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I have been on 16 SF + 4 goldenseale for a few weeks now and as I said in a past post, once I got over the intial hump, I didn't feel much different on 3 versus 16 pills. i just pretty much always feel crappy in terms of my vv.
now, i did notice that this month i had less discharge (which is great) and even though i still got the watery surges of discharge around ovulation, they were less frequent and less heavy. also, my sacrum/leg burning hasn't been too bad these few weeks.
but, as i said vv, still sucks, and as always was super bad the last 10 days as it always is leading up to ovulation. but i was hoping for some reprieve once ovulation was over. instead, the pain just changed to that dry (although not literally dry just feels that way), raw, hot pain that i've had on and off before and now my sacrum and leg is burning again too.
so, what i want to know is... is this cleansing pain? for those of you who said you had vv burning for months on SF/golden (i think i've read that), was it a dry burning raw feeling? i'm just trying to understand how this could just be the cleansing if it wasn't like that during the last couple of weeks. did your cleasning burning change at all while on the same regimen?
i asked matia and she didn't answer as to whether it was cleansing pain. she just said to add siberian to help with dry feeling. which does not seem to be helping.
my issue is that i want to continue to push through if this is helping me, but how long did those of you who "pushed through" with the burning from SF/golden combo push through? how do you know when it's not about pushing through, but just that it's not working?
thanks for insight.
Burning
I'm sorry I don't know the answer to your question, but maybe you should e-mail Matia back and specifically ask if this is cleansing. Keep e-mailing until she answers your question to your satisfaction. Matia usually knows what is going on but sometimes forgets that we don't.
maybe i will email her back.
maybe i will email her back. it's just so frustrating. i just wish i had some undersatnding of what's happening in my body. i hear so many people talk about how the cleansing caused vv burning for months on end, but then it went away and they feel better. so i tell myself it's just cleansing and i need to push through. but what if it's not? what if it's just the piills making my pain worse because they're not a good fit? how can i know? how did everyone else know? also, let's say you're on a regimen and you are tolerating it, but it's not making your pain any better. that's how i was feeling on the sf for the last few weeks. i was thrilled that i made it over the hump and i was tolerating them, but then after a while i started to think, well... how long do i just go on like this? how do i know these are even doing anything if i just feel the same on them. i would love to know how long other people in this situation wait before asking matia about switching? i always worry that i don't give things enough time, but on the flipside, do i just sit around taking something that does nothing for me for months on end?i'm so confused and so tired of feeling bad.
since i suffer all the time..
Hi lovely,My intestines are alwayssss in a lot of pain...from prickly...to stabbbbing...to scratching.....it's horrrific......and i have been on and off the sf over the years...it's sooo confusing.....what i usually do...and sometimes....i might do it too soon...too....i email her every 2-4 days.......and let her know exactttttttly how i am feeeling.....she changes stuff all the time....but i am never ok....so...i am not sure...if i need to ride things out.....i am always praying that this time..this formula will be different.....and give me some relief......a few days ago..she added in one bifido....and within 24 hours...i was much much worse.....and my face became a pepppporoniiii pizzzzzzzzzzzzza....so she took me off...it's all horrrrrrrrrrible......now i am on sf...and goldenseal...and oil of oregano....and mega....and siberian...and i still feeeeeeeeeeeeel like poooooooop...over this...wish i had an answer for you my darling...and the rest of us adorable souls....suffffering sucksssssssssss
Burning
I'm not sure it is possible to know whether the herbs are just causing burning because of cleansing or whether they are causing problems. I usually e-mail and ask. She is the only one who knows whether you need to push through or if something needs changed. I rarely guess right with it. I hate to e-mail her a lot, but how else is a person to know? This is so different than conventional medicine where you get a drug and a list of side effects to go by. The balance is so important to how you feel going through this. I feel like crap most of the time too, so you aren't alone.
