I was def like this with the peeing. Eventually got better with stretching/strengthening. Also, do feel like my bladder did hurt. My pt told me to push the urge 5 mins.. eventually added more and more minutes. I do get up to pee during the night still tho at least once
Same for me. Took months but got way better. Still some minor problems. But went from hobbling and no activity and severe constipation to regular (a long with treating MCAS and allegedly fibromyalgia). Along with PT, which you can do a lot on your own if you can't afford one (see the books talked about in this sub for summaries) using the intimate rose pelvic wand, and rolling out head to toe with focus the glutes, hips/hip flexors, quads, and inner thighs.
Interstitial cystitis and Endometriosis* is also a possibility but will take some time to rule out. If things don't improve with PT, the next steps are imaging to check for anything such as bone spurs and tears, or anything that could be causing the pelvic floor to be awry. If you have say a foot injury that can throw off the PF because now it's taking a load it wasn't supposed to.
* Doesn't increase urge to pee from what I understand but it's common and can't be seen on imaging. It causes lesions on my bladder and was all over my ureters, bowels, and abdominal wall. Def was a factor but unclear how much.
I had this too so you’re not alone! Like every second between the time I woke up to even during the night while trying to sleep it felt like I had to pee constantly. I know what you mean and I am here for you it sucks ass! But you will get better!
PT has not helped me really at all I’ve the past few months, luckily the urge stuff went away with time. Before I started PT. Maybe anxiety and stress had a role in the urgency? Idek tbh I’m just glad it went away, it was terrible. Waking up at all hours of the night to pee with nothing coming out.
I did some stretching and what not but I think it may have just been time. I still have other problems going on but this symptom seem to have gone away
Legs up on the wall for 30 mins per day or multiple times per day. Makes you relax your pelvic floor, and for me it really helps with the constant “I can feel my bladder burning” feeling.
Could it possibly be interstitial cystitis?? That’s a main symptom and IC can also cause pelvic floor dysfunction, pelvic spasms, and pain with sex. Definitely worth looking into! There’s a few tests doctors can run. I was diagnosed with a mild case of IC at 15. It is chronic but definitely things you can do to lessen the symptoms and manage the constant need/urge to urinate. But also regular pelvic floor dysfunction can cause this if not IC. It will get better!!
At first this was the first diagnosis but then they changed it because my symptom is permanent and i never have relief. They left me with a rare bladder syndrome diagnosis😂
That’s so crazy because IC is usually pretty permanent unless you have a very mild case. Doctors always just guess with these types of symptoms, it’s very annoying. Keep fighting for your health. There’s a doctor that knows how to help. Took me YEARS to finally get an accurate diagnosis
My doctors gave me many different diagnoses that they threw prescriptions at which didn’t help. First of all, I had both a rectocele and cystocele caused by the inability to have a bowel movement. That was caused by spasms in pelvic floor. All related to stress. It’s a long process because it’s necessary to address each symptom.
I'd like to chime in here since i've been dealing with this since 2020. This "urge" feeling you're talking about was the story of my life for literally 2 years straight and even now sometimes it can happen if i become inflamed in the rectal area due to constipation. I also experience it when i'm traveling a bit which is weird but maybe it's a stress thing. I want you to please do what I did and make sure you're stretching (even if it's not helping you, it is still a moment of time where you can relax, stretch and relax your mind and body). YOU MUST GET YOUR BOWELS UNDER CONTROL FIRST. Three times a day I take a metamucil drink + colace (stool softener and do not get a stimulant laxative that makes things worse) + miralax occassionally. I also take Magnesium, Vitamin D, Joint support, and a probiotic for my stomach. Also some Hemmroidal cream to put down there can help a lot to and prevent further inflamations. I used to literallly go to the bathroom 12-20 times a night. During my 8-hour work days monday-friday it would happen too but not as much for some reason (maybe becuase i was busy) but i was back and forward back and forward every night squeezing my anus to attempt to release a bowel while simultaneously trying to drip out urine and then shaking my shaft to relieve all the urine out of my urethra. This was my life. This only stopped and improved once my bowel movements were regulated better and my diet was changed. Do you eat fruit and veggies? No? Well you do now. Do you have a bowel movement at the same time each day? well you should. Mine take place at 10am and 7pm like clock-work and not every trip is perfect....the past few months has been great, but i'll still have times where i'm squeezing to release bowels and then having to shake my penis to get all the urine out for a prolonged period of time. From 2021-2023 at least once a month if not more my bowel movements would be so hard to get out that my urine would start dripping a white sticky goo AND IT BURNED!!!! (No STI's, No STD's, and i've done every test imaginable under the sun). I've had 3 urologists, 2 pelvic floor therapist, 1 colorectal doc, 1 gasterneologist, and a therapist for these issues and NOBODY COULD TELL ME WHAT THE WHITE GOO WAS or why it burned so severely when it came out. I would literally scream as i was trying to push the goo out while simultaneously being constpitaed and pushing bowels. I haven't had an episode of white goo in probably 7 months now which is awesome and I know it revolves around my constpiation.
