My PFT said that if I got pelvic floor Botox that sometimes it can lead to an inability to hold in our bathroom needs and that I’d be in a diaper for some time. Does anyone have any experience with this? My muscles are so unbearably painful and tight and I get Botox for my masseter issues and it helps tremendously so it seems like a good option for hypertonic pelvic floor. What’s your experiences?
I’ve had this for a year and a half now and I’m in PFT and medicine just makes me a zombie and unable to function as a person and I just can’t do oral medicine anymore. I have an upcoming appointment coming up with Dr.Irwin Goldstein which gives me a glimmer of hope but I’m just feeling so overall hopeless about this condition. My pain level is back to 10/10. Is it possible to ever get better to a point that I can feel pleasure again? I can’t even remember what that felt like. Is it possible to get to that level of recovery or is my best hope to just numb?
I was on amitriptyline for a year and just went off two months ago and I’m experiencing horrible gastrointestinal side effects. Before I was on amitriptyline I didn’t have any GI issues and while I was on it I didn’t have any issues. I slowly tapered off but it’s been two months and now all day long I’ve been having stomach issues for two months.
Whenever I eat it BURNSSSSS for hours. Then I finally feel hungry again so I eat and then the burning returns with a vengeance for hours. The bloating is so insane too!! On amitriptyline I gained 10 pounds, but going off now I look pregnant from the bloating. I’m nauseous constantly. The burning and bloating is the worst though.
Does anyone know what is happening? Any advice?
I went to the doctor for it and she prescribed me acid reflex medicine and gas x but it hasn’t helped at all so I’m going to go in for more testing.
I have provoked generalized secondary vulvodynia. The pain is everywhere but most painful at 12.
I’ve tried topical estrogen/testosterone and it helps.
I use topical gabapentin/amitriptyline and it helps.
However the nerve pain is still so intense. It’s like every cell inside of my vagina is on fire and touching a burning oven when touched.
I’ve tried norotriptyline/amitriptyline but I couldn’t function on them even after a year.
Is there any hope? Can anything else help?
I’m going to try to find other vulvodynia specialists so if you have any you like please DM me.
Can surgery help even if the pain is everywhere? I just want this pain to go away and to get my life back 😭
So far oral medication has been so awful it makes me so scared to try new oral medication. I am a zombie and sedated and cannot function what so ever even on the smallest dose :(
I hate how sedating nerve pain medications are :( I’ve been on them for almost a year and I’m such a zombie on them (norotriptyline and amitriptyline) Looking back this past year I haven’t even lived because I’m so sedated but I want to get better and go into remission…Is it possible to get better without this component?
I just wish I could get the surgery and be over with this condition. I got this from a yeast infection though so I don’t even know if that’s an option for my case.
Did you guys find a medication that wasn’t sedating or works for you? Can anyone relate? :(
Hey I was wondering if anyone had any advice or idea what’s going on?
I was doing so much better in my healing, until I went to the pool and now I’ve been in a flare up for so long. I showered and cleaned thoroughly but I’ve been burning nonstop 24/7 unprovoked 😭 I use unscented soap and laundry detergent. I’m now considering switching meds too to see if it’ll help.
Does anyone have any insight? Thank you guys all so much in advance 💖
Hey guys! I developed vulvodynia a year ago and have been suffering with it ever since. I have nerve pain and a hypertonic pelvic floor. It’s been a healing journey. I’ve noticed that on the week of my period I have zero vulvodynia pain. Does anyone else experience this? Or why this is? Could this be correlated to endometriosis? Thank you all for your help and support 🥺💖
I’ve been on this medication for half a year now and for migraine/nerve pain it’s been great! However, despite eating super healthy (pretty much only vegetables and fruit) I’ve been gaining weight lately. I’ve been doing 10,000 steps a day and back into working out so I don’t understand what else I can do to lose weight :( does anyone have any advice or tips?
I developed vulvodynia from a yeast infection a year ago and I’ve been in PFT for a few months now and it’s been helping a lot vaginally. My PFT suggested that I use a Kiwi trigger point vibrator to work on my rectum and it’s beyond painful. It’s embarrassing to ask but does anyone understand why this is or what’s going on? It just BURNS. Anytime I use the bathroom or when provoked it BURNS. I use Baclofen and gabapentin/amitriptyline for my vagina and it’s helping a lot. However, my back door is excruciating. Does anyone have any idea what might be going on? Thank you guys for all your help and support through this condition this year you guys have really saved me through the hardest times 🥺❤️🩹