I have been taking goldenseal
I have been taking goldenseal a few times during treatment, and it always gave me a lot of urethra/vaginal burning. SF also caused burning but it calmed down after a few weeks. About 4 months ago I was taking goldenseal and SF and I had constant intense burning, but after several weeks Matia took out the goldenseal and replaced it with rehmanniae peonniae and from that moment the burning started to decrease. It's different for everyone but I think I had a lot of die-off when I was taking goldenseal and I think it has helped to improve the burning afterwards...I also have increased burning around my period/ovulation, but it's not constant anymore, some days it feels quite ok and other days I have a lot of burning. So I think goldenseal and SF can be important in the healing process, but I know that it can be really difficult to push through when you have constant burning...Vicky
thanks for these responses. i
thanks for these responses. i had a pretty rough couple of days. then things started to get every so slightly better. and then matia suggested taking out the goldenseale, which seems to have helped calm the burning more. of course i am so grateful to have a reprieve from that awful spell. but the thing that gets me is that even the reprieve is really just being back to the same old irritation. i still don't feel any better overall. i am 17 months in treatment and continue to have the same ups and downs i've had for years, if not worse depending on what i'm taking. i'm turning 36 next month and desperate to have a family, but obviously nowhere near well enough to do that. but after 17 months and really no change other than to feel worse at times, i am confused as to what to do next. matia keeps saying that sometimes these things take a really long time. but i don't get it. i don't want to just live this regimented life for years on end with no progress just because i'm holding out hope that this treatment will work for me. i noticed that some of you have been with matia for years - some close to 6 or more years - but you still seem to have quite a bit of symptoms. what is it that keeps you going? how do you know you are on the right track? did you have any breakthroughs along the road? i just want to understand what keeps you going if you feel so badly all the time. i know these are hard questions to ask and even harder questions to answer, but i'm really struggling within myself to keep going and i can't help but wonder if i'm just fooling myself into believing this treatment will work for me because i have nothing else. i'm so scared and so angry. if it's not this, then what is it? i've been doing physical therapy for years and know that if it was just my nerve being turned on, it would have gotten better over time. there is something more going on, but if matia's theory is correct, i should have noticed a change by now. instead it's just the usual ups and downs. i don't know what answers i'm hoping for from you. i just need something. anything.
Hi lovely soul,I can only
Hi lovely soul,I can only speak from my own experience....I was very sick 14 years ago....way before Matia had all this knowledge...wisdom....expertise......it took a few gruelllllling years......i was on blended foods for one year....couldn't digest anything....and she just told me to hang in there.....after about 16 months...i was still sufffffffffering immensely...and she continued to tell me that i would get well......and guess what.....I did.....i was fantasticcccccccccc for 10 years...then...all hell broke loose because i didn't take care of myself like i should have.....i am now dealing with this horrrific nightmare again.......and as miserable as I am...with pain...i knowwwwwww........she will continue to fight this with me...until my body is in balance.....Please feel free to contact me on my email address if you need to cry...scream....ask me anything.....you will get well........you will see the light...i promise.......from my heart to yours....hugs and kisssssssses
Keren your post is very
Keren your post is very encouraging to me as I feel the same way at times. I've been in treatment a bit longer and expected to be well by now. Sometimes I think my ups and downs are the same as before treatment . While I'm not worried about starting a family anytime soon, Ifeel like I'm missing out on my 20s. I'm starting to realize that sometimes things take longer and I am apparently a tough case. Regarding the previous post, I was just recently on the SF and goldenseal for 4 months before having any die-off! But a week later I felt great. I started jogging again and doing things I loved that I havent done in a while because of IC. While it didnt last, the hope of having more good days keeps me going, and being that I've tried just about everything else before, it doesnt leave me with alot of options if I quit! It seems like alot of people get better around the 2 year mark, and I'd hate to quit if I'm close to being well, especially if I'm finally having die-off after all this time...I think somethings finally happening. At least with this treatment its healthy and Matia is kind and her theories make the most sense to me, but I ask the same questions at times, and agree its hard to understand when you dont feel good.
Tawni....it's sooooo common to feel this way..
my second time around...it's been threeeeeeeeeeeee years......and a long painful three years...and I have to admit...that because of my intense pain in my belly...i too, even after seeing the light the first time....have these crazzzzzzzy thoughts and doubts......maybe this time will be different...blah blah blah......and when i cry to Matia...she just loooks at me...and says..."keren....you will be FINE" and i snap out of this state of mind....and trust in her ability as a brillllllllllliant doctor to help me heal..........if she couldn't help us...she would refer us to someone that could.....she will get each and every one of us...out of this darknesssssss....the body has an amazzzzzing ability to heal itself.....but wowwwwww.....is it the slowwwwest most ridiculous process ever......I am here for all of us.....to share my story....and to encourage us to stay focused on health and healing.......and believe that this $%)* will end...big fat hugs and kisssssssssssses
aboros5
My heart goes out to you... I know it's so hard to believe you'll get better until you start seeing improvements, and you're not looking for even major things it sounds like, you just want some small positive changes to hang in there. Everything you say is so understandable, the fear, the anger, who wouldn't be... It's such an investment in money and time and your spirit.
