ICAdvocates

ICAdvocates We’re Interstitial Cystitis Advocates. Our mission is to spread awareness all over the world about IC

I just saw this so my apologies for it being last minute!The link is on the fb pg (link in bio) for anyone interested. E...
09/30/2020

I just saw this so my apologies for it being last minute!
The link is on the fb pg (link in bio) for anyone interested.

Elmiron is a drug that was used to treat Interstitial Cystitis up until a few months ago when it came out that use of Elmiron has been linked to permanent retinal damage that can result in vision loss.

The has STILL not updated there guidelines to reflect this new research!!!
It is imperative to your health if you’ve ever used Elmiron in any way to seek out a trusted opthomologist to have a topography (eye map test) done of your eyes.
There are other medications you can take if you were using Elmiron that are safe to take.
Heparin is a good alternative & you can always check the for natural products available there as well.
Please share this post & tag your IC warriors who need to know this news.
Thank you.
Sending you lots of healing energy today.
I hope you’re all having a low pain day.
💙🦋💙

Good morning   !!! 🧚‍♀️👸I’m so thrilled that I will get to introduce you all to one of our   & warrior who’s become one ...
09/21/2020

Good morning !!! 🧚‍♀️👸

I’m so thrilled that I will get to introduce you all to one of our & warrior who’s become one of my best friends as well! 😽

Susana has an incredibly powerful IC/ Embedded Infection story that she is now ready to share with the world!!! 🥳
🙌🦋👏💪🏼

This live is a BIG deal as there has been a lot of controversy, debates, arguments & multiple untruths on various social media platforms behind this theory in the as a causation to IC.

Please keep in mind 2 things during this live;
1-this is 1 womans personal experience.🦋
2-neither of us are medical professionals.💙
However we have taught ourselves a lot over the years in regards to pelvic pain/IC.
Our goal is to share her story in order to better educate the public.
We will aim for a 1 hour live with 20-30min of her story followed by 20-30 min of Q&A. Your questions are welcome & encouraged!!
In order for this to run smoothly, I’ll be taking questions all week till Friday on my story here. So please ask away!!
Your name will be kept anonymous unless you’d prefer otherwise. ☺️

Su’s IC symptoms began in May 2012, although her whole life she had felt at times that her bladder wasn't empty & had to wait for what she called 'little p*e'.
Her diagnosis came in January 2015 after having a cystoscopy & laparoscopy.
Her treatments with Prof Malone Lee began 31st May 2017 & ended on 4th February 2019.

To hear more about Su’s story, make sure you mark your calendars for this Friday, September 25th, 2020.
1pm PT; 9pm GMT !!! ⏰

Thank you so very much for being brave, courageous, honest & willing to share your story with the world here. 😘

Share & tag your friends!
You DO NOT want to miss this one.

💙🦋💙

09/06/2020

To all your haters

3 years ago my wife got a call in the middle of the night. It was from her estranged sister, that she hadnt spoken to in nearly 2 years because of substance abuse. Her sister was having marital problems and there was a possibility her nieces would be put into the system. From that very moment, all else stopped and she began to go into action. She proceeded to spent hours upon hours, days upon days and weeks upon weeks helping her sister. At times our family at home was put on the back burner. Her main focus was making sure her sister got the help she needed for her addiction and making sure the kids didn’t get lost in the system. She would spent sleepless nights doing research and collecting the funds needed to get and find a lawyer for her sister.

In time, she found a place for her sister to go to begin recovery and get away from years of an abusive relationship. She helped her sister rebuild a relationship with her children.

One would think that after putting 6 months of effort into her sister, that her sister would be grateful or at least be willing to return the favor when Libby asked for a very simple and easy task to help with Libby’s IC advocates page. Her sister refused to help and told Libby to f**k off and pretended as if Libby had no part in helping her on her path to recovery. As quickly as her sister came into back into her life, she was gone again.

Next comes 2 years of dedicated help to the chronic pain community.
Libby had a woman fall on her head, as I’d imagine a lot of you are aware of. This set off a never ending cycle of medical misdiagnosis by doctors and years of pain and suffering. I watched as my wife changed. She went on a roller coaster journey of physical, spiritual and mental anguish.

During this roller coaster, she realized that there was a positive side to all this. She had learned so much on her path of misdiagnosis. She could share to the world what she had learned about herself, about the medical community, dealing with the insurance companies. She learned that she had a special ability. That ability was to help guide people to there own recovery and get answers.

I would come home from work and she would be ecstatic and want to tell me a story about someone that she had helped today. Someone that through a little guidance and pushing had learned what they would do for themselves. They had figured out what to ask their own doctors and find a little hope on years of suffering.

My wife is not perfect in any way. None of us are. What my wife is: caring, empathetic, dedicated, smart, willing to give up her own cares for others, unapologetic to truths, loving, real and so many other things.

At times our family has been asked to step up in other aspects of ours lives because she needed to spend a few more minutes on the phone with someone on the other side of the world. The countless hours she takes each week to help complete strangers was baffling to me. I didn’t understand.
In the middle of a pandemic I would be asked to leave the house, go get food and ship it, which cost more than the food, across the country to someone who wasn’t allowed to leave there home to get food for themselves. I had no job and very little money coming in. Helping others was more important then her own wellbeing.
Just like she studied medical journals and trials, she began to study the deep dark secrets of Covid. Like so many actual medical professionals she was silenced, shadow banned and made to go away. As she watched the country slowing falling apart around us all, she realized that someone needed to speak out for all those people unwilling to speak for themselves. Essentially doing exactly what she has been doing for the chronic pain community for 2 years.
Low and be hold people started to unfollow Libby. People that she had stopped life for. People she had spent countless hours dedicating her life to.

