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I'm really facing such a terrible time. I've got terrible pain in my sciatic nerves and in my back. I can't lie on my back or sides and I can't sit at all. I had this problem pre treatment and fixed it with physiotherapy but now that does nothing. My physiotherapist said my pudendal nerve is inflamed for the first time since starting treatment, another thing to add to my List. Boaz said the sciatica is my back and to see a chiropractor but I did that and nothing. Both are telling me the other should sort it as she reckons it's lymph and he thinks it's my back.
I can't take anymore im just on ice all the time. I have awful arousal symptoms constantly and my family want to honour my wishes to have voluntary euthanasia at a Swiss clinic as it's been four years and they say they can't watch me suffer any longer. No one else seems to have this a long with ic. I don't know how you.ladies do it but I can't live like this anymore.
Hi there - I'm so sorry to
Hi there - I'm so sorry to hear youre struggling so much - it's so challenging and unfair to be in that much pain for so long.
As I was reading your post, two things came to mind. First, if you've only been in treatment with Boaz a short time, it's important to find the strength to be patient. This is a very slow and complicated healing process and you have to find amazing reserves of courage and tenacity to keep going, because the change is so nuanced and gradual. I've been in treatment a long time, and it has had a very zig-zaggy trajectory, but I feel it's the right approach to addressing the whole-body condition, for me. You have to make the choice that's right for you - but please give it time. Many people don't have fast results, but slowly, cumulatively, things start to shift.
The second thing that I thought of while reading your post was that if you're feeling this terrible and are considering euthanasia, it's very important to communicate that with Boaz. He may not understand the full depths of your pain and sadness, and I think as a practitioner, he'd want to have that info and may shift his treatment plan. There is always hope, even if it feels like there's not, but it's hard for others to help us if they don't fully understand how we're feeling. Maybe you have shared this with him, but I say this because I think I was guilty of not being forceful enough with my description of what was happening to me at one point with Matia, and I regret not being more "alarmist", for lack of a better term.
Please continue to reach out to us - I know it feels like you're so alone when you feel so bad, but there are others who have been there and there is strength in that connection. One breath at a time, you'll get through this - I don't mean to sound like Suzy Sunshine, I can completely relate to what you're saying. But please know that it can get better.
Hi, my name is Brittany. I
Hi, my name is Brittany. I have my first appointment with Boaz next week. I also have sciatic nerve pain. It started several years ago, and went away after a short time. It would come and go after that...usually once every other year for a couple of months. A few years ago, it got really bad, and it wouldn't go away for almost 6 months. Last summer, almost a year ago, it started again...only this time, it hasn't gone away. I stretch it, ice it, I've seen a chiropractor, and a physical therapist. Nothing is seeming to help. I am still able to function for the most part with mine, but there are some evenings that I just have to lay on ice because nothing else helps. I have my husband massage it, but it only helps while he is doing it. I also have 24/7 urgency...it's not painful, but very annoying....I feel like I have to go ALL the time. I know everyone's pain/symptoms are different, and our tolerance is also different, but I somewhat know where you're coming from. I know in my heart, this is the right path for me at this time. I am absolutely miserable, and I would give anything to feel better, as I know all of us would. There are times where I don't want to wake up to see another day, I just want all of this to be over. I feel like I don't have a quality of life anymore. Fighting this has taken everything I have to get through each day....I want to just give up, but I know I can't. I know I will get better, and so will you! I know that being patient is so hard, especially when we've dealt with this for so long already, but hang in there just a little longer! I hope that you can find some relief :)
Hugs,
Brittany
I have had low back problems
I have had low back problems for years following a car accident. I had really bad sciatica at that time that eventuallg got a lot better. I have found that during treatment it has come back e few times but does get better each time, DR M has put me on goldenseal before which helped, last time was just a few weeks ago and the goldenseal did not help and so went to Chirpractor and a couple days later it was a lot better. I have seen posts of a few people that have had this issue during treatment also. Hang in there things will get better and this will be a thing of the past.
