looking for hope... got any to spare?

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This is a rough week. I have been on the diet for about 5-6weeks and in treatment with Matia for just shy of a month... Last week, I felt like things were actually going fairly well... the nerve issues in my legs/butt/sacral area were not awful - i was able to sit all day through work - even work late a few days, then lay down and watch tv without feeling too crappy. it was a nice change of pace. I've always had ups and downs with my issues, so i have had weeks where i had almost no real problem in the past, but the two months before i saw Matia, i had spiralled pretty bad for some unknown reason. So, i hadn't been having many good days with respect to those issues much at all. As such, having a decent spell made me start to feel a bit of hope. But, what had been nagging me even during this "good spell" is that my vulvar sensitivities didn't seem as impacted as my legs. As usual, the one thing that I am desperate to get rid of is the one that doesn't feel better. Well, we decided to add another herb to help target the vulvodynia more... unfortunately, within two days of taking the full dose, i woke up with my vulvodynia flared and my eyes burning. good times. so Matia suggested I just go off it. Good choice. I started to feel a bit better by that night, then had PT the following morning and actually felt pretty alright (although sore from PT) that day. So, again, hope started to creep in. Sadly... by that night my sacral nerves were awake again... in fact, they kept me awake! And my vulvodynia picked up again the following morning  - feels totally turned on and crappy now. why? makes no sense... as usual.

I know that ups and downs are par for the course and i know i am still early in treatment. but, like many of you have said... the downs feel particularly awful once you have started to let hope back in. i worry that maybe i am not on the right track, that maybe the treatment isn't working for me and those "good" days were just part of my usual ebb and flow... that like so many other treatments i've tried, the one thing that will be resistant is the problem I want most to go away - the vulvodynia.

What makes it all even worse is that I am 34 and my husband and I are ready (more than ready) to start our family. I had held off for a number of years, hoping PT would cure me (as it had before) and I would be able to have and enjoy kids without suffering. then, when that didn't happen, i decided to put every effort into this treatment - and agreed to hold off for a year in trying to have kids... more waiting. it just makes the bad days feel that much worse because i feel like there is a ticking clock in my ear... it really hit me hard this week, when my sister called to say she is pregnant again (her third)...of course i am happy for her... but how can i not feel envious? sad? inadequate?

life doesn't always turn out as we may have hoped. i get that. i'm not a whiner or a cry baby. but, it is really difficult to be in this unknown purgatory... i am fine to wait a year if it means i can have kids in good health, but, i can't help but worry that i will wait a year, be 35, and still be no better than i am now. i'm truly scared... and it's a kind of fear that i honestly don't think anyone but those on this board can understand.

i guess that's why i'm posting here rather than calling someone to vent.

i hate flares...

thanks for lending an ear...
 

Kriste's picture
Kriste

I am sorry that you are having a difficult time and confused about whether this is the right treatment for you and only time will tell.  One thing that I do believe is that if Matia felt that she could not help you I think she would tell you and not waist your time.  I know that she can't make any guarantees but I don't think she would waist your time or any of our time.  It would surely be nice if we knew that if we followed a certain path we could see the end result and then we would know if we are on the right track.  I have been in treatment since May of this year and I too have felt the way you do but as time goes on and I have little improvements I gain more and more faith.  I am so proud of the changes I have made and enjoy hearing compliments from others about how hard I am working.  In the beginning I did have increases in some symptoms in the bladder but now months later I look back and I for sure have improved not to a point that I am totally comfortable with but as long as I continue to have improvements I know that I am on the right path.  I don't know what you have tried before but I hope that you will find this to be a supportive environment and it will help you to stick to the program and I am sure that you too like others on this site will have a beautiful baby.  I don't know if you were part of the Saturday support group but there was someone on there that had tried to get pregnant and she finally did.  Hearing from those people will I am sure be helpful for you.  I wish you all the best.

