Everything you have said is true, only you are describing it in the worst possible light. I have direct experience with everything you are describing, and I want to make your heart lighter concerning all of this. It isn't as bad as it seems.
I was 30 years old when I was on hormones and developed a small blood clot in my lower ankle area. Because I was extremely healthy and quite thin, the ER didn't worry about it and told me to take baby aspirin. Within a few days, the clot was gone and reappeared right behind my knee. I could only notice it because it was a little more red than the other knee and would have a little pressure when I fully extended my leg. I told my regular doctor who had me temporarily stop hormones and monitor it. Because I was otherwise healthy and had not had surgery recently, it wasn't clear what caused it, so she ran a battery of blood work.
Within about three days I had the ever so slightest pain in my chest when I breathed in deeply. I went to bed as normal, thinking, if it hurts tomorrow (it was more of an annoyance really), I will call my doctor. The annoyance was still present in the morning so I left a message for my doctor and went to work. She called me about an hour later with a very grave tone. She said, "You have to get to the ER now! You're tests came in; you have an extremely rare blood disorder, Protein S Deficiency, that causes you to clot excessively. You are experiencing a pulmonary embolism." It certainly didn't FEEL like I was dying - just a little pain in my chest.
Well I was in the hospital for a week after being admitted with "multiple pulmonary emboli, numbering around 13". It was touch and go the first two nights as the doctors treated me with thinners and waited to see if I'd make it. They told me that had I not been in such good health or had I been overweight I would have probably died.
Now for the bad stuff:
After I got out of the hospital they told me I'd need to take warfarin the rest of my life, I'd have to stop taking hormones, and I could no longer continue my near-vegetarian diet. I was pretty crushed and for two years had no hormones, ballooned up nearly 50 lbs due to my new diet of cheeseburgers and other crap. I was so miserable - my body dysmorphia was worst than ever and my dysphoria, which had been effectively controlled on estrogen, was raging out of control. Additionally, I developed osteopenia due to a lack of hormones in my body (I already had an orchi so I had no estrogen or testosterone during this time) and have to take Fosamax the rest of my life (and trust me, the side of effects of this are much, much worst than anything with warfarin).
Now for the good stuff:
I get my blood checked between 1 - 4 weeks intervals and have for 2 years. I've never had track marks (except when I left the hospital t he first week) and none of the bruising has been permanent (and my doctors LOVE to go to the same spot on my arm). You might be sensitive to permanent bruising, but I've never seen anything of the sort on me.
I have been on warfarin for about 2 years and have had no negative side effects from the drug itself. It is a highly effective blood thinner, but in too great of quantity can cause internal bleeding. It was used to kill rats by giving them enough to cause extreme internal bleeding. It shouldn't be news to you or anyone else that using something to excess can kill you. So it is a bit melodramatic to continuously call it rat poison and will only make you feel worst about it. You will be fine, just don't overdose on it.
I got sick of how I looked and told my doctor I'd be going back to full on vegetarian last month - leafy greens like spinach, salads, everything. She consented and we worked together to find me the right dose of warfarin and to monitor my blood. The rule for Warfarin is, "Dose to your diet, don't diet to your dose." Now immediately after getting out of the hospital and when you still have a shrinking DVT it makes sense to be excessively careful - but that is only temporary. If you end up on warfarin permanently, you can incorporate veggies back into your diet working with your doctor.
I read about how some post-menopausal women have to take warfarin but still take HRT. I figured there was hope, that taking warfarin and having a clotting disorder did not mean HRT was absolutely out. I approached my doctor about this earlier this month. She explained that there is significant risk in continuing HRT with my current blood disorder, but if I understood the risks, she would work with me as well as a hematologist to allow me to begin estrogen again. I haven't started it yet, but I will by the end of January. Getting back on estrogen should help my bones as well making it so that I no longer have to take Fosamax.
As a final word, I understand you are upset - so was I, and many of the things the doctors tell you can be very scary and intimidating. They are trying to look out for you so you can continue to live a long and healthy life based on the standards they have for all patients. However not all rules are fixed, but I don't recommend self-treating either. Work with your medical professionals to find a solution that works best for your life.
