Vulvodynia? Sciatica? Pudendal neuralgia?

Hi, hoping to gain some light on pain that I have been getting as doctors seem a bit stumped / keep giving me the run around.

Around 2 months ago I started getting a random acute burning feeling in my left labia that would get worse at night and worse sitting down. I never got down to the bottom of this issue, saw many doctors however many of them pointed me in the direction of skin irritations/soap/allergies etc which I was quite confident it was not. Anyway this pain was constant, sort of like a sunburn but on my labia, and in one place. I took many tests that all returned negative and the area was visibly normal - bar a bit red. I started doing a few stretches a day but nothing radical, and the pain seemingly went away after a month. I'm not sure why that was to be honest - although not complaining!

Anyway, since then I have started getting sciatic pain. This involves burning in my lower buttocks, down my left leg and in my lower back. Sometimes the pain is a tingling or crawling sensation, and otherwise feels like a sunburn. This has been the past 3 weeks, and during this time, the burning feeling on my labia has also made a bit of a comeback, along with some vulval tingling which again, is mostly on the left side. It is not as intense as the first time, however it is definitely the same burning pain, and in the same place. I'm confident that the pain has something to do with my nerves, however I am really stumped as to what may have caused it and whether these nerve issues are related at all! I am healthy, injury and accident free.

Has anyone had any experiences like this? Any tips or stretches? I have had little luck with physios and doctors, maybe I'm yet to stumble across the right one, as I feel like I have gained most of my knowledge about pudendal neuralgia, sciatica and vulvodynia online. The pain seems relatively constant, and not provoked by standing/lying etc however sitting makes the vulval pain a bit worse...

Any insight would be appreciated. Thanks!

18 Replies

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  • Hi, sorry you have to suffer. I have the same issues. Although I have never been diagnosed properly, a number of physiotherapists and osteopaths have treated it as pudendal neuralgia and sciatic nerve pain combined, due to some sort of pelvic weakness. I gave up on trying to find aware doctor. I don't know where you are but I recommend you to start your journey towards both diagnosis and healing at a good pt. If you are near London go to see Maria Elliot! Best of luck!

  • Hi! It definitely sounds like you could possibly have all 3 issues like myself. I first would search out a PNE doctor at PudendalHope.info. I would call for an appointment as soon as possible. PNE pain can & does get worse as years go by. I would NOT do much as far as PT until you know if you have PNE. The only exercises you should be doing right now are walking, swimming, push ups, & the runners stretch where you place your hands & the ball of one foot against a wall. Have your other foot 1 1/2-2 ft. behind you & push forward with that foot. I also suggest getting a piece of foam the size of your butt (smaller can be uncomfortable). When you get it cut out a large "U" shape. When you need to sit use this at all times!! This will help take some of the pressure off of your nerve. After you've been diagnosed with that you can seek out steroid injections for your SI Joint. (Most normal people only need one or two of these injections. However, I've had 3 injections for sure, if not 4. Mine only last 2 weeks at a time, but as anyone in pain knows you'll take whatever time you can with a little less pain. Anyways, good luck!! I wish you the best!!

  • Wow, sorry you have had to suffer so much with this! Unfortunately I am based in NZ where there are no PN experts and doctors seem to be a little clueless. I will definitely try out that runners stretch and the foam cut out :)

  • Hi Kenlon!

    If you'd like to you can email me for easier contact. I say this because I'll try to help you find a doctor. If I can't find you a doctor than I'll ask my doctor(s) (a neurosurgeon & a radiologist) if they'd be willing to speak with your doctor. That way maybe you can at least get some form of treatment going (likely steroid injections first, a series of 3). If you'd like please feel free to email me. My email is MARYLHARLEY@YAHOO.COM. It may make communication a little easier. I also have more information in regards to Vulvodynia for you. This is actually my 3rd attempt at this message. They keep disappearing on me. Frustrating!! Anyways, please email me if you want to.

    Thanks!

    Mary

  • Hi there

    I read your post and was hoping we could talk? I thinkin experiencing symtons of vulvodynia sciatica and Pn. Which are all related, im fairly new to all of these sensations and unfortunately for me they have all come at once . What do you do to cope?

  • Ask your gyno if you have low estrogen. A topical cream might help.