aboros5's picture
aboros5

Hi Kriste,Thanks for your response. It's always awesome to hear people say they are seeing improvements. Watching the arc of people's posts - from the bad days to the improvement posts - is amazing, reassuring, hopeful...i could go on and on. I have every confidence in Matia, the hard part is that i just don't have confidence in my body. it's betrayed me so many times, it's hard to believe in it anymore.i hope you are right and that someday i will be able to have healthy kids AND be a healthy, painfree and even happy mother. dare to dream...this site is such a wonderful resource. i actually stay far away from support groups and things like that because they make me so sad and scared. this is the first time in all these years i have EVER posted to a site and communicated with other people directly regarding my health issues (i mean people other than doctors...). the fact that i feel comfortable to do that and even to read the posts on this forum (i usually steer clear of even reading health forums online) speaks volumes about the environment Matia and all of you have created on here.thank you so so much. 

Honeybee's picture
Honeybee

One thing I have begun to notice about this process is that my  body has become incredibly senstive-  I am very aware  of the minute changes transpriring because I am always searching for clues of changes/progress. This awareness has been crucial to my getting better even though the sensitivity is hard to deal with as well when it hurts. But the awareness of the changes that have taken place with the treatment  give me hope and trust that I am moving forward.   My syntomns have improved  and shifted which means that my body is getting stronger after 6 months of treatment but I still have times when I feel I am again suffering with some pain and discomfort after a few days or weeks of feeling pretty good.  I have times where my bladder feels better and my vuvladynia is worse and vice versa. It is soooo hard and so disheartening to deal with. on the other hand I can't wallow in a  despairing feeling like I used to and  say to myself out of wanting to prepare for this  endless  painful austerity life state of- "nothing is changing- I'm never going to get better" at this point I cannot deny that changes and prgoress have happened after I was absolutely sure for the first 3 months that nothing was ever going to change.   I would read success stories and go- what if I'm different and don't get better? "my story isn't exactly like thiers so I won't get better." But then I do get better and so will you.Why did I think I was special - an exception to the rule? I think it is simply fear. maybe deep down I didn't feel worthy of getting better?   or I found it hard to beleive after being told IC is incurable by"medical experts" that I could be well again? like I needed permission?   Pain has a way of tramautizing/twisting/limiting our minds and therefore our ability to heal.   You want to escape  from the pain which is so constant and relentless but you can't. so we tell ourselves - almost to survive- if we cantt feel better permanently then its like okay maybe its more predictable to feel pain/sickness as a constant sentence. at least we know for sure that its here to stay. and maybe my body internalized that- hey-I'm going to feel this way forever because then I don't have to get my hopes dashed again and again. but my IC/Vulvadynia for me has been cyclical. my body still struggled to balence itself when I had "good cycles".  Its the cycles that make me feel most  anxious and crazy. but all that evens out. gets calmer.the spaces between flares get bigger. the "good days" become more frequent. that has been my experience so far. I guess I'm still in a the stage of  cleansing- cause I do get bad days- but they don't have the same power over me. I have experienced enough good days to know that more are coming. That gives me strenght to continue working hard.   My thoughts are that the flares I get are reactions to the probiotics/and the new stages of dieoff that the added probiotcs are bringing. sometimes its the body reacting to a medicine its not quite ready for - or it is ready for it and themicrobes or whatever are like noooooooooo we don't want to die- blaaargh! and that causes pain/discomfort or inflammation is still in the body and it takes time to bring that down. or hormones are causing the flares. - we just have to endure it best we can or back off until we are ready to try again. I've had to half medications/herbs and start over until it was tolerated better.  I have been struggling with my health for 10 years or more so I am ready to be better like NOW but that is not realistic. It took me years and years of ignorant choices to get here and now I am slowly untangling the mess. Signs that you are on the right track will emerge with time- because doing good things for your body like what we are doing has to produce a postiive result. It has to. Eventually we get better. even people who have been in treatment with Matia for years are getting better and they too will be well and balenced in time.   that kind of impact supports in assiting the body to rebalence itself.  When? Its different for everyone but you won't be feeling like you are now- all the time- the whole ride to wellness. Relax as much as you can -You are still early in treatment !  Matia has had to change formulas for me many times its kind of expected because our situation on our body can change rapidly and that communication with her is letting her know how to proceed. It occured to me the other day that the different sensations/flares while uncomofortable are really telling the story/painting a picture of the unique case of my IC for Matia so I try to note everything. write down your pains- descibe them. this helped me feel more incontrol of my body and helped me see week to week that it was getting better. these descriptions seem to give her cues as to what is happening and what needs to be done next as well as give  education /research/diverity on the sytomns possible for other patients similiar to us. I will tell her about something that is happening to me thinkign it is werid or not important and she will say -oh yeah I have heard of that happening- thanks for telling me.  My vuvladynia is not as intense as it once was-it is better but I  also notice my tolerence for pain has gone down. that is difficult. my pain used to be like an 8 and now when its uncomfortble it's a 5 - I can tell the pain is at a lower level but my threshold is lower too- does that make sense? I think in a few months it will be lower and then in few months more lower until the pain is not there anymore. Our systems are dealing with soo many toxins at one time- so patience is just necessary in draining them out. Maybe our bodies work on some things in pieces until they can handle more which is why somtimes one issue or another is highlighted back and forth?  As your body is rebalenced /strengthened including your repoductive system then a healthy vibrant pregnancy can happen. It is hard to wait but it will be worth it! May your feel better really soon. peace be with you. Hope this helps!Mary

