I am so sorry you are going through this, and it sounds as though you have not been able to find anyone in the medical field to talk to?
It is important for you to call your doctor(s) offices (the medical records department), and acquire a copy of all of your lab tests and other medical records.
It is also important for you to find a doctor who has time to sit down with you, discuss what tests have been conducted, what the tests results have/have not indicated, and what your next steps are (more testing, treatment options, etc).
Please learn how to advocate for your own health, and find a doctor whom you have a good rapport with, and begin asking these important questions:
- What tests are being conducted, and why?
- What are possible causes to prolonged bleeding?
- Do your family members have any family history of abnormal bleeding?
- What treatment options have already been tried?
You absolutely need to keep a list of your symptoms, treatments that you have tried (that worked, did not work), tests conducted, test results, etc. If you have a difficult time talking with medical professionals, please ask a friend or family member to accompany you to your doctor appointments.
It is crucial that you find the answers to these questions, before anyone on the internet can help guide you to additional information or treatment options. Have certain medical conditions already been ruled out (uterine fibroids, cancer, PCOS)?
Lastly, I am unsure about your wanting to stay off the pill because you want kids---are you referring to the birth control pill? If so, please educate yourself on what the pill does and does not do (it does not cause infertility), and it can lead to a regulated period (however, it sounds like it did not help you previously).
It is vital to talk with your doctors about your fertility, reproductive health and overall well-being. We are here to help, whether you need more confidence or reassurance in advocating for yourself! You can do it!