Thank you for sharing your journey. I grew up having several of the conditions that you have and I hope that videos like this can help others get diagnosed and treated sooner.
I also have severe bladder problems with histamine intolerance. I use to be diagnosed with constant uti infection until it got so bad I couldn’t walk. A bladder biopsy showed the histamine and the bladder was covered in ulcers known as hunner’s lesions which she cauterized and filled with medication. This helped for a year but I had it done twice more and the effects aren’t as good at all. I always feel as if I have a uti even with a low histamine diet and a lot of antihistamines type 1 and 2. I’m not sure if going to an allergist will help at all as I don’t really have many allergies that I know of. Everything is so expensive in the US and I haven’t found to much help😵💫 pain meds and antihistamine, pain and frequency is my normal day!!!! Thanks for helping people like me to not feel so alone in the suffering ❤️😊✌️
Excellent talk Stacey! I think bladder issues can bring feelings of shame and embarrassment. It's alot easier to speak openly about issues like joint subluxations etc. The way you've taken control of you bladder issues and spoken so openly is wonderful. Thank you!
I'm awaiting my diagnosis - but pretty convinced I have HEDS. I have significant bladder and kidney issues, and until this video did not make the connection at all. This gives me another thing to follow up on - so thank you very much for this presentation, Stacey.
Such a similar journey to what I am facing and have for much of my life - and it is amazing to think that such strong people have endured this pain that I know so well how you describe it, and still powerfully speak about it. Thank you for sharing!!
Half way your story I bursted out in tears, I just can’t believe you went through all of that. And then you continued to have a baby! How did you do that?! I am so grateful that despite everything you we’re able to create a family. At least you have an abundance of love in your life. I know healthy people who are bitter,angry, unhappy and there presence even makes me sick, thenI think I rather have my EDS with all the pain that come with it m, and having abundance of love in my home rather than being healthy and living in a house full of anger. It makes it more bearable to have EDS.
I get intermittent urinary retention along with various other comorbidities. I was diagnosed with hEDS about a year and a half ago, after my identical twin sister was diagnosed. But my GP gaslit me and said "how is retention and muscle spasms relared to EDS?" He was so unprofessional. So i changed GP practice. Thank you for sharing. Xxx
Thank you for sharing this topic. I had a spell three years ago where I kept having recurring UTI's. I was put on a preventative dose of one tablet a day of pregabalin 100 mg and it's like being cured. I wonder how wise it is to be on antibiotics for years at a time. I am really needing to feel some inclusion and understanding. Fighting viral pneumonia the last 3 months has left me stuck in bed once again. I have MS, EDS, fibromyalgia and MCAD for starters. Hope to make a connection. Take good care, Stacey!
Hi there, I'm Disa from Northern Sweden, thank you so much for making this video!! I had to pause it twice, to go pee. LOL My bladder is driving me totally bonkers, as you say in the UK. I have the ehlers danlos syndrome diagnosis as you, and I am SURE I have POTS and MCAS as well. But no doctor knows anything about those two here, I'm poor and innp condition to travel, so I might never know for sure. But if I have POTS and MCAS as well, that would explain soooo much issues my body have. And all of the anafalytic chocks I have had so many of, that no one can explain. And maybe my low body temperature drops that nearly kills me. And my sun allergy and both heat and cold intolerance. Anyway, before I ramble on any more, thank you for talking about bladder issues and having to use the bathroom every 10 minutes often, and not getting the pee to come out. I wish doctors here would listen and help me to get some self catheterization supplies. I have struggled with this for 26 years no, and still gotten no help!!
God love you, so sorry you have been through so much! HSD, Endometriosis, Irritable Bladder. I take Zyrtec 1 x a day to stop bladder pressure and pain. Be well :)
Thank you for sharing this! It made me feel better on a horrible bladder day!
Thank you for sharing your journey. I grew up having several of the conditions that you have and I hope that videos like this can help others get diagnosed and treated sooner.
