Negativity

I am in a forum that is about treating IC with natural remedies and diet. It says healing but those who are "healed" generally adhere to a bland diet. If they consume anything off their normal regime they are back to square one. Ive adhered strictly to the same diet, with little relief. Someone new got upset that so many people say what does not work.

I feel like people NEED to know that some people just will not get relief by ANY METHOD. I feel that it is not negative but it is reality. Those who do get better seem to have extremely mild cases and I sometimes question if it was truly IC for many. Thhose who have distinct causation such as lyme and treat, do recover. However that leaves the rest of us with IC that does not go away.

If we do not speak up and let others know that, diet, pelvic floor therapy, supplements et cetera arent working, then we are left wondering what we are doing wrong. The answer is nothing. We just do not have a fixable cause. Sure we should try to provide relief to our bladders as much as possible but that doesn't mean our problem goes away.

The IC diet is not one size fits all. What hurts one may be fine for another.  The diet is simply a BANDAID.

Some new studies show that classic Ic with Hunners have a different genetic marker and bladder biome. So maybe in the future people may not suffer for decades.

It is okay to say No I am not okay. It is okay to say nothings really helping. Its okay to say your bladder sucks.

Unheard voices.

John Hopkins did not go well. Back to almost square one. At least my new pcm is prompt with referrals. John Hopkins wants me to go to a Specialist in Philadelphia before they will do a cystectomy. Very frustrated as this was scheduled as a PreOp and now the doctor is hesitating to even consider it, even though she acknowledges that there is literally nothing left for me. I hate having no control or choice over my body. I know I should be glad that she wants me to get another opinion, but she is my 5th specialty Uro in 26 months and I have had ZERO improvements. At some point the patients voice should count.
Seriously. They will not give us pain meds but they won't take away the misery organ. There is something ( many things) wrong with healthcare. I really want to go stand on the Congressional floor, name off every doctor who is complicit in allowing the Government to dictate treatment options and say Fuck You you prick bastards. If I could run a razor blade up every crotch there and dump lemon juice and hot sauce on said cuts, I would. Maybe then they would understand how bad this really hurts.

Ignorance and being ignored

Interstitial Cystitis is ignored by the medical community to a very large degree. Even mainstream medical publucations minimize it. It is so frustrating to see it, being so broadly misrepresented. It HURTS. Pain, severe pain is NEVER-ENDING.

 Yet even Mayo, Merck and CDC minimize the reality of the suffering we go through. I suppose having an unexplainable disease with no clear pathogenesis is easy to dismiss.

I bombard news outlets, the President, celebrities with this blog, in hopes that someone  somewhere takes the time to listen. Takes the time to care. Takes the time to say, hey this disease is causing severe suffering.

It is causing poverty, it is causing suicides.

It is not something a sufferer can ignore.

Do we not deserve compassion?

Pain control war

This war against us is weighing heavily.  I feel as if every Doctor, Politician or Government agency that inhibits or denies pain medication to chronic sufferers is complicit in their suicides. They ought to be sued for every death, that their lack of compassion creates.

People who want to get high arent just doing it off legal scripts. Street drugs will always prevail. Perhaps some discerment in prescribing is needed.

I laugh everytime I read some idiot commenting on how its doctors faults for being opiate pill mills. Dude I want that doctor.

 In my lifetime of experience, I have yet to meet a doctor who will prescribe actual pain meds for chronic pain. Shit I cant even get them to pour lidocaine into my bladder.

I realize my situation is not unique. I almost dread logging into an IC forum these days. Why? Because people are giving up after being cold turkeyed from meds that were giving them some relief.

It is SICKENING that we are being BETRAYED by the medical field.

After an encounter with a doctor who pushed Mybetriq at me and got angry when it didnt work,  I researched her. Only to find out she was getting a kickback for that med. $20,000 to prescribe it.

Another doctor who pushed Lyrica, knowing that Gabapentin made me ill, has gotten $37,000.

When the Lyrica made me sick he tried to push Celebrex, which guess what he got $42,000 to push. A med I had already a severe reaction too. He did not bother to read how it caused me to suffer oral and vaginal blistering.

That is not practicing medicine, that is being a drug vendor.