In what you said though it brought up a few questions...
- Are you sure the physical therapy isn't making things worse or delaying your wellness? I ask b/c I've been going thru hell the last 2 months w/ what I thought was knee injury, now apparently inflammation/die-off though hard to believe b/c I can barely walk or stand or sit, have been basically suddenly disabled. Anyway, orthopedists at the time prescribed physical therapy, and after a while it seemed it was aggravating things... I asked both Matia & Boaz and they said if it's inflammation going on (which is what they believe) then any manipulation of that area just aggravates it, doesn't let it heal. And even if the area - structurally - does indeed need strengthening, that that must wait until the tissue integrity is good enough and inflammation is down enough so you can handle it. I'm wondering if the same could be true for you.
- Despite the VV not improving, are there other definite improvements (in other conditions or even in lesser things like skin/hair) that can show you that cleansing is indeed going on, that something is happening in there? Everyone's so different. I've read several people who had all these other minor changes first for a long time but no improvement in bladder, and then finally things turned. I know, the timeframe is unreal, that it takes so long for some people. Or even look at me, my bladder finally got much better after 1.5 years, but then I'm hit w/ major disabling inflammation in half my body... maybe you're taking longer but then when it's done it'll be done.
- Are you taking into account the meds you're on? I know, I know you need to be on them and totally respect that, and sounded like it was the best choice, but that could maybe be affecting things?
hearing all of your
hearing all of your experiences is helpful. it's just tough to reconcile them with my own experiences. i know everyone is different, but i really don't feel any improvement - barely even any temporary improvement. on my call with matia this week, she said she feels that there is some progress being made even though i don't feel it. she was saying that i seem less reactive to things than in the past. on some level i suppose that's true. but a big part of that is that i am on medication - which has quite literally been a Godsend. that and the physical therapy remain the only two things that provide any relief - which is part of what continues to fuel my doubts. those have always been the only two things that have ever helped.thanks lisa for trying to think of some reasons for my lack of imporvement. unfortunately, as i mentioned above, it doesn't seem like those factors are playing into any of the negative symptoms. as far as pt, i only go once every 4 - 6 weeks and i don't do work on myself in between anymore. after the pt sessions, i always feel some relief, it is short lived, but i at least know that that is for sure not making me worse. and as for the cymbalta, that has been hugely helpful - even matia has commented on how helpful it's been in allowing her to treat me. it definitely takes the edge off and she doesn't see it as interfering with anything. so basically, there really doesn't seem to be an answer. the only small improvement has been my gastro issues (used to have diarrhea a lot), but that cleared up literally one week after i started the diet and has stayed that way. that was even before i started seeing matia. the only other minor changes i've noticed are less vv trigger points (although i didn't have many anyway when i started with matia) and the super mild and intermittent bladder symptoms i had started having just before i met matia went away. but that too was within the first month or so of treatment. i'm happy for those changes of course, but i went to matia because of my vv pain and nothing has addressed the actual skin irritation and nerve pain. it still goes up and down as it will - sometimes worse related to treatment and no relation to food. even when i've actually found out that there was wine in the cooked food i've eaten, i haven't flared. there just doesn't seem to be a connection, but matia keeps insisting that there is. i just don't get it.according to my pt, it's just my nerves having been turned on and connective tissue changes from the initial infections. she says the reason it hasn't gone away is because i am stressed and keep thinking about it and that sends bad chemicals into my body. but matia refutes that and so do i. it's not my mind keepng it turned on. but, i do wonder, what if it is simply my nerves overfiring and in a pattern that won't turn off and not systemic at all? i sometimes think about whether i should get one of those spinal implants that blocks the pain signals. i have to do something. life is not worth it to me if this is all there is.and every time i get a tiny bit of hope from matia - like on this last call is when she thought some progress was being made because i'm less reactive to the tonics. well, right after that, she upped my siberan (tonic) and i'm noticing more sacral/vv burning right after doses. it's like every time she says one thing and i think we are heading down a path that makes sense, my body proves her wrong. really, the only positive signs i've EVER had were when i was on vitamin D, which seemed to help some but then stopped, and the fact that my body got used to the sf. that's it. 17 months of treatment and that's all i have.honestly, the only reason i keep going is because i can't go back to more experimentation on my body, scouring the internet and trying any random thing that people say helps, going to more doctors, being poked, prodded, humiliated and treated like a lab rat waiting for the next horrible reaction. i just can't. so i keep convincing myself that matia will help me, that this has to be the solution because so many people with random symptoms get better. but every connection you guys talk about - your skin breakouts and rashes, your constipation, your die off, your reactivity to sugar/alcohol and/or chemicals and smells - none of it fits with my experience.i want it to so so badly. but it doesn't.i've pointed all these things out to her a million times and she keeps telling me she really thinks i am going to start feeling better soon. she insists it has to do with a bacterial imbalance in my gut. i can't stop seeing her, but i can't keep going endlessly for no reason. i'm lost. i don't expect you to respond with answers because i know you can't. i'm just venting here versus in my own head - which is far too full right now for any more of this.
