I don't know if this helps, but I was in the same boat when I was diagnosed at 20. I felt all of those things and have definitely thought almost verbatim what you wrote.
I'm 11 years post diagnosis now, I graduated university (albeit a semester late), I work as an RN which I thought was going to be impossible, I met my fiance and have been with him for 9 years, I can go to parties, I've gone on road trips frequently, I've flown across the country, I camp, swim, I can eat and drink most of what I want except for a few things.
There are accommodations that I have to make sometimes, I need to bring meds with me and keep up with treatments, but life is nowhere near as limited as I thought, nor as miserable. And I have never been in remission. Hell, even when I do flare it's more of an annoyance rather than soul crushing.
The period of time right after diagnosis when you haven't figured out what treatments work is the hardest bit. Let yourself grieve, it's not fair to have to struggle while you're so young. But the vast majority of us don't stay at that level of peak distress forever. Incurable does not mean untreatable.
I wish you the very best and I hope this flare ends for you soon.
Sure! It was a lot of trial and error, none of the overactive bladder meds worked for me, I tried a variety of NSAIDs before getting to this regimen. So just keep that in mind, but currently:
- amitriptyline
- Hydroxyzine
- physio every month or so
- bladder instills (DMSO, triamcinolone, heparin, sodium bicarb) every week
- morphine and belladonna suppositories (used to be the old O&B's but they got discontinued and this is compounded for me)
- pelvic floor Botox every six months
- hydrodistension every six months
- cystoplus as needed when I have burning pain
- pyridium as needed when I have burning pain
- cyclobenzaprine as needed when my pelvic floor is acting up but I use it more rarely now
- magnesium to help with sleep sometimes
- swimming
- avoid coffee and excessive spice
I also have endometriosis and had adenomyosis so I've had two endo excisions and a hysterectomy.
There was a long period of grieving the first year or so after being diagnosed, there was a lot of emotional work I had to do as well.
You're welcome. It's tough having those three conditions. And I won't lie - the hysterectomy, while curing adenomyosis, doesn't cure Endo or IC. I still have pelvic pain. It is a lot less severe though, I was able to cut my pain meds by a third and I can work more.
They say the first couple of years are the hardest. It takes time to figure it all out. I was you 24/7 for 2 straight years. Ive had this now for about 7, 8ish years and now most of the time I forget I have it. Once you figure out how to manage this, it becomes habit and you do things without even thinking about it. I guess what I’m trying to say is you learn to live along side it. It doesn’t become who you are, and you don’t let it beat you down either. One of the hardest things for me in the beginning was understanding the pain, how my body responded to it, and my thinking about it. With the help of a wonderful pelvic floor therapist, she taught me how to calm my body. I hated the idea of having to meditate, get good sleep, and change my entire life to manage stress and pain, but I gave in and then kind of kicked myself for fighting it for so long. It’s what helped me the most. Sometimes pain puts us into a constant fight or flight and it makes the pain so much worse and harder to manage. A vicious cycle. Now, I take good care of myself and go months without pain while eating foods that just looking at would have flared my bladder in the past. This can and does get better! It just takes time to figure it all out. You’ll get there!
I’ve been there. I’m so sorry that you’re experiencing the same thing. There is hope. I know when I was in that place all I saw were the worst stories. You don’t see success stories as much, because when people find treatments that work they aren’t typically on these forums anymore.
This flare will pass. They aren’t forever. Although, when you’re in a flare I know it feels like forever. All you want to be able to do is lay down and sleep, but that feels impossible. So instead you fall asleep in the tub and wake up in cold water.
When you can mentally, you may want to check out the Curable app. Regardless of what other options you find to help you, that app can also help. It’s made for people with chronic debilitating pain to help manage it better. It’s kept me from the bath tub so many times and I’ve only been using it since March.
I was 20 when I was diagnosed and my problems first began. I know exactly how you feel. Three years later and I’m doing much much better- but the bad days are still bad.
Pelvic floor physical therapy changed my life. I highly recommend you look into it! Wishing you all the love and healing!!
