a pelvic mri 18 months ago and a spinal one only a few months ago and all was clear thankfully. I had no pain relief at all with the lidocaine but the consultant didn't even give me chance to ask her why as I know this is part of the diagnostic criteria. I am sure it is the pudendal nerve though as I have all the symptoms and have had this pain on on off for years following traumatic delivery of 2 big babies with episiotomy and tear on left side which is where my pain is and also 2 pelvic floor repairs (anterior and tvt and posterior) after my third child and then lots of aerobic activity and cycling, heavy lifting followed my pelvic floor physio to tighten pelvic floor which I now know are all huge risk factors. The pain has been continuous for 18 months since a vaginal infection which I thought was a bartholins abcess as the pain went when it drained but started up again,all in the side where I had the episiotomy and the sutures for the repairs. I was a gynae nurse and am convinced It was an abcess but only saw out of hours nurse so never got it formally diagnosed. Do you think the pain may have got worse because I'm stretching out the piriformis? The pudendal pain is the same. I have a lot of trigger points and my S.I joints are very stiff. The chiro has been doing massage of the trigger points as well as manipulation. As you know you get so desparate you'll try anything. I have bipolar and adhd and so the gps hardly dare give me anything but the irony is my mental health would be fine were it not for the relentless pain.My adhd nurse was shocked at how little support I've had, There seems to be no multidisciplinary approach to pelvic pain when all we want is to be able to help ourselves with whatever tools there are.I am going to take your advice as I have reached the point of no return, my adhd nurse faxed my g.p yesterday regarding the feelings I've had but sometimes I feel like patient's with chronic pain are seen as neurotic. A physio who I saw re the sciatic pain had never heard of pudendal neuralgia and told me that there was nothing that I could do that would make my pain worse, at which point I burst into tears and was told about the link between pain and stress! I told him I knew only too well having been a nurse for 20 years.... Thankyou so much once more, I feel better just getting it off my chest, Just to know there

    are others who are going through the same thing helps though I wish we could all be cured. One day maybe:-) x

  • Hi sweetpea,

    Don't give up! Sounds like you're running around aimlessly trying to get help, which is something I can remember all too well. I spent a good eight years trying to get help. I was diagnosed with infections, vulvodynia, told my coccyx was in the wrong place, my hips misaligned and sent for pelvic floor physiotherapy which made the pain much worse. I did physio, had accupuncture, went to chiropractors. Some of it seemed to alleviate my symptoms temporarily, but the pudendal pain, which I now know was the trigger for all other symptoms: sciatica, buttock pain, bladder pain, burning pain, back pain, chest pain etc.

    I have heard Dr. De Mello is a good pain consultant,but, I think there is a three month waiting time to see him. And as far as I know, he then tells people, if he believes it is pudendal neuralgia, to have decompression surgery.

    I was seeing a pain consultant in London two years ago who did repeated nerve blocks, which served as a diagnosis, but that was all the treatment he could offer me, and it was at great expense. I eventually went to France, where they repeated the diagnostic nerve blocks and I had the surgery within four months, by which time, ironically, I had finally received an appointment on the NHS to see the pain consultant in London.

    I was also feeling suicidal and hopeless two years ago, but once I got a diagnosis and went to see the doctors in France, I felt like I had finally found doctors who knew what was going on with my body and how to proceed to help me get better. Please get in touch if you have any questions.

  • Omg your response sounds like I wrote it!

    The pain goes everywhere! You begin to think you are crazy!

    They are treating me but said I wait to long when a flair up happens. I have so many questions? How do I cause the flair ups? Why can't they just fix it. Sometimes

    I don't realize the bladder pain or the pain from my rectum, which is gone from cancer, have a colostomy the list of where the pain moves to sounds crazy. I'm so depressed and those don't help in dealing with this.

    Thanks for listening

  • Did you have the decompression surgery and did it work. How are you doing now.

  • Did you have the decompression surgery and did it work. How are you doing now.

  • Dear sweatpea,

    I've been suffering pudendal neuralgia almost six years now but am happy to report after extensive research, support and finding the right people, I'm back at work and living as a 'normal' human being. I had a pelvic ligament removed that caused electric sensations up my spine and had me unable to put any pressure on my heels. my toothache like pain in my buttocks ended up being pn and with nerve blocks and a little endep I'm doing quite well. My story is documented to raise awareness for this issue and to support sufferers that have nowhere to go and deal with practitioners who simply don't understand what this issue is. its all here: pudendalnerve.com.au. I'm happy to say its been a huge resource and help to almost 13,000 viewers (and there are no sponsors or ads, just lots of people in pain surfing for solutions). In particular read this: pudendalnerve.com.au/2009/0... but also read all about my story it may help you and give direction.