Your definitely not alone
This is the first time I have posted on this site but have been a patient of Matia's for just over a year now. I understand a lot of what you are feeling especially the second guessing myself and wonder if this is even working. From what I read on here it seems almost everyone starts seeing some relief I have not seen any and am still on the same food list as when I started which is very discouraging. When hitting the year mark I thought I would see some improvement. I did'nt expect to be completely better but thought for sure there would be some improvement. Urgency and Frequency are terrible for me I could barely function day to day. Some days I have left sided pelvic pain that is unbearable. I am at my wits end but would'nt have anywhere else to turn to get help. I am 34 yrs old as well and feel that time is running out to have a baby I can't even have sex right now so getting pregnant is out of the question. This illness has turned my life upside down as well as my families lives. I feel like maybe something else different from everyone else on here has caused my ic and maybe Matia can not help me. I feel useless and hopeless. I am on 12 SF/3 GS/3 Siberian Eleuthero/3 Ear Formula/3Mega Doph and I don't feel any better from the day I started. I have not experienced any die-off. Matia says some people don't have any die-off. Before I started this program I did not have VV but a month later I got it and it's been terrible ever since. I don't understand how my body just seemed to break. The pregnancy thing is a big one for me....I dream of babies almost every night. I just wanted to let you know your not alone. I don't know where else to turn
Irene,thank you for sharing
Irene,thank you for sharing your experience. i am so deeply sorry you are struggling so much. i am still in a really awful place emotionally right now, so probably not the best person to offer you comfort. but i continue to think about all the people who took years to get better - and ultimately they all did get better. no other docs can explain what's wrong with me and matia's theory seems to fit on so many levels that i have to force myself to believe it will start working on my pain. it does scare me beyond words that there are also so many pieces that don't fit - but as matia has explained to all of us - everyone's case looks different. i have had die off, but not to the degree that many others have and matia has said to me as well that some people have none and they STILL get better. something that one of the women on here said to me once that really resonated was that this process is like filling a pool one drop of water at a time. it's so slow that sometimes it feels like no progress is being made, but it is - its just hard to see along the way. the process is just slower than we can really fathom at this point. i'm sorry i can't offer more peace to you right now but i am thinking of you and hoping that we both start feeling well very soon.
aboros & irene
Yes, I'm glad aboros wrote that b/c that's what I was going to write next... think about those people who had NO relief and NO progress for a long time then finally turned the corner. I've talked to a few patients like that, one patient was so bad off for a couple years, bedridden and beyond depressed, and Matia got her well. Try to seek out these stories and ask Matia to connect you w/ others who took a long time. Also consider kinda like you said we never know why each body is so different -- like if you took way less meds than another person, have far less contributory factors, yet you're not seeing progress and they're doing well, how can that be? -- and yet there's so much we don't know (and Matia maybe even doesn't know, as brilliant as she is) with regard to "why." I'm learning a lot of this health/body stuff doesn't make sense, or at least not to me... case in point my bladder finally got so good after 1.5 years, then after a minor injury/weakness in my knee, I became essentially disabled for over a month now, where it became a severe inflammatory response that spread to the other knee then all of my legs to where I can barely stand, cannot do anything for myself, can't drive, stuck on bottom floor of my condo, mostly lying on my back, trying to find people to cook for me and drive me to appts... Matia is working on it best she can w/ herbs while trying to balance my bladder but says this is extreme and doesn't know why my body would get so out of control when my bladder was so good. My whole life has stopped. I am horribly depressed and anxious and really struggling mentally but trust Matia and know there is hope and she says I will be fine. I'm not sharing this as a 'poor me' but b/c I sympathize w/ your frustration and confusion and sadness and I do believe you can recover and get your life back, it's just these things happen for each of us differently and in crazy ways.
