My Story- IC & PN, i need help!!!

Facebook iconTwitter iconGoogle icon

Forums: 

Hi,I am new here. I started IC symptoms last summer with a positive UTI. bladder symptoms continues.... 1 Month later labia tingling started to the left. Later symptims progressed to butt,hip,leg,thigh,ankle, and sacrum pain. Most recently pgad and the feeling of an object in my V*****, and lots of body muscle twitching. Ive had cystoscopy,ct scan,x ray, lumbar mri,pelvic mri. Tried OAB meds, treatments from a naturopathix dr,physio therapy,one bladder instillation,did a stool kit,adrenal check,etc... No yeast or bacteria seen in stool from Parasite X3 test from upper intestine. I dont know what to think at this pointb but I am miserable!! Im 25 btw..... I am wondering what to do and feeling hopeless. Dont know where I should go next.....

atraylor's picture
atraylor

Are you currently treating with the Brizmans?

LindseyD's picture
LindseyD

No. But one if their patients said I should come to this site and check things out. I dont know if i should become a patient or not.

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

DLFox123's picture
DLFox123

Dear Lindsey,

If getting to the Brizmans is easily done for you - I would certainly jump on it.  Otherwise, of course, it would take more thought.  Personally, I never regretted my choice to start treatment.

LindseyD's picture
LindseyD

DLfox123, its not easily done. I am in Georgia and it MUCH discomfort.Iam pretty far away. So Im trying to get a feel for how worth it would be to travel there. I have heard a lot of bad reviews also. :-\ and seen a lot of discouraged folks in this forum. This is a huge pelvis,bladder,and major nerve issues including twitching. In wondering if my problems are too significant for them? No offence to them. Did u have simular issues? Is it not so worth it to travel far for them??

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

headley.patty@gmail.com's picture
headley.patty@g...

Lindsey, i think sadly the Brizmans are sometimes the last resort. So in fairness to them they must not only try to treat our problems but also treat the damage doneby the other methods we have tried before them. i.e. Meds, surgery, etc. sometimes these things have made it worse. They have a form you can complete and send in to see if they accept you as a patient. They ask questions regarding your symptoms. They then can let you know if they can try to treat you. They do not however treat symptoms. That is why sometimes you will read about those that are struggling. When in pain it is difficult to stay optimistic. My symptoms improved alot after altering my diet. I have responded well to treatment. I don't think the Brizmans claim they can make everyone well but I believe they give it their very best.  It is a huge committment financially as well as physically but I am so very glad I am treating with them. I wish you the best on ylur decision. I hope you find what works for you towards good health and comfort. 

LindseyD's picture
LindseyD

Thanks for your response. A laat resort,as in, ive tried everything else ans come to them last? I know they set out to treat the root cause, but we need symptom releif too. Are they mindful of that and our sensitivities,bladder,etc...? Some have said they r on their treatmenr 4 plus years with really nothing to show??

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

deir's picture
deir

I think she means last resort in that most people are not willing to change their diet and lifestyle for real. So they try drug treatments and other things in the hope that they can just get some symptomatic relief. Also- the concept of non- western medicine is tough for some people to understand. I knew from the start that the medical western Doctors, while kind, just got it wrong and they were saying all my symptoms were disconnected. I was and am willing to work really hard to return to a balanced state that  can depend on- not just symptom relief. But thatis just me. IC is unfortunately a tough and terrible disease so I don't know where you would find 100% satisfaction with any practitioner. In the end, one must go with their gut. (no pun intended)
 

deir's picture
deir

Also- It is more that they don't suppress symptoms in the way pain meds do etc but healing the root issues ends up relieving symptoms.

 

I wish you luck. You are not alone. This is tough.

deir's picture
deir

Sorry- I want to clarify further. In my experience, the goal is to heal and relieve symptoms but Dr B does not attempt to relief a particualr symptom in some way knowing that the suppression of it might cause a deeper imbalance. Does that make sense? That differs from the Western medical treatment of IC in many ways. Whether or not it is right for you is a totally individual decision. Not sure if there is a right or wrong answer.

