1. do you track your moods/emotions? i suggest tracking them like 3 times a day. i do this and it's been super helpful to learn about myself and my patterns. it's also helping me to see more clearly how often im feeling negative vs positive. the mood i wake up in has very little to do with my mood the day before a lot of the time. i noticed this after tracking.

  2. I ordered a vaporizer, and hopefully, it'll be here in a few days. I don't enjoy smoking that much, and the smell lingers, and I can't really control the dose. But I also use oil (made by a friend of mine) to massage my belly (Arvigo massage) and will try to make edibles. I know some people dip tampons in cannabis oil or make vaginal tablets.

  3. unfortunately i enjoy smoking quite a bit and have gotten myself into a habit of doing it every night now to help with the pain. i want to switch to other ways to consume and a lower dose. it's just so hard for me to make changes to my habits.

  4. Do you use tobacco? Maybe keep smoking and cut the tobacco down. I used an herbal blend I made instead of tobacco but now I just smoke them clean.

  5. i actually don't use tobacco, but i do vape, and im sure whatever is in vape juice is just as harmful! im on my way to quitting, ive been trying to gradually vape less until im just not at all anymore.

  6. never trust anyone who says they know you better than you know yourself after only a minute of listening to you! that's honestly ridiculous, im sorry you had to experience that kind of gaslighting.

  7. To be fair, adhd is usually comorbid, ie it likes to walk hand in hand with other mental illnesses including substance abuse, depression, anxiety and even bipolar disorder and autism. Sometimes, depending on how a pt presents, you can easily be fooled into thinking what they have is one of the co-morbid disorders. It’s not that straight forward. On top of that some adhd people are very good at masking and appear very high functioning. Lastly there is a acquired form of adhd called VAST or variable attention stimulus trait that is acquired by neuro typical people that can further cloud the clinical picture. So it’s not a matter of knowing yourself better. Mental diagnosis is an ongoing process not like looking at an EKG. I urge people to build a relationship with your clinician. It’s very dangerous to get it wrong and the wrong meds can trigger a bad and even fatal response.

  8. totally agree with everything you've said. i just feel like from the post, it sounds like the Dr doesn't seem to know what they're talking about. but i probably should have taken the time to include some sort of disclaimer lol

  9. i don't have any experience with lupron so i can't help there but you're definitely not insane. sorry you're going through this ♥️

  10. Ooh so actually, I will say I had been on birth control 16-26 and stopped taking it for several months, and that’s when my symptoms of endo first popped up (gradually getting worse each month).

  11. the ER doctor thought she saw a stool plug on my appendix and that's why they did the CT, where they didn't see anything. ive been wondering whether it was endo she saw...but they never said anything besides "never mind, no stool plug"

  12. Of course! And Idk if you’ve tried this yet, but triphasic bc has worked the best for me symptom-wise

  13. My doctor never mentioned IBD… but it would make sense as I have unfortunately soiled myself before due to the urgency. Unfortunately my family doctor wrote off my symptoms as IBS and told me to figure it out basically. I’ve seen her probably 5 times in the last 3 years about this and she’s never given me a referral to any type of specialist. I should probably just look for a new family doctor at this point. Thanks for your advice!

  14. im having very similar GI symptoms but not quite as extreme as yours! i got a referral for a GI specialist - now im doing a colonoscopy next week. i think they can find IBD with that test so i can keep you posted on whether i learn anything helpful...

  15. Well, I agree about a lot of the system(like my maintenance inhalers shouldn’t be over $100, I’m currently taking one not for asthma because the copay card brings it to no cost) but the pharmacy being able to prescribe a medication just baffles me. But maybe they learn different things then they do here in the US and that’s why that can.

  16. my experience is that pharmacists know way more about medication than doctors do!

  17. They would know more about the chemical make up and all that part. But the diagnosis and stuff would be more for the doctor.

  18. The tugging feeling I had near my right ovary was because I had organs adhered to other organs or things they shouldn't be adhered to. Although the adhesions could be in a separate area but the pain is being referred to that right side.