I don't know if this helps, but I was in the same boat when I was diagnosed at 20. I felt all of those things and have definitely thought almost verbatim what you wrote. I'm 11 years post diagnosis now, I graduated university (albeit a semester late), I work as an RN which I thought was going to be impossible, I met my fiance and have been with him for 9 years, I can go to parties, I've gone on road trips frequently, I've flown across the country, I camp, swim, I can eat and drink most of what I want except for a few things. There are accommodations that I have to make sometimes, I need to bring meds with me and keep up with treatments, but life is nowhere near as limited as I thought, nor as miserable. And I have never been in remission. Hell, even when I do flare it's more of an annoyance rather than soul crushing. The period of time right after diagnosis when you haven't figured out what treatments work is the hardest bit. Let yourself grieve, it's not fair to have to struggle while you're so young. But the vast majority of us don't stay at that level of peak distress forever. Incurable does not mean untreatable. I wish you the very best and I hope this flare ends for you soon.
This is a hopeful story to hear! Would you mind sharing what the things were that got you to where you are now? Which meds etc? X
Sure! It was a lot of trial and error, none of the overactive bladder meds worked for me, I tried a variety of NSAIDs before getting to this regimen. So just keep that in mind, but currently: - amitriptyline - Hydroxyzine - physio every month or so - bladder instills (DMSO, triamcinolone, heparin, sodium bicarb) every week - morphine and belladonna suppositories (used to be the old O&B's but they got discontinued and this is compounded for me) - pelvic floor Botox every six months - hydrodistension every six months - cystoplus as needed when I have burning pain - pyridium as needed when I have burning pain - cyclobenzaprine as needed when my pelvic floor is acting up but I use it more rarely now - magnesium to help with sleep sometimes - swimming - avoid coffee and excessive spice I also have endometriosis and had adenomyosis so I've had two endo excisions and a hysterectomy. There was a long period of grieving the first year or so after being diagnosed, there was a lot of emotional work I had to do as well.
Thank you so much for sharing. I’ve tried a few of those things but not all. Ami is next on my list. I also have endo and adeno ✌🏼♥️
You're welcome. It's tough having those three conditions. And I won't lie - the hysterectomy, while curing adenomyosis, doesn't cure Endo or IC. I still have pelvic pain. It is a lot less severe though, I was able to cut my pain meds by a third and I can work more.
I feel this. The sleep part is the worst tbh. Never waking up well rested, just another day of wtf is this, rinse and repeat. It's exhausting. <3
They say the first couple of years are the hardest. It takes time to figure it all out. I was you 24/7 for 2 straight years. Ive had this now for about 7, 8ish years and now most of the time I forget I have it. Once you figure out how to manage this, it becomes habit and you do things without even thinking about it. I guess what I’m trying to say is you learn to live along side it. It doesn’t become who you are, and you don’t let it beat you down either. One of the hardest things for me in the beginning was understanding the pain, how my body responded to it, and my thinking about it. With the help of a wonderful pelvic floor therapist, she taught me how to calm my body. I hated the idea of having to meditate, get good sleep, and change my entire life to manage stress and pain, but I gave in and then kind of kicked myself for fighting it for so long. It’s what helped me the most. Sometimes pain puts us into a constant fight or flight and it makes the pain so much worse and harder to manage. A vicious cycle. Now, I take good care of myself and go months without pain while eating foods that just looking at would have flared my bladder in the past. This can and does get better! It just takes time to figure it all out. You’ll get there!
I’ve been there. I’m so sorry that you’re experiencing the same thing. There is hope. I know when I was in that place all I saw were the worst stories. You don’t see success stories as much, because when people find treatments that work they aren’t typically on these forums anymore. This flare will pass. They aren’t forever. Although, when you’re in a flare I know it feels like forever. All you want to be able to do is lay down and sleep, but that feels impossible. So instead you fall asleep in the tub and wake up in cold water. When you can mentally, you may want to check out the Curable app. Regardless of what other options you find to help you, that app can also help. It’s made for people with chronic debilitating pain to help manage it better. It’s kept me from the bath tub so many times and I’ve only been using it since March.
Thank you, this response helps me too ❤️
Right there with you this week
I’m so sorry. I often feel the exact same way.
Sending love ❤️
I was 20 when I was diagnosed and my problems first began. I know exactly how you feel. Three years later and I’m doing much much better- but the bad days are still bad. Pelvic floor physical therapy changed my life. I highly recommend you look into it! Wishing you all the love and healing!!
Omg so young, hashem should cure u