Asthma. Horrible for these meds. No! Please research tolerance and withdrawal issues with these drugs. Benzos and ADs are not safe. Please!

Thank you for this. I still feel meds are damaging and dangerous.

Hello, Mike is joining

Exactly why I left my 1st Urologist. Now it has taken almost a year to get an appointment with another Urologist 2 Months out ugh. I am suffering 😢

God Bless You 🙏❤️🙏

Such a difficult journey you’ve been on, Jill, I’m sorry. And then to have to deal with a vaccine reaction and a-fib also. Oh my. Are you on an anticoagulant for life now or is it too soon for that?

Thank you for sharing your journey. As a recent breast cancer survivor I truly appreciate your words!

Glad the fire didn’t get you

I stopped taking this medication, even though it helped, once I saw all the warnings coming out of the USA about eye damage. So glad I did. Sorry for anyone that is now living with the consequences of taking it. Thanks for the information.

I just learned that lung and endometrial cancer can cause retinal disease and scarring.. and is progressive also. 🥹

I refused to take this med because doctor warned me about this. Glad I did!

So scary. I have damage from taking Elmiron. It will be 5 years this summer that I’ve been off the medication. I have experienced some progression. I am a member of the IC Network. Thank you Jill for all you do. Praying that everyone who has eye damage stabilizes soon 🙏🏻

Bless You Jill 4 what U do for ALL OF US♀️♂️🍀💚

You went through alot so cry😊😢

Hi Jill Thank you for this very informative video. I have gone through pelvic floor therapy and do my prescribed exercises regularly. Have not been able to go off Elmiron. I have added Bladder Rest and my flairs have gone away. I spent about 8 months having flairs which prompted me to try pt.which I learned about listening to your videos. I recently listened to your video talking about lacto ferrin reducing inflammation and ordered it from you and have been using it for a couple weeks now. I’m hoping after I go through the second bottle I can try to taper down from the Elmiron which I have been in for about 25 years now. Elmiron had eliminated the pain within 2 weeks of starting it after 7 years of agonizing hell. I do not have gunners lesions and my doctor said my bladder looked good when he did the hydrocystoscopy. He said at the time (12/99) I had the classic pinpoint hemorraging seen when the bladder is hyper extended in an IC patient.

I am new to ic , what is the phone # to call you .

Very timely and extremely helpful information!! Thank you!! Information is Power!! 👍👁️ 💊 👀

Thank you so much for what you do !!!

Anyone who suffers from this please consider St. John's Wort in conjunction with L-Arginine and/or L-Citrulline. L-Arginine can cause stomach upset for some, so L-Citrulline, which is converted to L-Arginine can be used instead, or each can be used in conjunction with one another.

I am 46 and have regular cycles still. Now I have this problem and can feel a twinge in my urethra area for the last week. I am a widow and am no longer sexually active. I take Epsom salt baths no suds. I have used panty liners. Perhaps I should change my laundry detergent, and see if I can get an Rx for estrogen cream? Thank you for the video! I just subscribed!

Hi Jill! Thank you for helping patients Avoid all these invasive bladder and urethra procedures- by always thinking of structural issues that good Pelvic floor exams and therapists can address!!👍👍 I’m also glad I went to a plant based diet to increase blood flow throughout my body after cancer treatments. I have not even had an exam after pelvic radiation therapy - but it sure changed my body down there. 🥹

Where do I order the bladder builder?

I have interstitial cystitis symptoms and recently saw a urologist. She was really unfriendly and seem to have no compassion about the fact that I was incredibly fearful of having to learn how to cath myself as a legally blind woman. Also in a wheelchair from spinal cord damage. She prescribed an oral medication to relax the bladder and estrogen cream but never explain what the estrogen cream was for. I had no idea. I left a message at the clinic for them to call and explain it to me and no one ever did. So thank you so much for this video because without it I would have had no idea what that was for and I would have never used it. I've been suffering so much, have to pee like every 10 minutes and get very little sleep as you can imagine. Praying that this gets better. If you have any advice I would be thrilled to hear it. Thank you so much!

you are awesome!!

Psychic Danni here haven't been around awhile, the pain has been awful but hope u are okay, u look amazing! Hope 2 catch up soon, my pelvic floor is shot, so lots of work 😢

Im getting my hunners lesions removed tomorrow i am so, so, so scared.

Caught you on the replay just wanted to thank you for everything you do and wishing you a very happy blessed holiday season praying for many blessings for you and yours!!!