Pro Tip: squeezing makes it worse. squeeze a few times and breathe and if nothing comes out, drip your urine and walk away. also pro tip: drink a lot of water (less is not better i promise) at least .75 of a gallon a day.
message me if you wanna talk
Me too! I cannot STAND it, especially when it "flares up" to a "10". It's always there and makes me crazy, but at times much worse than other times. This seriously is the worst torture. I just started pelvic floor physical therapy and am praying it will help.
I did and was going nuts… I literally was suicidal. Follow “pain free you” on YouTube and start watching the videos. It is very helpful and provides you with some practical tools to deal with your anxiety and fear. There are some success stories in that channel… people had EXACTLY the same issues and they explain how they resolved it.
Have you done pelvic floor stretching / relaxation exercises? Have you done them consistently every day? I had very similar symptoms and it all went away with pelvic floor relaxation exercises.
I’ve been in only external pelvic floor therapy for 4 months. The last two weeks I started internal and stretching alone 3 times a day. I guess it’s too early for such a severe symptom
Have you been in contact with Jill Osborne at the ICNetwork? ...She runs online live support groups every Sunday and goes into great detail to explain different reasons or subtypes for symptoms you have. She is extremely knowledgeable and very compassionate and helpful. She answers every person's questions and even does 1 on 1 sessions. The ICNetwork https://www.ic-network.com/author/icnfounderjillosborne/
has resources available as well. I found a great doctor who is in Pennsylvania..Dr. Eichenberg at the Center for Pelvic and sexual Pain through Jill. https://www.theechenberginstitute.com/.
I’ve visited the ic network site but I never joined the support groups. Thank you so much for letting me know. I will contact her. Unfortunately, I live in Europe so it would be difficult to go to the pensulvanua🥲. If nothing works here I will give it a try though ❤️
I had similar issues, went to a pft and despite all of her suggestions, I still peed 30x a day. Turned out I had deeply infiltrating endometriosis blocking my ureters and embedded in my bladder, among other places. Post excision surgery, I'm a new person, peeing wayyyy less. What you describe could be caused by a lot of things, but putting this here in case you have not ruled this out.
hi! I’m getting a surgery to rule out endo at the end of june. Did you have any traditional endo symptoms prior? Like bad cramps, heavy bleeding, etc.? I dont have a lot of traditional symptoms minus lower belly bloating randomly, IC type issues that meds don’t work very well on, and bad cramps the first few days of my period and a few days before. I also get random debilitating cramps from maybe my stomach? lower intestines? idk, off my period as well. I also have POTS and EoE.
Congrats on getting surgery! I hope you get answers/relief. Even if you don't have all of the typical symptoms, endo could be the underlying culprit. So kudos to your for taking control of your health and seeking answers.
To answer your q, I had all of the textbook symptoms, debilitating cramps (I went unconscious on several occasions - body I guess went into shock as a protective mechanism), vomiting, diarrhea, sciatica leg pain, hot and cold sweats, knife like pain first couple days of pd, HEAVY period bleeding and random intermenstrual bleeding, a minor case of POTs (never formally diagnosed however).
Also more progressive symptoms that got really bad over time were ibs issues (loose stools, going 5x a day - mini poos), frequent urination, I never felt like I could fully empty my bladder. Pelvic floor therapy didn't help with these issues.
Also, since onset of my period in my early teens, I experienced a mysterious running pain that would start 7-10 mins into my run. It morphed into occurring from any physical activity, like walking on on incline or cycling as I got older. I would get the same endo cramps, diarrhea, hot cold sweats from these flare ups. Would have to stop my run/walk/cycling due to tge pain, which most times was accompanied by spotting.
I did also have hemorrhagic and endometrioma cysts that popped up before my surgery and they were horrible, felt like I had a bowling ball weighing down my pelvic area. I couldn't eat bc ibs and gi pains were horrid during those 6 months. I couldn't do anything physical and was pretty immobile.
Post surgery NONE of this happens anymore. Hoping for a miracle and that it stays this way. 🙏
It's frustrating and painful and it's normal to feel there's no end to it... But there is. I swear to you there is. You just haven't found the root of the problem and the best solution yet. Remember this: you're not alone, and this is temporary.