LindseyD's picture
LindseyD

Does his wife not treat anymore?

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

LindseyD's picture
LindseyD

I guess basically, I dont just want to learn 100 different things that r wrong with me that I found out frim my last naturopath,and do those things,and still have no results.

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

Vin43's picture
Vin43

Hi Lindsey,

 

Sorry to hear that you are suffering. It can be so soul-destroying. I second what people have said above. My perception of the Brizmans is that they are treating a very complex condition and are trying their best with it. It is fairly well known that IC is extremely hard to treat. All kinds of practitioners, be they mainstream or other, also struggle with it, often for years. I don't think that the negative reviews are necessarily representative of the Brizmans' success rate - although you could perhaps ask them what they think their success rate it (there may be a blog post from Matia or a thread here stating that she keeps no formal record, as I seem to remember,  but it's still perhaps worth asking her if you are unsure). I also agree with the above posters that, for whatever reason, people often end up here as a last resort. Perhaps their allopathic treatments have failed or they feel that a herbal treatment aligns better with their personal philosophy. I have been with Matia for three years I am much improved, and have a phone appointment with her only fairly infrequently now. I was one of the patients who had the 100 different things wrong with them and I have got better with all of them. The one thing that I am grateful to Matia for is that she corroborated my suspicions that these 100 things are all related, and that the bladder is but one thing that was wrong with me among a myriad others. The mainstream doctors just did not or could not see this. Matia has helped me, but this is, of course, only one personal opinion. There are, unfortunately no guarantees, so it really will come down to your own personal choice. Good luck with your decision making!

headley.patty@gmail.com's picture
headley.patty@g...

Lindsey, I meant that as you have already done many patients try many different forms of treatment and if or when they do not help THEN they go to the Brizmans. Then they must work to undo all the damage caused by other treatments and try to cure the underlying problem. I think we all have had doubts before and during treatment from one time or another because we are symptomatic but I have great trust in them and their treatment. I do think it is vital to follow their instructions especially with diet ie sugar and cheating and be as up front as possible on yourbody changes. Something we might think is insignificant can be an important clue for them. I treat with Boaz and love working with him. I find he is kind, understanding and caring. 

LindseyD's picture
LindseyD

Thanks everyone. Here is my question, They go to treat leaky gut without doing any stool samples or performing any tests.... Whos to say your problem is even a gut issue?

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

LindseyD's picture
LindseyD

The reviews online are truly bad. I know, no one can possibly know how u will react. And once a dr.helps u, of course u swear by them. I know I would.
Some peoples.opinion of IC is it always comes from leaky gut or lymes. But that isnt true,bc there are.peple like Jill on the IC natwork who was in a pool when it was being cleaned and didnt have the sign up. Her Ic is chemical related. Unfortunately for me,and many of us, there isnt an easy explanation. How does eating right heal a leaky gut?

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

DLFox123's picture
DLFox123

Dear Lindsey,

I am an extremely jaded person - or maybe I used to be.  I absolutely had to have some sort of proof before I took this huge leap of faith..  The first thing that I did was what I would term acceptable.  I followed the diet and felt better really qickly.  From there I got a bit more devious.  I tried to follow other peoples protocols that I was able to find by surfing through all of these entries.  I was told that I was really lucky that I hadn't made myself worse - thus not suggesting that you give it a go.  What you might do is learn from the results that I had.  I got extremely sick and sweaty - HOWEVER - not like it was a bad thing.  After all this weird crap - from all orifices - came out - I felt like poisons had been released.  Often times, in the morning, I would wake to my tongue dripping in goopy white slime - I would spit it out and my tongue would look just a little bit pinker.  Orange junk would flow out vaginally - white chunks would come out of both of my nose and my hind end - excuse the TMI.  My urine would swirl with this cloudy haze - It was facinatingly disgusting.  At some point I had to admit that it was REALLY good that this junk was leaving my system.  I also had to acknowlege that I really didn't know what the hell that I was doing and that I had enough proof to fill numerous test tubes that there had to be something to all of this.  So, I booked a flight.  When Allen, my partner, started talking about having the Brizmans credentials checked - I told him that I didn't care if they'd found their credentials in a box of cracker jacks (which I now know is NOT the case) I knew that I was going where I needed to go and he could darned well get his butt on the plane with me.

