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Okay. I really need some good thoughts here guys. I’m really, really struggling. Ever since coming off my prescription meds (armour thyroid and effexor), I have really been in a horrid tailspin of both physical and emotional pain. I expected some of this, but not still after 1.5 months of being clean. By this point, the drugs are well out of my system, so I just don’t get it. I am quite literally a mess. It’s been clear that this treatment is not an easy road for me - I am 13 months in and really have yet to get to a point where I’ve had any significant sustained relief of my vulvodynia. I had some other very small improvements along the way that have helped me to keep going. but now, even those gains are out the window. I feel like I’ve fallen off a cliff. MY vv pain is unrelenting – especially when I’m sitting down , my glutes/legs (this crease area) are burning like crazy, and I missed my period for the first time in my life this month. Could missing my period be stress? Maybe, but highly doubtful. stress is my middle name and never, in all the years of dealing with this pain problem, have I ever missed a period. i feel like my body is in compelte upheavel and I’m sure that the hormone issue is adding fuel to the fire because hormones definitely affect my pain big time. I just don’t know. nothing makes sense to me anymore. i haven't added any new foods, i'm still on a super strict diet. i just don't understand what's happening to me. I am losing hope and faith everyday. Matia tells me to hang in there and I have talked to other patients who have told me about how bad off they were at the year marker and still got well. But, I keep finding things about my case that are different which makes me feel like I am that one black sheep who just can’t get well. I didn’t take a lot of antibiotics (for me there was a lot of Tylenol/advil and pepcid), my vv seems to constantly get worse on things that seem to make everyone else’s vv calmer (rehmanniae), and candida is not my main issue (matia thinks it is more bacteria). I feel so utterly alone that words truly can’t explain it. has anyone out there gone so far south after going off western meds – particularly anti-depressants – and continued to feel bad nearly 2 months after going off of them? Were you able to get better? sorry a million times over for such a pathetically desperate post.
Hope
I hope others respond with Hope for you. I am so new, I can't say..but I did tell you before when I went off Effexor it took a very long time for my to feel better emotionally, because my brain had to start making seratonin on its own, and that takes a while to build up in your system. I did get well though, (emotionally). I am sorry you are in such a struggle. I have heard from others that when there is such a struggle, usually something good at the end of it all. Praying for your strength tonight.
aboros5
Don't be sorry for yr post - this is a safe place to get support. I can't tell u how much I relied on this site in my early days of treatment. Please don't lose hope and faith - they are vital in this battle with IC. You are NOT the one person who won't get well - I believe EVERYONE who can stay the course will get well again. As we all know, we need endless patience to get thru bad days. It has taken me a long time to be at the point where I can say I feel I'm getting my life back - it was about a year in treatment for me. I had been on her List 1 diet for 3 months be4 my appt and before that I was on a 'clean' diet with another practitioner for 3 months so that's 18 months altogether of good diet and 12 months of herbs be4 I felt I had turned the corner.1.5 months off anti-depressants isn't very long - did u come off them gradually or was it cold turkey? It sounds like ur going thru cold turkey now - experiencing withdrawal symptoms. How long had u been taking them? Effexor is one of the hardest drugs to come off, just google 'effexor withdrawal'.HugsJane
As a pharmacist I can tell
As a pharmacist I can tell you that the fact that you missed your period is completely normal after discontinuing thyroid medication and an antidepressant. It could happen next month, a month after, or not at all. You body was used to functioning with one chemical composition and now has to adjust to the other. Please, don't try to put too much into it, and definitely don't worry, you will readjust and you might even have longer or shorter cycle. A month an a half is really a very short time! I KNOW, when you suffer, every minute counts, but the tricky part here is that if you were continuing Effexor, it would definitely hinder your treatment, but now, without it, you are not healthy enough just yet to sustain yourself psychologically without it. I've suffered with depression my whole life, sometimes, I am thinking it was from early childhood, and only NOW, after a few years with Matia, I am completely panic attack and depression free. I am not saying it will take years for you, no, no, no! it will GRADUALLY get better and better till you are surprised to realize that it is gone!I KNOW how you feel, being a "black sheep", I am sure there are a lot of us out there feeling the same way. In my case issues are also more bacterial than yeast, I've never had a classic die off, and a year after treatment, even though my bladder felt much better, I all of a sudden developed nausea that stayed with me for almost a year, severe nausea, that incapacitated me, stayed with me 24/7, forced me to quit my job, I couldn't get out of bed, my husband and my Mom were spoon feeding me. And still a year after those events I gained my health back, easily got pregnant at 37, and had a healthy baby. All thanks to Matia!!!The reason why I am in treatment the second time is because I was stupid enough to have some of the same bad eating habits back, ate lots of sushi, never balanced my meals, wasn't properly taking care of myself, and only now I am really LEARNING.