    I have not had to have surgery and my pain was undiagnosed for 4.5 years.

    Don't lose hope!!! Listen to Fiona!!

    Lots of love

  • Thank you for your answer Soula :-)

    I have already looked at your story and it's good to see you've not had surgery and yet are getting better.

    The trouble with this country is that there are very few specialists in this field and the G.Ps that I see have very little, if any knowledge of the condition so I haven't had a proper examination to see if the piriformis syndrome that my chiropractor has diagnosed is that or is a worsening of the pudendal neuralgia.

    The chiropractor that I see hasn't treated anyone with pudendal neuralgia but has seen cases of piriformis syndrome.

    My worry is that the manipulation could have made things worse but I just don't know who to ask about it.

    I'm so grateful to the women such as yourself who have shared your stories and given us hope.

    My next move is to see if I can get a referral to a consultant who has worked with the Nantes team.

    Can I ask, were your nerve blocks c.t guided and how far apart were they given?

    Many thanks Soula. xx

  • Hello Sweetpea,

    You can ask me anything. I'm all for helping when it comes to such an unknown issue. Where abouts are you? Have you seen this post where I comment on the locations of the specialists I've found: pudendalnerve.com.au/2012/0...

    Pudendal Hope also lists specialists and is a great forum for pelvic pain too. google them.

    Unfortunately this issue is a process of elimination. You learn what you don't have first. And the onion layers to this injury are very many. I've been peeling for almost 6 years! Sounds like you've had your fair share too. What a nightmare for you.

    I just went in for my 3rd pudendal nerve block. I have them done bilaterally and so far they have been 6 months apart but the last two lots of 6 months were completely different. The later being magnificent. My feeling is now that we've struck early and found my trigger which for me is the rectal branch (pardon the lingo!), we are treating it as best we can. I'm expecting to get better now that I'm overlapping the treatments. My team up with teeny doses of endep have also helped and whenever I feel any fire, sitting in the cold water really helps me. I feel it helps the inflammation stop. Of course this is what works for me. This issues is so different for all of us as we are all so differently constructed (mind and body).

    My nerve block are done under general anasthetic and yes, ct guided as it's important they avoid the implant and my leads. But you simply cannot do this any other way I think. The nerve needs the anasthetic to calm it and your body down after the treatment. I would think doing it without would only bring on a flare up and set you back rather than forward. it's also too excruciating. Dr Peter Courtney is my specialist and he mentioned it was difficult to get to the rectal branch. While I was under anasthetic he would stimulate the nerve in places, elevate me slightly from the sleep and ask if the pain was there, and keep going until he got to the source. Now that's what i call a specialist.

    I don't have depression although EVERYONE tried to add this label. In fact I only ever felt depressed on a nasty cocktail of lyrica and tramedo which I was able to stop thankfully. The doses of endep mainly work as an inflammitory I believe. I don't have many bad side effects. I had to teach myself to cross the road on the other stuff. It was horrific. i don't like the templates that come out when you're searching for a diagnosis. No one ever seems to reach for the 'obviously very upset, hurt, dealing with a chronic condition' they all go straight for 'depression' and in some cases I think this can be damaging and hold up treatment rather than help it. If you can't think, how are you going to seek help?

    The other thing I found that really helped is to assess and attempt treatments one at a time. This pain is so difficult to document and 'find', you can't be precise with it and say, 'oh it's here' so it can be confused with trying lots of things at once. It's slow and hard to approach one at a time, and more painful but in the long run the best thing I believe.

    Have you had an epidural? This can be good as a diagnostic tool.

    xx All the very best wishes to you and everyone else reading this forum.

    Soula

  • Hi Soula

    It's so good to feel I'm not the only one I felt on my own for so long. Sorry if I bore you! I had a hysterectomy last July and on coming round I was in excruciating pain cut a long story short lots of mophine 4 weeks in two hospitals I was diagnosed with puedendal nerve damage. I was sent home in a wheelchair having to be cared for by my husband and 3 children. I was on mophine amtriptiline ( excuse spelling) pre gablin. I was so depressed I felt like not living the only thing that kept me wanting to live was my family! I am now under a Dr Andrew Baroniski and have had 3 puedendal nerve blocks and physio by a lady called Suzanne Brooks and I'm waiting to see a Jannie van de mer a pain psychotherapist. The pain wasn't eased by the first injection but the second and third have been more effective. I still do not feel like myself and I'm so depressed is this normal? I'm also still on pre gablin and co codamol the searing burning throbbing pain is starting to come back! He said he could try the deeper ct guided injections or the pulse injections? Sorry again if I have bored you I just wanted some advice from someone who knows what I'm experiencing.

