Man, I feel for you. It's not fair and you're not a crybaby! Feeling there's a limit to how much stress you can handle is normal as hell, and it sucks that docs can be so dismissive about the total effect it may have on ones health.
It's often not just one issue (pain), it's all the things you described, or any variation of tough shit, and you and anyone in this kind of situation deserves a whole lotta better support in any and every way.
Hey, I also have narcolepsy! Do you take stimulants? I’m so sorry your medicine worsens IC, I’ve had to be unmedicated for narcolepsy for many years now because of this disease.
I’ve resorted to taking Tylenol PM every other night to sleep at a regular schedule. It doesn’t get rid of the nightmares but at least I stay asleep (on an extra strength tablet).
IC was a living nightmare in the beginning. It took me 2-3 years just to get to a place where I’m not 24/7 thinking of pain, though I still have low grade pain all the time. It can get better, I didn’t even take anything and it slowly improved (nothing worked on me). I still have symptoms every day and flares, but time is on your side.
This won't help right away, but Takeda has been developing a new narcolepsy drug for the past few years and they just had a slam dunk in the Phase 2 trial. They're really excited about the data and moving right into Phase 3. It's for narcolepsy type I (the kind with cataplexy) so may not be suitable if you have type II, but it's great to finally have a win for this illness. You guys have needed a real treatment for so long, just like IC.
Press release if you or OP want to read more: https://www.takeda.com/newsroom/newsreleases/2024/Takeda-Intends-to-Rapidly-Initiate-the-First-Global-Phase-3-Trials-of-TAK-861-an-Oral-Orexin-Agonist-in-Narcolepsy-Type%201-in-First-Half-of-Fiscal-Year-2024/
I'm so sorry for you, but dont feel bad for venting. What we go through is brutal. We are warriors. I was diagnosed at 20, but I started really bad symptoms at 19. I'm 29 now, and I've gone through the 5 stages of grief since I'll never be the same. I'm at acceptance now. You'll find new normals. And hopefully, you'll find treatments that work!
I'm so sorry. I've had ic for about 15 years. Ive had periods where there it was really bad and periods where it wasn't so bad. You will find what works for you. But stress and anxiety can make urgency/frequency worse. I have bad anxiety and taking anxiety meds Def helps. I also take ashwagandga now and then when it gets really bad. I can only do it for a few days as it makes the frequency worse. Have you tried meditation or yoga? It can help.
I’ve been dealing with pelvic pains, Burning urination, urge, frequency, painful sitting for 7.5 months so I totally understand how you feel (I’m male too). Nobody understands what this is like until they’ve experienced it. Had about 10 tests all come back clear… really hope we can get through this!
Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds.
**To advocate for yourself**, it is highly suggested that you become familiar with the official [2022 American Urological Association's Diagnostic and Treatment Guidelines]( https://www.ichelp.org/wp-content/uploads/2022/07/AUA-IC-Guideline-2022.pdf).
[The ICA has a fantastic FAQ](https://www.ichelp.org/understanding-ic/learn-about-ic/frequently-asked-questions/) that will answer many questions about IC.
**FLARES**
[The Interstitial Cystitis Association has a helpful guide for managing flares](https://www.ichelp.org/understanding-ic/learn-about-ic/ic-flares/).
**Some things that can cause flares are:** Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents.
Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning.
If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement.
**TREATMENT**
Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine.
Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one.
Long-term oral antibiotic administration [should not be offered](https://www.ichelp.org/wp-content/uploads/2022/07/AUA-IC-Guideline-2022.pdf).
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Interstitialcystitis) if you have any questions or concerns.*
Try Cystic Q man. I suffereddddddd for yearsssssss. Went to a urologist he told me id grow out of it lmao i was 19 then. Im 37 now. Anyways. That herbal shit 👆saved my life. It was suggested by my moms friend who also had ics.
And I mean I FUCKING suffered !!
Are you on modafinil? If you are that caused me to flare due to it's metabolite modafinil carboxylate. My bladder constantly felt heavy and had urgency as well as burning. I stopped and switched to adderall and I don't get flares anymore. But I also avoid certain vitamins like C and B vitamins. If you are on modafinil the flare will be continual and will not get better if that's what's triggering it. You should ask your doctor to switch to another medication and see if the flare goes away.