Sorry hun!
Sorry to hear that you are having a hard time. I have experienced some crazy emotional ups and downs during treatment without weaning from those types of drugs so I can only imagine the challenges you must be facing. Really hope you find some type of relief soonJess
There is also a thing called
There is also a thing called emotional die off and I have had my fair share. Stress can cause numerous symptoms and I feel it's holding me back big time. I have WAY too much stress on my plate and what do i do but stress on myself to lessen my plate so that I can stop stressing. I am EXTREAMLY depressed right now I am going on 17 months and I am so sick of this burning pain in my urethra. I do have some VV issues still too. I practicly lived on antibotics but I don't feel like it really matters what drugs they were it's all causing imbalances in the intestines no matter what your on. I am starting on the raw milk tomorrow and I am hopping it helps me with some of this gut flora rebuilding. I am sick of this too and wonder when it will end as I have been sick most of my life. I wish I hadn't left Matia the first time I am sure I would be well by now. I almost don't even count the first time in treatment. I started this thing back in 2001 and left sometime in 2004 I think I am not sure because I had a seizure. All I know is now it's going on 2010 and that is 9 whole yrs of IC dignosed and I had symptoms 2 yrs before they even dignosed me it took me a yr to get to Matia. I am sick of being sick. My first UTI was at 2 yrs old when they started me on those antibotics and what keeps me going was prior to my seizure I did get pain free for a mear 3 months and I never really had the pain just ease off one day I just wolk up and it was gone. I just keep trying to remind myself that I got there once and i can get there again. It is a constant battle with my head I get really depressed and feel sorry for myself too so I know exactly how your feeling. It's also normal to question thigns this time of yr kind of reflection of the yr. Try to find some thigns that have improved to keep you going. Hang in there and be well
(((hugs)))
thanks for your candid
thanks for your candid responses. it's always hard to hear other peoples struggles because i know how awful it is and it makes me sad to envision anyone suffering like that. but, there is such comfort in knowing you are not alone. i have heard effexor is a bad one as far as withdrawal. i've been on it for 10 years for the pain so i suppose there is certainly truth to the idea that my body is probably used to it on some level. prior to this 10 year spurt, i actually had been on it for a few years in my early 20s and got off it with no withdrawal, but obviously this time i had been on it for way longer. after reading your responses, i went back to my treatment journal to see exactly when i started weaning and how long i have officially been drug free. it looks like it's actually less than 1.5 months. it's been so hard, i guess it felt like longer. i've been off the armour for about 2 months, but as of yesterday, it will be 1 month since i've been completely off the effexor. prior to that, i weaned down for 27 days. i did it by starting to take 1 pill every other day, then every 2 days, and so on. then i just went off it. i felt like that was super slow and a month later it's hard to fathom that i could still be feeling the effects. but, what do i know?natasha - thanks for sharing your expertise again. this whole missing a period thing has been really really scary for me. and like i said, i also feel like it is messing with my pain - usually this level of pain comes around ovulation but now it feels like everyday, so just want my hormones to get back in balance. i never in a million years imagined this could happen from going off the meds. also, i'm so happy to hear someone else whose issues are mainly bacteria rather than yeast. i talked to one other person who had said the same, but you don't hear it that often. i know it can take longer to "clean house" with candida, but in the back of my mind, i kept thinking "bacteria shouldn't take this long" and admittedly, that is still a key driver of my doubts.ultimately, i know i need to change my concept of time, i know i need to allow that this could be working even though i don't feel any change (other than getting worse) in my primary symptom. i just want to understand. i just want it all to make sense. if i could just get a break in my vv, the boost to my psyche would be immeasurable. in the meantime, thanks to each of you for help.
I wrote you by email...