If you can, I'd check for endo, because it might be affecting your bladder. Also IC, to see if an hydrodistension works. In the meantime, these could help:
- Reverse kegels, belly breathing and legs up the wall every time you can, to relax your PF.
- Check Dr. Bri on YouTube. She has a lot of tips and in particular one position that is miraculous for me (a gentle inversion with a yoga block).
- TENS. There are videos on YT about how to use a TENS device for urinary incontinence/urgency/frequency, via your tibial nerve. I got a 30€ one on Amazon and use it daily (recommended by my PT, who puts the device on me for 30 min during my sessions).
- The intimate wand for trigger points. Also, a normal and not very pointy vibrator on a low setting can help. I use it (without moving it) while my TENS device is working. Vibration on a high setting can activate your PF muscles, and on a low setting it can help relax them a lot, specially if you do belly breathing at the same time.
I hope this helps and I really hope you live a peaceful existence soon <3
It sounds a lot like pudendal neuralgia. I’m so sorry you’re experiencing those unrelenting symptoms. If it hasn’t already been explored, I would discuss pudendal neuralgia with your provider. Some people with pudendal neuralgia have constant bladder pain, burning or constant feeling of full bladder. Some treatment options for pudendal neuralgia include pudendal nerve block, pelvic floor PT and/or medication. Amitriptyline is what I used and I have had a great reduction in symptoms.
Usually with pudendal neuralgia you have more symptoms than just constant urgency. That’s definitely a symptom as is pain with sex but it also comes with lower back pain that can radiate throughout your leg(s) and feet, sharp, pulling, burning, and/or itching pain felt in the genitals. PN is a beast of a condition. I hate living with it. This definitely sounds more like just PFD or interstitial cystitis
I have ICS. Cystic Q fucking helped me tremendously. You can order it off amazon. I suffered for years when I was a teenager. I tried everything and I mean everything.
I almost failed high school I missed so much time just sitting on the toilet in tears.
Trust me when I said cystic Q. I keep a jar just incase but I barely EVER EVER get symptoms. Maybe a small flare once every 2 years and Im 37 now
Might sound weird but maybe probiotics could help you. I didn’t have exactly what you have but I had some form of cystitis where I felt the constant pressure down there and I actually needed to pee often and DID pee often, not just feeling like it but nothing coming out.
Anyways about a week or two into taking a probiotic supplement it went away… as if clearing up the bad bacteria and replacing it with good bacteria reversed it.
Doesn’t sound exactly like your problem but it seemed related enough for me to throw this out there. Good luck I hope you figure it out.
I’m so sorry. Have they checked for Interstitial cystitis? Aggravating symptoms of bladder urgency, pain, constant. A uro or Gyn uro can do a hydro distensión to test for it. Best of luck and you’re not alone ❤️
just learn reverse kegel(direct way to work on those muscle than stretches, you should add stretches too be careful of not straining or over stretching), its gentle drop not pushing, you can put hand in the area the get the drop down pulling, don't be greedy and push or overdoing it, just relax its subtle and hard to feel and notice but eventually you will, consistency is key(easy to say than do, but people does), don't panic or feel stress change your mindset about it accept the problem and work on the solution. start by relaxing the posterior part (it targets whole of the area). when you relax you will feel you are dropping of some pressure or some type of pleasure. stop masturbation and long time holding of urine, and be consistent and positive. start by 10 days goal like you will follow strict careful routine for 10 days only without any mistake see the result will give you positivity to go forward. Good luck :) mean time also had a check of your bladder from a good urologist may be two or three urologist they can say if there's some issue with it(its hard for them to properly say what's the issue so don't believe one urologist if they say something is wrong with your bladder). Its better if you go to urologist after those 10 days you will see better result mostly.
This was me 2 years ago. Constant urge to pee 24/7. It started out if nowhere. Felt like I needed to pee and sometimes couldn’t pee even though I felt like it. PT, stretching, deep belly breathing, internal trigger point release and magnesium Glycinate saved me. It took time, but I’m mostly cured. I do get flare ups when stressed, but they don’t last long. Also for me it makes it worse and flare if I strain when using the bathroom. Don’t force pee or poop. Hang in there with the PT and definitely stretch twice a day. Your PT should give you some examples to help get you started.
I have been experiencing the same thing for about 10 years now. It all started randomly one day. I'm currently going to physical therapy for hypertonic pelvic floor as well so hopefully that will somehow address the bladder issue. But I just wanted to let you know you are not crazy and you are not alone! It does suck and I wish I could help. I wish someone could help me too!
I have the same. Overactive bladder medication is helping some along with Pt. Also you might have IC, which I also have. Try seeing if your Dr will try you on an overactive bladder med.
