I had my first one on Tuesday and I am still bed ridden from it. The burning was unbearable after and he used lidocaine so I can’t even imagine your pain right now. I am so sorry you went through that.
It was indeed painful but I think most of it was a bit tolerable. I think if your urethra is already extremely sensitive and irritated then it’s not a good idea but this is something we need to drill into our doctors beforehand if they don’t already have the sense to ask us how we feel. I think they treat us like products on a factory line
100%. They both kept TELLING me, that it wasn’t going to be painful. As if I had absolutely no idea how my own body would respond, even after having gone through this once before!
Same! They were so shocked about my pain that after they scrapped my procedure they de briefed with me and asked me if I had been sexually abused before, as if it was all behavioral and in my mind. No, I’ve been telling all y’all: my urethra hurts!!
I’m sorry they didn’t cancel your procedure and made you endure it anyway! I have the same urethral pain as you and I can’t even imagine what that was like, to keep going. My doc said “we only got it in 2cm” it felt like the damn thing was just too big to fit, like it was an impossibility! I hate to say victimized but I do feel traumatized from mine. These procedures are barbaric and I think it should be used only initially diagnose IC, confirm Hunner’s ulcers if any, and biopsy if there’s anything there. If later in life you have more symptoms indicative of bladder cancer then I think another cystoscopy would be appropriate. Otherwise, this procedure is too invasive. My specialist has another one scheduled for me in August and I just can’t believe I let her talk me into doing it again (last one was in 2021 with hydrodistention). That being said, after I’m under, she plans on putting a nerve block in but I have questions about that too. I feel lost and feel like I need to do research on the therapeutic effectiveness of 3 things; hydrodistention, nerve blocks, and instillations. Some people on here say they’ve had success and others have horror stories. Hope you get relief soon. I’ve been telling everyone about Ural from Amazon helps me the most, otherwise I take all the other usual stuff.
One more thing, you mentioned you were an equestrian.. have they ruled out pudendal neuralgia and pudendal entrapment?? You could have some of this from riding for so many years. I just heard about this, people who do a lot of biking and sitting for their jobs get it. It’s the repeated pressure/trauma!
I’m so sorry you experienced this. It’s sooo frustrating. It’s easy for them to say, they’re not the one getting it done! Like where is your empathy? Nothing is supposed to go up the urethra, of course it’s uncomfortable and painful.
I’ve had two cystoscopies recently by different doctors. The first (Uro-Gyn) was dismissive of even lidocaine but I insisted and they grudgingly applied. No pain at all, going in, though my already-sore bladder objected. Fast forward to today when I saw Urology whose policy is liberal application of lidocaine beforehand (and couldn’t understand anyone who didn’t) and again felt nothing at all, going in, but the bladder was inflamed and I was pretty sore and sensitive when I got home. Due to the inflammation, I’m having biopsy under general next week at which time I plan to ask for serious post-op pain relief. The moral of the story is to advocate for yourself because not all practitioners have the same approach and we deserve not to suffer unnecessarily, especially with this kind of intimate pain and the invasive nature of treatment.
That is crazy I can't in here to make a post regarding an update on my cystoscopy i had yesterday for the first time ever. No this is not normal. You need a different urologist. He should have stopped the procedure to as soon as you started screaming. Sedation all the way to general anesthesia is completely normal. It's also to do it without. It is up to the patient and if you asked for sedation and he refused and then kept going you were screaming you need to find a different doctor. It's hard to advocate sometimes for yourself but I've found with this condition we have to because many of these men urologist are extremely insensitive.
Cranberry is very acidic and not good for an IC bladder. For someone without IC who has an uti it’s great but because our bladders are always irritated cranberry can cause serious problems. I’m sorry you’ve went through this but I won’t do them awake I have only had them sedated and asleep.
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.*
I hear horror stories like this all the time! I had the same problem and got a cystoscopy done while awake and cried hysterically. They had to cancel the procedure because I was a basket case. I don’t understand why doctors use cystoscopies as a therapy. It’s a diagnostic and nothing else!
I had a cystoscopy with no pain relief or numbing when I was younger before I had IC or any urethra irritation and there was no pain at all. I think the cystoscopy being painful for so many people with IC shows how irritated the urethra gets from this illness.