But to paraphrase, there seems to be every reason and then some for why you're going through this tough time now. A lot of times when it's us suffering, b/c it's our body and we're experiencing physical pain, we get caught in the feeling that we won't get better, but that doesn't match up with the actual reality ... where evidence shows us that (1) many others in similar (and worse) situations got better, (2) going off strong neurochemical & hormonal meds that ran bsaically your entire system for years and years takes more than a few months to readjust, rebalance nevermind start running on their own when you're already in a weakened state of dis-ease, and (3) that all this could throw you into more pain, but that would indicate temporary pain & problems, not permanent issues. This is probably just saying/summarizing what the others have already said, but if it's helpful, here it is.
...And I forgot to tell you
...And I forgot to tell you that rehmanniah you are refering to, did't help me either, it actually always makes me feel worse.Also, from what I understand, bacteria can take a VERY long time to get killed, at least mine does, it seems to me at times that it becomes resistant to everything we try, but after several herb adjustments Matia usually "catches" it yet again. When I was in treatment for the first time these bacterial issues were so bad that I was on goldenseal for a year, and this time around goldenseal made me feel worse.And even though I am a total control freak, I stopped trying to find any sense in it a long time ago! :)
amboros5
I just thought I'd mention that I have both bacterial and yeast issues. Matia told me that it could take a while to completely deal with the bacterial issue because in my case my body had "stuffed" the infection into my joints. I know exactly when I got the bacterial infection, I didn't take antibiotics for it because I thought my body should be able to handle it. Anyway this infection resurfaced 13 years later and I found myself dealing with IC, It is so hard to have faith in the whole process when you are in pain, pain messes with your mind and your moods so terribly. I had vv so badly 5 years ago, I was in agony. I haven't had that in at least 3 years now. As you progress in treatment your symptoms will become less and less noticeable. I stayed with Matia because she offered me hope that I would get better, but in the beginning it was hard because I was in pain and very depressed. Over time I have slowly gotten better and am now at a point where I truly have my life back again. Carol
got my period
just wanted to report that i finally got my period. two weeks late, but i got it. so, that's something to be grateful for.@natasha - the rehmannia thing is so frustrating. i've heard from so many people how soothing it is so everytime we add it back in, i keep hoping. right now i'm actually on another herb formula that contains rehmannia (zhi bai di huang wan) and surprisingly enough it hasn't made me worse, but doesn't seem to be helping much either (at least not in a way that i can see at this point). so, she just added back in rehmannia tea which scares the heck out of me. it goes against every instinct to take things that make you worse, but i know that's just what we have to do sometimes in this process. i have had instances where things i tried initially were fine then later made me worse and vice versa (actually, i too have had this experience with goldenseale), so i know i can't judge in advance. but, as i've posted before, when it comes to adding back in rehmannia or SF, i get completely freaked out each time. well, i just took it, so guess we shall see...@carole-i so pray that i too can be rid of my vulvar pain in two years. the fact that you have come so far is amazing. you and all the others who come back after getting their lives back and continue to post are quite literally a Godsend to those of us who are getting our a--es kicked by this process. i could say thank you a million times over and it would never be enough...
aboros
i am not far into treatment but i have had IC for 15 yrs so i understand how u feel...i went off my zoloft cold turkey but i have yet to kick my klonipin which is helpin me sleep....and also rippin apart my bladder...ugh!!i only get anxiety at nite when i cant sleep...its scary and hard...dnt beat urself up just realize u will get better in time...i am having some success with siberian ginseng..it keeps me clear headed.....the RP didnt help me much either... good luck and sending u positive thoughts...
feeling worse.
Aboros I can relate to you not wanting to take anything that will make you worse. I have decided not to take anything that makes me worse. I am now back to work full time and have to function. There has to be an even balance to healing and not having to feel worse to get better. It has been quite a while since I have been on anything that I can say makes me feel better. I either feel worse right away or after a period of time. I seem to be so sensitive to many things ie: probiotics, SF722, fish oil, vit D etc... I have my appointment tomorrow and hope to get something that will help my stomache issues and not make bladder worse. Hard to find the balance. I don't want to feel worse because it just gets me so down moodwise which is also not god for us.
nicole - question?
just re-reading this thread and want to be sure i interpreted your post correctly... back during your first round with matia, did you have bad pain with no improvement for a few years and then one day it was just gone? i know the majority of people talk about the gradual easing of pain symptoms over time, but that hasn't been the case with me, so wondering if what you are saying is that it is possible for the cumulative effect of the treatment to just kick in after no improvement for so long (a.k.a years)? thanks...