keep pushing
Hey! I just wanted to say- that after 2 years of VERY vERY hard work and after suffering through a FULL 1.5 years of some of the worse pain and inflammtion of my most sacred and sensitive area- pelvis/vagina/vulva/ of my life I can say I have turned the corner. I had breif moments of respite off and on for the last 4 months or so but nothing beyond a few days at a time and it was still more or less just kind of turning the dial down on the pain.I am starting to register that my pain was much higher than I was realizing - its like the hindsight of the absence of it lets me see. It's the negative space- the calm I am feeling in these highly sensitive areas that is letting me know that I am finally getting some control over the pain. I had a scary 5 days out of the blue a about 2 weeks ago that involved a mega jump in my pain in bladder/VV l( like to levels I haven't felt in a VERY long time) along with HEADACHES? never had those to any extent before but anything can happen. I don't think my dieoff is very severe- I occasionally have "flu like symptoms" where I feel REALLY bad all over - joint/fibro pain etc but in generally I think if I have die off its pretty steady and unnoticable. I don't really have a good concept of what nromal strong healthy really feels like - I've been out of wack since 1998ish. I think I am still in tender tentative stages of "better" like it would be easy for me to backtrack if I didn't take the utmost care. I estimate I'm in midstages of treatment still- for even though my pain is much better I still feel kind of on the weak side. Looking back a year ago I was really freaked out- my VV was intensifiying as my bladder was feeling better off and on. Its hard to continue on without encouraging signs of progress and its super hard as well to go back and forth with feeling a littl ebit better and then feel badly again. That was almost worse- I had my hopes dashed again and again and again that it would be the last time the pain levels went up. I lost my tolerence for the pain repeatedly. It was especially hard on my marriage/sex life. Happy to report I can have sex again. Osrry to be graphic but its like the tissue is healing inside out- I still have some sensation in my vulva/labia area - like the nerves in there get the hot dry sandpaper feeling if sustained pressure is applied for a long time- whereas they used to burn if I did nothing at all. It really seemed like I was not moving forward with the VV for a long time. I think improvement can be so gradual it is unclear and unnoticed and for what ever reason- I have no idea why- at this 2 year mark things jumped DOWN in a dramatic way. I was on SF for a long time. this mostly consistent ( still varies in intensity) jump in"progress" has been in effect for about 4 weeks now. It could spontaneously just as easily as it came- go away again. but I am encouraged that we are moving forward and that my body has the ability to feel this good and calm. I thought my nerves in my pelvis were going to stay turned on - that the pain had been locked into that tissue/nerve network memory for good. But maybe I was just afraid and was trying to prepare myself for the worst. but the deal is- the body can unlearn. pain is not an endless austerity after all. Something shifted after a long time. I didn't even have to beleive it would for it to do so. the good things- the formulas applied dutifully and the diet and the alchemy of those things balencing my body as it needs it is affecting changes in a deep very big way. I've said it before- with this program cause and effect are very strict. I don't think you can do this much good things for your body and not have a positive effect on what is out of balence. 1.5-2 years of VV/bladder/GI tract pain is not long compared to what others have dealt with but it seemed to be a LIFETIME to me. EVERY second was noted and counted . It is relentless. but I hope that it serves as an example of possibility that progress can happen and will happen. I am grateful for your audience and courage and wish your healing be thorough and swift. yours truly- Mary
Aboros5 I've sent you a message. I hope that's ok
Hi Katie,
Hi Katie,
Not sure that you knnow that you picked up a post that is over 5 years old - I'm not certain that this person is still active on this site - I don't remember seeing anything from her. Just wanted to let you know - just in case you didn't hear back.
Take Care,
Denise
Hi Katie,
Hi Katie,
Not sure that you knnow that you picked up a post that is over 5 years old - I'm not certain that this person is still active on this site - I don't remember seeing anything from her. Just wanted to let you know - just in case you didn't hear back.
Take Care,
Denise
Thanks Denise
Thanks Denise
I wonder if she left treatment. We have pretty much the same problem :/ with our backs. It's all so confusing!
Katie
Hi Katie,
Hi Katie,
Sorry to hear of the back pain. If you look above you'll see HoneyBee listed - think she had the same problem and I know that she's still on this site.
Take Care,
Denise