These same people decided because of politics and difference in opinion, that Libby’s thoughts, help and years of giving her own life to others were to much for them to handle.

This is what I have to say to you all takers. Non takers need not read this last paragraph.
Eat a bag of dicks. Go f**k off to f**k off island. If you only new how many hours of time I have lost with my wife because of you ungrateful sh*ts you would be astonished. My wife has given her self to you. Because of some difference in political views you can walk away and delete her from your life??? You aren’t and weren’t worth the time. I personally wish your life would go back to the way it was before you meant, talked and took from her. You are the ones who will be losing out. We are better off without you. Thank you for revealing yourselves sooner rather than later. Now we don’t have to worry about your conniving ways anymore.

Take care

Thanks,

Ray Fortman, luckiest husband in the world.

I was diagnosed with   on October 31st, 2018. I was bedridden for about 6 months in 2018/2019. I was told I had IC by mu...
09/03/2020

I was diagnosed with on October 31st, 2018. I was bedridden for about 6 months in 2018/2019.
I was told I had IC by multiple “IC specialists”. I even underwent for 3-1/2 months at under the care of one as well as being on multiple oral meds. She insisted I had IC although I had 2 that showed I have a healthy . She refused to do blood work or do any vaginal cultures. I was bounced around from specialist to specialist in various fields of medicine. , , , , & many more.
Eventually I took my life into my own hands. I spent the months I was bedridden everything I could find on , , the 3 parts of our , & SO MUCH MORE. 🤦‍♀️

Eventually all my research & for myself paid off. All the dr appts, all the long painful, lonely nights all paid off when I figured out what my true causes to my were. And I did it with the help of other women I met online in the , a handful of excellent doctors I found & my own .

I used the IC Phenotypes to help me narrow down what was causing my particular set of pelvic pain symptoms. I have a hypertonic (type 3)
(type 4) & (type 5) as well as a of low testosterone & low estrogen. I also have bulging disks in my & , a pinched nerve at my L5-S1 &

Even with all of this, on the correct treatments I’ve been able to go again, I can walk, sit, even jump & climb without much pain at all anymore! In fact, I took a 23 day cross country road trip earlier this summer with my husband & my 3 yr old son!😆

If you’ve been diagnosed with IC, I want you to know there is ! So so much HOPE for you to LIVE YOUR LIFE the way you want to!

I’m happy to help you in any way I can to get there too.Just send me a dm anytime.😊
Sending all my love, healing & peaceful energy today & every day!
God Bless!
💙🦋💙 @ Los Angeles, California

07/17/2020

Libby is a loving mother of Hannah 17, Sarah 15 and Jacob 3. She is my amazing wife. L… Ray Fortman needs your support for My Wife, Libby, needs new eyes!

Hi everyone! I want to introduce you all to our  , William .nich 🙏🙏🙏👏👏👏💙🦋💙Hey! I'm a 19 y.o living in Indonesia, i have ...
07/02/2020

Hi everyone! I want to introduce you all to our , William .nich
🙏🙏🙏👏👏👏💙🦋💙
Hey! I'm a 19 y.o living in Indonesia, i have IC since 2017, right after i took appendix surgery via laparoscopy, and it really changed my life. I also have Tourette but it's not severe and it's not really noticeable, but whenever the pain from my bladder relapses, it triggers my Tourette.
One day i went to an internist and he told me to do a urine test, so i did it and the result came back normal so he just gave me medicines and assumed i've cured, however the pain was still there so i went to another internist and he told me to do urine test again, so i did it and the result came out same, so he just gave me medicines and did the same with the first internist, then he assumed i was healthy and it only came from my mind. Because i study outside the city, i have to live away from parents, so i don't have much money to keep doing those useless tests. But the pain became worse as my weight increases so on March 2019 i took a radiology test which is not cheap for a student like me and the result came out i have cystitis. So i went to other internist and he said cuz i have cystitis on my radiology test so i have to do a urine test while he gave me medicines and he keeps ignoring my old urine test results, so i told him that the wounded part of my bladder didn't came from infection so urine test won't detect it, but he insisted. So i did urine test again and the result came out same!! And guess what? From that urine test, he claimed i've been cured because of medicines he gave me. But if i do radiology test again i bet the result will still be "cystitis", cuz i'm still feeling the pain until now! But in my city, we don’t have many internist, so i give up, i stop taking medicines, because they are useless and waste of money. And i'm planning to get my master degree on europe in 2 years so i can save money and taking my chances on internists in Europe cuz they have better quality.
I use this pic to inspire you. I climbed the top of Mount Lawu 3 times with my IC, i’m sure you can too!
If you have any question, feel free to DM me 😊
Follow William .nich
💙🦋💙

Hi everyone, I’ve been feeling much better recently due to going back to   regularly now that my pt’s office is open to ...
06/30/2020

Hi everyone,
I’ve been feeling much better recently due to going back to regularly now that my pt’s office is open to seeing patients! My pain dr also upped my medication so I’m now on a 15mcg butrans patch plus he added 10mg of flexirol every night which is helping with the muscle spasms.
I hope you’re all feeling as good as possible today!!
💙🦋💙

Address

Los Angeles, CA

Website

Alerts

Be the first to know and let us send you an email when ICAdvocates posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to ICAdvocates:

Share