I don't know if I have vulvudynia or PN or PNE? pls Help

I gave birth 11 months ago to my first baby and my birth was with episiotomy and forceps, in the first few weeks I suffered with episiotomy but then I started notice few things that I didn't have before, I start feeling incomfortable when I sit down even 4 months later I started to feel discomfort when I sit down and when I bend down to pick up something, I didn't bother too much, but since nearly 3 months I notice that always when I wake up in the morning and I sit down for short time even for 5 minutes then I start feeling burning sensation in the entrance of the vagina and in urethera also I feel like stabing pain in the upper right minora labia near the clitoris while I am walking or bending over also I feel something pulling me from inside my vagina when I bend over and like something tight inside me too.

i have seen many doctors which they run many test and swabs and all the results came back negative, I have no infection,nothing wrong.

and since 2 months ago the situation become more severe so now I can't sit down at all because if I sit down even for 5 minutes the burning sensation will start in the entrance of my vagina and urethera and this burning sensation will last all the day, I tried all the cream and all the medication like Amitriptyline but didn't work for me.

one doctor thinks I have Vulvudynia, and other doctor thinks I have PNE.

and my symptoms are burning sensation in the opening of the vagina and in the urethera when I sit down also now I can't tolerate sitting down also stabing pain in the upper right minora labia near the clitoris also I can't bend over also now in the morning when I use toilet and I rince with water so the burning sensation starts also now I can't wear knickers, I can't wera djeans, I can't wear trouses.

pls Can you help me to tell me if this is Vulvudynia or PNE?

pls can you tell me your experience about Vulvodynia and PNE?

thank you

33 Replies

  • This sounds more like a pudendal problem to me and episiotomy can be a trigger. Were the stitches painful at the time and did they cause a problem sitting ?

    Has anyone suggested trying Gabapentin/Pregabalin and/or physio ?

  • Thank you PPSN_judyB for your answer.

    today I saw chiropractor and she said that my pelvis it's not in the right position,she said this it can happen in the processe of giving birth.

    do you think this can give me pudendal nerve entrappment ot pudendal neuralgia?

  • Yes it was painful to sit down with the stitches but the stitches are healed and now when I touche the area of episiotomy it doesn't hurt at all.

    I tried amititrypline and tegretol carbamazepam but nothing worked.

    I did some exercise plevic floor to tight the muscles but it was so painful and the burning didnt stop in the entrance of my vagina and the urethera,the burning keept me awake all the night crying.

    Does anyone have idea about what i have?

  • it's pudendal neuralgia, vulvodynia does not start after giving birth.

    you need to see a pain consultant and the amitriptyline only starts to work after 2/3 months...in my case it took 3 1/2 months for it to work....

    also you need to take lyrica

  • thank you Maryjane89 for your reply.

    pls can you tell me what were your symptomes? also does pudendal neuralgia needs surgery?

    thank you

  • Sounds like vulvodynia to me cause I have that. It only means your crotch hurts so the diagnosis isnt gonna help much with pain relief. Everyone with this responds differently to the meds and therapies available.find yourself a pelvic pain specialist or a urogynocologist. Drink nothing but water. I sit on a pillow if I have to sit. With the right meds doctors and personal care lifestyle changes it became manageable for me . good luck. Also read vulvodynia survival guide.

  • I take nortriptyline for the pain it started to help with me within a week. Lyrica and gabapentin did not help me at all and tapering off them made me feel insane. It took a lot of experimenting to find the right combo to get through it. You can get vulvodynia from any pain or trauma to the area. Many women have gotten it from childbirth especially episiotomy as you can research more by visiting the national vulvodynia ass. Website or just by doing a Google search of causes and treatments.

  • thank u juliansmom for your reply.

    pls can you tell me all your symptoms of vulvudynia? pls

    thank u

  • It started out with my bladder feeling swollen and heavy and my urethra burned passing urine burned but no infections or inflammation at all.then the pain changed to constant severe burning in my vagina like acid was poured on it I couldn't touch it and exams that used to feel normal made me scream and cry. It also spread to the outer parts of the area like I got kicked there a million times then I got the sensation like a pole was shoved up my but sorry for the language. It hurt to pass stool enough to make me pass out. I couldn't sit,wear pants, have intercourse, work, carry anything, clean, the pain even spread to my abdomen, my period became excruciating. The pain was stabbing, burning, shooting, throbbing,every minute was hell.it made childbirth look like a picnic.I also developed sciatica as the pudenal nerve runs with the sciatic nerve so my leg hurts most of the time and I limp. But nothing visible wrong.I went to tons of specialists.it has gotten tolerable over time. I thought I would die at a time.

  • Thank u juliansmom for ur message,so what did the specialist said about your pain? Vulvudynia or PN?

    Is the pain now less than before?

