Vulvodynia - Sleeping disruption

[Knit5]

Hi, This is my first attempt posting in this forum, hopefully I'm posting in the correct place.

I have been diagnosed with vulvodynia and I've been taking Amitriptyline 10mg at 10pm in the evening. I can cope during the day as long as I don't stay on my feet for too long a period of time as I can feel it more. My main problem is at night when I wake in the early hours and the pain is worse. I struggle to get to sleep again. Can anyone relate to this problem and if so how do you manage the problem?

Thanks

Violet

[kalecolbe12]

Go on the face book vulvadynia site...really great and I take gabapentin 200 mg 2 times aday also a muscle relaxer. Cyclob enzaprin 5mg

[Mrshappyme]

could i ask what symtoms you have with vulvodynia and what is it ? as im trying to find out what is causing my symtoms and what test for it to find out if thats what i have?

[Carlettejaque]

Hi. I suffer with it. I had it for 2 years then found a wonderful lady acupunctourist who cured it in 5 sessions. She did a combination of eastern and western treatment. I did have to have a top up session every 6 months but it was great. However, during the lockdown I couldn't see her and I found my own treatment. If you rinse the wee off yourself every single time you use the loo it really helps. You mustn't miss doing it. I keep a jug of water next to the toilet and if i have to go out i take a bottle of water with me. Its better to use warm water but cold will do. Lean well back on the toilet seat and pour the water over your bits and Dan dry with a tissue not toilet paper. I also use a little bit of Dermovate ointment on the area. It's a steroid ointment. Ask your GP for it. It's really good. Rinse yourself well in the shower just before bed but dont rub or touch yourself too much. Dont use soaps or shower gels or any oils or over the counter treatments as they can make it worse. If you live in the south of england i can give you the name and contact details of the acupuncturist if you are interested.

[Ailiesonkerr in reply to Carlettejaque]

Hi I also suffer with this like you do and I am interested in getting accupuncture for this. I like in Scotland and there are quite a few around here I just wondered what area she would work on for this or what I should say? Thank you.

[Carlettejaque in reply to Ailiesonkerr]

The lady I went to was brilliant. She put a line of needles from my navel down to my pubic bone and needles in my calves and ankles. It took about 45 minutes in all. The charge for it was £38 per session. I live in west sussex on the coast. Try the rinsing and the Dermovate in the me an time.

[Ailiesonkerr in reply to Carlettejaque]

Thank you so much I will, I also got prescribed a cream and think it was called Trimovate which has a steroid in it… it helped a little but given they do not know if I suffer from vulvodynia or pudendal nerve damage it only helped a little x

[Mrshappyme in reply to Ailiesonkerr]

whats the systoms of pudenal nerve ?

[Ailiesonkerr in reply to Mrshappyme]

The symptoms are severe burning pain and sitting down and compression made it worse. Even clothes touching the area is painful. I was on Amitryptilline for like 3 years as I sit down at work all day. I changed to a kneeling chair and this has helped immensely.

[Ailiesonkerr in reply to Mrshappyme]

*severe burning pain at the vagina and also went under my left buttock and was like someone had poured acid over my skin. It is a nerve pain.

[Mrshappyme in reply to Carlettejaque]

i live in northwest if anyone one as had a privert op at spire hospital for bladder prolaspe my dr booked me in for a op on nhss last febaury . i wounder if anyone as had a privert op at the sire hospital in oadby leicester and how much it would cost round a bout

[NHSwarrior in reply to Carlettejaque]

I have always suffered from dysfunctional bits & ‘ladies problems’, from being a teenager, as has my mother. As a teenager I had relentless cystitis and now at 48 I have vulvodynia & pain following insertion of vaginal Mesh for prolapse. I take Nortryptalline 20mg at night, which helps -as did Pregabalin but I gained weight which didn’t help the pelvic floor. The most useful self help advice came from a wonderful series of books by AngelaKilmartin. I swear by her regime. I manage a large team of nurses and many suffer from ladies problems. I can’t tell you how many copies of this book I’ve bought from EBay and handed out. She describes the ‘rinsing’ as above and other interventions which help keep this awful debilitating pain at bay for me most of the time. Buy a copy and take a bit of time out to read it. Xx

[Carlettejaque in reply to NHSwarrior]

I keep a jug of water next to the loo and I rinse as soon as I've finished passing urine. It has kept it at bay for a year. I also use Dermovate ointment which is brilliant. I can't use anything else. I don't use any feminine deodorants, I only wear white cotton panties which i wash in Surcare non bio washing tabs. Then I wash them again without tabs just to make sure they are well rinsed. If I go out, which isnt often because I also suffer from IBSd and arthritis, I take a small bottle of water with me so I can rinse if I have to use a public loo.

The rinsing combined with the ointment really works but if you already have it bad it can take a couple of weeks for the soreness to settle down. I did initially have acupuncture but that was over 2 years ago. That works too but DONT go to a Chinese medicine practitioner.

[NHSwarrior in reply to Carlettejaque]

My pain clinic doc and gynaecologist prescribed pregabalin gel for application. It’s not licensed so you might have to close yourself up and put a good case forward to you hospital team (GP won’t prescribe it).

[NHSwarrior in reply to NHSwarrior]

Sorry - should be ‘clue’ yourself up! ‘Closing up’ goes without saying!

[teachersmate in reply to Carlettejaque]

Hi, I'd love the name of your acupuncturist. I'm in hampshire but not that far from west Sussex. I suffer from pudendal neuralgia and I think vulvodynia too. Medication isnt working for me and I'd much prefer to go down the more natural root. Thanks

[Carlettejaque in reply to teachersmate]

Her name is Valerie Young and she has her practice in Bognor Regis. She is brilliant! She very sympathetic and very professional. I highly recommend her. You can find her contact details on google. If you want to go to her and need more info, let me know.

[teachersmate in reply to Carlettejaque]

Thanks, I'll definitely Google her. My pt also recommended a male acupuncturist but I'd rather see someone who has the same anatomy as me! I find they have a better understanding of how various symptoms affect us.

[Carlettejaque in reply to teachersmate]

Valerie trained for years and combines eastern and western acupuncture. She charges £38 per hour session. She is one in a million!

[Skye22]

Hi, I have levator-ani syndrome which causes debilitating pain in and around the vaginal area.What works for me is vaginal trigger point therapy with my specialist physio and Botox injections into levator muscles.

I also take amitriptyline and it took me a while to get the dosage that works for me . At night, time is key so you are not feeling drowsy in the morning. Again the morning dose is lower that allows me to function throughout the day without feeling drowsy. Dosage for me is 25mg in the morning and 75mg at night around 8pm.

Hope this helps and you find what treatments are good for you.

[Cloudberry7]

Hi-I have taken 10mg of Amytriptiline at night for pelvic nerve pain for about 5 months. Some nights I experience a similar feeling but if I take ibuprofen as well it helps.You could try that if your ok with ibuprofen or try asking GP to increase amytriptiline?

[Mrshappyme in reply to Cloudberry7]

what the side effects of the amtriptiline

[Cloudberry7]

I was really apprehensive about taking amytriptiline! Side effects for me are mainly feeling extremely tired the next day and brain fog! It does make me retain urine as well but honestly that’s a bonus for me!!I also gained about 5-6lbs in weight quickly. But then that settled.

One post advised getting the time right to take it at night. That definitely helps, and sticking with it for 6-8weeks before giving up as a lot of the side effects pass.

I honestly could not have managed to stay at work and look after the kids without it. For me, even with the side effects, it’s worth taking.