aboros5's picture
aboros5

Hi Mary,Thank you so much for your response. You always put so much thought into your feedback (i've read your other posts!) which is so unbelievably generous of you!I do know that many of you have gone through the doubts and "is this really working?" phases and it's nice to have that reiterated so i don't feel like i'm the odd (wo)man out. even in talking to Matia, she emphasized that those doubts probably will only truly be alleviated when i start to see results. and, i actually felt i was seeing some, but not enough to keep me from getting shaken by a really bad flare up - and this one feels like a doozy :( once i get more confidence and see some definitive results - especially in my vulvar issues - i know my heart won't be so broken by having bad days. the worst part is just not knowing. it's funny because the flares are bad enough in and of themselves, but the fear of not knowing what is happening to your body, what it means, what the longterm impact could be; all that compounds the pain tenfold. it just sucks not to have control.i do get what you mean about your threshold for pain getting lower as you get better. i know that feeling. once you start feeling better, your body seems to forget how bad things were and how much you are capable of tolerating, so even pain that is far less seems awful. the good news is... you are getting better. the fact that you have come down to a 5 on bad days is music to my ears (and i'm sure yours too!).now, here's a question... i notice that a lot of people say that when they are not feeling good, they reach out to matia and she makes changes to dosages, supplements, etc. but i also know that flares are par for the course throughout the beginning of this treatment (and throughout the duration of this problem for me). i do NOT want to cry wolf everytime i don't feel good, so trying to figure out how i know when i am supposed to report a flare and when i'm supposed to just plug along and assume it will subside? at this point i have NO idea what is causing this flare. i'm a week out from my period... could be hormonal... or, it could be die off (although i haven't had that experience yet). who knows? just curious if there are tell tale signs that would indicate what i'm supposed to do.anyway, thanks again. so happy you are doing well. 

IC-Hope's picture
IC-Hope

I literally just started with Matia, and while I'm a little younger than you (almost 30), my husband & I were just going to start trying for a baby (until a massive flare made me realize that's not in my near future and I've got to lick this thing once and for all)... So I empathize completely with your comments on that, as well as echo everything else you said about the fears of treatment not working, taking forever, etc.  Esp. in light of my already spending years and sooo much $$ on other practitioners, incl. alternative ones, plus $$ on their tests, pills, etc.
Until now, I too have stayed away from forums/support groups because I didn't want to feel more scared/hopeless, but I feel I've got to reach out now, plus like you said I just don't think anyone else but an IC'er can completely understand.  I wanted to write you since we seem at similar points in life and in treatment, and I'd like to meet others who are close to where I'm at for support, comparing notes, etc.  (I'm also thinking of going to the group meeting in Jan.)

