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Hi,
I am seeing Matia for the first time next week and am very much looking forward to it - particularly after reading all the amazing success stories that have been posted here. Of course, I am also more than a bit trepidacious about embarking on yet another "promising treatment" - especially since I actually don't have IC. I have vulvodynia and nerve pain in my upper thigh/sacrum. I have gotten much better through physical therapy, but after a number of years of therapy, i am still having issues quieting my nerves down completely and am at a point where I can't help but wonder if there is something systemic going on. I went off the pill about 4 months ago and although I feel better in some ways, now my flares seem to be even more erratic. And, at this point, I have no idea what sets them off, other than sitting too long or being inactive. I don't seem very reactive to foods (except chocolate/coffee/red wine/grape juice - but i haven't had those in years), but I am still giving Matia's Level 1 diet a shot as of this past weekend. Figured I might as well start it now since I am seeing her next week.
Anyway, don't want to bore anyone with too many details about my story, but really just wanted to see if there are any success stories out there related to vulvodynia/nerve pain. I have read a few (which have been hugely inspirational/comforting to me - and really helped to solidify my decision to come out to LA), but of course, wondering if there are any more out there. At this point, the more hopeful stories, the better.
Thank you.
Jackie
Hope
Hi, Don't feel your story will bore anyone - we are all here to support each other and we are all coping with the same sort of health challenges. Your story may mirror someone else's story. We are all fellow travelers on our healing journey (if that doesn't sound too corny!)
vulvodynia nerve pain
I now have generalized vulvodynia nerve pain from front to back, possibly brought on ... Success Stories From Interstitial Cystitis patients ... Liposuction
my experience
Hi Jackie!I don't know if you can relate to any or all of these systems, but here is what I was experiencing as far as vaginal/nerve pain before I started with Matia:I had awful pinching, stinging, and burning sensations in the genitals that would run down my legs and sometimes shoot up into my gut. I had weird sensations of hot and cold, waist to feet, related to the nerve pain. At times I felt like that "area" was plugged into an electrical socket, and it really affected my sacroilicac joint, inflaming it and causing sciatica. All of this has gotten way better. Do you have any signs of bacteria or yeast? Have you been diagnosed with a nerve condition?
Thank you all so much for you
Thank you all so much for you responses! Although I wouldn't wish these kind of issues on anyone, it is comforting that there are other people out there who actually "get it" when i talk about these weird symptoms. Mine is kind of a long story, but basically everything started when I was 16 and started having vulvar pain. Unfortunately, I wasn't properly diagnosed with vulvodynia til I was 21 (after no positive test results and many failed treatment attempts including excessive topical yeast meds which made everything worse). The only thing that did help me during that latter part of that 5 year period was effexor (anti-depressant). When I was 21, began seeing an osteopath who determined that my pain was the result of internal/external trigger points. From the first injection, I got relief. Did that for a year, then moved to Chicago and began weekly PT with someone who is a renowned expert in the field. After about 2 years of therapy, I became virtually pain free with occasional flares that only lasted a few days every now and again. I was doing so well that i was able to backpack through europe, have an active sex life and even reintroduce my trigger foods (chocolate and coffee - in moderation). It was more like i just had a minor sensitivity, but no longer a major issue. I would go for PT tune ups about every 9 months of so if that.
I was in good shape for about 4 years. Then close to 5 years ago, when I started dating my now
husband and was having a healthy amount of sex, i got my first-ever yeast infection. i had no
idea that is what i had and just assumed it was a flare. i let it go for awhile and by the time I was diagnosed (a few weeks later), I was in really bad
shape. Unfortunately, the nurse practitioner I went to see also misdiagnosed me and told me I had
BV, so i went on a round of Flagyl. Needless to say that kicked the yeast into high gear, so I took
Diflucan. Unfortunately, I was so worried about the yeast that I also went way overboard taking a ton of REALLY strong acidophilus every day and ended up with an overabundance of leptothrix (kind of the opposite of yeast) which causes similar symptoms to yeast. So had to get my ph back down to a more alkaline level. ugh.
Eventually, I was able to get back in balance, but by that time my nerve endings, especially in the
perineum area, were all turned on again. I felt like I was walking around with sandpaper under
my skin. Went back to PT and was feeling better (although nerves still sandpapery), and
then got another yeast infection 6 months later. Took diflucan within about two days of it starting, but after that, my nerves and connective tissue in the area were just shot. Had to double my effexor dosage and went back to weekly PT.
Now, four years from that point, I am still struggling. I was able to go way down on the effexor
and have gotten much better, but cannot fully lick the problem. And now, I have other symptoms, like what i mentioned before - the nerve issues behind my thigh. Well, up until about a month ago, it was just one leg i had all the issues with, now it is my other leg. It's really strange too becuase I came off of having a really great week (syptoms wise) and then I just spiralled into a flare that now inlcudes the posterior femoral cutaneous nerve in both legs! My PT basically says the nerves are just hypersensitized and continue to fire pain signals to the brain even though the connective tissue is better and there is no nerve damage. I get that, but why after years of PT are they still not settling down completely? Makes no sense!As far as yeast, I don't seem very reactive to foods and have never had another infection, so really don't know if there is a yeast connection. I just hope that even if there isn't Matia can still help. Does everyone she treats have yeast? So many "ifs"... well, thank you for listening.
Jackie
Jackie,You are not boring anyone with the details of your story. If anything- at least for me it helps to hear someone else's story and know that while we may not be going through the exact same thing- there is this huge comfort that I'm not alone in dealing with this condition! I actually find the details of peop;es story completely facinating and educational. Anything people feel inclined to share in this safe and suportive circle is immensley appreicated. This site has been hugely supportive to me these last 5.5 months! My vulvadynia is connected my IC -it has gotten alot better since treatment in that mostly now I feel it only really during flares with hormonal fluctuations. Sexual intercourse was unbearable and I still haven't really tried that yet. There is too much sensitivity/yeast still going on- I just want to wait because I feel like the intenisty of friction may be too much for my nerves to deal with. Orgasms acheived alternatively from coitus- could bring on flares for me about 2 -3months ago but that is not happening now which is encouraging! Sometimes even exercise or intense activity-walking or jumping or something was too much. My syntomns waxed and waned but were at different times vulvar pain/vaginal canal tissue tender to even light touch and pressure, heat, tenderness to my entire pelvic area, bowling ball sensation in bladder and vagina/ headache in my vagina!, pinching pain-/burning pain/ swollen tissues. I went on a walk last night that was quite vigorous chasing after my energetic dog and things felt fine after that! I sit down for long period of time and that is not bothering me right now at all. I have a alot of yeast still but i think that is getting slowly better. Enjoy your new path to wellness!Mary
Hello Everyone,My name is
Hello Everyone,My name is Melanie and I'm from the Bahamas. I just started treatment with Matia a couple of weeks ago. I have vulvodynia that is related to my IC, but I know what you mean by the "electrical" charges going down your leg. I was actually feeling so much better and the constant "soreness" down there had subsided a lot, even though I just started treatment. However this morning I felt that familiar "burning tingle". I know I didn't eat anything different, so I'm not sure what is going on, but I will talk to Matia about it on my next appointment. I know I have lots of "yeast" problems too, as I was on a low dose antibiotic treatment for chronic UTI's for three years. But I can't tell you how glad I am to have found Matia and this incredible website with all of its information and caring people. I feel so very very blessed and positive that I will be able to have my life back again. Thank you everyone!!