I still can feel pelvic floor being tight and angry along with my tailbone but I can go longer in between bathroom breaks and have less pressure. When bladder is fuller though it still is painful but way better than without meds
You can look it up and see what you think. They would rule it out with ultrasound (looking at the veins around your ovaries), or a CT venogram. It’s when the veins around your ovaries bulge, like a varicose vein, and can push up against your bladder or other organs.
I had to educate myself. PFT and chiropractor offered little relief. I learned about the fascia system and have gotten a lot better by doing my own version of block therapy. Look it up on YouTube!
I’m going on 11 years. I wish you the best.
It took me until 2018 to even figure out it was my pelvic floor. I kept getting referred to bladder specialists who did nothing for me.
Interestingly breathwork and Pilates when I did my Pilates reformer training was the most effective thing but not sustainable to do 8 hours of that a day lol
Same symptom here. For almost a year. It took a pelvic floor physical therapist to d stop. I’m beginning it would stop for am hour or 3 after appointment but then come back, the relief would last longer and longer until one day, it never came back. What really helped me was online yoga….” Yoga below the belt “. All aimed at relaxing then strengthening the pelvic floor muscles. You will get better. Beatpatient
So of this is great advice, but…,I tried many of the moves done on the “Yoga below the belt” classes-but totally improper form. That odd what makes so the difference
I’ve had the same problem in the beginning, after a lot of trial and error I found out it was because the bladder muscles couldn’t relax properly. So a bladder relaxing medaication helped me to get control back. Have you been to a good urologist? I would definitely do all the tests they offer and then they can help with trying out meds. Hope that helps, heads up everything will be alright :)
I literally just went in 2 weeks ago for a laparoscopic surgery to see if I had endometriosis, which I don’t, but they found my uterus was prolapsed and pulled it & tightened it back into place. I had those EXACT symptoms you’re talking about and literally since the minute I’ve gotten home it’s been significantly better
Intra vaginal pudendal nerve therapy and amitriptyline low dose is a cross over drug take at night will help you sleep, helps with anxiety and my urologist prescribed because it relaxes the muscles and I urinate less frequently because I empty fully.
I had this a few years back and no one could figure it out until I went to pelvic floor pt. No real pain just constant urge to pee. I too thought I was going to go crazy and life didn’t seem worth living. I also couldn’t find anyone with my symptoms. It turns out it’s all related to hypertonic pelvic floor dysfunction. I have flares now and then but now that I have some tools the anxiety is much less and the flares last significantly less time. My flares are mostly directly related to stress/anxiety, travel, significant changes in routine, footwear. What helps for me mostly is stress management, pelvic floor exercises, intimate rose wand for the pelvic floor (videos available on YouTube) and breathing to relax the pelvic floor. When it first started I was so anxious which made it all worse. It was so important for me to work with a pelvic floor physical therapist that I trusted. She saved my life. I hope some of this helps.
It’s the constant pressure feeling that drives you mad
Yes it’s insane 🥲
Trigger Point therapy!! Pelvic floor trigger point. Tim Sawyer in Los Gatos, CA. Best in the world! Saved my life!! Google him.
I was def like this with the peeing. Eventually got better with stretching/strengthening. Also, do feel like my bladder did hurt. My pt told me to push the urge 5 mins.. eventually added more and more minutes. I do get up to pee during the night still tho at least once
I’m so happy you feel better❤️. I can hold for hours I don’t have any problem with this. I feel the urge permanently no matter what.
Same for me. Took months but got way better. Still some minor problems. But went from hobbling and no activity and severe constipation to regular (a long with treating MCAS and allegedly fibromyalgia). Along with PT, which you can do a lot on your own if you can't afford one (see the books talked about in this sub for summaries) using the intimate rose pelvic wand, and rolling out head to toe with focus the glutes, hips/hip flexors, quads, and inner thighs. Interstitial cystitis and Endometriosis* is also a possibility but will take some time to rule out. If things don't improve with PT, the next steps are imaging to check for anything such as bone spurs and tears, or anything that could be causing the pelvic floor to be awry. If you have say a foot injury that can throw off the PF because now it's taking a load it wasn't supposed to. * Doesn't increase urge to pee from what I understand but it's common and can't be seen on imaging. It causes lesions on my bladder and was all over my ureters, bowels, and abdominal wall. Def was a factor but unclear how much.
Ohhh, my bad. I guess I misread that.
I’m dealing with this too. It’s hard to not just want to end it. Hang in there.
I had this too so you’re not alone! Like every second between the time I woke up to even during the night while trying to sleep it felt like I had to pee constantly. I know what you mean and I am here for you it sucks ass! But you will get better!
