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.

Is this more than a UTI?

The fuckery of Interstitial Cystitis is that it mimics UTI's. However it does,NOT go away after antibiotics.


You may have Interstitial Cystitis( IC). In fact my guess is if you continuously have had UTI like symptoms without resolve you do in fact have IC. What is IC?

This is a disease that attacks the lining of your bladder,before reading this link please understand that any clinical description will gloss over or negate the PAIN.

http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/definition/con-20022439


 I have been fighting this disease 21 years and have had a diagnosis for 21 years. My diagnosis was fast, it only took about four months from onset.

That is actually amazing because many women, men and children suffer this disease for YEARS before knowing what they have.

Many will sadly end their lives because they can not handle the pain and symptoms and the lack of support. The sheer lack of empathy from doctors. I do not know how a physician can live with themselves knowing they are sadistic by not treating us.

 Treatment is still dodgy at best though, even with a diagnosis. You will be given incorrect information ( please I BEG of you do NOT drink the cranberry juice!).

 You will be treated like you are crazy or a hypochondriac. You will be treated like an addict if you dare mention the exceedingly non stop progressive pain.

You will be told that is is a mental health issue and that pain can only be resolved through therapy. IC is a psychosomatic response to stress, they may tell you. Many doctors will simply throw up their hands, so to speak because they can't offer you a “cure.”

This PRETENDING from medical professionals is a lie. This disease is real. It affects your bladder. You may have pain in your legs, buttocks, lower back, abdomen, kidneys and even down your arms. You will feel the sharp stabbing cramps, the burning, the never ending feeling of pressure to pee. Some cases are mild, you only have a bit of burning. Or you may just have pain. Or just have frequency.

You may unfortunately experience extremely painful sex or have extreme pain after sex because it causes a “bladder flare”. Men can also be affected this way. Undoubtedly you will likely experience crippling pain at some point.

It also affects your life beyond the bathroom. You can't just go to the bathroom and be okay.

You will repeatedly return to the bathroom. Over and over and over. Employers will get angry. Spouses and children will be annoyed that you miss so much.

You will find yourself avoiding events to avoid the angry questions or whispers and stares. You may be unable to work for long time periods. You may be unable to work at

Sadly there is not a cure, yet. There are a few studies showing some promise but at best bet it is permanent viral or bacterial damage or caused by a central nervous system dysfunction. For the love of your bladder do NOT do Kegals.

Your bladder struggles to empty itself and the muscles around it are over restricted. Kegals add to the pelvic floor dysfunction which only further irritates the bladder. Do seek out a Pelvic Floor Therapist.

There are a few “treatments” that some Urologists will ply. Elmiron, Ditropan, Mybetriq, Vesicare DMSO or Bladder cocktails which involve medicine being directly placed in bladder via catheter. Botox. Interstim. Et cetera

Supplements may offer some relief. Marshmallow root, Cornsilk, Uva Ursi, D-Mannose, Willowbark tea, Tums, Prelief, Uribel, Uristat( NOT The cranberry!) Chamomille, Echinea.

The other thing you will hear is dietary changes. YOU HAVE to modify your diet for this disease.
Cut out caffeine if it bothers you, cut out gluten, cut out sugar, lower your oxalate consumption, stop eating fermented foods, avoid acidic foods. Raise your alkaline content. Do NOT EAT or DRINK CRANBERRIES!!! I can not stress enough the importance of dietary changes. Healing Interstitial Cystitis Naturally on Facebook can offer you a starting step in how to modify your diet.

There are some promising studies of Marijauna and its component cannabadiol or CBD oil. It helps reduce pain, inflammation and spasms or seizures of your muscle. Your bladder is a muscle.

http://medicalmarijuanainc.com/interstitial-cystitis-medical-marijuana-research.