Debilitating bilateral pudendal neuralgia following childbirth -feeling desperate

Hi I am looking for some advice and support about what to do next. I gave birth vaginally to my son in August 2014, it was a quick labour with a very quick pushing phase, I had 3 tears including one 2nd degree which was sutured and they all healed fine. One month later I started having severe neuropathic pain around the urethra this spread to the whole vulva. Over the months since it has spread to the anus and I get painful internal muscle spasm in the vagina and rectum. Overall the pain feels more internal now although I still get vulval and anal pain. I also get pirifirmis spasm which gave me buttock pains and bilateral sciatica, severe at start but now only if I walk. I also get lumbar spine pain if I walk also.

Other symptoms

-initially constant urge to pee, often painful, this has lessened over time but I never really have an idea when I actually need to wee

-urinary incontinence probably due to weak pelvic floor that is bowed(Shown on Mri)

Investigation

-Mri pelvis -damage to the pelvic floor described

-Mri neurography normal (often the case)

-Mri spine ok

-urodynamics ok apart from the frequency

-cystoscopy-some tiny haemorrhages the surgeon said could be interstitial cystitis but other docs disagree this is the cause

So I have tried

-amitriptyline -have been up to 70mg-It has helped a bit with the neuropathic pain

-pregablin -could just about tolerate 75mg and this helped reduce flares following my 2nd nerve block. I also take carbamazepine for epilepsy so I have seen a neurologist and we need to balance side effects and pain control and making sure I don't fit if we change epilepsy meds which is needed as carbamazepine has made me osteoporotic

-physio -seen a women's physio regularly who does pelvic floor trigger point release which can give some temporary improvement but long term I don't think it has helped that much. We cannot strengthen the pelvic floor as there are tense areas due to the pudendal irritation

Also seen a musculoskeletal physio who has used manipulation/acupuncture and exercises -it has helped reduce the sciatic pain but that's it so far.

-nerve blocks -at the ischial spines, X-ray and electrode location by Dr baranowski. 1st block -no change

2nd block -an amazing 25% improvement in pain severity and frequency. 3rd block also given with pulsed radio frequency treatment -since this block my pain has got much worse and 5 days later it's lasting longer than a flare and I am worried the pulsed treatment has worsened things

-clonazepam -took my first one today as pain severe and it helped a bit but mostly just calmed me down as I have been quite low today. Not something I want to take regularly but it gets to a point u will do anything for release.

So add a new baby to this mix and all the emotions I have been through with not being able to look after him like I wanted. I could not lift him for months it was too painful. We have a nanny we can't afford, she's good but I resent having to have her there. Mounting private healthcare fees that my family are kindly helping me pay for. It's unlikely I will be able to get back to work anytime soon at least. I have thought of selling the house but we are not there yet. I love my son so much but I just don't think I am gonna be much of a mum for him, I have already made him suffer by not being there for him. I don't know how my partner does it but he does however he is smoking again taking meds to sleep and just about coping. since the 2nd block I have started to gain some more independence in caring for him but since the 3rd block this has disappeared and and I am back months and angry that I allowed myself to have this treatment that has destabilised things. I am feeling suicidal again. I feel the hope I had of inproving is dwindling.

So I apologise for long post but it's been a hell of 9months. I am looking for support from others going through the same thing. Especially if there are any mothers out there who have been through the same thing. Also if anyone else had the pulsed treatment and had such a bad response to it like me. And what's next? Where do I go from here. Thanks for reading Xxx

20 Replies

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  • Get compounded suppositories with baclofen, ketamine and Valium. They can also add gabapentin. Join the closed Facebook group for pudendal hope

  • I have asked about these sort of suppositories in the UK and everyone looks at me as if I'm mad. Does anyone know if you can get anything like this in the UK that you have heard of.

    Emma x

  • Join the pudendal hope Facebook group and ask. People are there in the UK

  • I have seen Dr B so has my mother she also has PN........I have had no treatments and I am doing well just seeing if time helps......my mother had a nerve block that has gone very wrong she had at the NHNN......

    The Physios with a very good name are Maria Eliot , Lucia Berry , Helen Keeble all London Dr Ruth Lovegrove Jones Southampton.

    I really feel for you with a new baby........I am afraid there are no magical cures......and sometimes to stop searching and trying procedures that very often make things worse is the best policy.

    There is something called restorative exercise by Katy Bowen there is a teacher of this in Bristol he had PN for 14 years three failed surgeries in the states and is now fine.

  • Hi there,

    Your story has a lot of similarities to mine.

    I had the birth from hell 10 years ago now so my journey continues but I have learnt and spent an awful lot.

    I live in Putney, sw london and am now under Helen Keeble a women's health physio in Barnes who is excellent. I have been to Nantes, done the Baranowski route, been to Stephanie prendergast in the states who is a legend and have tried every medication and natural intervention under the sun.

