Need advice
Hello everyone.
I'm currently suffering from a flare up. And feeling very overwhelmed.
Three years ago I had a horrible UTI, that I got after my ex at the time had been very rough with me intimately. Not only that but I believe he was giving me exposure to gluten, (I have celiac disease) Which he admitted he didn't really believe that I had it, and hinted to exposing me to it intentionally. He refused to take me to the hospital, instead he went into work and left me till my mother and brother ended up driving 7 hours to come get me and take me to a hospital. At the ER they said my whole body was inflamed and prescribed me a 5 day course of steroids to help with the inflammation and some antibiotics too. It took a month and a half for me to feel normal again.
half a year passed and I entered a polyamorous relationship with two men, Cyrus and Ray.
both long distance. in two different states. They both were so lovely, I hadn't really had anxiety about being intimate with either of them. Ray came to visit me first. And on the last day of his visit I ended up with the UTI symptoms. I went to the doctor, no sign of a UTI but I got some antibiotics, and it took two weeks to feel normal again. But the pelvic pain persisted for longer.
Cyrus came to visit me two month later, and no flares up happened. We took a lot of showers together, and in general his hygiene was better than Rays.
I visited Ray at his place, and I got a flare up again. Lasted for about two and a half weeks.
I visited Cyrus, no flare up, but the visit was extremely difficult and It became clear that our relationship was unhealthy in other ways. When I returned we broke up. I still feel really sad about it.
I was on vacation with Ray and ended up getting UTI like symptoms. Burning, urgency, and pain. I went to a walk in clinic was prescribed a five day course of NITROFURANTION antibiotics, despite that there was no sign of infection. It's day three and my symptoms are even worse. I had some french fries last night that my brother made me. Idk if that could have caused things to get worse, they had chili spice on them.
My primary care doctor talked to me about this potentially being IC, half a year ago. I was referred to a Urologist who only told me what to eliminate from my life, rather than what to do to help. It was just a long sad list of eliminating all the things that bring me joy. And it was so disheartening. Even the GYN I saw was a disappointment.
I don't know how much of it is due to the fact that I am Intersex trans-man. And there seems to be a general mistreatment in medical settings, and lack of knowledge on what to even do for me.
My boyfriend Ray is so incredibly sweet. And I love him a lot. But I'm feeling so anxious now because every time we have been intimate these flare ups happen, and this time there was blood in my urine. I don't know what to do.
I'm not sure why it didn't happen with my ex Cyrus, other than the hygiene thing. And to top things off, when I was starting to feel slightly bad and then we were intimate it would clear up, almost instantly. Out of all the partner's I've had I've only been able to orgasm with him too. Sex is something that is sacred to me, I enjoy the closeness that comes with it, even without orgasms for myself. And I want to be able to enjoy it with my current partner without this fear that my whole life will be derailed for who knows how long.
I've been trying to get a job, and move out into my own place. With these symptoms I can hardly handle the idea of leaving the house. Ray has offered for me to move in with him, but he is a state away and now I am dealing with this anxiety about being with him.
I've been crying all morning, and debating going to the ER. I'm in so much pain. But I also know there is little understanding or empathy in those places in my experience.
I don't know if I should bother seeing that Urologist again, she was rude and dismissive to me when I brought up my pain levels. But the idea of waiting months to see someone new is also soul crushing.
I wish there was a place I could go where all the specialists I needed to see where in the same room. And could communicate with each other to help me find a solution. I hate the medical system here in the US. It feels so needlessly complicated, and ill organized. in Particular when it comes to health around our pelvic regions. There is so much internalized shame. I know even if I wasn't trans there was still challenges into investigating these symptoms. It is incredibly sad.
I feel so alone, and trapped in my own body right now. And could just use some words of encouragement or hope.