  • The gyn and urologist said generalized and provoked vulvodynia but the physical therapist said also likely pn. I think these are diagnosis of exclusion because you can't see nerve pain or damage on a test, but I'm in the USA so maybe other countries have more advanced tests.I think the two often coexist anyway. Many women with this also have fibromyalgia, tmj.

  • Everything you describe here I had with pudendal entrapment. All this has mostly gone now with the pudendal nerve decompression surgery in Bristol .

  • I'm in america and not even a mention by my urologist or gyn of pn. I had a coccyx block done which sends lidocaine and marcaine into the pelvic nerves and this provided no relief it made the pain worse. I never heard of bristol before I joined this group. I'm in new York.it seems this place you mentioned is top notch for helping people with pne..

  • You have pudendal nerve entrapment I had it and omg I couldn't do anything stand sit lay down I went to a spine dr because I diagnosed myself and sure enough I was right he did 2 nerve blocks very simple no pain and I felt so much relief after the first I was in heaven so he said let's do one more and now I don't have that stabbing burning constant pain :) start with a neorilogist he does the test for nerve damage and go from there I'm pain free as far as the nerve got a lot more pain in different places but I read yours and had the same thing and most drs never even heard if it google it and I promise you it will say everyhrimg you have print it an take it to dr that's what I did good luck I know the pain

  • Jasmine,

    Please don't despair, you will improve but it may take time. Are you in the UK, if so what part ?

  • This is desperately sad. I am in the u.k. Can you afford to go and see a PN aware consultant, if you can't interest free credit card, family there is always a way.

    You either need to go to London and see Dr Baronowski, £400 for an hour, very thorough bed side manners a bit iffy, but that doesn't matter. He knows his stuff.

    Or there is the Bristol team Mr Dixon I think again you can go privately.

    You would get a private appointment with either of these guys quickly, I self referred to Dr Baronowski.

    You will need physio also, they need to be PN aware, I am seeing Maria Elliot in London. The cycle of pain needs breaking with the meds, also you will obviously be desperately depressed this will not be helping the cycle of pain.

    You somehow need to be pain free enough to be able to have your baby with you, could mum live with you for a while?

    Also in London there is a Professor Wendy Reid who is an expert on the vulva, plus gynae again you can self refer to her also, by going privately you will be seen quickly , you can transfer onto there NHS waiting list later, but you need someone to try and diagnose and get appropriate medication started.

  • thank u 66 Crusader for ur message.

    yes, it's very sad situation, I miss my son a lot, my mother lives in diffrent country, I'm here alone only with my husband and few of his family but my in laws they can't look after my baby that's why I left my baby with my mother abroad.

    I am here in uk alone just with my husband and my friends turn me off because of my illness, so I have no one to speak with about my pain, I don't want to make the pressure on my husband,he is going through a lot with me.

    pls can you tell me about your referrel to Dr Baronowski,did he do the diagnostic straight away?

    do u have PN? do u need surgery? and what is your symptomes before you got reffered to Dr Baronowski?

  • Hi. If I was you, as you are French I would go and see Professor Robert in Nantes, from my understanding he is the expert, he will do a nerve block to confirm yes or no.

    You do not have to agree to surgery but you will probably get a better diagnosis, however Dr B knows his stuff to. There is no miracle cure for this, you need a diagnosis, then drugs with physio and surgery should be your very last option.

    As recovery if it is PN can take a very long time, and it is not a guaranteed cure.

    My symptons are burning on the left hand side, into my back passage, clitoris, labia and vulva pain, but I am starting to get better days, I take 15mg amitriptyline as I can't take anymore make me two drowsy, I do exercises, I have internal physio every two weeks and external physio every week.

    It is very hard as we all want a cure NOW, but nerve pain is still a very unknown entity even in this modern age, and the brain even more so, so it is a bad combination.

    You need to somehow be able to get up and go for walks, as lying will not be helping the blood supply to your pelvic floor. Have you tried icing the area? Have you been for any CBT as this problem is equally about the mind as much as a the pain, are you on any pain pills?

  • 66 crusader

    I'm not french but I speak french language, I called the clinic in nantes and I had conversation they told me first I need to do nerve block for diagnos as now they do the surgery and now Pr Robert he moved to clinic to work , he doesn't work in CHU NANTES anymore and they suggest me to see Dr Greensled in Bristol, I don't know what he will do in the consultation.

    pls can you tell me did you have nerve block? was it painful?

    I took amitriptyline 35 mg and didn't work for me.

    pls did anyone has consultation with Dr Greensled in bristol and did he do nerve block?

