Vulvodynia misery

[kaya12]

Hi

I have vulvodynia and the pain is immense at the moment im on 30mg of amitriptiline nightly and lidocaine every 90 mins im finding it so hard to deal with the constant pain it hurts to sit down and am struggling going to work and its making me depressed has anyone got any hints tips to relieve the pain or any other medication ideas

xx

[Jobug]

I’ve been seeing a physical therapist that specializes in pelvic floor problems. A regular Physical therapist won’t know what they’re doing—so make sure you get someone who specializes in pelvic floor issues. Also ask your Gynecologist about hormone therapy. For over 15 years I’ve had severe pain issues and have never been able to put in a tampon without pain. Within last few years I’ve noticed a lot of vulva pain as well. So what PT does, is looks for muscle knots and teaches you how to breathe and relax your muscles. You will probably need to get a pelvic wand to release your own muscles. Tight muscles cause pain all over the perineal area. It’s weird but true. Also hormone therapy with topical estrogen could help you too. If you have low estrogen, that will cause pain for some people (me). It can take up to 6 weeks to work, but if that’s part of the issue, then it’s good to address everything all at once or the pain won’t go away. Also ask for a Valium suppository script (it’s a pill) because lidocaine doesn’t do anything for the deeper muscle issues. For me, I don’t even use the lidocaine anymore because it really just doesn’t work to stop my pain. Oh and a general muscle relaxer might help a bit too. You’re more than likely having radiating pain to the vulva from another area...the Valium suppository helps relax the muscles.

How long have you been taking Amitriptyline?

Those are some thoughts and ideas. Hope it helps a bit.

[kalecolbe12 in reply to Jobug]

If you don't mind me asking what did they diagnose you with pelvic floor dysfunction or something else? There are so many things within the pelvic floor dysfunction of course it's a myriad of muscles down there...I am also in pelvic pt and it's 2 steps forward and 1 step backwards...but I'm a lot better than where I was 6 months ago at the emergency room with all the pain....and thank God for muscle relaxers.... Cyclobenzaprine has been amazing and hoping to get some internal volume this week so I can tolerate internal trigger points although the external trigger point work and mobilization has helped a lot....also was wondering if you have considered Botox?

[Jobug in reply to kalecolbe12]

I was diagnosed with pelvic floor dysfunction and vulvodynia (and I think a third diagnosis but I don’t remember the name). The internal pressure points are what hurt a lot for me and cause me some of the pain issues I’m having. External there are only some spots that I feel pain when looking for pressure points.

I was referred to a Specialist in the city (that of course will take months to get into), that does more of the procedural or invasive treatments. I was told about Botox (supposed to relax the tight muscles temporarily), nerve blocks, as well as a new procedure where they implant something that sounds like a nerve stimulator or something under the skin that is attached to nerves or something somewhere (low abdomen or groin, not sure) that has been known to be very effective in taking away the pain. It’s an actual surgical thing, but from what I understand, it’s kind of like a nerve stimulator that people can get in their back to help with back pain...except it’s for pelvic floor. I’m all for it if nothing else is a permanent fix!

Hope I answered your questions.

[kalecolbe12 in reply to Jobug]

Yep that would be the interstim...a lot of people get it here in the states....works well for

A lot of people... am going to ask this forum if anyone has it ...

[Notawoman]

Try Betnovate ointment also CBD ( not too weak a strength though) and I am also on Gabapentin. Hope you get some help from this. Also, Jobug has given you some really good advice re. seeing a physio who specialises in Pelvic Floor problems. If you live in Briton there should be one that your Gynecologist can refer you to. They can offer lots of help. I am seeing one and they can suggest many different ways to alleviate your pain.

[Add-on]

Get some compress that you can put in the freezer. I wrap one in a sock and out put either inside or outside my panties. Online there are a number of pudendal cushions. Rather expensive but you can make your own using foam layers.