Denise

 

LindseyD's picture
LindseyD

Denise,the way my body feels u would think i had nasty stuff coming out of my body like that-- or needing to at least. Was this doing this on its own or by following their treatment the nasties began to shed? The reason I am reluctant is bc I ate diet with fundemental dr.help plus doing my own research,a diet basically just like the Brizmans diet one. but it made no difference to my body. So was eating better what made the bad stuff rid your.body?

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

LindseyD's picture
LindseyD

Oh, im sorry i mis read you. The nasty stuff coming out of u was before going to them. What were your symptoms that brought u there?

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

DLFox123's picture
DLFox123

Hi Lindsey,

It was the herbs and diet that caused my body to get rid of all the nasty stuff that I had no idea was in there.  What led me to Matia was constantly feeling like I had a UTI when I didn't.  There is a huge list of things that have been corrected that weren't led me to treatment - but I feel is all part of the whole.  I constantly took sinus medication for horrendous sinus headaches - that is nearly a thing of the past.  My irregular PAP smears have now been normal for several years.  My ear canals were nearly shut at the end of the canal.  My stomach felt just dead - it now gurgles when hungry.  I am no longer constipated, no longer have dandruff, tongue is mostly pink and not white grey, my vision has improved, my hair is no longer falling out, my bladder rarely bothers me, my clitoris is no longer swollen when it shouldn't be : ) the ringing in my ears is now a rarity.  The horrible vaginal and rectal itching isn't constant, my crotch no longer goes to sleep.  The list is so bizar.  Hope this helps

Denise

deir's picture
deir

Lyndsay- this is just one path. Most of us here have decided this is the path for us for many reasons. Mostly, you need to read as much as you can and make your own decision. I think some people have a trigger like the over chlorinated pool but the question remains why didn't every person there at the pool get IC. Don't give up, you won't always feel this bad.

LindseyD's picture
LindseyD

Denise,and anyone else who have been helped, was it.bc u had leaky gut causing it?

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

cprince's picture
cprince

Hi Lindsey! Jumping in on this late. I am one that had probably one of the worst cases of leaky gut coming into treatment. I was sure everyday was going to be my last the way I have felt! Yes, has this treatment taken forever, and am I completely better, I wish I could say yes, but, I can say there absolutely is no question for me that diet and herbs is the only way I know I am still alive. I had so much yeast growing in my body it was taking over. You are correct they no longer send out for stool tests or whatever, but they will use whatever information you bring to the table to help put the puzzle pieces together. I have a very unique and complicated case, but never once has the Brizmans turned me away, just sending me for more testing when something just isn't right. I would have been in kidney and liver failure if I would have stuck with western Dr's. It has taken me my whole life to find Dr's that completely understand and it wasn't just until the last couple of weeks we are finally finding Western Dr's to run the right tests and diagnose an autoimmune disorder. Dr. M always new it was, but really helpful to know which one to help treat it more appropriately. No one knows for certain this is the right path, or if we are ever going to be 100%. Do I question the process and wonder sometimes if I'm doing all I can? Of course, but I don't regret for one second my decision, and am making progress, albeit, painfully slow, but I'm not here to mask symptoms, I'm here to balance my whole body to rid myself of this monster inside me. This is not an easy path and I know you have read the stumbles people are having, because when patients are feeling better they often don't spend there time here. So, this site is a poor indicator of all the successes they have had. Like everyone said, this is a personal choice, and if it feels right, get yourself on that plane and get started! The Brizmans are great and will listen and guide you through! And of course we are here to listen and support you through your bumps!

