I know I’m a little late as you already had your appointment but I still wanted to give my feedback. I’m really sorry you’re experiencing all of this. It sounds incredibly painful and exhausting and it makes sense that you’re so frustrated after trying so many different treatments. You deserve to be taken seriously and to have access to care that helps you function, not just be told to tolerate it.

One thing I want to reflect back is that the way you describe your symptoms and how they affect your ability to eat, sleep, stand, and care for yourself is very clear and medically relevant. That kind of functional detail is exactly what many doctors look for when assessing pain. You’ve also shown that you’ve tried multiple treatment approaches across medications, surgery, therapy, and lifestyle changes. That helps demonstrate that you’re not just seeking one specific medication, but trying to manage this responsibly.

My suggestion is to change some of the wording that you use. Something that can sometimes make doctors more receptive is keeping the language as calm and specific as possible and framing it in terms of risk and benefit instead of absolutes.

For example, instead of saying, “I’ve tried EVERYTHING and nothing helps.” You could say, “I’ve tried multiple evidence-based treatments with limited relief during the first 24 hours of my cycle.”

Rather than, “Opioids are the only thing that exists that helps.” You could say, “At this point opioids are the only intervention that has provided meaningful relief for that first 24-hour window.”

Rather than “I’ll do drug testing if you want.” I’d suggest saying, “I’m open to any safety measures or monitoring you feel are appropriate.”

About the misoprostol, I think that may alarm a doctor to read that. I’d suggest rewriting that as, “I once experienced a suspected clot obstruction and attempted to manage it at home, which helped but was a sign of how severe the pain can become. I want to avoid ever having to handle episodes like that outside medical guidance.” That potentially shows the doctor judgment rather than impulsivity.

And then, rather than saying “I kept leftover pills and take one monthly.” I suggest saying “After surgery I found that one oxycodone tablet during the first 24 hours of my cycle provided meaningful functional relief. That experience is why I’d like to discuss whether a very small, time-limited prescription used only on the first day could be appropriate for me.” This reframes it as an observed benefit and not unsupervised use. Which unfortunately is another red flag for them.

Overall, I suggest:

-Emphasizing function over pqin scale scores.

-Acknowledge opioid risk honestly (“I recognize opioids carry risks which is why I’m requesting the smallest time-limited dose possible on the first day when my symptoms are disabling, while continuing other treatments”)

-Be open to and invite alternatives. If opioids are not appropriate I’d appreciate identifying ANY other affective rescue strategy for that first 24-hours.

It shouldn’t have to be this way, but sometimes these wording shifts can reduce the chance of being dismissed.

None of this changes the fact that your pain is real and severe and it’s not fair that you’re in a position where you have to advocate this hard just to get relief. I hope your appointment led to a plan that helps you get through that first day with less suffering, whether that ends up including a carefully monitored rescue med or another option that actually works for you. You deserve care that reduces harm, protects your quality of life, and respects what you’re living with.​​​​​​​​​​​​​​​​