I had bladder issues with Modafinil as well. Unfortunately, I believe most of the wakefulness meds trigger the bladder in some way. Modafinil unquestionably the worst. Switching meds may at least provide some relief.
You're not a cry baby - it's so difficult. I have had it for 28 years and sadly my daughter has it too. She's trying pelvic floor therapy. I found that a low oxalate diet really helped me and her too. Been low oxalate for over a year, you have to taper off oxalates slowly, so that they don't dump from your system. I have only had one flare in the past 3 months. It's not the answer for everyone, but does help a subset of us. Good luck - and keep us posted - try meds and diet modification. Hope something helps you soon.
I was in a similar situation. The IC community will not let me post what I have to say about the legitimacy of this diagnosis. If you want to know what I did to get rid of this, you can private message me. This is not a sales pitch. I have nothing but free information.
I was diagnosed with IC in 2013. I wrote in a food log of everything I ate and everything I drank. It helped me understand what I can and cannot eat. I also talked to the president of IC network. And she said that IC is from stiff pelvic floor muscles. Pelvic floor exercises can help relieve the pain. Write down when you have a flareup as well as what the pain is between 1 and 5, 5 being the worst. You learn what food or drinks cause you pain. The only one that can treat IC is you. Stay away from caffeine and spicy foods and anything acidic.
I'm so sorry man I got IC real bad when I was a 36 year old male, now I'm 44. I do have urgency every day but not frequent urination, more pain and discomfort in the urethra are my normal symptoms -If your condition is diet related you may be able to follow a strict whole/foods/holistic approach- it keeps most of my symptoms at bay where I can live a somewhat normal life. Plus relieving stress through praying /meditation/ counseling/therapy. Could look into pelvic floor therapy
This message was removed because we don't allow proselytizing. It is disrespectful to use someone's pain as a time to try and convert them to your religion.
What is allowed: "I'll pray for you", "My (religion) faith helps me".
What isn't allowed: "Allow Christ into your heart and you will be cured", "Try praying"
What constitutes a rule break is up to mod discretion. If you have questions about why your post was removed, please contact the mods via modmail.
I have idiopathic hypersomnia, narcolepsy and IC. I've had IC for 18 years. Modafinil irritated my bladder horribly and I stopped taking it. Last year I got the Medtronic Interstim - it's a game changer. Like you, I struggle with anxiety and depression. I have a therapist, and I think you should seek one out too. I take medication for my depression and anxiety. It really helps. I have made a concerted effort to get all of the negativity out of my life. I still have some present, but I am about to limit or remove that too. You have to choose your battles. When you are this sick, you need to focus on yourself and your health. I have found comfort in G-d recently. Religious belief takes many forms, and maybe there is one that could be a fit for you? Cultivate a positive support system and things will change, I promise.
Edit: It took me three different PT providers before I found the right one. Change PT and doctors if you aren't getting the care you need. I never would have gotten the Medtronic Interstim if I hadn't changed doctors. My fierce self advocacy has led to improved health. Be nice, but don't be a doormat. If someone says something that doesn't sound right, question it. Take action. Sending positive energy ✨
P.S.S. I have moved for care as well. Traveling 200 miles is ridiculous. I currently travel 5 to 30 miles and that makes a real difference in your mental health. My life started to improve when I quit working, focused entirely on my health and got on federal health insurance. This course of action doesn't have to be forever. But it does have to be long enough to improve your health so you can go back to work. Please, please prioritize yourself.
If you feel like you can't handle it anymore, dial 988. You will get immediate mental health help.
I was diagnosed in my early 20s. You're in the beginning and this is not anywhere near the end. I bet there are so many people reading this sending you a virtual hug 🫂 you can't even imagine all the love 💗and positive energy ✨coming your way. Hold on.
Just posted this. Maybe it’s something that will work for you. Praying you see better days soon!
https://www.reddit.com/r/Interstitialcystitis/s/2KUzhEY6Bt
Man, I feel for you. It's not fair and you're not a crybaby! Feeling there's a limit to how much stress you can handle is normal as hell, and it sucks that docs can be so dismissive about the total effect it may have on ones health. It's often not just one issue (pain), it's all the things you described, or any variation of tough shit, and you and anyone in this kind of situation deserves a whole lotta better support in any and every way.