Thank you all. It's just that
Thank you all. It's just that boaz thinks it's mechanical and i know I do have back problems but my physio Is one of the best in the uk and though she fixed it before can't do it now. I don't know where to turn really. It can't be die off if its mechanical and I did have it before treatment but not to the same degree for some time due to all the physio. I do all sorts of special exercises that used to help but now don't. To top it off I had to lift a heavy box yesterday and now I cannot move. I'm terrified of making the pudendal nerve worse and I cannot stay like this for as I can't sleep on my front which is the only way I can lie down.
Dear Katie,
Dear Katie,
Have you told any of your medical staff - Boaz included, that due to the pain, that you're considering suicide? Are you on any sort of pain medication? Have you discussed pain medication with Boaz? While I know it's not ideal for long term treatment of anything - the permanent alternative of suicide may put that into perspective.
Katie, years ago I've been where you are now. I had such a horrendous back injury that got little attention until I told my husband that I wanted to end it. I'm not going to bore you with all the details - it wasn't caused by what you're suffering from - but the pain was beyond belief. While it's true that I was finally given pain medication, it was very limited, but it allowed me enough of a break to re-group and find my way out of it.
Please keep reaching out to us - and please let those who treat you know that you're considering such a permanent form of treatment. As Claire mentioned, sometimes you have to become an "alarmnist". I know that's something that I too have learned the hard way.
Take Care,
Denise
I don't even know what I'm
I don't even know what I'm suffering from! It's pudendal neuralgia and sciatica but I have no idea why as my pelvic muscles are doing ok. I'm a bit scared to email boaz as I already have a lot and they are on holiday. Thank you for your kind words. I just can't see a way out of this. Painkillers will wreck my gut even more and physiotherapy isn't working.
Katie don't be scared to
Katie don't be scared to email Boaz ok vacation. If you need him he's okay with it.
Dear Katie,
Dear Katie,
The fact that you acknowledge that pain meds will wreck your gut makes me think that you're thinking about a future - a very positive thing. In my worst moments - including as a day patient in a mental hospital ward - I turned down alost all conventional psychiatric medication. I knew in my heart that for the long run I needed to find another way. Don't get me wrong - I still occasionally take things not in my long term best interest - as Matia knows, in that slowly ending balancing act between what is best and what allows me to survive. It is often hard to discern what is or isn't a necessary evil - thus my snail pace to "getting there". Although - there is that well known saying - something about life not being a desination but a journey - Hell, maybe I'm just well traveled.... : ) Anyway, I've done pain meds - I took antibiotics after six months of trying to treat a UTI with herbs (stumped Matia with that) and very very rarely take a benzo when some western doc wants to send me trhough an MRI....Like I said, a balancing act of survival.
Keep on talking - and as mentioned by Atrayol - let Boaz know! He's not going to feel great if you go off to Switzerland - none of us will.
Dear Katie- such good things
Dear Katie- such good things from the ladies-
Denise- yes!
Hang in there just for today. I truly believe you won't always be feeling like this. This is a hard road. We are here to send you virtual strength and real prayers.
Thank you all. Aga, thank
Thank you all. Aga, thank you for your sughestion my physio is a pudendal nerve expert and I had nerve blocks before treatment but she thinks it's caused by pelvic floor/bone pain. Boaz thinks it's inflammation. I suppose maybe I need to see a dr I'm in the uk but I could try and find one here. Even the feeling of a sheet on top of me causes burning of the nerves. I'm not sure it can be calmed down.
Katie, I absolutely agree you
Katie, I absolutely agree you need to email Boaz. I was right where you are with things and I am very against taking my own life because of religious beliefs. I'm so thankful I listened to the ladies on this forum. It gave me the courage and faith in myself to email Boaz and tell him EXACTLY how bad I was feeling. He was incredibly understanding. I think sometimes because we experience alot of pain often we condition ourselves to try hiding it from everyone because we fear their reaction or that they will tire of hearing it. I know this was the case for me. Boaz can't read our minds though. In all fairness to him and most importantly to yourself please EMAIL him. We ARE ALL here for you too!!