    Have a read of my old posts , I am a lot better now most of the time.

    If you would like to meet up, I would be more than happy.

    My email address is emma@aucutt.co.uk

    By the way my first baby had colic on top of my issues and the first year was horrific. Not really the way you picture things. I used to see mothers run with their babies and I was stumbling into wait rose on morphine!

    Honestly I was exactly the same as you, it will get better, you just have to make very careful choices, not desperate ones and be careful about medical intervention because it can make things worse.

    Hang in there darling.

    Emma xx

  • Thanks all for replying so quickly. I remember reading about compound creams when my initial diagnosis was vulvodynia and was told by prof Reid (she mainly manages vulval pain) that they caused more irritation so to avoid them. They were only available in U.S. So would need to get prescription sent over. But suppositorys sound better. Will look into it and mention to docs and see what response I get.

    66crusader -I am sorry about your mother, I am now more wary of the nerve blocks given my most recent experience. Dr B talks about giving me a 'deeper' nerve block next if this doesn't work, not sure what this means as I usually don't research into stuff until I have to. My physio is Helen forth not sure anyone else has heard of her? She is associated with prof Reid and only does private. Thanks for the other names I will think about whether it's worth trying someone new. Helen feel my pelvic floor is much less tense but still my symptoms are pretty horrible. I guess there is only so much they can do. I am sure my PF will be much worse when I see Helen after this recent block.

    Thanks Emma for your reply -it really resonated with me. Harrowing is the word I choose to describe the last 9months. And I am so low that this is just the start. People come over and go on about your baby but they don't realise how horrific things are for me. I will read through your posts and email you if that's ok. I am based in Brighton but am often up in London for appointments so maybe at some point a meet up would be good. I have felt so alone and to speak to another mum in my situation would be amazing. I am realising that quality of life and being with my baby are the most important things but it's hard when you haven't exhausted all medical options. But I do need better pain control with medication, this neurologist I saw was the first one who actually focussed on my meds. thanks again xx

  • I don't have PN but think I have pelvic congestive syndrome for the last 2-3 years. I have had 4 back ops and 2 sacro iliac joint fusions and now have bilateral hip bursitis and a degenerative pubic bone, low back pain, low abdo pain and thigh pain. the reason I have told you all that is because I have been in constant pain for 26 years. It does get better I promise. My first tip would be to go on fluoxetine (avoid citalopram and mirtazipine) They will be reluctant to give you fluox as it can cause a seritonin crisis with things like tramadol and codeine but I was on all three for years and was fine. Then you need to get help and support by counselling or CBT asap to help cope with the baby. I had PND with my first but it was not talked about then and I sometimes feel guilt towards my son about how I was but the baby won't remember. You have a long journey ahead of you so keep talking on forums or facebook, you are not alone xxx

  • some things I can think of are a caudal epidural or a fentanyl patch.

    for the vulval pain I have taken lidocaine 5% ointment and the burning sensations from it have stopped completely once my body got used to it. this is for the vulva.

    Something that has helped me enormously in the past was magnesium. You central nervous system will calm down a bit if you take magnesium. it really really really works for buzzing or vibrating nerve symptoms if you ever have such a thing.

    Benzos are also ok, especially if you need to sleep well at night.

    amiptriptyline is very good, however the doctors can offer you nortriptyline if you ever feel like its side effects are a bit much for you.

    nerve can also grow back in time and quiet down.

    there is hope out there! last year I could not even wear knickers or walk down the street, and now I can live a normal life just like before... medication can take a while to work, but it is the best option because with chronic pain there are changes in your brain, and this needs to be controlled.

    also what helped me was to "brainwash myself" before going to sleep:

    "there is nothing wrong with me. I'm going to get better. I'm going to heal" say this a 1,000 times every day

  • Thanks sharelle, I think I definitely have reactive depression/postnatal that's my current diagnosis! and have been suicidal at points but since the 2nd block I felt I was getting just enough pain control to cope and do more and I felt the hopelessness lift a little and wasn't having suicidal thoughts except on one severe flare. But the return of the pain has put me right back there. I feel a bit better mentally today and I will stabilise again if overall not as positive as before. Sorry you has pnd, it's horrible. I have been seeing a psychologist she mainly tries eye movement desensitisation for the pain but I am not convinced yet. I have a friend who is a psychologist who doesn't reckon cbt would be the best for me as a lot of how I am feeling is quite rational. It helps however hear of others who survived and how they did it. I don't think they would prescribe fluoxetine on top of my amitriptyline or instead as there are other 2nd line antidepressants for neuropathic pain first but I take your point that a medication for the depression would help.