  19. No, they checked that area with multiple ultrasounds both internal and external.

  20. my body rebels if i am anywhere outside of exact homeostasis lol. basically, if i have to pee, if i feel hungry even in the slightest, if i sleep too much, if i sleep too little - i am in pain.

  21. Thank you so much! This is really validating to hear. With my previous misdiagnosis I vacillate between, don't overreact because of past trauma, and, no something is definitely wrong and I need to know what it is.

  22. You know your body best, and if it's trying to tell you something, it's hard to ignore. If you feel something isn't right, trust your instincts! Here for you ♥️

  23. Just an update since you did respond to my OP. I'm even more convinced now. I was unsure before because I didn't think it was close enough to my period and a lot of symptoms for people tend to be around then. But lo and behold - got it yesterday evening. I recently started getting periods again over the last several months, as the hormones in my mirena have abated due to needing it changed.

  24. thanks for updating me! getting off birth control is when my symptoms gradually started emerging and getting worse over time with each period. i wonder if it could be the same for you since your mirena is losing its efficacy.

  25. I started Norethindrone (5 mg) a week after my lap diagnosing my stage 4 endo. That was half a year ago. My mood and productivity have been awful and I’m having various menopause-like symptoms (early 40s so it’s not time for that quite yet).

  26. You don't need to apologize to me, I'm sure we all wish we had happier accounts 😂

  27. My understanding is that there’s a decent chance it’ll return/spread again if I just let myself cycle “naturally.” One of these days I’ll get an appointment and ask for clarification.

  28. Man I dunno cause I just assumed it was my endo getting worse, but I just started Milli (combo pill) in addition to the IUD ive had for years and man…I’ve not been having a great time 🥴🥴

  29. I wonder if that's it then! I was googling earlier and saw that the pill can impact the gut microbiome. I know my microbiome is seriously messed up already lol so I wonder if it's just ultra sensitive to the hormones. Idk. I can't take it anymore though. I'm spending way too much time in the bathroom and I'm so sick of waking up in pain.

  30. I’m so sorry you’ve had this experience. When you say your doc is a well known Endo specialist - according to which standards? Have you seen the list of doctors on Nancy’s Nook? (Endo website). Excision surgery with a trained specialist is the gold standard for Endo care - if your doc is downplaying surgery to treat Endo, that is suspicious. You may want to get a consult from a different specialist.

  31. Thanks for your comment. Yes, he is listed on Nancy's nook and has wonderful reviews! He said he would recommend surgery if hormonal treatments fail to manage my symptoms. So maybe I just need to give the birth control more time / more of a chance? I just thought the surgery would be a good idea anyway since it would get some of the Endo out... especially since I had read that it was the gold standard!!

  32. It's very reasonable for you to want answers, and it's absolutely okay to not want to go down the pain management route at this point. Dr appointments can be so hard already with the inherent power differential, but it's so important that you are able to feel heard and valued by your Dr. It's your body - you can always seek other opinions.

  33. Thank you so much for your kind and validating words. I am going to start drafting an email - great idea!!

  34. I recommend you update the parts about continuing your relationship, and send the letter. You deserve to be heard and this feedback is important!

  35. So I've been feeling a lot of the same doubts you are! For context, I had a few episodes awhile back which made me seek medical care- the episodes of pain, mental fog and intense emotions/mood swings were mostly around my period. Once I started hormonal bc to help manage my period pain, the pain increased a lot, as well as some other symptoms.

  36. Hi thank you for replying. Your post has somewhat put my mind at rest. I have moments where I'm unsure if I'm just either imagining things or if my contraception is the actual issue. I've had so many tests and so many scans because in losing my hair to the point I have two large bald spots, everything always comes back fine. The only time a scan came back with something was an ultra sound when I first saw my specialist. He said I have a cyst on my right overy. Once my bloods came back that my folic acid and b12 where low. Sometimes I wonder if I'm doing the right thing going for the hysterectomy and then other times when the pain or bleeding starts I'm 100% positive I'm doing the right thing.