Dear Katie,
Dear Katie,
I'm a bit confused - I had got the feeling that Boaz attributed this to something other than something that he could help you with. If he feels that it could be inflamation related that could be great news. There are so many things that my treatment with Matia has helped. I had irregular pap smears - was told it would probably turn into cancer - all is well now. My ear canals were so inflamed that they were nearly closed - all good. My clitoris was swollen all the time - normal now. My irregular heart rate rarely happens now. My stomach never gurgled - felt dead. I'd quite dreaming - horrendous YEARS of headaches and sinus pain - nor rarely - years of repetitive breast cancer - cancer free for six years. Katie - that list could get longer the more time I think about it. If you listen deep down, in your heart, and feel that this treatment might hold out hope - then grab onto it for dear life.
I JUST REMEMBERED SOMETHING. Right before I went to see Matia - my back started to hurt like hell. All the muscles in the groin were starting to tighten - I'd stared to look into pelvic massage - evern internal vaginal massage that was supposed to help. I remember putting tennis balls under my lower back and gently rolling on them...... I can tell you that this is such a distant memory that I'd forgotten about this piece of my whole picture.
Here's to hope
Denise
Thank you so much Denise you
Thank you so much Denise you are always so so kind,
The problem is Im very confused and in so much pain. Originally, before starting treatment with the Brizman's, I was diagnosed with Pelvic floor dysfunction but also a spinal problem, along with my IC, which was causing irritation to my pelvic nerves, this was sorted with physiotherapy but took a long time before I could sit or lie down apart from on my front. Its now all come back but this time my physiotherapist cant seem to help and, unlike last time, she says my pudendal nerve is very irritated which is a worry as at the moment I am having to stand all the time as I cannot lie (not even on my front) or sit without searing pains throughout my pelvis, pudendal and sciatic nerves. Originally Boaz said sciatica is due to back problems and I need to have it manipulated. I got my physio to manipulate it but it seems to be getting worse and im now gettin burning in my arms and face from "central sensitisation" and being in so much pain. I know there is inflammation cause the whole area feels hot so now im really confused and in so much pain. My physio is totally behind the Brizman's treatment and is trying really hard but is a t a loss to work out why she cant help. This is worse than the first time I had pelvic pain and that time I had to see 5 physiotherapists before i found one who could help me, i even flew to the USA to see Amy Stien who couldnt help. Also, last time my pudendal nerve was ok and now its bad so I dont know whats happening. I have tried so many things to get well over the last four years, including two long distance flights and seeing many naturopaths and doctors and every one has worked for a little while and then stopped. The reason I've had enough is that I feel im unhelpable, particularly if I have pudendal neuralgia as well and I dont know why its started seeing as I havent eaten sugar, deviated from list one, eaten gluten or stopped doing the physio that saved me before. Im so sorry for all the writing I just seem to have a thousand things wrong, all of which are very debilitating. I cant eat any carbs/starches or more than 6 foods and this time last year, before my IC went wild again, I was almost in remission from doing the GAPs diet and physio.
When my back pain is really
When my back pain is really bad I do break down and take tylenol which would help with the pain, I told Matia about taking it and did not seem concerned. If you have to take pain meds to get through then you have too.
Dear Katie,
Dear Katie,
Please please tell Boaz how bad this is and ask him about pain meds.. When I was having a six month run with an out of control UTI - I treid for nearly a week to not take any pain meds - the pain was nearly as bad as child birth. I finally took tylenol with codeine. I will forever stand by my decision.
Also, please continue to reach out. There was a time in my treatment when I may well owe my life to this community.
Thank you for your kind words about me - it means alot.
Hugs,
Denise