3 years of agony and hopelessness. Here’s what has me 75% better/ and some days completely pain free.
I’ve been in this group a long time after an IC diagnosis. I never actually believed that was my final diagnosis ( and i was right).
I started in absolute agony. Couldn’t function, sleep, travel, go in the car, or enjoy any socialization whatsoever.
My pain was bladder and the left side of my pelvic wall and it was excruciating. I am happily married and couldn’t have sex for almost 3 years. I had the cytoscope(sp) and it showed the whole left side of my bladder was angry red and inflamed. But not the right side. I tried Myrbetriq and Oxybutynin and they provided some relief. Walking provided relief but vigorous exercise immediately flared me. Vaginal estrogen provided some relief. I would say those medicines got me 30% better. I followed the IC diet but I never found that any food really made a dramatic difference.
Someone in this group suggested pelvic floor therapy. I didn’t really understand how that could work but I was desperate. I went and they initially said I had a hypertonic pelvic floor( too tight). The treatment was internal work where they do active release inside your pelvis. I had some relief after just a couple visits. I went once a week and it got better and better. Then i switched to every two weeks and I was doing really well between appointments. I would still flare sometimes, especially around my period or exercise, but I was having pain free days. I would literally weep with relief that I had pain free days. The first day I didn’t think about my bladder I sobbed with happiness. They taught me how to do the active release at home, but I’m not great at.
From the beginning of this I have felt that this was connected to my back or hip. Because if I exercised my bladder would flare and my hip would hurt.
Well, over time the PT also made that connection and figured out what I truly have.
It’s called Obterator Internus Dysfunction. Here’s a link
https://www.thepelvicstudio.com/blog/obturatorinternus
The fact that it took this long is so frustrating. This is apparently a major cause of bladder and pelvic pain and not one doctor mentioned it.
Men and women alike can have this.
This is NOT a fast process. I have had over 50 PT appointments . I have to do exercises every day to release the hip and I go twice a month to PT. I’m getting better at doing the internal release myself and may go down to one PT a month.
I am completely OFF bladder medicine.
A few months ago I told my gyno I was 50% better thanks to PT. That man looked me in the face and said he doesn’t think PT will fix me and suggested I go get botox in my bladder. If I had any faith left in him, it was gone that day.
Men and women can have this and it doesn’t have to be in the specific spots I mentioned. Your hip and back don’t have to hurt for this to be the cause- that’s just my symptoms.
I say run to PT. You need a PT who will do internal work.
If you can’t afford PT there are lots of videos on google. Look up Hypertonic Pelvic Floor exercises.
I owe a lot to this group so I wanted to give you an update in case this helps someone.
I went to Greece, I’ve had sex, I’m eating what I want, I have my life back.
I’ll try to answer any questions the best I can. It’s sort of a mysterious thing and hard to explain, but I’ll do my best.
I’ve been in this group a long time after an IC diagnosis. I never actually believed that was my final diagnosis ( and i was right).
I started in absolute agony. Couldn’t function, sleep, travel, go in the car, or enjoy any socialization whatsoever.
My pain was bladder and the left side of my pelvic wall and it was excruciating. I am happily married and couldn’t have sex for almost 3 years. I had the cytoscope(sp) and it showed the whole left side of my bladder was angry red and inflamed. But not the right side. I tried Myrbetriq and Oxybutynin and they provided some relief. Walking provided relief but vigorous exercise immediately flared me. Vaginal estrogen provided some relief. I would say those medicines got me 30% better. I followed the IC diet but I never found that any food really made a dramatic difference.
Someone in this group suggested pelvic floor therapy. I didn’t really understand how that could work but I was desperate. I went and they initially said I had a hypertonic pelvic floor( too tight). The treatment was internal work where they do active release inside your pelvis. I had some relief after just a couple visits. I went once a week and it got better and better. Then i switched to every two weeks and I was doing really well between appointments. I would still flare sometimes, especially around my period or exercise, but I was having pain free days. I would literally weep with relief that I had pain free days. The first day I didn’t think about my bladder I sobbed with happiness. They taught me how to do the active release at home, but I’m not great at.
From the beginning of this I have felt that this was connected to my back or hip. Because if I exercised my bladder would flare and my hip would hurt.
Well, over time the PT also made that connection and figured out what I truly have.
It’s called Obterator Internus Dysfunction. Here’s a link
https://www.thepelvicstudio.com/blog/obturatorinternus
The fact that it took this long is so frustrating. This is apparently a major cause of bladder and pelvic pain and not one doctor mentioned it.
Men and women alike can have this.
This is NOT a fast process. I have had over 50 PT appointments . I have to do exercises every day to release the hip and I go twice a month to PT. I’m getting better at doing the internal release myself and may go down to one PT a month.
I am completely OFF bladder medicine.
A few months ago I told my gyno I was 50% better thanks to PT. That man looked me in the face and said he doesn’t think PT will fix me and suggested I go get botox in my bladder. If I had any faith left in him, it was gone that day.
Men and women can have this and it doesn’t have to be in the specific spots I mentioned. Your hip and back don’t have to hurt for this to be the cause- that’s just my symptoms.
I say run to PT. You need a PT who will do internal work.
If you can’t afford PT there are lots of videos on google. Look up Hypertonic Pelvic Floor exercises.
I owe a lot to this group so I wanted to give you an update in case this helps someone.
I went to Greece, I’ve had sex, I’m eating what I want, I have my life back.
I’ll try to answer any questions the best I can. It’s sort of a mysterious thing and hard to explain, but I’ll do my best.