19:19 made me cry

I loved Cystomend until the formukation was changed, Like Bladder Builder it gave me hot poker like pain in my bladder. I switched to Bladder Rest. No more pain. Combined with Elmiron it minimizes me having flares . I have gone through physical therapy,external and do my prescribed exercises. Still can't wean off of Elmiron. Luckily it has not affected my eyes. Have been on it for almost 24 years. I was injured by a urologist from.urethral dilation which caused me to have constant urethral spasms and I was infected with klebsiela which toik 1. 5 years to ckear up with macrobid. My former urologist died. I had a stricture frim childbirth. Ididn't have uti's until after I went to the assiciate of my former doctor. I guess the chronic uti led into developing IC.😢

Jill, once again thank you for everything you do for so many of us. This doctor sounds like a godsend. I hope that you are doing well 🙏

I have been fortunate regarding Elmiron. That is what helps me tremendously. I have been on it since February 2000. It has not damaged my eyes. I haven’t been able to go off of it.

I can’t use Bladder Builder. I t caused me to have bad bladder pain. I can use Bladder Rest

I can’t use Bladder Builder. I t caused me to have bad bladder pain. I can use Bladder Rest.

Thank you for this Information. Very helpful. I too love to watch “are you being served” such a great way to have a good laugh to calm the nerves. Speaking of; I have a lot to learn about the central nervous system. Bless you both for you knowledge and love of helping people…..

Anyone have Lyme infections? This is a symptom of Lyme infections.

TMJ? I have that, too! I’ve been sick with toxins, mold and ticks for 21 years, and the residual effects include a plethora of pain and bodily and teeth problems.

Any chance you cover Lyme as a cause of this? Lyme has all these symptoms and spirochete storms. It’s ruined my teeth and they are falling out and dying! I loved my teeth, and now these stupid parasites and bacterias have invaded my body, and everything has been affected. I also had breast implants which made me so sick from toxins that I had to have 4 major surgeries within 10 months, and died on the table. I also contracted pseudomonas aeriginosa which I am convinced made my legs have nerve pain and my bladder go nuts!!

DMSO? I see you don’t answer questions.

Thank you!

TENS unit?

Thank you Dr. JILL! God bless you, from Baudette Minnesota, sincerely, Jill Achen

I am one of 8 moderators on a IC/PBS facebook group and we have nearly 24 hour a day moderator coverage. We screen our member applicants very thoroughly, and have almost 35,000 members. All of the moderators have IC and a lot of compassion. We do not allow any scammers, medical advice, fighting, or false information. Our team is knowledgeable about IC and many of us have a medical background. We do not allow doctor bashing, talk of embedded infections, and we deeply care about our members. We understand they have pain and they will get cranky but we do not allow them to lash out or break our rules or Facebook’s guidelines. We have to remove members who will not follow the rules. We don’t like doing that. We have about 40 new members applying daily. Our group members recommend the ICNetwork up to 4-5 or more times per day. Many of our members are fans of yours and we refer people to your articles constantly. We are a good group, a group that doctors are recommending to their IC patients. I personally read every comment and post daily on our group and I remove inaccuracies and anything hurtful. When we have someone who will not follow the rules & FB guidelines we write to them personally and try to help them understand how to ask questions and give support without giving or asking for medical advice. Once in a while people get angry, don’t read the feedback we write and they leave in a huff. That isn’t what we want. We are all volunteers and we have a heart for IC patients, because we are IC patients. I’m not plugging our group, we don’t need to. I moderate under my real name and use my real name on KZbin. I’m Catherine and I was a loyal member of your forum for many years. Perhaps this will restore your faith in online support groups when they are run well and by a team of well informed people. Thank you.

I remember years ago in one of the Facebook IC groups, semaglutide was being brought up by IC patients who were finding that it surprisingly helped their bladder symptoms. The group's administration deleted all of those posts and comments, and stated that any mention of semaglutide was not allowed in the group. I may have been removed and blocked from that group because I commented that I strongly believed discussion of it was highly important and should have been allowed, and I didn't like the removal of those valuable posts and comments. (Not that we should consider using semaglutide, but investigating how and why it helps with IC is really important.)

I’ve slowed down water intake simply because of the nausea my IC creates. It’s improved a bit with anti nausea meds and IV hydration now I drink more still not enough I put fresh mint in my water to help. Now I’m up to almost 50 oz a day

I'm also sensitive and found a gas leak this past summer 4-1/2 feet underground in my backyard. After the gas guys changed my gas meter 3 times. Unbelievable sense of smell.

I love that

I dont have a vagina ! Idiot!

I am kind of new to IC. I have been dealing with it off & on for 2 1/2 yrs. I also deal with lupus, fibromyalgia, & IBS. I just had an IC flare this past weekend. I have been to a kidney specialist, but she basically told me nothing. All she told me is that I have IC & said nothing can be done. I have felt very hopeless. I am starting to really look into this & have seen that there are definitely some foods, etc... that I should avoid. I guess I just need to know what Dr. I should really see & what type of diet & other things I should do, eat, not do, etc... I am just so lost on where to turn.

Will you talk about the benefits of all your supplements in the store. It would really help us to choose the right supplements.

That would be me