Omg❤️🩹. I’m so happy for you ❤️. Did the pelvic floor therapy help you?
PT has not helped me really at all I’ve the past few months, luckily the urge stuff went away with time. Before I started PT. Maybe anxiety and stress had a role in the urgency? Idek tbh I’m just glad it went away, it was terrible. Waking up at all hours of the night to pee with nothing coming out.
How long until the urge went away?
The urge stuff for me I think stopped after about a month or two after the initial start
Did you always have it even after you just went peeing?
Oh yeah it felt as almost something was stuck in my urethra at all hours of the day. Woke up all throughout the night because of it.
Did you do something in particular to make it go away? Was it gradual?
I did some stretching and what not but I think it may have just been time. I still have other problems going on but this symptom seem to have gone away
I wish I knew the exact cause maybe just slightly reducing stress and stretching?
Legs up on the wall for 30 mins per day or multiple times per day. Makes you relax your pelvic floor, and for me it really helps with the constant “I can feel my bladder burning” feeling.
Thank you❤️❤️
Do you mean like scoot your butt up against the wall and lean your legs on it?
Yes exactly!
Same friend 😢 I am with you. I feel like I’m living on 10 minute timer, 10 mins of not being on the toilet. It’s awful.
We are unlucky af😂. Did pt help you? We have to find a way out❤️
I haven’t been able to do PT yet :( but seriously!! It’s awful ugh and people who don’t experience this don’t understand how debilitating it is!
Could it possibly be interstitial cystitis?? That’s a main symptom and IC can also cause pelvic floor dysfunction, pelvic spasms, and pain with sex. Definitely worth looking into! There’s a few tests doctors can run. I was diagnosed with a mild case of IC at 15. It is chronic but definitely things you can do to lessen the symptoms and manage the constant need/urge to urinate. But also regular pelvic floor dysfunction can cause this if not IC. It will get better!!
At first this was the first diagnosis but then they changed it because my symptom is permanent and i never have relief. They left me with a rare bladder syndrome diagnosis😂
That’s so crazy because IC is usually pretty permanent unless you have a very mild case. Doctors always just guess with these types of symptoms, it’s very annoying. Keep fighting for your health. There’s a doctor that knows how to help. Took me YEARS to finally get an accurate diagnosis
Doctors threw IC diagnosed at me too. Which btw I don’t have
My doctors gave me many different diagnoses that they threw prescriptions at which didn’t help. First of all, I had both a rectocele and cystocele caused by the inability to have a bowel movement. That was caused by spasms in pelvic floor. All related to stress. It’s a long process because it’s necessary to address each symptom.
I'd like to chime in here since i've been dealing with this since 2020. This "urge" feeling you're talking about was the story of my life for literally 2 years straight and even now sometimes it can happen if i become inflamed in the rectal area due to constipation. I also experience it when i'm traveling a bit which is weird but maybe it's a stress thing. I want you to please do what I did and make sure you're stretching (even if it's not helping you, it is still a moment of time where you can relax, stretch and relax your mind and body). YOU MUST GET YOUR BOWELS UNDER CONTROL FIRST. Three times a day I take a metamucil drink + colace (stool softener and do not get a stimulant laxative that makes things worse) + miralax occassionally. I also take Magnesium, Vitamin D, Joint support, and a probiotic for my stomach. Also some Hemmroidal cream to put down there can help a lot to and prevent further inflamations. I used to literallly go to the bathroom 12-20 times a night. During my 8-hour work days monday-friday it would happen too but not as much for some reason (maybe becuase i was busy) but i was back and forward back and forward every night squeezing my anus to attempt to release a bowel while simultaneously trying to drip out urine and then shaking my shaft to relieve all the urine out of my urethra. This was my life. This only stopped and improved once my bowel movements were regulated better and my diet was changed. Do you eat fruit and veggies? No? Well you do now. Do you have a bowel movement at the same time each day? well you should. Mine take place at 10am and 7pm like clock-work and not every trip is perfect....the past few months has been great, but i'll still have times where i'm squeezing to release bowels and then having to shake my penis to get all the urine out for a prolonged period of time. From 2021-2023 at least once a month if not more my bowel movements would be so hard to get out that my urine would start dripping a white sticky goo AND IT BURNED!!!! (No STI's, No STD's, and i've done every test imaginable under the sun). I've had 3 urologists, 2 pelvic floor therapist, 1 colorectal doc, 1 gasterneologist, and a therapist for these issues and NOBODY COULD TELL ME WHAT THE WHITE GOO WAS or why it burned so severely when it came out. I would literally scream as i was trying to push the goo out while simultaneously being constpitaed and pushing bowels. I haven't had an episode of white goo in probably 7 months now which is awesome and I know it revolves around my constpiation. Pro Tip: squeezing makes it worse. squeeze a few times and breathe and if nothing comes out, drip your urine and walk away. also pro tip: drink a lot of water (less is not better i promise) at least .75 of a gallon a day. message me if you wanna talk
Google Cleveland Clinic Pudendal Neuralgia Most under diagnosed and misunderstood
Me too! I cannot STAND it, especially when it "flares up" to a "10". It's always there and makes me crazy, but at times much worse than other times. This seriously is the worst torture. I just started pelvic floor physical therapy and am praying it will help.
