What medication works?? Need Help dealing with this!

Hi, I have been through the mill with this condition for the past 7 months. My husband is convinced that this has come about due to a urine infection that has left my nerves over sensitive. My discomfort kicks off when I have been on the toilet and I can then notice my vulva being there for the rest of the day - this I know is not the norm if all ok down there! I have seen a gyneo who put me on ami I am now on 75mg a day (is this a normal amount?) I have been to a urinologist who performed a cystoscope and all was perfectly normal. What has worked for ladies out there?? I feel like I'm going insiane with this condition, will it just go in time? I wear cotton knickers, I have showers rather than baths etc. Please help thanks

Hey JS007,

I've had vulvodynia for almost 2 and a half years now. I was initially put on amitriptyline, but in a cream form, which I would apply twice a day. This cured me, however the pain eventually came back and the cream didn't help anymore. I was then put on Lyrica 150 mg tablets, which I took twice a day. They didn't do anything for the pain either. I am now on amitriptyline oral medication, I started on 10mg and have worked my way up to 75mg, which I've been on for about a week now. I've had minor improvements on the meds, but I'm hoping that the 75mg will do the trick! I think 75mg is the max dose for vulvodynia treatment, as dosages of 100mg or higher are usually used to treat depression, not pain disorders. Hope this helps a bit!

Good luck!

My problems started with a UTI (not something I've ever had regularly) and thrush (first time ever) at the same time. I've tried amitriptyline and lyrica (pregabalin) but have found the most relief now that I'm on duloxetine.

Have you tried acupuncture? Or physio/PT?

As SGW says, 75mg is about the highest dose of amitriptyline used for nerve pain, so it's unlikely your doctor would want to increase that dose.

I hope you get some relief soon. People do get better from this. My average daily pain has gone from about a 6/10 down to 1 or 2 with my flare ups now more like a 3 or 4 and less often. It's taken a long time, but I do believe now that I can eventually get better completely, or at least almost completely and enough to do everything I want to be able to do (just normal stuff like a full relationship with my husband, wearing jeans, sitting on hard chairs without a giant ring cushion etc).

Thanks for your responses - I get the weird sensations after going to the toilet almost like I can feel down there all the time?? Do either of you have that sensation? It always starts when I go to the toilet but I have had my bladder and urethra all looked at and normal? do you have to stay on Ami for a long time for it to eventually take effect fully? It's more a sensation than out right pain if that makes sense? Please help me it's horrible thanks

I do get weird sensations as well as pain. When I empty my bladder it empties about 80% then I just keep feeling there's more to empty and the rest is in several trickles. That's a weird sensation and I have to wait a while to be sure I'm finished emptying which is a nuisance.

With amitriptyline (and the similar drugs) it can take 2-3 months for full effect. If it isn't working after that time then it quite possibly won't help and it's time to try something else.

Can it take 2-3 months at the right dosage? What other drugs might they recommend? it has been nearly 8 months now

The only medication that has helped me are valiumsuppositories that you insert rectally. When I am having a flare they help relax my pelvic floor muscles. This would probably only help IF your issues are related to having a tight pelvic floor.

JS - I couldn't tell you for certain. Up to 2-3 months if what I've been told in the past, but we're all different. Other antidepressant-type drugs used for nerve pain are imipramine and nortriptyline (though they work the same way as amitriptyline) and newer SSNRI-type drugs such as duloxetine and venlafaxine. Then there are anti-convulsant-type drugs such as pregabalin (lyrica), gabapentin, and occasionally they prescribe carbamazepine. Some doctors will prescribe the opiate-type drugs such as tramadol, but those aren't as effective for nerve pain and they have addiction potential. I was already on tramadol for other chronic pain before my urthral/vulval/bladder pain started. The tramadol works great for back/neck/hip/shoulder pain, but if I take an extra dose during a flare of my pelvic symptoms it's not very helpful for that.

As ringo says, valium (diazepam) can be helpful but it's a muscle relaxant not a pain killer as such.

Thanks! I am back in to see the specialist in April so can take it from there. It's almost worse when pressure is put on the area when relaxing pelvic floor to go to the toilet? Has anyone else had this and it eventually passes?? Thanks so frustrated!!

Tramadol 100 mg. twice a day keeps me comfortable even pain free for most of the day. My internest gives it to me. I am so thankful for him.