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I'm still struggling to get over a super crappy period (which has being going on for almost a month!) and have been going back and forth with matia changing my herbs to hit the right combo (just on herbs now - no probiotics). just wondering if there is anyone else who has had to go through MULTIPLE changes before hitting the right combo? Is it really normal in this treatment to have to go through so MANY changes that often actually make you feel WORSE? i mean, in the last week and a half, i've actually had some bladder burning, which isn't even something i've had to deal with before (i am a vulvodynia patient). thankfully, the last herb change has mostly taken care of the bladder issues, but my vulvar tissues are still totally irritated (and somewhat swollen which is ANOTHER new symptom that i have never had). it's very hard to see progress and feel confident in the future when you feel absolutely awful and none of the herbs seem to be helping!!! i mean i'm happy the bladder issues have gone down, but it's like the herb changes are just taking away symptoms that THEY started rather than hitting the longstanding symptoms.
so frustrated. i just wonder when and if we will ever find the right herbs to help. what a month. this sucks.
thanks in advance for any insights on this.
I have gone through this and
I have gone through this and I know others have too if you look in the boards we all talk about this often. Sometimes it just takes time to find the right one but hang in there it will happen. You might be going through a deeper level of treatment sometimes that will bring up new symptoms. I know Matia said that when the immune system is stimulated it can cause more pain but once things improve that it's even better. Hang in there you will make it .
I had about a month of this
I had about a month of this as well... feeling all the feelings you're describing, frustrated, angry, confused, sad... where after a formula change I got worse and kept feeling worse and she was trying all these dif combinations and couldn't find the right formula and I was nervous how she ever would. Thankfully, we finally seemed to find the right mix and I'm in a much better place at the moment, but this seems to be a normal thing that happens sometimes in treatment. From reading others' posts, it could be that it's another layer that needs to come out. Or it could be hormonal (what was part of my problem I think). Or that b/c Chinese medicine is so "imprecise" she can't get a readout on exactly what you need and it takes trial & error sometimes. Or many other things. So even if she gets you feeling better soon, this type of thing could happen again to you & me and it's not the harbinger of something bad or that this won't work, but just another setback. Pretty much everyone I talk to who's gotten well speaks of this happening.
Also, I have had vulva area swollen & irritated which Matia explained to me as sort of die-off and related to the toxins coming out of your pee and such, which irritates the area.
But you're right, it sucks, no doubt about it. It is so damn challenging & disheartening sometimes to keep hope & positive. I am thinking of you & hoping she's able to get you to a much better place soon!!
aboros5
I just got over my super crappy period that lasted a little over 6 weeks - few windows of mild releif but it was mostly bad-and I am almost 10 months into treatment! We tried many combos until finding the right fit for this time. When I started treatment my bladder was thebiggest thing and the vulvadynia was there but I didn't notice as much- then it seemed like the swelling/ burning/vulvadynia over time is now a bigger issue and the bladder is better overall- and now a little more prominant - (depends on the day for me sometimes.) sometimes on days my bladder is bad- I feel my whole pelvis just hurts- somtimes its a new sort of pain sensation/sometimes its more in my vulva/somtimes its just my bladder and not so much my vulva. new sensations come up, disappear, etc one thing is for sure- even the bad phases I got throughand we found the right combo or things naturally calmed back down? things fluctuate. some flares pop up for no conceivable reason other than a new layer of toxicity is coming up? I noticed alot of swelling-in my tissues as well- just recentlythat has gotten better. Yes it is normal to feel what you are going through- sometimes treatment and cleansing seems to be uncomfortable and stirs up other side symptoms. I realize that since the bladder/vagina are next one another that any skin opening/exit pathway my body feels it needs to use than its going to purge and do it. sometimes I get werid rashes on my back even! I know how frustrated you feel. I was really bummed especially after I felt like I was making some substantial progress and I was a little panicked when the initial ones we tried weren't doing much for me in the way of bringing down pain- altho maybe they were doing other things for me? I realize I am still in the thick of clenaing out alot of stuff and its so cyclical in a way-sickness is like a circle and you have to come at it from different angles until the body can support itself. them cooties sure put up a fight. a very very uncomfortable fight1 hang in there- the right formula will happen and you will feel better. you are not beyond healing. I feel like my most significant vuvladynia progress has been rather recent and it fluctuates.
happened to me too!