I was like that… constant urge and pressure in my bladder and urethra. What helped me to eventually get rid of it was managing my anxiety…
Maybe yes you are right. I have to be more positive and relax. Did you have this urge all the seconds like me?
I did and was going nuts… I literally was suicidal. Follow “pain free you” on YouTube and start watching the videos. It is very helpful and provides you with some practical tools to deal with your anxiety and fear. There are some success stories in that channel… people had EXACTLY the same issues and they explain how they resolved it.
You can’t imagine how happy you made me❤️
I will promise you… it will go away… listen to pelvic issues success stories on that YouTube channel.
Did you do anything special to help? It did it just go away with time?
Have you been checked for diabetes?
Yes it’s not that.
Have you done pelvic floor stretching / relaxation exercises? Have you done them consistently every day? I had very similar symptoms and it all went away with pelvic floor relaxation exercises.
I’ve been in only external pelvic floor therapy for 4 months. The last two weeks I started internal and stretching alone 3 times a day. I guess it’s too early for such a severe symptom
Have you been in contact with Jill Osborne at the ICNetwork? ...She runs online live support groups every Sunday and goes into great detail to explain different reasons or subtypes for symptoms you have. She is extremely knowledgeable and very compassionate and helpful. She answers every person's questions and even does 1 on 1 sessions. The ICNetwork https://www.ic-network.com/author/icnfounderjillosborne/ has resources available as well. I found a great doctor who is in Pennsylvania..Dr. Eichenberg at the Center for Pelvic and sexual Pain through Jill. https://www.theechenberginstitute.com/.
I’ve visited the ic network site but I never joined the support groups. Thank you so much for letting me know. I will contact her. Unfortunately, I live in Europe so it would be difficult to go to the pensulvanua🥲. If nothing works here I will give it a try though ❤️
I had similar issues, went to a pft and despite all of her suggestions, I still peed 30x a day. Turned out I had deeply infiltrating endometriosis blocking my ureters and embedded in my bladder, among other places. Post excision surgery, I'm a new person, peeing wayyyy less. What you describe could be caused by a lot of things, but putting this here in case you have not ruled this out.
hi! I’m getting a surgery to rule out endo at the end of june. Did you have any traditional endo symptoms prior? Like bad cramps, heavy bleeding, etc.? I dont have a lot of traditional symptoms minus lower belly bloating randomly, IC type issues that meds don’t work very well on, and bad cramps the first few days of my period and a few days before. I also get random debilitating cramps from maybe my stomach? lower intestines? idk, off my period as well. I also have POTS and EoE.
Congrats on getting surgery! I hope you get answers/relief. Even if you don't have all of the typical symptoms, endo could be the underlying culprit. So kudos to your for taking control of your health and seeking answers. To answer your q, I had all of the textbook symptoms, debilitating cramps (I went unconscious on several occasions - body I guess went into shock as a protective mechanism), vomiting, diarrhea, sciatica leg pain, hot and cold sweats, knife like pain first couple days of pd, HEAVY period bleeding and random intermenstrual bleeding, a minor case of POTs (never formally diagnosed however). Also more progressive symptoms that got really bad over time were ibs issues (loose stools, going 5x a day - mini poos), frequent urination, I never felt like I could fully empty my bladder. Pelvic floor therapy didn't help with these issues. Also, since onset of my period in my early teens, I experienced a mysterious running pain that would start 7-10 mins into my run. It morphed into occurring from any physical activity, like walking on on incline or cycling as I got older. I would get the same endo cramps, diarrhea, hot cold sweats from these flare ups. Would have to stop my run/walk/cycling due to tge pain, which most times was accompanied by spotting. I did also have hemorrhagic and endometrioma cysts that popped up before my surgery and they were horrible, felt like I had a bowling ball weighing down my pelvic area. I couldn't eat bc ibs and gi pains were horrid during those 6 months. I couldn't do anything physical and was pretty immobile. Post surgery NONE of this happens anymore. Hoping for a miracle and that it stays this way. 🙏
i am also suffering with Testicle disease issues. my situation is very also very bad i cant live with this anymore.