emmarenee's picture
emmarenee

I'm so glad to hear that you made it out to see Matia. I made the trip with my daughter on 10/28. We are both in treatment. Things are going well. I had a very bumpy start. We had to make some adjustments. Then I got a UTI. Matia got me through it. It seemed like my situation was changing hour to hour day to day. I took some herbs to get over the UTI and they worked great. I was terrified to take anymore antibiotics. I trusted Matia and it was the right choice. Having bad days after feeling better is hard, especially for those of us just starting out. I just keep reminding myself about all of the many success stories you find here. The begining is hard and the progress is often slow but we will get there! You are on the right path. We are all here for each other. Something that has helped me a lot is having email friendships with some of the women on this site. We have all started treatment together and are going through the same experiences. I think it is wise to get yourself well before starting to have children. I had my first child at age 38 and my second at 42. You have time. I really think that treatment with Matia will make it easier for you to conceive. Get yourself well and the babies will come. Tammy

MR203's picture
MR203

I totally understand EVERYTHING you are talking about. I am almost 35 and  have been in treatment with Matia for 3 1/2 years. I am SO MUCH BETTER thanwhen I started but I still have a little way to go before I will try for a baby. (Matia says I have just a few months maybe). But believe me, I am SO SCARED that it will be too late by the time I am ready to try. BUT I dont dwell on that too much. What I DO think about is how much better I feel and live now. I simply am amazed at how much I recovered from the day I started working with Matia. I never thought I wouldfeel as good as I feel now - so that gives me hope that everything will work out.The changes that I have made in my life (and in my husband's too) b/cof working with Matia and battling IC have made our lives so much healthier and better and happier. I hate when people say this but I think it's true forme...there was a reason I got "hit" with IC. There is no way I would have ever changed my lifestyle if not for the pain of IC. And now knowing what I know, I KNOW that I would have most certainly gotten some other horrible disease even if I hadn't gotten IC just because of the way I was eating/drinking/living. So if IC was the only way that I would change my life, so be it. I am a completely changed person in many ways that, if nothing else, will make me a far better mother than if I hadn't gotten IC. So I keep the hope and I keep going and keep trying to stay away from sugar and look forward to the future now :) Don't get too discouraged by flare ups and feeling bad after feeling good. If you follow what Matia suggests, you will eventually have more good days than bad and when you do have a bad day, you will KNOW that there are more good days ahead.We're all there with you so don't feel alone:)

aboros5's picture
aboros5

Thanks MR203. I always keep an eye out for your posts because they are such a ray of light for me - especially since vulvodynia was a major issue for you as well.I'm just trying to work through this bad patch and keep my eye on the ball. Hearing you talk about how great you feel, how your relationship with your husband has been able to go back to the good times again, is like a dream for me to even think about.As I've said before, I think the hardest part is not understanding what is happening to my body during this process.I ordered Matia's dissertation and have been reading up on bacterial imbalances online, so that is helping to give me a somewhat clearer picture about the toxins, etc. But, trying to apply what I read to what I'm experiencing isn't that easy cause my symptoms don't exactly mirror everything I read about. I guess no one is exactly the same. But, I wonder, did you always know when you were having die off? How could you tell it was that and not just a regular flare of your vulvodynia? I mean, I have more discharge and I do feel VERY irritated, but it doesn't have the appearance of a typical yeast infection - which is kind of what i assumed die off cleansing would look like.Matia increased my probiotics the other day to help get me through this and initially that seemed to help to some degree, but actually it's almost like it just shifted to another type of irritation and the intensity of it changes throughout the day. The discharge has lessened, but now i have a very raw, dry, hot feeling (although my tissues are not dry). What is that all about?!? not fun.Oddly enough, speaking of confusing symptoms... with all this going on, the one thing i'm NOT feeling is tired. usually when i get home from work, i can fall asleep INSTANTLY on the couch. and pretty much as soon as my head hits the pillow i'm out. it's like i'm just always tired - i'm sure the stress adds to that as well. But, the last few days, I'm just not tired. It will be like midnight and i'm still awake. That's another thing that makes me question whether I am having die off. Shouldn't I be exhausted?So many questions. ugh.Well, if you have any thoughts, please share. til then, thanks again for your sharing your story. I can't wait to one day read a post on here from you saying you are pregnant. I know you have a few more months to go, but I'm sure it will fly by and just think of all the fun you will have conceiving now that you are feeling so good! :)