    Thanks Maryjane -can I ask how often do u use the lidocaine? I used it once months ago and it worked enough to get me to sleep. I never used it again as I thought it's only temporary. The magnesium sounds interesting -will look it up also. I totally agree with the changes in the brain so getting the meds sorted will be my next aim. Dr baranowski is not interested in talking meds so I will have to go elsewhere for that. I also like your brainwashing idea, better than telling yourself over and over u will never get better!! I was trying headspace for mindfulness and relaxation-it is good but not really pain focussed -if anyone knows of any good meditations/mindfulness for pain that would be helpful :-) xx

  • I'm so sorry to read of your nightmare birth and ongoing pain. I can't imagine how you must feel .... It's bad enough coping with my children, and they are not babies any more. You are doing so well in the face of things.... Don't forget that!! Xxx

    I have a book mindfulness for health.... It comes with a cd. It's not a miracle, but it can really help to focus your mind on something other than the pain.

    breathworks-mindfulness.org...

    It's interesting you say dr Baranowski isn't that into the meds, as I was really hoping to get mine sorted out for better pain relief when I see him next month.

    Suzysheep xx

  • Thanks Suzy it's been hell but I try and focus on my little boy as in the lowest of times he can give me joy :-) thanks for the mindfulness advice I will look into it. Dr b just said if things are not working following block just to start pregablin and I started at the dose he said and it completely knocked me out. Had to start lower and slowly build up. My new neuro doc is now managing the complex interactions of all the meds I am on, and giving me better advice. I am a doc myself and it was beyond me. I think as a whole our profession is not great at pain management especially with conditions like this. if I make it back to work I hope it makes me a better doctor xx

  • I am afraid I found Dr B patronising......and his bed side manner has a lot to de desireed......I no a lot of people that have seen him and feel the same.....his secretary private one is a very good sales woman.

  • I'm sorry you are dealing with all this AND a new baby!! I too got all my symptoms about 6 mos after my only son was born. He's now 9. But I'm actually worse now than before. My advice is stay strong, don't give up, you will have some better days, be your own best advocate with your health, is something isn't working then stop it and move on, you need yo be there for you new born, so again stay strong! You can try Valium by the pill it's cheaper than suppository, Botox to pelvic floor muscles helps me a lot, strong pain med like Percocet, hot baths, heating pads. Jon Kabat-Zinn (google him) he has mindfulness focus on pain. He works at Boston med doing this for pain patients. You can download onto smart phone. He has great books too. Another great book is Eckhart Tolle The power of now. Working with the mind really helps pain. Watch OWN Oprah winprey network on Sunday's called super soul Sunday, very inspirational and has guest speakers like the two men above. Take care & God bless.

  • Hi ladydidi thanks for your reply. sorry you had to go through the same thing as me. I do not feel I have really been there for my baby and it's something I will have to live with on top of the pain. But he has had love if not from me from others and I am there for him more now though so I am trying to make up. If u mind me asking do u think your nerve pain was due to childbirth trauma or something that happened postnatally? I am sorry to hear things have only worsened over the 9 years also. It's a horrible condition. Thanks for your advice re meds and mindfulness. Where do u get Botox done, I guess u r U.S. Based? -is the Botox v painful in itself and are there any major risks? I downloaded kabat-zinn app and found he talked so much rather than letting you meditate and also it was too much to take in. I seem to be making a tentative improvement following the nerve blocks so that is good finally getting some relief. Did u try any nerve blocks? thanks for replying xxx

  • Please don't feel guilty for not being the perfect mum to your baby. You have too much to cope with without pilling on more guilt and misery. You love him, he loves you. You have a bond with him and that will never change.

    I used to feel massive guilt that my husband had to do everything for my youngest ..... But when you just physically can't..... You can't. he just accepts mummy can't do much. 4 years down the line I don't let my guilt ruin what I 'can' do with him.

    Try looking on the breathworks web site for mindfulness meditations.

    I'm glad to hear you are now getting some relief from your nerve block... That's very encouraging news! Xxxxx

  • Oh thank you Suzy that really helps. I feel less alone in my pain since speaking to others :-) and I feel like the guilt will pass in time just everything still so raw now. I love the moments I have with him and I focus on that to get me through. will look on the website you mentioned and get back into mindfulness I know it helped me before when I did headspace xx

  • How are you feeling now? I hope you have gotten out of your flare from the block. I've read others have had similar had flare-ups after the PN blocks, which scared me into not trying them for my PN. I have the same type of pain as you, only it didn't originate from giving birth.

    I have tried many different meds for my PN pain. The only pain med that reduced the nerve pain a lot was methadone (tablet form). It is a great medicine with a very undeserved "reputation" since it is also prescribed for opiate addiction. I take a very small dose (half a 10 mg pill) three times per day. 5 years ago when I started taking it, I took 1/4 of a pill once or twice per day. No drugged or euphoric feeling - only a reduction of the nerve pain. Very few side effects listed (i don't have any).