    Kind Regards

    Grace X

  • Grace I'm so sorry, I just saw this message. For some reason I didn't get notice. I am hoping in the 10 months since you posted you're doing better.

    xx

  • Hi Soula, I've been 'treated' for Vulvodynia and recently came across Pudental nerve diagnosis over the internet.

    My symptoms fit: "toothache" everywhere below, standing/walking helps, sitting - bad, going to sleep - nightmare), 22 years of this...

    You mention epidural. I had epidural 3 times having babies. And yes it could described as 'heaven'.

    I had antidepressants, for pain, which never helped at all (citalopram, amitriptyline).. Antidepressants made me so sleepy it's depressing!! Now feelings wise, I don't feel down (depressed) I get frustrated and angry when it is too much to cope with. And yes you can't really talk about it with people. I read people think of suicide and my heart goes out. I never did but I so understand how mental it is at times to live with constant pain how alone it is when you don't want to stress your family about it.

    Taking Neurontin now, it helps some of the pain, but again I am so dosed off, it is really hard to focus. On the positive note Neurotin takes away the frustration and is very calming. This is not a great solution as I have to work, drive..

    So I am self diagnosing here. What does it mean if epidural removes the pain completely?

    Guys, where do I even start with NHS? I have Bupa.

    Any advice? Dos? Don'ts?

    Thanks much xx

  • Hi Nataly, I'm so sad to read your message and also sad to read you're trying to work through it. Driving or being in a car with PN, in my experience, is one of the worst things to do. I think it just keeps the inflamation going, it builds and builds until you can't tolerate it any longer. That and lifting weight have been my worst activities. The only way to deal with it is to stop bugging this damn thing and that means resting for a long time. Easing the capacity, ease lifting, anything that bothers you. The medication is not to help you continue life but rather aid you to be more comfortable while you are resting. That's what I've learned but of course life often doesn't allow for PN's demands. I've honestly only seen a decent change with my implant first and foremost, and then the ease of activity. And there's no short cut. Have you seen this, I released it this passed week, it's a documentary of my story free to share for everyone. 15 minutes: reelhouse.org/artly/the-hur...

    Can you stop working? Or work less? PN needs so much help. My husband is my biggest treatment and my ability to learn to say 'no, for now'.

  • I had the same issue when i received my first nerve block.

  • Hi I have been under dr de mello for 4 years in Manchester and have been waiting over 2 years for a nerve block under ct he is useless I am taking 1200 mg a day I can't sit down unless I'm on my left hip I take paracetamol for stress headaches all the time I don't know what to do next either

  • I can't feel the inside of my lady bits and it feels horrible to touch sex is just a thing of the past does anyone else have this problem too or suggest anything to help

  • I have an ileostomy bag bladder controlled by self catheterisation on a daily evening routine i don't know when I need to wee other than my bladder being full can anyone suggest what to do next x

  • Hi there,

    I'm so sorry you're suffering so much. Do you have a diagnosis of pudendal neuralgia already? My story is a long one as you'll have noticed. I had awful burning vaginal pain and couldn't sit. Once i swapped to pregab rather than gabapentin it eased a bit. I also take 25mgs of amytriptaline. Have you seen a pelvic physio who is pudendal aware? That was my next step and it helped a lot. however i had awful pain and spasming in my pelvic foor and when i swapped to a physio closer to home she told me she could only offer symptom control. I saw the nantes team in Sept last year and they told me I was entrapped. I am now 10 days post op after having bilateral surgery there and both sides were entrapped. the burning pain is gone already. so my advice would be to get a firm diagnosis, and even maybe pay privately to see another pudendal aware consultant so you can get a block done sooner. I saw dr greenslade last may, the ultrasound block he did didn't work but i was given a ct guided one on the nhs just 2 months later and that confirmed it.I have to say Prof Roberts team have the most experience. If you can manage to do some relaxation that also really helps as you need to quieten down your nervous system as much as possible. I know it sounds impossible but honestly, I does help. Good luck x

  • Hopefully you've gotten some relief. In my ten years of searching for the solution my most hope just arrived in the form of Rivotril, an epilepsy medication. I haven't been this pain free in ten years. Found a Swiss doctor in the middle of Africa while on a missions trip who I consulted. Otherwise had been to Mayo clinic and Johns Hopkins to no avail.