MR203's picture
MR203

I am so glad that my story helps a little! I have to say that in the beginningof treatment I felt better IMMEDIATELY (like in 5 hours after my first dose) so  I was highly motivated.  Now, after that initial "revelation" of feeling the best I had in 2 years, I was up and down just like everyone else. I wasn'tever really sure what was going on in the beginning!! I just trusted Matia and emailed her A LOT (lol)! Oh my she was so patient with me. But most of the time when she made changes (sometimes several in a day), she got me to a place that I was comfortable enough to not jump out a window. And for me, diet is prob. the MOST important thing. To this day, if I cheat, I pay. Holidays suck in this regard. I have been off the wagon and I feel it. So if you are cheating at ALL, that could be part of any flare ups. If you aren't, I think it's just your body adjusting to this new "life" and figuring out how to heal itself. I honestly was never totally sure what was die off or flare up in the beginning. Matia would just tell me what she thought was happening and what I should do and I did it! And like I said, she eventually got me comfortable again. I would say that the fact you arent exhausted is AWESOME!!!! That's EXACTLY how I felt during that first few days I started with Matia (the "revelation period). I didnt sleep more than 4-5 hours a night - but in a good way! Like I was feeling better and I was wired! I look back and I think that it was my body FINALLY feeling like it wasn't dying, like maybe I had taken down the yeast/bacteria load enough for my body to have a break from dying...hard to explain. But exhaustion is a HUGE problem for me still sometimes so that's prob. why I think any lessening of that particular symptom is positive. One more thing, I am a SUPER TYPE A person and I analyze EVERYTHING to the point of obsession (pretty annoying to most but Matia says it's part of IC too). However, when I started working with Matia, I realized that she was a genius and that I should prob. just listen to her first and analyze later. She was the only one out of 35 docs over 10 years that had made any improvement in me so I just decided to trust her and go with it even when I felt bad. The improvements that I saw right away gave me that confidence in her. Of course I researched and asked questions and everything but I somehow "knew" that I was getting better even when I felt bad. And i just tried to focus on the ways that I felt better than before as much as I could. I know I keep saying that but that's truly what got me through the dark days. It still is!! You just gotta keep going, day after day, until you get to another good day! Then use that good day for motivation during the next bad time and so on. Take care...stay strong!

carole's picture
carole

I had my kids before I started treatment with Matia and the sad thing is that I passed along my imbalances to my kids, especially my son. I came down with full blown IC when my kids were 5 and didn't realize that a lot of what was going on with my son was related in any way to my IC. It didn't hit me until I was over 3 years into treatment and he was 8 years old. The good news is that Matia has been able to help him so much, but had I been healthy during my pregnancy neither of my kids would have to be dealing with any of this. I know it's so hard to wait, but there is a tremendous benefit to waiting until your body is more balanced.
I had terrible vulvodynia when I first started with Matia, every afternoon and evening I would be on fire and had ice packs as a constant companion. The first few months are so up and down, and it is hard to know what is a good reaction and what is a bad reaction. Throw in the fact that your hormone levels are always changing and it's hard to know what's going on. I would notice that I would often feel better soon after making a change and then within a day or 2 I would have some kind of symptom increase. Often it would take me a couple of weeks to feel balanced again. My vulvodynia still crops up here and there, but it's not that I'm on fire kind of feeling, it's just a mild discomfort and doesn't ruin my day. Yours will go away! Keeping a journal helped me so that I could look back and see that I was making progress. When I was feeling bad it was hard to remember those improvements. Conversely when I am feeling good my IC is a million miles away from my thoughts. You'll get there.
carol

toreyg's picture
toreyg

hello everyone. im new to the whole ic thing. to be honest im not even sure if i have it, but i feel theres a def possibility that this is where my pain is coming from. im 21 years old so im just really scared and worried and want to seek help asap. im considering going to see matia and would like some feedback from those of you who have had a positive experience and ur advice. if you could give me ur email address to help me out that would be wonderful and much appreciative. my email is candy_babe23@hotmail.com.