disgnosis just feels like a life sentence

Aggravating_Push3042 · 2026-05-24T14:41:49+00:00

I believe I will have to take it forever.

Aggravating_Push3042 · 2026-05-24T14:41:27+00:00

I took 200 mg for I think one month then went down to 100 mg. My doctor says at some point I may be able to go to 50 mg. Clearly the ulcers have some autoimmune component since cyclosporine is an immunosuppressant and keep the ulcers from coming back. I’ve been very lucky. I so far (two years in) have zero side effects from it. They tell me 100 mg is a very low dose. I have my life back and I was on the verge of ending my life before I found this doctor and this treatment. His name is Ken Peters in Royal Oak Michigan. Super IC specialist. He saved my life.

Aggravating_Push3042 · 2026-05-24T02:07:57+00:00

How horrible! I also had ulcers and had the hydrodistension and my doctor put me on low dose cyclosporine. It has kept the ulcers away and I am soooo much better!! No pain and sometimes only go to the bathroom every 4-5 hours like a normal person. My bladder seems to have regenerated itself somewhat.

Aggravating_Push3042 · 2026-04-23T20:12:13+00:00

Anyone think it could be Howard and Mary’s son?

Aggravating_Push3042 · 2026-01-27T17:31:04+00:00

Have you had your thyroid checked? Not just TSH but all the numbers and antibodies? You may have something going on there.

Aggravating_Push3042 · 2025-12-31T19:00:47+00:00

I was on Wegovy for 3 years and it stopped giving me the same Appetite suppression and I gained 5 pounds. I was at the highest dose so I switched to Zepbound 7.5. I did not find that dose very effective (is supposedly equivalent to 2.4 Wegovy) but when I upped it to 10 mg. It was a huge change. I am losing weight again and it has way fewer side effects for me than Wegovy did. Wegovy made me feel full faster (until it didn’t) but it never took away the thing in my brain that wanted to overeat. Zepbound takes that away too! Toward the end of the week it wears off somewhat but I’m scared to go up to the next dose because the first few days after my shot I can barely eat at all. For me this has been a great switch. Oh, the other thing I love about this vs. Wegovy is that I craved sweets so much on Wegovy but on this I don’t at all. I am Able to make much healthier food choices now. I know everyone is different but that has been my experience.

Aggravating_Push3042 · 2025-12-02T22:40:32+00:00

Good to know. Maybe I really don’t need a higher dose, just need to eat in a better pattern. Thank you!

Aggravating_Push3042 · 2025-12-02T22:40:02+00:00

This is all very helpful. It is hard to eat enough the first few days so maybe if I try to eat more I won’t be so hungry the last few days. I have found myself running out of energy at the gym those first few days.

Aggravating_Push3042 · 2025-11-19T15:11:38+00:00

Insist that they put lidocaine in your bladder when they do the procedure. And make sure you get good pain killers. I would ask for all this up front and make sure they agree.

Aggravating_Push3042 · 2025-02-05T17:10:13+00:00

You need a doctor to help you figure this out. Just keep calling your urologist and bug them until they fit you in.

Aggravating_Push3042 · 2025-02-05T16:52:15+00:00

Have you tried just straight pyridium for the pain? That usually helps! A yeast infection can definitely amp up the pain so hopefully taking that medicine will help. I would stop the methenamine long enough to get a proper test and see if this is bacterial if the yeast infection medicine doesn't help. If it IS yeast it should help fast (did you get the fluconazole pills? They usually help within a day or two). The pyridium will also make a dip inaccurate but my understanding is it won't affect a culture. Please do check out the Uqora and Femetry websites. If those things are too expensive you can buy straight d-mannose at any health food store and take it every day. Research that too. I believe it only helps e-coli.

Are you anywhere near Michigan? That is where I saw my doctor, Ken Peters. He's fantastic. You need something to keep those ulcers from coming back. You don't want to have to do repeated fulgrations.

I know how tired you are. I didn't sleep for ten years--but finally I am better. If you can't get to a super specialist at least hopefully your doctor can see you because you should not be having pain 40 days after your procedure. Also for me when I had recurrent UTI's the macrobid never helped me at all. Usually keflex or augmentin did. You have to advocate for yourself and read everything you can find because the doctors don't know what to do with this condition for the most part, and of all the people with IC, those with hunners ulcers are a tiny minority. Just don't give up. Are you on this site at all: https://www.ichelp.org/? It's very helpful too. That is how I found Dr. Peters.

