Forums:
A number of people in this forum and in the success stories have mentioned vaginal irritation/burning as a symptom that has developed or been exacerbated during treatment - perhaps as a result of the cleansing of toxins. for those whose primary issue is in the bladder, it is easier to distinguish that this irritation is a result of the treatment. but for those with vulvodynia, how do you know if ongoing/increases in vaginal irritation/burning while in treatment is a result of cleansing OR a poor response to a particular combo of herbs/supplements? granted sometimes you can just tell it's a bad reaction because it's so bad, but other times, it is more subtle. i have been dealing with super frustrating, ongoing irritation for a few months now and we keep switching my regimen, but then i hear about so many people feeling vaginal irritation/burning during treatment that i wonder if maybe what i'm feeling is part of the treatment process and it's just worse for me because my tissues are already irritated from the disease. but, how can i tell the difference? anyone have any insight on this?
vulvadynia
Okay. I want to try to contribute to this question but I don't exactly know how much I can really answer this so I'm just going to report what I am noticing myself. I started out with bladder pain and vulvadynia pain. I noticed the bladder pain more as it was the louder issue and the bladder was more inflamed. But now asthe bladder has tones down I notice the vulvadynia. I have been in treatement for 14 months. I now feel that I have waaaaaay more irritation going on in my vaginal/vulva - my bladder isn't totally better but it sometimes feels like I've switched places. nowI have had months where the vulvadynia has felt better- not gone but better and right now is not one of those times however other things are better but right now- I feel so much tensionand swelling going on in my vulva/vagina canal its not even funny. I can only surmise I have tons of cleansing going on. I told Matia about it and she added an addional capsule to my formula to work on this. Initially I felt the underlying stiffness/irritation with the new addition of burning on top. At this point I have come to name and distinguish the pain I feel as related to the herbs/probiotics or foods that might turn up the irritation. I know that the probiotics have a particular reaction in my body felt in the tissues as a particular flavor of burning. I notice I react pretty soon after taking them. Now in each case I really think it is individual- cause I checked in with Matia told her about the increase in burning from the new formula and she told me to hang on and wait it out. sure enough about 4 days into the new formula I am tolerating it. The vulvadynia is still there- I feel it when I sit especiallyand I can only surmise that all this increased vuvladynia action is related to my body cleansing and trying to handle the inflammation from the yeast coming out and down the vagina.but the irritation the layer of irritation on top of the vulvadynia fromthe herbs/probiotics is back down. now I'm just irritated and waiting for this new formula to work its magic. It could be awhile before I notice vulvadynia pain getting better - I just don't know maybe it could take a long time - I wish I could give you a blanket direct answer but so much of this is individual. things to look for in distinguishing reactions is how you feel about an1-2 hours after taking the herbs. worse? better? and I think there are different levels of toleration here-like say my pain level is at a constant 5 and then I take the herbs and it goes up to 7 but later it feels better maybe that is a clue that the formula is working? I had to take yeast free breads out that I was eating and that helped me some too. It is soooo subtle and confounding. you have to keep trying to tune in and keep working on it until it works out- but for me it seems like we alter things every 3-4 weeks cause its not working anymore and my body has enough changes it needs something else. I really hope this is not confusing or possibly addressed/helped your question. It can be so tough to know. I am interested in how other people deal with this.Mary
thanks, honeybee. i'm really
thanks, honeybee. i'm really sorry you are having increased vulvar pain right now, but hearing your experience is helpful to me. your insights make me feel like i need to give things more time to work and that my ongoing irritation/burning are not necessarily a sign of the disease state getting worse. earlier on in treatment, i had an experience where the formula we landed on made my vulvar issues feel calmer to a degree (although they were DEF still there), so i am looking for that feeling everytime we make a change. but since i have felt crappy for the last few months, i've been constantly reaching out to matia to change the formulas but haven't been able to hit that calm feeling again. this has been extremely upsetting as you can imagine. but, now i'm wondering if my expectations are off. i am going to have to try and give things more than a few doses before changing. another question, do you ever just get swings of feeling worse randomly when you haven't done anything that should have caused that? if so, do you contact matia or just wait it out? like i thought i was feeling a very little bit better as the day wore on yesterday, but then soon after dinner, i just got an upsurge in irritation, as well as major bloating. so ofcourse, i am going over and over what it could be. i didn't eat anything different, so i'm thinking could it be the probiotics suddenly causing irritation (i had taken them about an hour or so prior to the upsurge)? or could it be hormones since i am a few days out from my period? or is it just die off? i'm just not sure, so would like to know from others if sometimes random surges of pain in the course of the day are just par for the course in treatment and don't require attention. thank you.