DLFox123's picture
DLFox123

Dear Lindsey,

I am not the type of person that often needs to know the why of something.  For myself, the proof has, as they say, always been in the pudding.  When I got such dramatic results by taking some of the herbs, I felt that I was on to something, and ready to commit to treatment with Matia.  If you mention leaky gut to my western doctor, who has been mostly supportive of my alternative care, I can tell that she doesn't really believe that such a thing exists.  In truth, I've never really asked Matia if it was leaky gut, yeast overgrowth, bacterial overgrowth, or what have you.  In learning more about Chinese medicine, I believe that if leaky gut does exist, which I'm fairly certain is the case, that it is one of the many symptoms of your internal system not working properly - whether it be the liver, kidneys, or what have you.

When I say that Matia was my last resort it's because all of this was so foreign to me and not as easily available or as quick of a fix that western mediciine is often promised to be.  One dark night, after years of anti-biotics for a various UTI's that nearly alwayscultured back as negative, I found myself in the ER - after sent there by my MD - about to receive IV antibiotics for a UTI that actually did exist.  The reason for the IV was that the bacteria that they found was drug resistent to all oral antibiotics.  In the ER the lab was able to find one drug left that I could take orally.  You can imagine my relief that I actually got to leave the hospital with my little bottle of miracles.  The thing was, the medicine made me feel extremely ill and weak and strange.  However, it was my only resort, so I soldgiered through that last dose - only to find upon collapse that I was alergic to it and that my lungs had filled with fluid.  HOWEVER - the UTI was gone - lucky me.  Then, the horrendous pain of false UTI's ran rampant.  So, my internet search began and I found this site - the rest you kind of know.

Denise

LindseyD's picture
LindseyD

Thanks everyone for tips. I do believe I have an autoamune problem. But its effecting my genetals and nerves and twitching in my body. all started with the dang bladder. Many people say the diet started tl make them feel better so they knew they were in the right dirrection. The diet didnt effect me at all unfortunately. I was on birth control pills for 4 years, antibiotics off and on for whatever reason,lots.of antibiotics last spring which caused yeast infectoons. Always get that problem with bactrim. Think its the sulfa bc I dont get it with other antibiotics.

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

Neta8080's picture
Neta8080

Hi Lindsey, I see I'm not alone. I have the same story with the same symptoms. Nothing found by doctors. It is interesting to hear from girls who has the same symptoms as us if the treatment helped them. I live out of USA and it is a long way for me to arrive. Did somebody managend to fix not only blader problems, but also pelvic pains.
thanks a lot

cprince's picture
cprince

They do believe IC to be an autoimmune disease, so yes, you have inflammation in your bladder and pelvic cavity. Dr M's treatment is focused on removing inflammation throughout our body and removing toxins as our bodies become so congested with inflammation and toxins the lymph system gets so over worked and nothing can move out. Inflamed tissue is pushing on our nerves causing more pain. Yes, my vv is improving and pelvic pain is still a huge issue for me, but my body is still so congested. I had so much over growth of yeast I think it has done some nerve and tissue damage. Left some scaring in my esophagus and nerves are still very hypersensitive vaginally, but the damage took years to accumulate so I can't expect it just to go away over night. It is so hard to be patient when you are in so much pain, but what other options do we have. I for one am not continuing to mask my symptoms to get to a point where my body no longer responds. The Brizmans will work with you to taper off meds if you can't handle the pain at first, but the ultimate goal to health is removing these chemical blockers and restore balance. I still have extreme pain at times where I can't function, but it's a mind over matter, it's either my organs at stake or trying to find balance and have not taken any form of pain reliever in over 2 years. I don't think any of us are sugar coating this treatment, it's hard and takes dedication and perseverance, but trust me, these Dr's will be and stay by your side through the process. They are extremely dedicated to their patients, but in most cases takes a long time to see change, not to say there have been many who have seen very quick and drastic improvements. No one knows why some respond so quickly while others are on the slow road to recovery, but either way we are all on the same path and supporting each other along the way! Sometimes this is the only place you will find support along the way or understand what you are feeling, friends and family will never quite get it, and we hope they will never have to fully understand!