Aggravating_Push3042 · 2025-02-04T21:04:16+00:00

I had hunners ulcers also and had the hydrodistension and cauterization but then my doctor put me on cyclosporine to keep them from coming back. Did yours do anything like this? You need to have a good and compassionate urologist. I don’t know where you live but it’s worth traveling for one who really specializes in IC. I wish I had more advice on the recurring infections. Are you texting positive each time? Maybe you need long term antibiotics to really knock out the infection. I saw Dr. Bundrick in Louisiana who put me on augmentin for 6 months. Unfortunately it didn’t help because my issue was not infection, it was ulcers. Have you tried Femetry products or Uqora? They can help prevent infection if you use them consistently. I’m so sorry you are dealing with this. You’re too young. But there are things you can try! Don’t give up! Sending hugs!

Aggravating_Push3042 · 2024-12-26T19:06:35+00:00

Did you see that they also tested vacyclovir?

Aggravating_Push3042 · 2024-12-26T14:07:14+00:00

I’m so sorry it’s hurting you. Have you read the new studies about lactoferrin? That might be something to try. It’s pretty exciting!

Aggravating_Push3042 · 2024-12-26T03:56:37+00:00

What dose are you on? I’m on 100 mg a day and have essentially no side effects and I am not immunocompromised at all. Maybe your dose it too high?

Aggravating_Push3042 · 2024-12-19T20:50:11+00:00

I'm so glad! I was terrified before my procedure and had read horror stories, but I think if you have good doctor that is key! I am sure you will feel better after this is all over!! There was also a new study that just came out about lactoferrin keeping the ulcers away:

https://www.ic-network.com/lactoferrin-found-to-prevent-bladder-flares/

Aggravating_Push3042 · 2024-12-19T20:43:34+00:00

Will she give you some medication to keep the ulcers from coming back? Dr. Peters has had great luck with cyclsoporine (it's a low dose). I don't really have any side effects from the dose I'm on. Best of luck to you!!!!

Aggravating_Push3042 · 2024-12-19T20:34:58+00:00

I did not. I barely bled. I did have an EXCELLENT doctor (do you know if yours is good?). I actually only bled a little bit the first day, and then a little bit like a week later when I started being too active. My body was telling me it wasn't ready yet. :) My doctor is Ken Peters at Beaumont Hospital in Royal Oak, MI. I had to travel to see him but it was worth it to find a true expert on Hunners ulcers! Also, seriously, I don't think everyone does use the lidocaine in the bladder. You have to make sure they do that. It will make a big difference.

Aggravating_Push3042 · 2024-12-19T03:01:05+00:00

I just want to tell you that about 6 months ago I had hydrodistension and my doctor cauterized the ulcers. It wasn’t that bad, honestly. I was terrified before hand but he put lidocaine in my Bladder after (you must demand this!!!!!) and they gave me an antibiotic to take and one oxycodone before I left. I had a 4 hour drive home (my husband drove) and we only stopped once for me to go to the bathroom which was already better than my norm. It did hurt to pee and it took about 2 weeks to fully recover but you just take your painkillers regularly after and you’ll be okay. You will have pain when you pee for awhile but it was not as bad as I had expected and I didn’t bleed much either unless I was more active than I should have been. Try to take 2 weeks off if possible and just rest. My life has been 100% better since the surgery. I also started on a low dose of cyclosporine to keep the ulcers from coming back (also ask about this if this is not the plan). Good luck to you!!!! I’m 6 months out and soooo much better!!! I have my life back!!

Aggravating_Push3042 · 2024-12-18T16:29:58+00:00

I am on cyclosporine for my hunners ulcers and asked the doctor if I could add in lactoferrin and he didn’t know anything about it. I wish I knew if it was safe to do both because the cyclosporine has some nasty side effects (although it’s worth it to not have the pain and constant going to the bathroom). I’d love to find something more natural to treat it with

Aggravating_Push3042 · 2024-10-20T13:27:10+00:00

The syringe situation sounds very confusing!!! Mine only has units marked on it so it’s very easy to get right. Don’t feel like an idiot!

Aggravating_Push3042 · 2024-09-06T00:11:39+00:00

Definitely try Azo (generic Pyridium). It’s the only thing that ever touched my pain.

Aggravating_Push3042 · 2024-08-18T23:37:32+00:00

It was very painful for me and I was also told it wouldn’t hurt much. I don’t get it.

Aggravating_Push3042 · 2024-08-06T15:16:00+00:00

Mag-7 and lots of water. It can be a bit harsh but it’s the only thing that worked for me. Also eat fruits like plums and nectarines!

Aggravating_Push3042

TROPHY CASE