I think this is totally "normal" from everything I read and everyone I talk to in treatment with Matia - and from my own experience. I would LITERALLY email back and forth with Matia 20 times with in a few days, changing things hour by hour! It was so scary - I thought "OMG what if she can't find something that will work!" She always did tho and each time I had a bad period I got more and more confident that it would pass. Try to stay focused on the FUTURE, not "right now." I know - it's almost ridiculous to say but this is how I got through, just imagining when I would get a little relief and what I would do when it happened - like maybe go out to dinner or take a long walk or something else that I couldn't do right then because I was in too much pain. And then when I felt better, I would try to do those things. It's a total mind game but truthfully that's how we are all still alive I think - our minds our pretty damn strong and we find ways to keep going to get thru this crap!!
thank you thank you thank you
i can honestly say your responses lightened my heart today. i've read a lot of posts/stories in the past that addressed having to make changes/tweaks to the formulas, but it always seemed like within a tweak or two people felt better. and when i just kept feeling crappy through all the changes, it scared the heck out of me. and, truthfully, it still does - but a bit less so hearing that you all got to the other side when things got this bad and that you ended up a step forward in your treatment. i feel a tiny, tiny bit better right now - not sure if maybe this last change is easing things up a bit - but at this point, i'm just hoping things will start to turn around for the better sometime soon. we planned a carribean vacation for mid-april - a trip we booked when i was feeling fairly decent about a month and a half ago. now of course, i'm terrified of that trip and how i will feel - but i know i can't live like that.for the most part, when i am feeling bad, i tend to withdraw and not want to speak to anyone. but i'm glad i ended up reaching out despite how deeply low i've been feeling. this site and you guys are like the flowers on the side of the road of an otherwise dark and often intolerable journey. thanks.
Me too
I was going through this for the last week and a half. I was so worried I was really bugging Matia, so it's comforting to hear everyones experience. I just went through about 5 changes, had to run all over the city of Chicago to get just what Matia prescribed and I felt crazy and had great doubts. Now I'm feeling just slightly better physically, but I also have a feeling that this is the right combo for now as Matia is not changing it anymore. And I'm telling myself that as long as I'm having die off, even if mild, I am constantly getting better, every moment. Not to mention that after having two children in two years and gaining that weight that it is now flying off of me as I breastfeed and do this diet. I'm also glad people are talking about the struggles to live life. With my bladder urgency I dread when even my husband suggests we do something fun b/c I feel that my symptom takes the joy out of anything. And I tend to avoid friends bc I just want to wAit until i'm better to be with people again. I have to remember that these things can be helpful to my health and to take my mind off my bladder even if it's only for short periods of time.
To those of you who posted (& others in treatment for awhile)
To those of you who posted (& others in treatment awhile) -- can you at least say that as treatment progresses, each "bad"/"regression" period is progressively less terrible than the preceding one? I think that would help to ease all our minds too.
IC Hope
To answer your question-I would say that for the most part -my flares are less intense than they were several months ago though- this last one was bad but in general they do seem to be progressively shorter and like others have said- I feel more in control when they do come- they are shorter and my dosages usually have a positive impact. I have little tiny miniflaresin the later part of the day but then those ease up and go away too. I feel coming out the other side of this last 6 weeks stronger and better than I did when I was feeling pretty good before all this started. I'm not so scared to go through another one of these because I know it will end and I'll be doing even better. In general my sense of "normal" is shifting to a more comfortable level.