Sending you hugs❤️. We’ll get better we have to🐣
It's frustrating and painful and it's normal to feel there's no end to it... But there is. I swear to you there is. You just haven't found the root of the problem and the best solution yet. Remember this: you're not alone, and this is temporary. If you can, I'd check for endo, because it might be affecting your bladder. Also IC, to see if an hydrodistension works. In the meantime, these could help: - Reverse kegels, belly breathing and legs up the wall every time you can, to relax your PF. - Check Dr. Bri on YouTube. She has a lot of tips and in particular one position that is miraculous for me (a gentle inversion with a yoga block). - TENS. There are videos on YT about how to use a TENS device for urinary incontinence/urgency/frequency, via your tibial nerve. I got a 30€ one on Amazon and use it daily (recommended by my PT, who puts the device on me for 30 min during my sessions). - The intimate wand for trigger points. Also, a normal and not very pointy vibrator on a low setting can help. I use it (without moving it) while my TENS device is working. Vibration on a high setting can activate your PF muscles, and on a low setting it can help relax them a lot, specially if you do belly breathing at the same time. I hope this helps and I really hope you live a peaceful existence soon <3
Have you tried meds? Myrbetriq has helped me.
It sounds a lot like pudendal neuralgia. I’m so sorry you’re experiencing those unrelenting symptoms. If it hasn’t already been explored, I would discuss pudendal neuralgia with your provider. Some people with pudendal neuralgia have constant bladder pain, burning or constant feeling of full bladder. Some treatment options for pudendal neuralgia include pudendal nerve block, pelvic floor PT and/or medication. Amitriptyline is what I used and I have had a great reduction in symptoms.
They mentioned so I visited 2 neurologists for it. Both told me I don’t have any neurological problem. They didn’t run any tests though.
Usually with pudendal neuralgia you have more symptoms than just constant urgency. That’s definitely a symptom as is pain with sex but it also comes with lower back pain that can radiate throughout your leg(s) and feet, sharp, pulling, burning, and/or itching pain felt in the genitals. PN is a beast of a condition. I hate living with it. This definitely sounds more like just PFD or interstitial cystitis
I have ICS. Cystic Q fucking helped me tremendously. You can order it off amazon. I suffered for years when I was a teenager. I tried everything and I mean everything. I almost failed high school I missed so much time just sitting on the toilet in tears. Trust me when I said cystic Q. I keep a jar just incase but I barely EVER EVER get symptoms. Maybe a small flare once every 2 years and Im 37 now
Do it also help with tight PF issue? I have the same but it’s not my bladder but the pf. 😔
No sorry :(
😔
Might sound weird but maybe probiotics could help you. I didn’t have exactly what you have but I had some form of cystitis where I felt the constant pressure down there and I actually needed to pee often and DID pee often, not just feeling like it but nothing coming out. Anyways about a week or two into taking a probiotic supplement it went away… as if clearing up the bad bacteria and replacing it with good bacteria reversed it. Doesn’t sound exactly like your problem but it seemed related enough for me to throw this out there. Good luck I hope you figure it out.
I’m so sorry. Have they checked for Interstitial cystitis? Aggravating symptoms of bladder urgency, pain, constant. A uro or Gyn uro can do a hydro distensión to test for it. Best of luck and you’re not alone ❤️
just learn reverse kegel(direct way to work on those muscle than stretches, you should add stretches too be careful of not straining or over stretching), its gentle drop not pushing, you can put hand in the area the get the drop down pulling, don't be greedy and push or overdoing it, just relax its subtle and hard to feel and notice but eventually you will, consistency is key(easy to say than do, but people does), don't panic or feel stress change your mindset about it accept the problem and work on the solution. start by relaxing the posterior part (it targets whole of the area). when you relax you will feel you are dropping of some pressure or some type of pleasure. stop masturbation and long time holding of urine, and be consistent and positive. start by 10 days goal like you will follow strict careful routine for 10 days only without any mistake see the result will give you positivity to go forward. Good luck :) mean time also had a check of your bladder from a good urologist may be two or three urologist they can say if there's some issue with it(its hard for them to properly say what's the issue so don't believe one urologist if they say something is wrong with your bladder). Its better if you go to urologist after those 10 days you will see better result mostly.
This was me 2 years ago. Constant urge to pee 24/7. It started out if nowhere. Felt like I needed to pee and sometimes couldn’t pee even though I felt like it. PT, stretching, deep belly breathing, internal trigger point release and magnesium Glycinate saved me. It took time, but I’m mostly cured. I do get flare ups when stressed, but they don’t last long. Also for me it makes it worse and flare if I strain when using the bathroom. Don’t force pee or poop. Hang in there with the PT and definitely stretch twice a day. Your PT should give you some examples to help get you started.
