Anyone else here with vulvodynia?

[Craft_GalaxyDefender]

I was wondering if anyone here had vulvodynia? I've been suffering with it for over 10 years and am yet to find any relief. These past few months seem to have got worse with more frequent flare ups

[Ellie-Louise]

I have never heard of it either, it certainly doesn’t sound very nice. I hope you can find some help somewhere.

Vulvodynia (vulval pain)OverviewSymptomsTreatments

Vulvodynia is long-lasting pain in the vulva, the area around the opening of the vagina.

The main symptom of vulvodynia is pain in and around the vulva. The pain may be there all the time or it may come and go.

Treatments for vulvodynia include painkilling gels you can get from a pharmacy, stronger prescription painkillers, physiotherapy and talking therapy.

A cause for vulvodynia cannot always be found. Sometimes it’s caused by nerve damage from surgery or giving birth.

[hslawton]

Have you tried Amitriptyline? I also have Lichen Sclerosus and have nerve damage from this which has caused Vulvodynia. It`s an antidepressant, but for nerve pain is used in much lower doses. This is the only thing which has worked for me.

Maybe you could ask your GP if you could give it a try. Start at 10mg and work up until you find the dose that works for you - I`m on 30mg a day.

I do hope you can find something to help as it is a debilitating condition, but don`t give up, there will be a treatment that works for you.

[Craft_GalaxyDefender in reply to hslawton]

I was in Amitriptyline but also have a neurological disorder and have been told that medication may have been causing more nerve damage. I ended up on 75mg until my FND diagnosis.

Thank you.

[hslawton in reply to Craft_GalaxyDefender]

I`m sorry to hear about your FND diagnosis. Have you seen a dermatologist? I see a dermatologist who has a special interest in vulval conditons and that has been very helpful. You could try Lidocaine ointment - this is just a local anaesthetic, but can be very useful if you have a flare up.

If I can be of any help to you, don`t hesitate to get in touch x

[Craft_GalaxyDefender in reply to hslawton]

No, I've never been referred to a dermatologist but maybe that could be helpful! I've been to and been discharged from woman's health and the pain clinic. They've tried medications, steroid and Botox injections and nerve blocks but nothing seems to have helped. I have endometriosis which they think might add to it. I'm currently waiting to be seen in the vulvar clinic at my local hospital. I use lidocaine frequently as that's the only source of temporary relief I currently have. So glad for that atleast!

Thank you, I appreciate that. Out of my conditions I certify find this one the most lonely because it's difficult to talk about.

[hslawton in reply to Craft_GalaxyDefender]

It`s good that you`re going to be seen by a specialist vulval clinic - that should be helpful! I know exactly what you mean by it being the condition you find most difficult - I found it very isolating when I was diagnosed (this was 20 years ago, so I couldn`t do any research online for myself). It isn`t something that you can talk about - if it was a pain in your arm or leg it would be easier to discuss.

If you ever want someone to talk to, who understands what you`re going through, please feel free to chat to me.

Good luck with the vulval clinic x

[Craft_GalaxyDefender in reply to hslawton]

Absolutely. Because it's an issue that can be embarrassing it's alot harder to reach out to people who understand.

Thank you, that's very kind of you x

🙂

[foundinphoenix]

Hi. I developed vulvodynia essentially overnight three years ago. I have had just about every intervention possible from pudendal nerve steroid injections, pelvic floor PT, vestibulectomy, Amniofix (done under anesthesia and is a human amniotic membrane allograft) to no avail. I have to use narcotics in order to function at 30% of my regular self. I am unable to take SSRI's.

Feel free to reach out with any questions. I am very sorry you are suffering also.