Vulvodynia aching and burning pain

[HAPPYDAZE11]

Hi everyone, I am new here and this is my first post. I am wondering if anyone else has the same kind of pain as me?

I was diagnosed with vulvodynia by a vulval specialist after a year of the usual merry go round of numerous doctors, thrush treatments, etc (even told it was lichen sclerosis). I also saw a neurologist who diagnosed pudendal neuralgia.

I was given a pudendal nerve block during pelvic surgery, apparently as a pain reliever, and all the doctors feel this is what has caused the problem. Soon afterwards I started having electric shooting pains up inside my vagina which gradually became an aching, burning all over the area between my legs. Sometimes it is so sore on the outside of my vagina and can be itchy. I cannot sit for long or my coccyx becomes numb but incredibly painful.

I am on pregabalin, amitriptyline at night, and tramadol just to be able to sit down at work. I am just existing like this, not getting better.

I would like to know if my pain sounds familiar to anyone as I've not read of anyone who describes the constant vulval ache. I also have a very weak bladder made worse by all this.

Thank you for any advice you can give me.

[Bubble_by]

I have vulvodynia too. However I suspect that I also have nerve damage in my pudendal nerve as I have issues with my bowels and bladder too. I have never believed that I only had nerve damage in my vagina as it has always been problamatic in other areas.

I recently had a laparoscopy which also showed I have endometriosis (I know, lucky me, right?) which I now understand caused damage in my pelvic floor and pudendal nerve. I'm only really getting answers now after god knows how long of blundering about in the dark.

I guess I don't really have any proper advice, but I just wanted to let you know you are not alone. I couldn't understand what was wrong with me for a really long time and I know what a miserable, lonely place it can be. You are always welcome to pm me if you ever want to talk 💕

[HAPPYDAZE11 in reply to Bubble_by]

Thanks for replying!

Yes, it's awful but good to have people to talk to about what you're going through. It doesn't make great conversation with friends if they don't have the same problem does it!

I often feel that I've been given this label of vulvodynia, pills, and that's it! No other help offered and I just suffer on endlessly.

I hope you get answers too.

[anna1234567]

First of all I’m sorry you are go8ng through this. My symps were caused by a Tarlov cyst and s2/3. After surgery my pain location changed to the posterior branches of the pudendal nerve. I’m getting a block as soon as the hospital starts up the regular treatments again after corona, so I’m waiting for a phone call. I completely understand that you need the meds to sit down for your work, but try to get a standing desk, Bc you keep adding pressure on the pudendal nerve. My surgery helped my bladder issues. Pudendalgy really sucks. There’s not enough knowledge, and even surgery and meds don’t help much. Try to find a good pelvic floor physical therapist. Some people really benefit from that too.

[mollypopple]

Sorry to hear you have so much pain . On a positive note I was diagnosed with pudendal neuralgia/Vulvodynia 4 years ago. I couldn’t see any future but thanks to pain management, a pelvic therapist and Medication I now have my life back. It is possible to overcome this, pain management saved me, if you haven’t already tried it I strongly recommend you give it a go ...stay positive !

[HAPPYDAZE11 in reply to mollypopple]

Thanks. What does the pelvic therapist do? Is it learning exercises or more than that?

[lalab in reply to HAPPYDAZE11]

Pelvic physio therapy (physical therapy) completely changed my life. It took finding a good therapist but I highly recommend it. Because my main issue has been tight pelvic floor muscles (which cause the kind of burning pain you describe as well as a feeling of something pressing on my bladder), my PT uses Internal "trigger point" release (basically stretching the tight pelvic floor muscles). Also myofascial release in abdomen and thighs.

That plus Desipramine changed the course of things for me. I am managing things pretty well on my own now. I still see the PT every 6-8 weeks but things are so much better!

LB

[HAPPYDAZE11 in reply to mollypopple]

Oh and what do you mean by pain management? I am on medication so is this something else?

[mollypopple in reply to HAPPYDAZE11]

Firstly you have to be recommended by your doctor or neurologist. It’s a group of people in pain run by a physiologist, physiotherapist and clinical nurse., once a week for 8 weeks but after that you still keep in touch. Obviously with the current situation it will be a while until they start operating again.

Also I had internal release for tight pelvic floor muscles.

Stay safe

[ClareLou]

have it to, touch wood I seem to have the Vulvodynia under control. Pelvic physio helped me a lot and I was also prescribed a soap substitute which seems to help as shower gels, shampoos etc can make it worse so this protects the area.

The other things that I have found help me are washing underwear in a allergy friendly soap power or detergent with no fragrance I found Ecover Zero worked for me.

I use None bleached toilet roll I use cheeky pander. I also do some exercises that the physio showed me.

I hope your successful in finding some things that help you

[HAPPYDAZE11 in reply to ClareLou]

Ah thanks for the tips. Yes, I already use an emollient as soap, and a hand bidet for after urinating but I will have to try and find a pelvic therapist as that sounds like it's helped you all.

[ClareLou in reply to HAPPYDAZE11]

If your in the UK you can find a pelvic physio on the NHS. I have used both private and NHS and found both equally helpful.