    Xanax also helps by relaxing the muscles and reducing the nerve impulses. I sometimes would take a little bit of xanax (.25 mg pill) with my 5 mg methadone pill and my pain would be very much reduced for 6 to 8 hours. Only thing is xanax makes me want to take a long nap so I rarely take xanax anymore.

    I may be getting botox injections within a couple months, as my PF muscles are tight (and compressing PN).

    A nice, gentle full-body stretching routine always loosens up my muscles and stops pain. I stretch hamstrings (gently), quads, psoas, piriformis, neck, pecs, calves, etc.

    Don't stress yet - there are just way too many treatments and medicines you haven't tried to be defeated.

    Also, it sounds to me like your pelvis may be out of alignment because of sacroiliac joint problems from pregnancy. A lot of women who were pregnant have this pelvic instability. A good pelvic PT should be able to diagnose and treat this. Pelvic misalignment can cause the lumbar issues you mentioned, along with muscle spasms from your muscles working hard to try to stabilize your body.

  • Hi Cardinal thanks for your message. The main flare seemed to settle but I am still getting shorter flares and baseline pain is worse, activity that before was fine is now flaring things. I have emailed my doctor to ask his opinion and way forward. We shall see. I think it was the pulsed radiofrequency that messed it up as other nerve blocks have been fine. I totally understand your cautiousness to having one.

    Interesting to here what you said about methadone. I have not heard of anyone else on this for pn.

    I have tried clonazepam which is similar to Xanax. I think it helps if only just to calm me down when he pain is severe.

    Thanks for your positivity and I realise from posting this and searching on forums (something I have only just started to do) there is much I haven't tried.

    You are spot on with the pelvic instability. My physio gave me a sacral belt which just worsened by piriformis pain so have given it up. She says it has settled itself mostly. we are trying to work on strengthening the pelvic muscles but a being halted by the pn pain being too severe at the moment.

    Thanks Cardinal for your support xx

  • Hi! How are you feeling? I hope you are feeling better than before? Please don't worry about your baby...they are resilient! My son doesn't remember all the many things I did with him from ages 0-4 before I got really bad so your wont either...

    Mine issues I think we're from child birth (c section) as I was a healthy working women before baby. 9 years ago here in the U.S. It doesn't seem pelvic pain, bladder pain were that common so I suffered in pain for over two years before diagnosed then it took another 4 years before I was getting Botox and nerve blocks so that's why I think I'm worse now. Yes, I've tried 3 diff nerve blocks. I've had Botox done 4x one just yesterday. 200units to pelvic floor muscles, I believe it helps, no real risks, but I trust my doc as she's done lots of them.

    My doc also prescribed methadone which I hear is great for chronic pain, I haven't taken yet because of the bad constipation and that causes more problems for me...but if this Botox doesn't help, and soon I'm going to take it so I'm not sitting in the house all summer!!!

    Take care and hugs xx

  • Hi ladydidi sorry for slow reply! Life v busy right now. How did the Botox go-did it help? And have u tried methadone?

    I am doing better than when I last posted. I have increased pregablin quite a bit and I was given a lidocaine infusion to settle the flare. I don't think I am back to how I was pre the pulsed treatment yet but much more tolerable and I am managing to look after the baby again and get out and be more active. Mood therefore a lot better. I try not to focus on the future and worry about money etc (i go on sick pay soon) but I get joy from my son every day.

    I have unfortunately got my sciatica back. It hasn't been as bad as when I first got it however. I have started seeing a new physio Ruth Jones -she is great and really thorough. She thinks the internal trigger point stuff is not what I need as I actually don't have true trigger points (yikes I have had 20+sessions of this!) and when she palated the symphysis pubis this was far more painful. She also palpated pudendal nerve and no pain. She thinks symphysis pubis dysfunction definitely driving the sciatica and back pain and possibly the genital pain. I am not completely convinced on the latter yet but willing to give this a try. I am in a serola belt and have ++exercises to do each day -they are strengthening mostly but they don't seem to aggravate my pain as I thought they would.

    Also I have seen Prof Malone and he thinks I have a chronic uti. I am on antibiotics for this now. Early days and no dramatic improvements but we shall see how this pans out...

    Ok that's it...but I am a lot less desperate than when I last posted. I am aware I could go back to that state as u never know with this condition so I am making the most of the 'good' days now.

    I have one more question-if anyone in UK knows how to get compounded suppositories or creams as mentioned by pepper above please let me know! I have tried a couple of avenues and hit dead ends. Also posted in pudendal hope and no replies :-(

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