LindseyD's picture
LindseyD

Why is western medicine for nerve pain and such "toxic" ??

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

cprince's picture
cprince

Most western meds especially pain medications trick your body into shutting down or sending different messages to your brain to hide pain when I fact damage and pain is still happening, western meds are a temporary relief not usually a solution and usually have multiple side effects, you are helping one system while destroying another. Not saying there can't be side effects from herbs, because there absolutely are and can be just as harmful when trying to treat yourself and don't understand the properties and how to correctly pair the herbs together to make symptoms more manageable or excessively cleansing your body and become depleted. Let's put into something relatively easy to understand, a person tries drugs for the first time it causes a chemical reaction in your body that your brain has this rush of endorphins and you feel amazing, very same with pain meds, as time goes on your body doesn't respomd the same way and your brain starts begging for more and more until nothing can quite get you to that same point. Your body becomes completely desensitized to the meds that once made you feel so good. I'm not an expert in herbs and obviously a similar chemical reaction or least at the cellular level has to change for us to feel a similar reaction, but they aren't synthetic and I haven't personally heard of anyone getting addicted to herbs, not even marajuana. No this is NOT an herb used in treatment, but trying to get a point across that Westerns view point is to provide temporary relief, and unfortunately a reason so many get addicted to meds, while Eastern medicine focuses on the symptoms, not a single system, ie bladder with IC, to rebalance and heal the route of the problem which comes from our complex ecosystem in our gut. Hopefully that made some sense. I would suggest buying Dr. Matias dissertation, it can very helpful understanding her views on IC and relationship to our gut. I am just trying to simplify it a bit, because if you aren't versed in medicine it can be a bit of a challenging read, but great information!

deir's picture
deir

such great posts Christina!

headley.patty@gmail.com's picture
headley.patty@g...

I had VV for years, painful inflamed vagina, swollen glands in rectum. Could not sit, wear pants etc.  I am now wearing jeans alot more and dont notice very often unless I have sat for quite awhile. ALL of my symptoms have improved greatly. May will be a year in tx. Dont really like to give a time frame because it builds false hopes. I made my mind up that I would just keep working at it as long as it takes. Several have responded on this thread that I hugely admire because of their perseverance to achieve health. Many times the friends on here have encouraged me through it. We are here Lindsey and happy to help if we can. 

DLFox123's picture
DLFox123

Hi Patty,

I'm so happy that you're doing so much better

deir's picture
deir

Yes- that is awesome, Patty!

headley.patty@gmail.com's picture
headley.patty@g...

Thank you Denise and Deir.  Ya'll have been such an important part of the success so far and I thank you. 

LindseyD's picture
LindseyD

Did any of you suffer with twitches through your body? My body is having twitches/spasms I know is coming from pelvis but cant figure out why its effecting some of my upper.body too. Could that be from the gut issue-if I have a gut issue? Ive been told to read Dr.Brizmans disertation, (idk if Im spelling that right) but I cant.affort to.spend that much on a book. :-\

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

Vin43's picture
Vin43

Hi Lindsey,

 