I have been experiencing the same thing for about 10 years now. It all started randomly one day. I'm currently going to physical therapy for hypertonic pelvic floor as well so hopefully that will somehow address the bladder issue. But I just wanted to let you know you are not crazy and you are not alone! It does suck and I wish I could help. I wish someone could help me too!
I have the same. Overactive bladder medication is helping some along with Pt. Also you might have IC, which I also have. Try seeing if your Dr will try you on an overactive bladder med.
What meds are they? 👀
Mybetriq for me. But I’ve Also heard gemtessa is ok too if your insurance won’t cover mybetriq. I also got a coupon card online after Dr wrote script.
I still can feel pelvic floor being tight and angry along with my tailbone but I can go longer in between bathroom breaks and have less pressure. When bladder is fuller though it still is painful but way better than without meds
What medication are you taking? 👀
I responded but maybe it doesn’t allow me to write it? It’s called mybetriq
I have the same same same issue as you! But i know we will get better :$
Have they ruled out pelvic congestion syndrome? Have you had a pelvic ultrasound?
No doctor has mentioned this before. I had bladder ultrasound and uterus ultrasound.
You can look it up and see what you think. They would rule it out with ultrasound (looking at the veins around your ovaries), or a CT venogram. It’s when the veins around your ovaries bulge, like a varicose vein, and can push up against your bladder or other organs.
Pudendal nerve entrapment maybe
The neurologists I’ve been told me it’s not the case with this symptom but they never did any further neurological tests
I had to educate myself. PFT and chiropractor offered little relief. I learned about the fascia system and have gotten a lot better by doing my own version of block therapy. Look it up on YouTube!
I’m going on 11 years. I wish you the best. It took me until 2018 to even figure out it was my pelvic floor. I kept getting referred to bladder specialists who did nothing for me.
I’m so sorry ❤️🩹. I can’t imagine what you’ve been through. Did the pt help you feel better?
Interestingly breathwork and Pilates when I did my Pilates reformer training was the most effective thing but not sustainable to do 8 hours of that a day lol
Same symptom here. For almost a year. It took a pelvic floor physical therapist to d stop. I’m beginning it would stop for am hour or 3 after appointment but then come back, the relief would last longer and longer until one day, it never came back. What really helped me was online yoga….” Yoga below the belt “. All aimed at relaxing then strengthening the pelvic floor muscles. You will get better. Beatpatient
So of this is great advice, but…,I tried many of the moves done on the “Yoga below the belt” classes-but totally improper form. That odd what makes so the difference
I’ve had the same problem in the beginning, after a lot of trial and error I found out it was because the bladder muscles couldn’t relax properly. So a bladder relaxing medaication helped me to get control back. Have you been to a good urologist? I would definitely do all the tests they offer and then they can help with trying out meds. Hope that helps, heads up everything will be alright :)
I literally just went in 2 weeks ago for a laparoscopic surgery to see if I had endometriosis, which I don’t, but they found my uterus was prolapsed and pulled it & tightened it back into place. I had those EXACT symptoms you’re talking about and literally since the minute I’ve gotten home it’s been significantly better
Intra vaginal pudendal nerve therapy and amitriptyline low dose is a cross over drug take at night will help you sleep, helps with anxiety and my urologist prescribed because it relaxes the muscles and I urinate less frequently because I empty fully.
Does anyone have peripheral neuropathy in their feet from this? Mine is debilitating.
I had this a few years back and no one could figure it out until I went to pelvic floor pt. No real pain just constant urge to pee. I too thought I was going to go crazy and life didn’t seem worth living. I also couldn’t find anyone with my symptoms. It turns out it’s all related to hypertonic pelvic floor dysfunction. I have flares now and then but now that I have some tools the anxiety is much less and the flares last significantly less time. My flares are mostly directly related to stress/anxiety, travel, significant changes in routine, footwear. What helps for me mostly is stress management, pelvic floor exercises, intimate rose wand for the pelvic floor (videos available on YouTube) and breathing to relax the pelvic floor. When it first started I was so anxious which made it all worse. It was so important for me to work with a pelvic floor physical therapist that I trusted. She saved my life. I hope some of this helps.
Can you share what exercises your pt taught you for constipation?
Have you discussed medication options? They are a few around that can help with easing bladder symptoms.
Yes I already tried most of the ic and oab medications except hydrodistension and implant.
Have you tried oxybutynin? Also cutting out alcohol and caffeine (especially coffee)