Good luck with finding something to help you

[NotetoSelf]

Hi! I’m so sorry you are in pain. That was part of my initial diagnosis too but I had to apply some kind of special compound creme to the area. It had to be made by a specialty pharmacy since it was a mixed. It did not help me though. I am lost too. I am on second round of Botox to my pelvic floor “pain spots” but I did do pelvic PT, on four separate occasions over last 3 and a half years. The current pelvic PT is the best I have been to... not all PTs are created equal. Some are much better. Check out Intimate Rose dilators and wand. Pure Aloe Vera, lidocaine gel, I put a little directly on the Pelvic Wand With Good Clean Love lube to try to release pain. Mine is mostly internal but some on the one side vulva. Living in pain is like having a dark veil that you cannot remove. You don’t feel like yourself. People that don’t suffer do not understand. I am trying to tell myself I am the only one that can make me better...to keep doing my stretches, keep it up and eventually it will pass. But it’s so hard. I am sending good vibes to you for a recovery. Sometimes it just takes finding the right combo. I’m not there yet but I wanted to reply and say hello!

[HAPPYDAZE11 in reply to NotetoSelf]

Thank you. I appreciate the support.

[babyredbear]

I have the same symptoms. Everything you said I have experienced. I can Not even sit. I lay Constantly and stand up to eat. I am seeing a doctor in Atlanta in June. He is going to try to freeze the nerve so I can start pelvic floor physical Theraphy.

[HAPPYDAZE11 in reply to babyredbear]

I feel for you, that sounds awful and debilitating. Sorry you are in so much pain.

I have had, what I call, a weak bladder for 28yrs. I have never sought treatment for it but just altered my lifestyle to suit, such as , only going where a loo is near which does Seriously limit activity. I feel my pain like a severe ache in my vulval area, it burns and I do wonder if the bladder issue is connected. I think I need pelvic floor therapy too.

Good luck with your appointment.

[Swoooo]

I am a new member of this group and have exactly what you are describing. I am not getting any help and being made to feel like im making it up - I am just wondering if I need to change my doctors practice. Did you struggle to get help initially - I presume you are being prescribed all those medicines as I have nothing. Did you feel like you were not believed? My life is on hold weight-wise as any exercise makes it worse and sitting all day at work is getting harder.

[AuntieH in reply to Swoooo]

Have you tried pelvic floor physical therapy yet? They might be able to help. Find a good one and ask your GP to refer you. Good luck!

[HAPPYDAZE11 in reply to Swoooo]

Are you in the UK? ifso, change gp as I have not once felt not believed but I do think they don't know what to do with me! I've asked if I just have to keep taking such strong painkillers or is there someway to fix it but gp says just keep taking them

[HAPPYDAZE11 in reply to Swoooo]

Yes gp has tried many different pain meds. Just ask. Gabapentin, pregabalin, amitriptyline are the go to's. I also have tramadol as nothing seems to stop it.

[glenbanchor in reply to HAPPYDAZE11]

AZO definately helps urinary pain but turns pee red/orange.

[glenbanchor in reply to glenbanchor]

I drink lemon juice every morning sweetened with honey recommended.

[Jenfer91]

I have something pretty similar, been going on for 18 months now, I recently in July had a prudental nerve block, have no change in pain and now get a shooting pain from the injection site on the left side if I'm on my feet for too long! I take 500mg pregablin and use lidocaine every night! I'm looking into nerve decompression surgery or botox injections.

[HAPPYDAZE11 in reply to Jenfer91]

My pain started AFTER the pudendal nerve block! I can't imagine having one now to stop the pain! This burning/aching in pubic area is not constant but almost daily and my feet burn at the same time so definitely neuralgic.

[Jenfer91 in reply to HAPPYDAZE11]

Oh no 🙁🙁 it's so awful! mine started after a sever allergic reaction, I have no idea what to but my muscles went in to complete lock and I had excruciating waves of pain. I has a week if steroids and then have been left with the burning pain ever since 😭

[HAPPYDAZE11 in reply to Jenfer91]

God, it's just awful to be in constant pain isn't it. Helps to know we're not alone though

[Burninglips]

I am new here.I have this burning of the vulva,it is so bad,I have had two UTI s in a month. Those are gone ,but the intence burning persists on the outside .Any ideas? I see geno this week.

[Elliot43]

Hi ladies, I have had Vulvodynia since 2013 immediately after my last round of chemotherapy. Migraine headaches too!! My oncologist referred me on to the Women’s hospital Pain Clinic. A panel of gynaecologist psychologists physio etc . They were wonderful. Very kind. I recommend to find a gynae pain management clinic. I was prescribed Nor-span patches of opioids. Low dose and Nortriptyline which is similar to amitriptyline. I have had months pain free over the years maintained by Nortriptyline 20-40 mgs . Just lately it’s back again. Murder!!! I know I have to relax and stay calm meditate etc. yoga classes

So I’m on the drug round again!!

I might try to get to see a pelvic pain physical therapist thanks for the reminder.

Greetings

Sheila in Oz