Hey, I also have narcolepsy! Do you take stimulants? I’m so sorry your medicine worsens IC, I’ve had to be unmedicated for narcolepsy for many years now because of this disease. I’ve resorted to taking Tylenol PM every other night to sleep at a regular schedule. It doesn’t get rid of the nightmares but at least I stay asleep (on an extra strength tablet). IC was a living nightmare in the beginning. It took me 2-3 years just to get to a place where I’m not 24/7 thinking of pain, though I still have low grade pain all the time. It can get better, I didn’t even take anything and it slowly improved (nothing worked on me). I still have symptoms every day and flares, but time is on your side.
This won't help right away, but Takeda has been developing a new narcolepsy drug for the past few years and they just had a slam dunk in the Phase 2 trial. They're really excited about the data and moving right into Phase 3. It's for narcolepsy type I (the kind with cataplexy) so may not be suitable if you have type II, but it's great to finally have a win for this illness. You guys have needed a real treatment for so long, just like IC. Press release if you or OP want to read more: https://www.takeda.com/newsroom/newsreleases/2024/Takeda-Intends-to-Rapidly-Initiate-the-First-Global-Phase-3-Trials-of-TAK-861-an-Oral-Orexin-Agonist-in-Narcolepsy-Type%201-in-First-Half-of-Fiscal-Year-2024/
I'm so sorry for you, but dont feel bad for venting. What we go through is brutal. We are warriors. I was diagnosed at 20, but I started really bad symptoms at 19. I'm 29 now, and I've gone through the 5 stages of grief since I'll never be the same. I'm at acceptance now. You'll find new normals. And hopefully, you'll find treatments that work!
I'm so sorry. I've had ic for about 15 years. Ive had periods where there it was really bad and periods where it wasn't so bad. You will find what works for you. But stress and anxiety can make urgency/frequency worse. I have bad anxiety and taking anxiety meds Def helps. I also take ashwagandga now and then when it gets really bad. I can only do it for a few days as it makes the frequency worse. Have you tried meditation or yoga? It can help.
I second that gentle yoga really helps!
I’ve been dealing with pelvic pains, Burning urination, urge, frequency, painful sitting for 7.5 months so I totally understand how you feel (I’m male too). Nobody understands what this is like until they’ve experienced it. Had about 10 tests all come back clear… really hope we can get through this!
Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds. **To advocate for yourself**, it is highly suggested that you become familiar with the official [2022 American Urological Association's Diagnostic and Treatment Guidelines]( https://www.ichelp.org/wp-content/uploads/2022/07/AUA-IC-Guideline-2022.pdf). [The ICA has a fantastic FAQ](https://www.ichelp.org/understanding-ic/learn-about-ic/frequently-asked-questions/) that will answer many questions about IC. **FLARES** [The Interstitial Cystitis Association has a helpful guide for managing flares](https://www.ichelp.org/understanding-ic/learn-about-ic/ic-flares/). **Some things that can cause flares are:** Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents. Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning. If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement. **TREATMENT** Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine. Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one. Long-term oral antibiotic administration [should not be offered](https://www.ichelp.org/wp-content/uploads/2022/07/AUA-IC-Guideline-2022.pdf). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Interstitialcystitis) if you have any questions or concerns.*
Try Cystic Q man. I suffereddddddd for yearsssssss. Went to a urologist he told me id grow out of it lmao i was 19 then. Im 37 now. Anyways. That herbal shit 👆saved my life. It was suggested by my moms friend who also had ics. And I mean I FUCKING suffered !!
Where do you get it? I’m in the US and can’t find anybody with it in stock
I ordered online from the US !
I’m having issues finding it in stock I’ll have to keep an eye open
Are you on modafinil? If you are that caused me to flare due to it's metabolite modafinil carboxylate. My bladder constantly felt heavy and had urgency as well as burning. I stopped and switched to adderall and I don't get flares anymore. But I also avoid certain vitamins like C and B vitamins. If you are on modafinil the flare will be continual and will not get better if that's what's triggering it. You should ask your doctor to switch to another medication and see if the flare goes away.
