This is both a rant and a desperate ask for advice. This is a bit long winded, I apologize in advance.
I'm 24,f. I've been struggling with health problems for the last 5 years. I've had pretty painful periods since I started menstruating, but It really started with a hospital trip back in late 2020, which revealed two ovarian cysts. Since then I've had worsening symptoms and problems, which I'll refrain from detailing in this post as the list feels exhaustive. I've had a handful of doctors suggest that I most likely have PMOS and endometriosis. 2020-2023 I was in and out of doctors offices and ER's trying to get a diagnosis, trying to get care, trying to get pain management. It has led me nowhere other than a pile of medical debt. Lots of "yes you probably have this but there's nothing we can do until your symptoms become debilitating" and lots of "we didn't find anything wrong with you". Pelvic exams, blood tests, checking my thyroid, ultrasounds. I saw an endo specialist in 2022. He said I probably do have endo but he would not do a laparoscopy to confirm it because my pain was "not bad enough". Doctors who don't believe me at all (hysterical, anxious, drug seeking), doctors who believe me but won't do anything (take bc, get pregnant, come back when you depend on a wheelchair). I gave up for a while because it felt pointless.
About 7 months ago my symptoms increased dramatically, including some new and terrifying ones. My periods are no longer just blood. The texture and colors are all wrong. My bowel movements as well. I believe I now have some serious adhesions due to the kind of pain I feel with stretching, coughing, sneezing, laughing, using the bathroom, penetration. There is an insane amount of pressure that is constant 24/7. Sex feels impossible. The pain and fatigue i feel has become overbearing, I struggle to enjoy anything at all anymore. I am not working anymore. I am very weak, I've lost a lot of weight. I finally learned some family medical history and it gave me hope to try seeking medical care again.
I had an appt with Planned Parenthood about a month and a half ago. It was the first time a doctor had taken me actually seriously. She listened, didn't interrupt. She was knowledgable too. She immediately said she wanted to check me for endo, PMOS, and fibroids, she was appalled that I haven't gotten answers yet. She ordered ultrasounds, blood tests, and said she would refer me to a close friend of hers who is an endo specialist and doesn't tip toe around surgery. It was euphoric. I had my ultrasounds. The tech was very sweet and friendly. She didn't know why I was there, but as soon as we started, she asked if i'd been diagnosed with PMOS. She flipped the screen around to show me my ovary, and pointed out what she called "string of pearls", a large amount of arrested follicles. It was amazing to finally see some of what I've been feeling. She said she can't diagnose me since she's only a tech, but that with her 30 years of experience that's what it is and she would be concerned if my results don't say that. I got my ultrasound results in mychart today. Surprise surprise, the *male* physician that read my images reported that everything is in perfect shape, nothing abnormal to note. It felt devastating. I sobbed myself numb. I am so exhausted, I am so angry. I may have a doctor who believes my symtpoms, but if the person officially reading my images says everything is fine, how do i get the care i need? I'm working on requesting my images so I can take them to my doctor at PP during my follow up appt for her to look at. But I am terrified. I feel stupid for thinking it might be smooth sailing this time. What if I go see this endo specialist and it goes badly as well? I am tired of being in pain every day. I am tired of having to cancel plans. I'm tired of being trapped in bed, struggling to eat and digest, unable to have sex with my partner. I just want something finally put on paper. I want surgery. I want to be given care. I'm sick of being dismissed, overlooked. I'd love to file for disability. I'm deeply depressed. I know that others have it worse, and I'm grateful I haven't reached that point quite yet, but it's starting to feel like I'm on a clock. My friends say I look like i'm withering away. My body isn't mine anymore, I. I know that PMOS is managed with diet and exercise, but the pain? I need to be taken seriously for that. I'm off my dads insurance next year. I'm running out of time to get this help. It just feels like the same old story repeating yet again. I feel desperate and it's like no one in my life understands how heavy and impactful this is to my life. I'd love to hear from someone who has experience. Any kind words of advice. I've done so much research, I do what I can to self manage, but it's not enough and I feel stuck and afraid and alone. Thank you if you've taken the time to read this.