My SO has one of these types of diseases. It is called Interstitial Cystitis (IC), it's one of the 'bathroom' conditions. Essentially, the cells that make the mucous layer in the bladder were eaten away by a bacterial infection and, hence, there is not longer any protective lining from the urea and other waste products. IC is more of a symptom than a disease, and there are many ways it manifests in ~8 million Americans. IC is incredibly painful when your bladder is full. Think blistering sunburn, but on the inside. Sure, my SO has good days and bad ones. Some foods are known to be more harmful than others and my SO avoids them. Some things help mitigate IC, and the road is long.
But whatever. None of the 'science' really matters here. The pain remains.
What the article was talking about is SO TRUE. Like, incredibly so, and I'm not the affected person, my SO is. The disease is just utterly maddening.
We're both PhDs, myself in a bio field, and my SO in a geo field. We've tracked the hell out of everything, from every morsel of food, to every stair-step, to thrice daily urine testing with a medical grade machine we bought used and fixed up. We're up-to-date as can be on the literature and the latest treatment plans, methods, and equpiment. As PhDs, we know the field very well by now. We're not quite at urine replacement therapy yet, something we've mostly just dreamed up as a treatment, but it's getting close.
It's nothing but noise. We know our stats, we can tell. The pain remains.
The bit in the article about vaping, CDB, bone broth. So freakin true. We've tried it all. Edibles, daily yoga, both at once. Retreats at monasteries and on beaches have produced no results. We've gone to total keto, to total meat, to total raw-veg diets, fatless, sugarless, protienless, etc. Daily HIIT did wonders for my SO's mile times, it went down to under 5 minutes! My SO even got exercise related asthma. We've done water therapies, and sensory deprivation tanks together. Every quack pop-culture fad since the 1820s, we've done it.
Nothing comes out of it. The pain remains.
Therapy has been a wash. Some of the integration work has helped out my SO's metal state. But honestly, most of the therapists around us are bunk. Three of them didn't even know that the urethra wasn't connected to the sex organs. I've no idea what they teach therapists, but a twinge of anatomy may be helpful. We've gotten religion, a few of them, only to be smacked in the face about how we need to confess more and sin less, or about the gender roles in our house, or about how Jesus loves us, but not in that way. I've been told to leave my SO to my face, with my SO standing right there, by more than one religious leader.
No matter how much we pray, still the pain remains.
The online and IRL groups have been a disaster. When some meet, it's mostly just tears and weeping. Nearly no couples stay together after 5 years, from what we've seen. The script is that the unaffected SO declares that nothing will drive them apart, typically somewhat aggressively. 24 to 18 months go by and then just the IC ridden person is attending alone or posting online. Divorces happen frequently. We've been to more than a dozen funerals and seen many posts online that give the last updates for what happened to the frequent poster: typically they choose pills, a few use a gun, some swan-dive off the Golden-Gate; there's a lot of ways people choose. You forge bonds with these people, try to help them up when it gets bad. And they just stop coming to meetings one day. My SO and I, I dunno, it's tough, like really tough.
And still the pain remains.
My Mom emails me new quack remedies all the time. The most recent was about just eating raw ginger all the time. We're going to try that out next week. My Mother-in-law just thinks that it'll get better when we get pregnant and then go away. The pain is too much for most patients to even think of attempting intercourse, many sufferers use a LOT of local anesthetics to do the deed, if at all. I've been at the end of my rope a lot of times, and then discovered that there is a lot of rope left. Love is funny like that. I've had heart to hearts with the family about how I NEED help. The article is great about that tiny little aspect. None of the family ever bother to google a thing about IC and then most forget anyways. It's constant education even towards very close family. I've given up on reaching out to friends and family, it's just too tiring.
And still the pain remains.
I've no idea why I wrote this rant. Sorry for the wall of text. I'd love to hear any remedies that you may have for IC, we're up for anything. I guess I just wanted to add another voice that says that the article is really really really truthful, at least, towards me.