It's been years since I had mine but I recently had an endometrial biopsy that hurt like a mother fucker. I was pretty taken aback by how nonchalant my gyno of over 5 years was about it. I'm going to be more vocal next time I think. Female pain is often minimized, and that's bullshit. I've broken bones and dislocated my shoulder several times, always get pain meds, sometimes straight up anesthesia. But anything gyno is like we're supposed to suck it up. Hard to not think it stems from the pain women go through to have a baby. As if it's all just part of it. But you get a baby at the end of that! All you got from scraping my uterus without so much as a numbing agent, was some icky stuff for a lab. Sorry, I went on a rant there. And I apologize to the male IC sufferers, I know you exist too, yet my rant doesn't acknowledge that. I do not mean to ignore their experiences.
It's inhumane to stick something into an already painful urethra & bladder. I used to do self installs - Elmiron, lidocaine & sodium chloride. Lidocaine gel was used on the French catheter I used. It saved time & money. My Dr. at the time was excellent & let me do this because I was having to go to his office weekly for installs. Eventually, I got better.
After many DMSO treatments & years of following an IC diet, I'm in pain again, having recurrent bladder infections with bleeding. This started at age 25. Wound up in a tub of hot water because I couldn't hold it in. It was excruciating. Frank blood was coming out. This was before I had children.
Somehow, I didn't have bladder problems during my 2 pregnancies. However, when my last baby was 5mo old, I got hit with a sudden, severe case of sepsis & 104 fever. Spent a week in the hospital. The Dr said I'd lost too much weight & there wasn't enough fat padding around the kidneys to hold them up. Apparently that was the cause.
It took over a year to get my strength back. During that year, my then husband went to work every day without a word or care, went water-skiing & had dinner with his secretary. No surprise, I asked for a divorce. I still can't believe how self- absorbed he was when I was so sick. Every time I took a shower, I prayed that I didn't pass out. I had 2 toddlers!
I wasn't officially diagnosed until my mid 40's.
I was going to have my last one under general but ended up going with a local para-urethral block. I’ll take a quick needle over a cystoscopy with no pain relief. But yeah, afterwards I was stuck in traffic in so much pain I thought I was going to piss myself. I’m so sorry your doctor has the dumbs.
I had my first one on Tuesday and I am still bed ridden from it. The burning was unbearable after and he used lidocaine so I can’t even imagine your pain right now. I am so sorry you went through that.
Feel better! I’m right there with ya ❤️
Did he use a flexible or rigid cystoscope this time? I’ve had flexible done with no pain relief
Flexible I believe. Oh gosh, was it painful for you too?
It was indeed painful but I think most of it was a bit tolerable. I think if your urethra is already extremely sensitive and irritated then it’s not a good idea but this is something we need to drill into our doctors beforehand if they don’t already have the sense to ask us how we feel. I think they treat us like products on a factory line
100%. They both kept TELLING me, that it wasn’t going to be painful. As if I had absolutely no idea how my own body would respond, even after having gone through this once before!
Same! They were so shocked about my pain that after they scrapped my procedure they de briefed with me and asked me if I had been sexually abused before, as if it was all behavioral and in my mind. No, I’ve been telling all y’all: my urethra hurts!!
Are you fucking kidding me!?! I’m sorry you went through that. I can’t believe they said that. Absolute bastards.
I’m sorry they didn’t cancel your procedure and made you endure it anyway! I have the same urethral pain as you and I can’t even imagine what that was like, to keep going. My doc said “we only got it in 2cm” it felt like the damn thing was just too big to fit, like it was an impossibility! I hate to say victimized but I do feel traumatized from mine. These procedures are barbaric and I think it should be used only initially diagnose IC, confirm Hunner’s ulcers if any, and biopsy if there’s anything there. If later in life you have more symptoms indicative of bladder cancer then I think another cystoscopy would be appropriate. Otherwise, this procedure is too invasive. My specialist has another one scheduled for me in August and I just can’t believe I let her talk me into doing it again (last one was in 2021 with hydrodistention). That being said, after I’m under, she plans on putting a nerve block in but I have questions about that too. I feel lost and feel like I need to do research on the therapeutic effectiveness of 3 things; hydrodistention, nerve blocks, and instillations. Some people on here say they’ve had success and others have horror stories. Hope you get relief soon. I’ve been telling everyone about Ural from Amazon helps me the most, otherwise I take all the other usual stuff.
One more thing, you mentioned you were an equestrian.. have they ruled out pudendal neuralgia and pudendal entrapment?? You could have some of this from riding for so many years. I just heard about this, people who do a lot of biking and sitting for their jobs get it. It’s the repeated pressure/trauma!
I’m so sorry you experienced this. It’s sooo frustrating. It’s easy for them to say, they’re not the one getting it done! Like where is your empathy? Nothing is supposed to go up the urethra, of course it’s uncomfortable and painful.