This is really crazy making
This is really crazy making this whole process. I have been in treatment the same amount of time as Honeybee. In the beginning of treatment I do not remember the burning to be too bad and it progressively got worse. In about February I was really doing bad and afraid that I was getting worse. Eventually we cut out the probiotics which for sure helped. We went onto another protocol which helped but not fully and recently we changed again as I think I took the last protocol as long as I could. It was extremely drying. I have recently cut out some more foods instead of adding and this is the fifth day in a row without burning. I have cut out foods that are high in oxalates like spinach, blueberries, kamut, spelt etc... and I feel so much better. I don't know if it is a coincidence or what. As I said it is crazy making. For now I will enjoy this feeling and I am sure you will get there too. It can be discouraging but I am sure between yourself and Matia you will get to a place where you are feeling more comfortable. I at imes have felt that maybe it is not going to work for me and then I have a spurt like this and the faith and hope comes back. My husband is even celebrating this span of 5 days.
update
Okay- so its been a week since we instigated the new formula and the wait has paid off well cause I am feeling better. Probably my best couple days ever- the VV is still there of course but it has gone down significantly. It can take time to #1 tolerate the new formula #2. feel better from the formula. In the beginning it was very hard to notice improvements but as time goes on those improvements -your body responds quicker. Keep in mind this condition is extremely dynamic and the treatments Matia gives us will change things. Yes- it is totally normal and I frequently have bloating out of nowhere from a food that I might have eaten fine with no reaction for a long time. Probiotics for me are frequently uncomfortble at first and then later its like my body is totally hungry for them and accepts it fine- in fact I feel better after taking them over all. Swings of randomly feeling worse for me usually indicate that its time to move to something else - just figuring out what that is a challenge but after a year I can even tolerate those random swings for "worse" you are not getting worse! please continue to hang on. all my best. Mary
Good topic
Thanks for posting this topic. I am almost two months in treatment and just noticed a dramatic increase in VV pain yesterday. I was worried that things were getting worse. Maybe it is just die off :)
Yay! honeybee and kriste...
Yay! honeybee and kriste... so happy you guys are having some great relief! always good to hear about these breakthroughs. thank you so much for sharing. also, thank you for inspiring me to wait things out and not be so quick to reach out to matia for a regimen change when i don't necessarily feel improvement in my vv irritation levels. for the last week, i have stuck with the current regimen and lo and behold, i've had some intermittent spells of things feeling a bit calmer. i still have that sandpaper under the skin irritation feeling and definitely have surges of increased irritation that have really made me feel tempted to throw in the towel, but then have come the hours where there is kind of an overall sense of things being calmer - not like they could be classified as"good" moments, but definitely better moments. i do feel like i get some surges in irritation not too long after i take the probiotics, but also having a TON of throat burning, some bloating, and a bit more sediment in my urine, so am feeling like this may indeed be treatment/die off related. overall, i feel like your words have helped me to change my immediate expectations a bit, and try to accept some continued irritation as part of the treatment process. it's REALLY not easy, but i am trying. on another note, i have been off all grains for about 3 weeks. in some subtle way, i think that might be helping too, but it wasn't a major revelation once i went off of them, so not sure. just sticking to a small amount of yellow potatos a day. hoping will someday be able to get back on grains. my diet is super duper limited at this point, but because my irritation fluctuates so much in a given day, i feel like i can't really test things out at this point because i wouldnt be able to really tell what reaction was food related. frustrating.