aboros5
I just wanted to add that I went on a much needed vacation over the christmas New years Holiday and I had been having pain/ issues of course several weeks before. Things leveled out and I was at 6 months into treatment at that point. I stayed with friends in Philly and NYC. It was without a doubt the funnest most memorable vacation I have ever had. Eating out was tricky and I cooked ALOT at my friends house. The excitement of being in a new place- being around some people who knowing I was sick but who cared for me and whatever I needed to do-that was great -I felt more normal and I got out of the mindset of "I'm chronically ill- to "I'm on VACATION whoooo!" It helped me feel normal somehow... it was my first time out dancing in FOREVER, getting more excercise, being with people I love and don't get to see too often, all of this seemed to contribute positively to my health. I did get a little run down from lack of sleep staying up late! Being able to make the descision that I was going to go no matter what and the determination to have a good time no matter what- if a flare came then ok I would just take some time off from the party and chill out in the spare bedroom.I did have to rest alot but there was so much distraction it was nice to forget I was sick. It was OK! Somehow the normalcy and fun of getting away from it all - not missing out on anything because I felt too bad to go-this was actually a nice turning point in my treatment. It coincided with a milestone of being able to tolerate some medicine that my body initially rejected! It was alot for my body- all the travel and etc. but I recovered fine and had minimal problems the entire trip- the biggest thing that caused me trouble was I switched waters cause they didn't carry my water up there. So my body reacted to that switch a little bit but then got used to it. Do not stress about this. enjoy yourself. If you find you need to rest- thats' OK! I also found that a little bit of sunbathing on the beach- for about 10-15 minutes in the summer was nice for my vuvlvadynia - and in the beginning of my treatment I went to beach with my family-it was really soothing being next to the ocean rythems and being weightless swimming in the salt water was awesome-very healing to me. I have felt so HEAVY with the burden of this. Getting away for a little while can to me be a source of great healing and respite. ENJOY YOURSELF! Do not be afraid to let go of your worries have a good time. If you get a flare it will go away - they always do- just do the best you can. I know your anxieties so well! What I am saying is- even if you go and you do feel bad on your trip- the carribean its still a really healing place to be. I wish I was going to the carribean although spring is starting to happen with warmer more subtropical weatherand I am so grateful!peaceMary
absolutely
yes, absolutely the bad periods are not as bad the further along in treatment you are. I can't remember the last time I felt really bad - it's probably been 2 years. At this point in my treatment, feeling bad does not keep me from doing most things because my symptoms are SO much milder and completely manageable. I remember the first time I ventured out on a short vacation. I was so nervous, mostly about what I was going to eat and of course worried my symptoms were going to flare and ruin the vacation. The amazing thing was that I felt better when I was away from home, my symptoms were reduced. Carol
Post Vacation Update
Just got back from more than a week of vacation and wanted to give a quick update since I actually have something positive to say for once! Ultimately, you guys were right - Matia did find the right combo of herbs and I did start to feel better. unfortunately, I continued to have increasingly MAJOR sacrum/leg/glute burning, but Matia assured me that since the other stuff was feeling better, this was just a factor of the crappy stuff being released - so not a bad thing. Anyway, left for vacation still with all this burning, but most of it eventually passed and we had a GREAT vacation!!! I was able to relax, enjoy the beautiful caribbean, and best of all have sex (multiple times!) which I couldn't even consider during that super bad spell a few weeks ago. It was no problem staying on the diet because we stayed in a villa so were able to shop at the local supermarket and grill out a lot - actually ended up enjoying that WAY better than any of the restaurants we tried anyway! Now, none of this is to say that I was close to feeling normal physically, and i still absolutely had fluctuations, etc., but, the point is, I thought I would never get out of that absolutely awful bad period I was going through a few weeks ago - and i did. it continues to be a tough road, but this was a good spell after a major crap spell, so want to share just in case it makes anyone's load feel a little lighter.
aboros5
I was thinking about you the other day!- I remembered your post and wondered if you had come through your spell and got a chance to vacation! your post then and now kind of really helped me. Soooo glad you got to experience the beach and have some respite. I love hearing when people are doing better- I think alot of us when we are doing better don't always think to share it we are so eager just to get back to our lives. I really appreciate your update. The pockets I have where I feel pretty good and great are very encouraging to me- its the proof I need to continue to work my a** off to get well and its an anchor when I am not feeling so awesome to be PATIENT. They keep coming and will continue to I think until the balence is established. Your vacation sounds amazing. Thank youMary