I am absolutely fed up with the malpractice and abuse.

Frustration.

 Here it is mid October of 2017. I have had 2 botox procedures. A failed pudenal block. I have had right and left side medial branch blocks.

I reduced my diet to pumpkin only for weeks to try and alkalize my body. My urine ph is always acidic.

 I have been through 6 urologists and 3 "pain" management docs. One who thought lyrica would be good. NO. Just no. What a horrible drug, then he tried to put me back on Elmiron and Elavil. Fuck off dude, or go read my extensive record.

The pain manager he referred me to only works on the spine and only does nerve block injections. No help for a bladder there.

  I had to fire my primary for her refusal to refer me to a better urologist clinic. I finally got into John Hopkins pelvic pain management. The pudenal block was my last ditch effort.

Since NO doctor is willing to truly assist with pain beyond injections, I have decided I will pursue bladder removal. I can not imagine feeling any worse than I currently do. It has been weeks since I have had any decent sleep. I can not do this life anymore.

I am absolutely fed up with the corrupt medical system. DEA interference. CDC stupidity.

The only reason this country is in an opiod crisis is because they refuse to prescribe meds to people who actually need them.

I have contacted state lawmakers, federal lawmakers, even the POTUS. You know what you get in return? Some pandering "opiates are only a mask" response.

You know what? Unless you have a bacterial infection, ALL meds are a fucking mask. Insulin does not cure diabetes. Prozac does not cure depression. Adderal does not cure adhd. So for anyone who says opiates are mask in response to my pursuit, I say then trade me bladders. I will glady take yours and let you jaunt down this cursed path of misery.

I'd rather work than be sick

Some things I'll write here so that people know.
I am not lazy. I AM sick.
What takes a few minutes for you takes much longer for me.
I live with chronic pain and the need to keep a toilet close by.
I can not eat or drink whatever I want without severe consequences.
Any activity I do, do comes at a price of more pain and more peeing. ANY. ACTIVITY.
I'd MUCH RATHER be healthy and WORK FULLTIME and have a satisfying career, than be at appointments all the time that are just to try and make my life semi bearable.
Trust me WORK is better than constant PAINFUL PROCEDURES that I do to try to find a way to live in some sort of way that is not ALWAYS PAINFUL.
So I am sorry that I am broken. I've done everything I can to fix myself. I have fought insurance, doctors, family and friends who assume they know what I go through 24/7 365 days a year.
At some point enough is enough and unless you go through this then I dont expect you to really understand or care.
All I ask is that you not assume my days are easier than yours, that I would WANT to be sick rather than well.

Emotional agony

I've always felt so alone here, in my body. Crying out in silence. No one could hear me when I spoke. No one understood the pain raging inside. No one understood how it struck out at my loved ones. No one one understood the grip of IC. The lack of intimacy fueled only by fear of pain. The fear of food fueled by fear. The fear of friendship because who wants a broken friend.

An innate self loathing, over something broken inside.  Who understands that intimacy feels like an assault? That friendships crumble quickly when you can't hold up your end. That sleep is fleeting if ever obtained. That going to buy groceries can take a Herculean effort. That work is just not a possibility. That renting redbox is easier because you dont want to pay 12$ for dirty toilets.

That no matter what you do, who you are, where you go, IC is a harsh cruel and vicious predator. Lashing out, striking in the midst of good and bad. You know there is no one who will help you, so you read every medical study, praying someone will finally comprehend this misery.

 Ever seeking for someone to care enough to help me. Wishing, praying begging doctors. Doctors who literally ignore you and dump you onto another doctor who will do the same. Repeatedly. The idea that I am worthless is nailed in deeper every time a doctor dismisses me.

Seeing outright lies on medical notes. For instance 20 years ago when I was desperate for sleep and doctor wrote "denies nighttime urination". The whole purpose of that visit was due to me peeing every 10 minutes and not being able to sleep.

It angers me. I wish I could line each of them up and make them experience this constant agony. I wish that they could empathize because they KNOW not because they think they know. I know that might sound horrible, but when you have just poured out how much agony you are in desperation and all they can do or will do is give a condescending pat and a lecture on learning to deal with the pain, it makes me uncaring.