I had that in the beginning. It was really quite frightening. All gone now. I think that it was perhaps the nerves, as in some kind of nerve spasms (?) but beyond that, I have no idea. I also wanted to respond to one of your questions where you ask that given that the Brizmans don't run tests, how does Matia know to treat the gut? The gut as the causal factor is based on her theory and research. As such, her starting point is that IC originates in the gut and that is what you need to treat. Other practitioners believe that, for example, IC is caused by hard-to-detect bacteria; their treatment options would be antibiotics to kill the bacteria. Yet others believe that IC is a skeletomuscular issue; they then use manipulation, etc. to treat it. We don't know who is 'right' in that, as far as I have read, all of these treatments have some success with at least some people - but none of these have one hundred percent success. as is the case with most health issues. People come to the Brizmans for  a variety of reasons mentioned above but one of these is that the treatment seems to work, for quite a few, without the negative side effects that other treatments may engender. It can take a long time though, which is what I suspect the negative reviews that you have read may have been alluding to - they may have simply not given it enough time. For me, and for many others here, the treatment has 'worked' (and everyone will have their own definitions of this) and continues to work. I would recommend it - you can always try something else if it fails. At least that way you'll know that this is definitely not for you. Wishing you the best of luck. 

headley.patty@gmail.com's picture
headley.patty@g...

Well said Vin.

DLFox123's picture
DLFox123

Dear Lindsey,

  First I'd like to explain that I have been a patient of Matias for five years.  Which I would imagine could scare a new comber away.  Fortunately the bladder pain got better quickly and life got dramatically better.  I've stuck it out because of all of the other medical problems that I struggled with prior to seeing Matia.   My body has been ravajed by illness, surgeres and two rounds of chemo for cancer.  The OCD that I've struggled with since childhood became dramatically worse during all of this.  The medication that I was put on to control it had horrifying consequences.  I guess what I'm trying to say, is that when I walked through the Brimans doors I was a walking wreck who was completely clueless as to the life changing events that would be prsented to me - I was just there for a quick fix to my bladder.  I am here to say that there are no quick fixes when your body is so whacked out that you've become a walking pharmaceutical and have so many bizar symptoms - often the very ones that you're describing.  Conventional western docs are at a complete loss and keep trying to fix whatever piece of your problem that you're presenting to them at the time.  If you make the mistake of telling all they just don't seem to be able to look at the all.  If what it takes for you to get on a plane, or spend the money on the disertation that might help this make sense to you is a guarantee, it isn't going to happen.  For myself, and many others, this is a leap of faith.

Over the years I can recall several patients who, for whatever reasons, moved on from this treatment because it didn't work for them.  Those numbers are mimiscual compared to the ones who, in the begining sounded alot like you.  Then, when in treatment, they sounded scared and confused.  Then, as they got a bit better, they voiced how the results were just taking too long.  Then, if there was a set-back, they were SURE this meant the end of the world.  Then, they started to reach out to others that sounded alot like they had.  Then, most often, they were either gone or a quick note at Christmas saying that they would ttry to check in more - it was hard now that they were healthy.

I still get some E-mail from a gal - who five years ago - never managed to find a way to start treatment.  She still has huge struggles with her health and with pain.  It breaks my heart that she's stuck -that by this time she would have probably had her life back.  I don't know if it was the money, the need for a guarantee, or just what it was - but there she is, exactly where she was five years ago.  Sometime I just want to shake her, tell her to plug her nose and frigging JUMP! 

 

LindseyD's picture
LindseyD

I guess a good question would be for any individual to decide how long are they willing to seek this treatment and stop when seeing no good effects. I know one person in here somewhere mentioned being on treatment still for 4-5 year and barely any better.

Diagnosis: IC & supposed Pudendal Neuralgia.. Symptoms: Bladder constantly feels full and painful,tingly in labias, feeling of object in V,pgad,pain in thigh,legs,ankle,butt,hip,sacrum,and mucle twitching through body. Started Aug.'14 w/Positive UTI.

DLFox123's picture
DLFox123

Hi Lindsey,

I do feel sorry for that person.  I don't want to say too much if they feel that there is still hope here for them.  Because there very well could be.  I'm pretty sure that deciding to move on, or deciding to stay, is as hard of a decision as deciding to try.

As mentioned before, there are many positive voices - positive outcomes - that one can choose to grab ahold of.

deir's picture
deir

That's right Denise- choosing to grab hold of the positive!