1. 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.

  2. 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.

  3. 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 ♥️

  4. 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.

  5. 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.

  6. 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).

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

  8. 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.

  9. 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 🥴🥴

  10. 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.

  11. 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.

  12. 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!!

  13. 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.

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

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

  16. 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.

  17. 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.

  18. 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.

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

  20. 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

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

  22. 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.

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

  24. 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.

  25. 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.

  26. 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.

  27. 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.

  28. This happens to me. I can have sex and orgasms with my partner without pain mostly. However if I masturbate with my vibrator - I get really intense painful cramps that are enough to make me cry. I think for me it has something to do with the intensity of the stimulation?

  29. Googling is how I realised I very likely had endo. I then had to make a speech to my doctor convincing her and demand to be referred to a specialist. Then i demanded the consultant to let me have the surgery because I'd spend 18 years being neglected and gaslighted and patronised by doctors.

  30. This gives me hope that I really do know my body better than the dismissive doctors I've seen!!!

  31. I hope it helps 💕 this is such a shit disease, it plays with your brain nearly as much as it does with your body. The come and go pain makes you doubt it was ever there—because it leaves just as fast as it came. But that DOESNT take away from the pain you felt, and doesn’t make it any less real.

  32. That's exactly how it feels. As soon as the pain is gone I start thinking "well maybe that's normal pain and I'm just a big baby".

  33. SK7: are your eyebrows made of real hair? Me: yes? Haha SK7: why does my mom say everything about you is fake then? Me: what were you talking about when she said that? SK7: I don’t know…. Me: think about it. Were you asking a question about me, did you hear her talking about me? Sk7: she said your hair is only longer than hers because it’s fake. Me: yeah, I have hair extensions. shows extensions what else did she tell you is fake? Sk7: nothing Me: well, it doesn’t sound like she said everything about me is fake and that’s a common phrase people use that you’ve probably heard on TV. Either way, I think you know that’s not a nice thing to say about or to someone. It doesn’t hurt my feelings but in general, it’s not appropriate to repeat stuff like that so if we do, we need to make sure it’s actually what the other person said.

  34. It definitely feels weird to talk “bad” about the bio parent to the SK but I think of it this way- do I “criticize” their dad to them? Yes and it doesn’t mean I don’t respect him or am being mean (ex: your dad waits until the last minute to do things and I don’t like that). I always put “I” in there so it’s clear I’m giving my opinion and I always speak in a neutral tone. Think about how you would “criticize” or respond to your SD’s comment if it was your husband or sibling (someone you respect and want the kids to respect) said that she was repeating. That shift in mindset helped me go from feeling like I was inbetween biting my tongue and attacking BM.

  35. I'm in a similar boat. I think I have it too and doctors have been less than helpful. I was told that I should "let this go for awhile until you're ready to have kids, then you can come back in and we will figure it out together" I'm in pain. Why does my fertility matter more to doctors than my experience with pain and discomfort?

  36. I'm pretty anxious about this. Today, my abdominal pain is getting increasingly worse. It's just a lot of pressure & bloating down there. However, I am now constipated as well. Could constipation be causing the symptoms I am having? I'm tired more quickly, I don't feel great in general, and I'm panicking more too which isn't helping.

  37. I saw a post on here two days ago about laziness. i wish I could find the link. It basically said that laziness requires a lack of caring. If you care that you aren't doing the things you WANT to do, it isn't laziness. It's struggle.

  38. 100% I cry when I am frustrated, offended, angry, mad, upset, sad, happy - any deep emotion! It's extremely inconvenient.

  39. Holy shit this this me and my mom part two?? You literally have me shocked at how similar our situations are

  40. I'm sorry your relationship with your mom is like that. I hope everything is okay with you <3

  41. This is very worrying. I agree with the other comment and I know Reddit’s go to tends to be just leave but in this situation I think it’s completely justified. If he won’t even consider therapy then there is no way your relationship will be better.

  42. Thank you so much!! That is so helpful. I am going to look into the book for sure.

  43. I can understand how your parents seeming to care more about your looks than your mental well-being is extremely invalidating and upsetting. I mean, that's essential the message they are sending by offering to pay for cosmetic treatments but nothing to actually help you survive.

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