  37. When the pain goes away as quickly as it started, it's easy to imagine it's been exaggerated or that I'm making things up. I gaslight myself on the daily! And of course it's so easy to believe the gaslighting because doctors gaslight me too! Haha.

  38. I suspect I have endo. I have dizziness and lightheadedness up on standing sometimes, other times just randomly.

  39. Paper bag pants are my go to for job interviews or anywhere that I need to dress up for, otherwise it’s baggy sweatpants 24/7

  40. I've never ever heard of paper bag pants! I'm going to have to check these out!!

  41. Jeans are tough, but I have found success wearing Levi's 311 shaping skinny... most of the fabric used is quite stretchy in the waist and legs - which is great if you get swollen legs like me.

  42. Thank you! I know TikTok says skinny jeans are out of style, but I refuse to accept that. I love me some skinny jeans

  43. Same. Only thing I have to say is stop guilting yourself for smoking weed. I smoked heavily for about two years pre-diagnosis, and it was because it was the only thing that allowed me to function. I was very upset with myself and couldn’t understand why I was so dependent on it…until I realized that whenever I didn’t smoke, I was in CRAZY pain. For me, my endo pain is very consistent background pain with episodes of severe stabbing pain. Weed took that away, for YEARS. I finished college, got married, started a job…and NONE OF THAT would have been possible if not for marijuana. Its my second line of defense against endo, after my mirena. It doesn’t fuck with your stomach lining like Tylenol or ibuprofen, which was important because I have bowel endo and they literally made my stomach MORE upset, even when they calmed the pelvic pain. It’s not addictive like other pain killers, I don’t think I need to go into why opioids are a BAD choice for dealing with endo pain. What other pain relief options are there?? There’s no cure for this disease, and a FEW treatments that are hit and miss at best. When you have endo, you’re basically doomed to a life of pain. Weed takes that pain away and has very few other consequences. Don’t feel guilty for doing what you need to do to survive.

  44. My parents really drilled into me a sense of.....If something is wrong, it's because of me, because I'm not doing the things I need to be healthy. So for years I have chalked all my symptoms up to natural consequences of not being a healthy person who eats well and goes outside often and exercises and doesn't use substances. So much self-blame.

  45. SAME my parents did the same! I just wasn’t eating enough or exercising right…but I didn’t know my body well enough to say “I can’t do these things because they literally make me feel like I’m dying” not because I don’t want to!!! I used to be SUPER active as a kid, but it all went to shit a few years after my period started. I had to quit cross country cause I was in so much pain all the time, and the severe EXHAUSTION was something I could never put a name on until recently. I’m convinced this was because of endo. But my parents saw it as lazy. In college I started smoking weed. It stopped my background pain, and I noticed that I could GO TO THE BATHROOM without extreme pain. I have ibs or whatever, I’ve been constipated ever since I was 15 (or…shortly after I started getting my periods 😑). I also have ADHD and it calmed all the background noise and allowed me to focus on ONE THING for the first time in my life…It was awesome! Weed became a regular part of my life, and I felt like a million bucks when I was on it! I wasn’t in pain!!! After using regularly for about a year, I got real sick. I now recognize this as an endo flare, my first really bad one. Because I was throwing up from time to time and they didn’t find anything on my colonoscopy/endoscopy, they assumed I had CHS and sent me out the door. I listened to them and stopped smoking for about 6 months. NOTHING changed in that time, except my stomach pain got WAY worse, and my functionality was down to zero. I couldn’t focus, and was ALWAYS in pain. I nearly had to drop out of college, and ended up failing like half my classes that semester.

  46. Sounds like we have a very similar upbringing/childhood experience in some ways!! It sucks because I know my parents did their best, and they really were great parents, but I think they were a little misguided... Things were tough after my first period too. I was super depressed, and when I told my parents and asked for help, my mom printed out an article about how watching TV all day can cause depression and then printed another article about how going outside and exercising helps depression. I internalized that as - I caused my own depression and I could cure it if only I weren't so lazy. And to this day I continue to gaslight myself. And I honestly didn't even realize it until this post.

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