Vulvodynia

[Panthereyes]

I am really struggling at the moment. I can hardly walk the pain is all I think about. I have to DC and I feel so sad that I can not be the mum I want to be to them. My DH is always having to pick up the slack. I have no hope I will get better, I have been like this for a year and a half seen 5 gynaecologists but no answers to how I can improve. I am taking 50mg of amytripline and it is not even touching the sides of the pain.

I really can't believe this is my life years stretching out in front of me of searing pain and this half life. I have a family holiday in a weeks time booked a year ago when I optimistically hoped I would be better by now. I don't expect any responses buyt just need a place to offload how incredibly shit this condition is or any chronic pain condition. A year ago friends and family used to ask how I was, now no one except my husband and children ask. It is such a lonely place to be and I can't believe this is my life.

That sounds like a very hard condition to deal with. Has your doctor got you on any treatment for it?

I do understand. We are having our first holiday in years shortly and I am also worrying about how to handle the chronic pain and the accessibility issues the wheelchair brings.

Wish there was an easy answer

That is awful I can't imagine how this affects you every day 😔. So, are they saying there is absolutely no treatment at all? Are there other pain relief options? Things like gabapentin or pregablin, they seem to be good for nerve pain, especially as the amitriptyline is not working.
How can the Drs just leave you like this?
Do you work?
I can't get my head around this at all for you.

My heart goes out to you.

I have this and it can be a truly awful and painful condition. My pain is localised to the vestibule (so Vestibulodynia)…..is yours also localised to here?

Is there any chance your GP can refer you to a vulva clinic (to check for skin conditions as sometimes those can contribute to V)? I attended one and all skin conditions were excluded as a cause of my V.

I went onto 50mg Amitriptyline and it had a very slight effect (maybe about 5% reduction which was incredibly marginal, but crucial in ascertaining my potential cause as Neuroproliferative Vestibulodynia, I then received a prescription to up it to 75mg which again had a marginal impact again). Like you, I would have said that it didn’t make a difference as such tho as it was only marginal effect. My pain is localised to the vestibule tho and not the rest of the vulva so appreciate we could have different illnesses completely.

Please keep talking on here ! I will circle back to see if you get back to me.

Yes it is only in the vestibule I feel pain. I feel that the gynaecologists just diagnose vulvodynia rather looking at what is causing the pain.

Hi @Panthereyes . After the Amitriptyline was deemed not so effective for me, I went onto Pregablin.

The Pregablin didn’t fully resolve it, but it was a more effective than Amitriptyline. Would this be an option for you? Is this something you could ask next for?

@CarrotCakesandReading how are you doing now? I an wondering whether to seek someone out to try and get a vestibulectomy.

@Panthereyes the amitriptyline and pregablin only helped me slightly unfortunately. I also went onto some compounded cream (gabapentin) which helped but only marginally.

When I asked about a Vestibulectomy I couldn’t find anyone on the NHS, have you been able to?

Not sure if your nerve pain is the whole vestibule or part of? Mines the entire thing.

No not on the NHS I have joined a vestibulectomy group on Facebook to research it more, but it would be quite a big step. I am currently on testosterone and oestrogen cream to rule out any hormonal issues but it doesn't seem to be helping at the moment.

Hi @Panthereyes
I had this for a number of years which was kicked off by childbirth and shit aftercare which I suspect caused nerve damage.
Gabapentin made the most difference to mine, but it still wasn’t brilliant.
Mine resolved slowly over the years and is now gone. My Gynae told me even if it gets slightly better it will usually carry on that way. This is going to sound weird but the first sign I had it was getting better was a weird twitching sensation in the painful areas.

How are you now op? I started with that was told was thrush month ago...and it went for a week and back again now drs saying this is what i have but i dont think it is....its not pain as sucj its internal itch, irritation burning amd a lot of discharge no smell ect....the irritation moves about but mostly very internal

@ellwood972 I will cautiously say I have seen some improvement. I got a private swab done which showed I had aerobic vaginistis I could fund a doctor to take this seriously so I self treated with fluomizin and vaginally probitoics. This stopped me from being bedbound but I was still in pain. I persevered with the testoerone and oestrogen cream I had been prescribed as I know it can take a long time to work. After about 3 months on it I have found things are gradually improving. I can now walk my kids the 20 round walk to school and back. I have remained on the amitriptyline throughout....not sure if this helps or not. I would say I am now 60% improved and hoping that continuing on the cream will bring further improvements. Still live in fear of it all coming back though!

I was told by my GP it was yeast in the first instance and treated for yeast but this was never my issue. If I was you I would get a private swab done as they test for much more than the NHS swabs. If you are in the UK the ones available to you as far asbI am aware are digital microbiology, Juno and focus labs.

Hey I have vulvodynia since a child and never had this issues apart for a recent bowel injury via c section. Are you sure it's deffo vulvodynia? Xx

@Firsttimmummy yes it is vulvadynia. Vulvadynia just means painful vulva so it is a catch all for any long term vulva pain. It is not a particularly helpful diagnosis though and you still have to figure what it causing the pain.

Hi @Panthereyes thats brilliant news that you’ve seen some results already. It’s a few months on since your post so I hope that you’re still seeing improvements now. I’ve had some injections into the area and found it was more effective for me than the oral and cream medications. The area for me is less red and more tolerant of touch/ pressure.

@Panthereyes - how are you doing now?

I think I have the exact same thing as you. I had UTIs and also thought I had thrush but after testing with Digital Microbiology labs found I had aerobic vaginitis. I think I'm getting on top of this now but the pain remains, particularly after exercise. I spent last night in pain coming from my clitoris region weirdly which was horrible.

Did you ever get over this, and if so, what helped?

XXXX

London pain clinic dr Bruce Jenner

Will save you

Thanks @notniceisit - is there any chance you mean Chris Jenner as I can't find a Bruce?

www.vulvarpainclinic.com/about-us/medical-team/dr-chris-jenner/

I'm so sorry I did mean Chris Jenner

I use dr Singh and have done for 7 years
He has saved my life and it is not an understatement

However Chris is the expert in vulva pain and he willl no doubt have new ideas on treatment
I've sent several women I know there and he has helped them enormously.

I don't know what the pain feels like but I have chronic pain in my back and chest and I' want to say I see you and there are ways

I would also look into medical cannabis xxx

@Puffins84 I know this is an old thread but can I ask what kind of injections did you have? I've been having trouble for a long time and amitriptyline and gabapentin have not helped that much. Thanks in advance. Xxxx

Vulva dilator, available on prescription if yoy can persuade a doctor to prescribe, plus oestrogen cream and HRT

@ShetlandTony apologies for the delay in getting back to you. I’ve just been diagnosed with endometriosis now too :(. It’s uncertain whether this has contributed to my symptoms too. The injections I had were Steroid Injections and Botox Injections, on me they had a slight effect but nothing major. I’m not sure if perhaps they are more effective on other people or not. Take care xxx

Interested in your comment about the sensation you felt when you were on the mend. Was it a bit like a nerve twitching in your eye but twitching inside your vagina? Almost like a mini vibration?

@TipsyDaisy
Yes it was like an involuntary twitch type feeling.
Once I had that it started getting gradually less painful. My guess is it was the nerves recovering.