  • Sorry to hear so many of us are suffering and so little is known about this . I slap had a hysterectomy and have been on chronic pain since. Eventually after numerous specialists and misdiagnosed tests and conditions I spent weeks and weeks researching different conditions until I discovered pudendal nerve entrapment. I saw an excellent consultant and surgeon in Bristol both have trained with the prof in Nantes . After ct nerve blocks and high quality ultra sound test I had a diagnosis of bilateral pudendal nerve entrapment. I had the surgery 4? Weeks ago in Bristol and I'm now home recovering . Surgery is a huge decision to have but the pain was so severe I didn't feel I had a choice . Now a waiting game as still in pain but do have the occasional good ish day. If you want anymore info let me know. Good luck hope you get some much needed help, this condition is awful and completely life changing !!

  • Hey I just wanted to let you know about a site called pudendalhope.info it's really cool and it makes u feel secure in the fact that YOU are not alone I have PNE and I'm going for my first nerve block 2morrow fingers crossed

  • Hi sweetpea

    How are you doing now? I think we both had bilateral TG surgery roughly the same time?

    I'm ok managing to swim several times a week but still having nasty angry flare ups it's definitely a roller coasted! Have you tried PT yet and are you still on meds? I'm aiming to do a phased return to work end of June though may be a bit ambitious as still not great.

    Take care and I wish you a speedy recovery

  • I'm pretty sure this is what I have. It varies from an electric shock sensation to severe pain. Don't think it is a coincidence that it started after I had a long soak in quite a strong Epsom salt bath - I remember swishing around so it would 'access all areas! I think I probably inflamed dry, sensitive post menopausal tissues and set up a cycle of irritation.

    I saw the GP at a point when I could barely walk. They had a poke around but couldn't see anything apart from a bit of dryness. Ditto for the gynecologist that I eventually saw. Had a load of tests for all the usual nasties - all negative. Vagifem eased things a bit - imo because it helped that I was less dry but I had to stop due to side effects.

    I'm managing this myself at the moment - keeping lubricated helps somewhat. I just don't know if I can face months if not years of doing the medical rounds again and possibly a judgement that it is all in my head. Plus any poking and prodding just sets things off with a vengeance again. So definitely interested in any self help measures.

    That said if it gets to me hardly being able to move around again I will have no option but to try to get it sorted.

  • I was four years with unbearable PNE pain before I found pain relief through treatment by a pelvic floor physiotherapist . It is the only thing that worked.

    I live in spain where specialist are few and far between and I understand it is the same in the Uk . It's a specialist ,pelvic floor, physiotherapist you need . Good luck

  • Hello, I wonder if there are any physiotherapists in Texas. I live in McAllen, Texas and the closest

    large city is San Antonio,Texas. I suppose I can also google for this information, but I find your

    advice sounds like the best source for my pelvic pain that began after recurring bladder infections. I am horribly scared of these symptoms which started very gradually after my last UTI. Unfortunately, my husband just had knee replacement, and I'm his caregiver for a couple of months. The recovery is tough. Thank you. At least others like me can relate to this horrible symptoms I'm having.

  • I have suffered from pudendal neuralgia for approximately five years. After being misdiagnosed and having a hysterectomy and then bladder repair, which only made things much worse here I am. I finally went to a specialist and was diagnosed. I have had three nerve blocks which only gave me five days relief each time and cost me almost $2,000.00 after my insurance paid a lot. Now the specialist and radiologist told me "If something hurts, don't do it". My list of don't does includes: wearing underwear, wearing pants, having sex, sitting (yes sitting), etc. The list goes on and after a year of working with these two and basically being told I will have to learn to live with the pain I have been waiting to get into a pain management clinic with no promise they will help as I was told they refer people for nerve blocks, which they know I have already had as they have all my records. I am in so much pain most of the time. My entire life has been affected by this pain and it is very, very depressing. I am sure it was caused by using an exercise bike to loose weight. So much for trying to be healthy. When people tell me to exercise I want to slap their face. I have gotten very little sympathy with this problem. Nobody can see our pain, nobody wants to hear it even if you really want to share that your vagina hurts unbearably. I literally had one friend cut off our friendship after I had done, done, done for her during a small short term health problem. I literally haven't heard from her since and I never asked her for anything. My heart goes out to you and I don't have any great answers but yes the things we do can make the pain worse. With myself I also have arthritis in my foot and if I could be on my feet all day my vagina would not bother me but then my foot would kill me. It's very unpleasant and my heart goes out to you. Hugs, Nannateri (I have ten grandbabies who keep me smiling despite the pain and depression).

  • Hi did you ever get sorted? I am beyond hope now as various treatments have left me feeling worse.

  • Hi Pete and everyone else who has messaged me.

    Sorry I haven't replied, have had lots of stuff going on in my personal life but I am going to do a post about my recovery and hopefully this will answer a lot of questions.

    I've made a great recovery so far and have no regrets about the surgery.

    Please bear with me and I'll post my story soon.

    Take care everybody 😊

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