I also have severe bladder problems with histamine intolerance. I use to be diagnosed with constant uti infection until it got so bad I couldn’t walk. A bladder biopsy showed the histamine and the bladder was covered in ulcers known as hunner’s lesions which she cauterized and filled with medication. This helped for a year but I had it done twice more and the effects aren’t as good at all. I always feel as if I have a uti even with a low histamine diet and a lot of antihistamines type 1 and 2. I’m not sure if going to an allergist will help at all as I don’t really have many allergies that I know of. Everything is so expensive in the US and I haven’t found to much help😵💫 pain meds and antihistamine, pain and frequency is my normal day!!!! Thanks for helping people like me to not feel so alone in the suffering ❤️😊✌️
Excellent talk Stacey! I think bladder issues can bring feelings of shame and embarrassment. It's alot easier to speak openly about issues like joint subluxations etc. The way you've taken control of you bladder issues and spoken so openly is wonderful. Thank you!
I'm awaiting my diagnosis - but pretty convinced I have HEDS. I have significant bladder and kidney issues, and until this video did not make the connection at all. This gives me another thing to follow up on - so thank you very much for this presentation, Stacey.
Thank you so much for this 💙💙💙
My circumstances are a little different, but very frequent and long history of infection
Thank you for so clearly describing, and so very well detailed. 🙏🏻 Prayers for our community and improvements.
Such a similar journey to what I am facing and have for much of my life - and it is amazing to think that such strong people have endured this pain that I know so well how you describe it, and still powerfully speak about it. Thank you for sharing!!
Half way your story I bursted out in tears, I just can’t believe you went through all of that. And then you continued to have a baby! How did you do that?! I am so grateful that despite everything you we’re able to create a family. At least you have an abundance of love in your life. I know healthy people who are bitter,angry, unhappy and there presence even makes me sick, thenI think I rather have my EDS with all the pain that come with it m, and having abundance of love in my home rather than being healthy and living in a house full of anger. It makes it more bearable to have EDS.
I get intermittent urinary retention along with various other comorbidities. I was diagnosed with hEDS about a year and a half ago, after my identical twin sister was diagnosed. But my GP gaslit me and said "how is retention and muscle spasms relared to EDS?" He was so unprofessional. So i changed GP practice. Thank you for sharing. Xxx
Thank you for sharing this topic. I had a spell three years ago where I kept having recurring UTI's. I was put on a preventative dose of one tablet a day of pregabalin 100 mg and it's like being cured. I wonder how wise it is to be on antibiotics for years at a time. I am really needing to feel some inclusion and understanding. Fighting viral pneumonia the last 3 months has left me stuck in bed once again. I have MS, EDS, fibromyalgia and MCAD for starters. Hope to make a connection. Take good care, Stacey!
I wish the just can't wait cards were available everywhere in the world :(
This was great thank you so much for sharing!!
Thank you for this. ❤️🦓
Thank you soo much 🙏🙏🙏🥰🥰❤️ desde Perú Arequipa
Now I understand more about myself, but I'm still confused.
Hi there, I'm Disa from Northern Sweden, thank you so much for making this video!! I had to pause it twice, to go pee. LOL My bladder is driving me totally bonkers, as you say in the UK. I have the ehlers danlos syndrome diagnosis as you, and I am SURE I have POTS and MCAS as well. But no doctor knows anything about those two here, I'm poor and innp condition to travel, so I might never know for sure. But if I have POTS and MCAS as well, that would explain soooo much issues my body have. And all of the anafalytic chocks I have had so many of, that no one can explain. And maybe my low body temperature drops that nearly kills me. And my sun allergy and both heat and cold intolerance. Anyway, before I ramble on any more, thank you for talking about bladder issues and having to use the bathroom every 10 minutes often, and not getting the pee to come out. I wish doctors here would listen and help me to get some self catheterization supplies. I have struggled with this for 26 years no, and still gotten no help!!
God love you, so sorry you have been through so much! HSD, Endometriosis, Irritable Bladder. I take Zyrtec 1 x a day to stop bladder pressure and pain.
Be well :)