  • Just to clarify this : Professor Robert is still in Nantes but he is at a different hospital. Where he is based now is the same hospital as where the pain management doctors who do the nerve blocks are based. Patients from elsewhere can still have a consultation at the CHU with the main doctor who does the assessments and a nerve block with the pain doctor. Only those patients who don't respond to any therapy see Pr Robert regarding surgery. There are two pudendal nerve blocks in different locations. Dr Greenslade can do an ultrasound guided ischial spine pudendal block. It is advised that Alcock's canal pudendal blocks are carried out CT guided. If the latter was required I would go to France. Sometimes it is necessary to have both types of nerve blocks to get a clearer idea of if and where the nerve is affected. Hope this helps.

  • Professor Robert moved to diffrent clinic in Nantes and it's true you go to see him for surgery and his team they do the nerve block.

    when I called CHU Nantes they told me that he doesn't work anymore in CHU nantes but there is a team so I didn't speak with the team..

    I wonder if I need surgery is the best to do it here in uk with Dr Greenslade and Dr Wong or go to France to do it by Pr Robert?

    did anyone did the surgery in bristol by Dr wong and Dr Greenslade?

  • If you need help with this you can e-mail me at info@pelvicpain.org.uk

  • That is very good advice. Walking a lot got me closer to handling my pain I do believe it increased blood flow to the area and improved my mood as well. It may seem hard to walk in such pain but benefitial in the long run and the pain relief is long lasting.

  • No I have not had a nerve block, there is no definite yes or no for PN, but a nerve block can help as part of the diagnosis. From what I have been reading I think Dr. Greensdale ? Is possibly the better one to see as he has met with professor Robert.

    I have only had one diagnosis of PN that was Dr B, and the uro/gynae who works along side him doesn't think I have PN, so it just shows the difference in opinion. But to be honest whatever the diagnosis nerve pain is nerve pain, and it's awful.

    There are lots of other drug combinations a lot of people are on a combination I am not as I just can't tolerate them. I use a TENs machine which is a good diversion tactic, and I pace myself, do my exercises when I get up, then I go for an hours walk, I then rest potter doing jobs afternoon walk, bath, ice, bed. Also you need to practice "good" breathing to try and calm everything down, it does help, lie down in a comfortable room close your eyes, breath into your stomach and take yourself to place where you feel happy and relaxed, and just let your mind wonder, takes a while to get the hang of.

    I work from home so that makes it easier for me, the nerve drugs can take up to three months to start working, and they do at least make you go to sleep, and with me anyway they are slightly lifting my mood which is very important.

    Can you get the train to London to see a physio, that's what I have to do. There are no quick fixes, and time is a great healer.

  • I had a nerve block done into the base of my spine and it was more painful than words can express. It took me a month to recover from that episode. It made the pain worse although it was done correctly with fluoroscopy guide.

  • Have only just read your posts as was only responding to PM last few days. You've had to make a heartbreaker decision but you need to get help and get some answers and I'm sure your son will be home before long. Surgery really is the last resort and its very tough on the body in terms of recovery. There's an excellent PN physio Ruth Jones that is based in Southampton, also I use a TENS machine every day and copious amounts of ice to numb the area. Sending you best wishes

  • Hey, I have the same symptoms as you and first got diagnosed with vulvadynia by my gyneo but then diagnosed with pn by a physio who thinks there is a connection with my back and the pain.

  • This sounds like a lot of symptoms I have had for pudendal nerve .I am taking tapentadul 250 mg morn and 200mg evening I have tried numerous meds with my pain management team and although it dosnt take all the pain it helps me a lot.

  • The symptoms you have I have had with pudendul nerve pain management have tried me on numerous meds but I am now on tapentadul 250mg morn 200mg evening although it dosnt take all the pain away it helps a lot

  • I had a pelvic organ prolapse surgery five years ago and I have been having a similar pain ever since - I had no idea what it was until a neurologist suggested I try Gabapentin and if it helped it would suggest a damaged pudendal nerve. The Gabapentin did help so i am satisfied with that answer. Unfortunately, I wasted time with the doctor who did the POP surgery until I realized he didn't know anything about how to treat pudendal nerve pain. I have found another doctor who has been successful with pudendal nerve blocks and I had one yesterday. We'll see if that helps. I hope this could help you with getting a proper disgnosis.

  • Hi Jasmine, bit of a late response but how are you doing now? My first thought was that your episiotomy is too tight any may need to be redone due to the tightness. I know of a couple of people who have had the same issues. This may have been a contribution to your nerve issues?

  • Jasmin just wondering if your better than this post. My issue thankfully did start till my son was 3. But he 5 and I am still struggling like you were. Any suggestions. Hope your feeling better and out of bed. I am in and out every couple days. My son is school age and I want to.be do involved. I was a avid exercise outdoor activities. Everything stopped. I ran marathons. Seems so mind numbing to be brought to every doctor. Nothing. Look me up sweetheart.

  • I have the same issues and can not tell if mine pne or pn. It is driving me nuts

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