    Homeopathecally, ask drs for proper dosing to help by using: D3, Omegas, magnesium and there are lots on the market

  • Thanks for your reply! Daily I am taking: B complex 100, Calcium citrate, Magnesium, evening primrose oil, vitamin C, zinc and a basic multivitamin. Homeopathically, I have tried medorrhinum and staphysagria (the former seemed to work somewhat on the vulval pain as it disappeared for 3 weeks!). Will definitely check out estrogen levels!

  • I definitely need your email ( to send you a link. I'm seeing that there is a doctor that appears to be in NZ that may be able to help you. It looks possible anyways! My email is MARYLHARLEY@YAHOO.COM

  • Please read Amy Stein book Healing Pelvic Pain. It sounds like something isn't balanced, the muscles might be tight, or it could be the nerves themselves it's a chicken and an egg thing. Get your alignment checked by an osteopath or a Rolfer. It could be the genitofemoral nerve or pudendal with the labia. If the nerves were irritated due to tight muscles that's why the stretching helped.

  • I have had a very similar experience. I too have pain that is left sided to the labia and clitoris. I also have a leg length discrepancy (left leg is longer) I believe that this has been the culprit of what I'm experience. I get pain in my labia and clitoris tingling and hypersensitivity as well as sciatic nerve symptoms. I swear some days they are related but my gyno thinks I have two different things going on. Since this has started I have been sure to get orthotics to help balance my pelvis and have tried pelvic physio for trigger point. This has helped ALOT I still have clitoral pain as it it very stubborn but a lot of my vaginal pain and labial pain is gone I suggest you find a doctor who knows about pelvic pain issues and also started physio therapy. If you have any questions done hesitate to get my email. I also would suggest buying a foam roller as this changed my life.

    Kaitlyn

  • Im going through the same thing righg now:( i feel like i have all three and im constantly trying to figure out which one to treat first😔 Gyno said vulvadynia but then said she couldnt explain the lower back pain, i have this deep ache when the vulva region is touched or pressed down, and then theres the scitica which is very uncomfortable. Have you had any relief or been diagnosed?

  • Hi Kenlon im sure you've moved on from this with your life but I am really hoping you're well! Did you ever get to the bottom of this or find out the cause? Everything you've said is exactly what I've been going through lately down to a T!

    Really hope to hear off you soon

    Thanks and best wishes

    Kelly

  • Hi Kelly, I am having the same issues, It's been 5 months. Burning vag, and then sunburn feeling in my butt and sometimes back of thighs.

  • Hello everyone...I have the same issues burning pain all over the vagina and on my butt.I saw million of doctors most of them had no clue and two of them said vulvodynia.Its been almost 3 years since it started and it comes and goes.Right now I am suffering the same pain and been using xylocaine gel but makes a small relief.I am reading the posts here as well trying to find tips.I wil apreaciate for any help....Do you recommend seeing a neurologist rather than gyno???

  • Hi Lanloon, I'm sorry you are suffering like me. 3 years. Jesus. I dont know if I could last that long with this. I think mine is caused by HSV which I have had for 25 years. Always well controlled, but when i turned 42 it went crazy and at 46 this. The only thing I have found to help is amitriptyline. I have a neurologist appt on April 11th, but I'm sure they will be stumped. This is so sad to have to live like this.

  • Thank Lisa I wish all the best for you and all of us dealing with something so difficult!My condition appear out of a sudden not knowing the case behind and all tests were negative.I thing am gonna visit a neurologist as well!

  • I have found in these posts, women who are suffering like me! My recent episode of pain started 4 months ago with lower back pain and pain in my buttock and pelvis. My original pain in these areas started 3 years ago with only pelvic spasms. They were treated by a specialized physiotherapist. It resolved my problem with occasional visits to the PT since then. However now I have a burning buttock every day and burning in my vagina. I am totally debilitated by the pain.

    A recent MRI showed some tears in my lower lumbar L4 L5 S1 and so I received a cortisone injection in that area. It has taken away some of the lower back pain but the other pains are now worse!! The only time I have no pain is through the night once the meds help me sleep.

    Help! Does anyone have any suggestions or solutions to recommend for this pain??? Any type of nerve pain meds? Physio? Thanks everyone

  • Hi. Was wondering if you found out what was causing your problem

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