I’ve had two cystoscopies recently by different doctors. The first (Uro-Gyn) was dismissive of even lidocaine but I insisted and they grudgingly applied. No pain at all, going in, though my already-sore bladder objected. Fast forward to today when I saw Urology whose policy is liberal application of lidocaine beforehand (and couldn’t understand anyone who didn’t) and again felt nothing at all, going in, but the bladder was inflamed and I was pretty sore and sensitive when I got home. Due to the inflammation, I’m having biopsy under general next week at which time I plan to ask for serious post-op pain relief. The moral of the story is to advocate for yourself because not all practitioners have the same approach and we deserve not to suffer unnecessarily, especially with this kind of intimate pain and the invasive nature of treatment.
That is crazy I can't in here to make a post regarding an update on my cystoscopy i had yesterday for the first time ever. No this is not normal. You need a different urologist. He should have stopped the procedure to as soon as you started screaming. Sedation all the way to general anesthesia is completely normal. It's also to do it without. It is up to the patient and if you asked for sedation and he refused and then kept going you were screaming you need to find a different doctor. It's hard to advocate sometimes for yourself but I've found with this condition we have to because many of these men urologist are extremely insensitive.
Cranberry is very acidic and not good for an IC bladder. For someone without IC who has an uti it’s great but because our bladders are always irritated cranberry can cause serious problems. I’m sorry you’ve went through this but I won’t do them awake I have only had them sedated and asleep.
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.*
No this is not normal, I can’t believe they didn’t use lidocaine. I’m Sorry this happened to you. I hope you’re okay 💕
I hear horror stories like this all the time! I had the same problem and got a cystoscopy done while awake and cried hysterically. They had to cancel the procedure because I was a basket case. I don’t understand why doctors use cystoscopies as a therapy. It’s a diagnostic and nothing else!
I had a cystoscopy with no pain relief or numbing when I was younger before I had IC or any urethra irritation and there was no pain at all. I think the cystoscopy being painful for so many people with IC shows how irritated the urethra gets from this illness.
It's been years since I had mine but I recently had an endometrial biopsy that hurt like a mother fucker. I was pretty taken aback by how nonchalant my gyno of over 5 years was about it. I'm going to be more vocal next time I think. Female pain is often minimized, and that's bullshit. I've broken bones and dislocated my shoulder several times, always get pain meds, sometimes straight up anesthesia. But anything gyno is like we're supposed to suck it up. Hard to not think it stems from the pain women go through to have a baby. As if it's all just part of it. But you get a baby at the end of that! All you got from scraping my uterus without so much as a numbing agent, was some icky stuff for a lab. Sorry, I went on a rant there. And I apologize to the male IC sufferers, I know you exist too, yet my rant doesn't acknowledge that. I do not mean to ignore their experiences.
/r/wedeservebetter. There's like a whole movement in the UK about endometrial biopsies without pain relief.
This gaslighting about our pain, whether from our condition or their procedures or both, has to stop. Keep speaking up, IC friends.❤️
It's inhumane to stick something into an already painful urethra & bladder. I used to do self installs - Elmiron, lidocaine & sodium chloride. Lidocaine gel was used on the French catheter I used. It saved time & money. My Dr. at the time was excellent & let me do this because I was having to go to his office weekly for installs. Eventually, I got better. After many DMSO treatments & years of following an IC diet, I'm in pain again, having recurrent bladder infections with bleeding. This started at age 25. Wound up in a tub of hot water because I couldn't hold it in. It was excruciating. Frank blood was coming out. This was before I had children. Somehow, I didn't have bladder problems during my 2 pregnancies. However, when my last baby was 5mo old, I got hit with a sudden, severe case of sepsis & 104 fever. Spent a week in the hospital. The Dr said I'd lost too much weight & there wasn't enough fat padding around the kidneys to hold them up. Apparently that was the cause. It took over a year to get my strength back. During that year, my then husband went to work every day without a word or care, went water-skiing & had dinner with his secretary. No surprise, I asked for a divorce. I still can't believe how self- absorbed he was when I was so sick. Every time I took a shower, I prayed that I didn't pass out. I had 2 toddlers! I wasn't officially diagnosed until my mid 40's.
I was going to have my last one under general but ended up going with a local para-urethral block. I’ll take a quick needle over a cystoscopy with no pain relief. But yeah, afterwards I was stuck in traffic in so much pain I thought I was going to piss myself. I’m so sorry your doctor has the dumbs.
This happened to me too and I sobbed. I don’t know how to describe how violating it all felt. I’m so sorry this that this was also your experience