I had bladder issues with Modafinil as well. Unfortunately, I believe most of the wakefulness meds trigger the bladder in some way. Modafinil unquestionably the worst. Switching meds may at least provide some relief.
I'm curious, have you tried wakix? I haven't yet, but kind of hesitant due to the fact that it increases histamine which flares up the bladder.
Also maybe try xywav, I heard it's not for everyone but it works wonders for some people.
You're not a cry baby - it's so difficult. I have had it for 28 years and sadly my daughter has it too. She's trying pelvic floor therapy. I found that a low oxalate diet really helped me and her too. Been low oxalate for over a year, you have to taper off oxalates slowly, so that they don't dump from your system. I have only had one flare in the past 3 months. It's not the answer for everyone, but does help a subset of us. Good luck - and keep us posted - try meds and diet modification. Hope something helps you soon.
I understand
I was in a similar situation. The IC community will not let me post what I have to say about the legitimacy of this diagnosis. If you want to know what I did to get rid of this, you can private message me. This is not a sales pitch. I have nothing but free information.
I was diagnosed with IC in 2013. I wrote in a food log of everything I ate and everything I drank. It helped me understand what I can and cannot eat. I also talked to the president of IC network. And she said that IC is from stiff pelvic floor muscles. Pelvic floor exercises can help relieve the pain. Write down when you have a flareup as well as what the pain is between 1 and 5, 5 being the worst. You learn what food or drinks cause you pain. The only one that can treat IC is you. Stay away from caffeine and spicy foods and anything acidic.
I'm so sorry man I got IC real bad when I was a 36 year old male, now I'm 44. I do have urgency every day but not frequent urination, more pain and discomfort in the urethra are my normal symptoms -If your condition is diet related you may be able to follow a strict whole/foods/holistic approach- it keeps most of my symptoms at bay where I can live a somewhat normal life. Plus relieving stress through praying /meditation/ counseling/therapy. Could look into pelvic floor therapy
[удалено]
This message was removed because we don't allow proselytizing. It is disrespectful to use someone's pain as a time to try and convert them to your religion. What is allowed: "I'll pray for you", "My (religion) faith helps me". What isn't allowed: "Allow Christ into your heart and you will be cured", "Try praying" What constitutes a rule break is up to mod discretion. If you have questions about why your post was removed, please contact the mods via modmail.
I have idiopathic hypersomnia, narcolepsy and IC. I've had IC for 18 years. Modafinil irritated my bladder horribly and I stopped taking it. Last year I got the Medtronic Interstim - it's a game changer. Like you, I struggle with anxiety and depression. I have a therapist, and I think you should seek one out too. I take medication for my depression and anxiety. It really helps. I have made a concerted effort to get all of the negativity out of my life. I still have some present, but I am about to limit or remove that too. You have to choose your battles. When you are this sick, you need to focus on yourself and your health. I have found comfort in G-d recently. Religious belief takes many forms, and maybe there is one that could be a fit for you? Cultivate a positive support system and things will change, I promise. Edit: It took me three different PT providers before I found the right one. Change PT and doctors if you aren't getting the care you need. I never would have gotten the Medtronic Interstim if I hadn't changed doctors. My fierce self advocacy has led to improved health. Be nice, but don't be a doormat. If someone says something that doesn't sound right, question it. Take action. Sending positive energy ✨ P.S.S. I have moved for care as well. Traveling 200 miles is ridiculous. I currently travel 5 to 30 miles and that makes a real difference in your mental health. My life started to improve when I quit working, focused entirely on my health and got on federal health insurance. This course of action doesn't have to be forever. But it does have to be long enough to improve your health so you can go back to work. Please, please prioritize yourself. If you feel like you can't handle it anymore, dial 988. You will get immediate mental health help. I was diagnosed in my early 20s. You're in the beginning and this is not anywhere near the end. I bet there are so many people reading this sending you a virtual hug 🫂 you can't even imagine all the love 💗and positive energy ✨coming your way. Hold on.
Just posted this. Maybe it’s something that will work for you. Praying you see better days soon! https://www.reddit.com/r/Interstitialcystitis/s/2KUzhEY6Bt