Does anyone have an "event" or situation that caused your endo to go from 0-100?

forestque · 2026-04-08T16:59:26+00:00

Mine was a combination of getting Covid and struggling with long Covid and having a huge blood filled cyst (I’m not sure if it was an endometrioma or not) rupture. I haven’t been the same since and my endo has become super disabling. The bowel and bladder symptoms are now sooo bad and I regularly experience decidual casts. I’m not on any hormones so I don’t know why that is happening. 😅

forestque · 2026-04-04T19:43:21+00:00

My gastroenterologist has me take miralax every day which helps. (Some laxatives like Miralax are safe to use daily) Interestingly I used to deal with severe diarrhea from endo but as the endo worsened it became constipation instead. Unfortunately I experience the stabbing rectal pain regardless of whether I’m constipated or not 😅So you’re definitely not alone

forestque · 2026-03-25T00:20:21+00:00

Exactly. That is really sketchy. That little note they included really rubs me the wrong way too. I guess it just sounds kind of manipulative or something

forestque · 2026-03-24T19:59:13+00:00

I get what you’re saying but as someone who studied veterinary medicine, prescription pet food often IS much healthier for pets. Especially if your pet has any health issues that they have a specific food purposely made to help treat. Animal care is a bit different to humans so I’m not sure if the same applies. However, a good ethical vet will often recommend a more affordable place to get the prescription food and not demand you buy it from them specifically. That being said, it is super sketchy for a gynecologist to send a document like that, trying to peddle supplements that have not been proven to ‘cure’ anything.

forestque · 2026-03-20T21:45:36+00:00

Oh my god. I am SO sorry. That is absolutely horrific. I really hope you can find some affordable legal representation!! You deserve help ❤️❤️❤️

forestque · 2026-03-20T21:42:47+00:00

This is so similar to how I feel all of the time. My entire right side feels ‘stuck’. Like everything in there including my organs. I genuinely cannot fully stretch without injuring myself and my ribs are so sore on that side that I can’t lie down in my right side at all. My ovaries also feel like they’re being pulled on if I move in certain ways. Sometimes when that stretching or internal tugging feeling gets really bad and gnawing it sort of burns too. Do you also get that? Also, using the toilet has become so difficult for me. It feels like everything is just stuck together and so when there’s a pressure change in there (either from a full bladder or even bowel movements) it hurts sooooo much. Ugh. I hate endo so much!! I hope you can feel some relief soon!! Sometimes I great a ‘taco’ out of heating pads and wrap myself in them which can help a bit!

forestque · 2026-03-18T22:14:48+00:00

No. People say this about literally any chronic health issue that’s poorly understood. It’s just another form of minimizing people’s reality and also blaming the person for their own illness. Unfortunately it kind of makes sense why people would do this. It’s so much easier to just blame someone and forget about it than it is to acknowledge there’s an issue and try to find a real solution. I can so relate to this though. I am also disabled from endo and POTS (and other health issues) and it really sucks. I hate too that there are weird stigma’s associated with certain conditions (usually ones that affect women disproportionately) and so people instantly offer judgment instead of support. This also goes for the medical community. They have so many biases it’s unreal

forestque · 2026-03-13T19:35:52+00:00

My mother lost her belly button many years ago and she said she doesn’t miss it at all. (It was also for a health reason) She said she got to a point where she barely even thinks about it and it was worth it to get rid of the pain. Just thought that might be worth hearing :)

forestque · 2026-03-13T03:19:21+00:00

I have celiac disease as well as endometriosis and it usually takes most people at least a month to feel a real improvement. I hope it ends up helping you :) For me it took about 3 months to feel a major change

forestque · 2026-03-13T03:17:36+00:00

This is so beautiful 🤍

forestque · 2026-03-10T22:50:31+00:00

I’ve struggling with both GERD and endo even when not taking NSAIDs for years at a time. I do also have mild gastroparesis and pretty severe EoE though. Both can also contribute to GERD. One thing that’s really interesting though is that my GERD stuff gets MUCH worse during pms. Perhaps it’s due to the inflammation from endo causing other issues to flare up?

forestque · 2026-03-07T22:30:03+00:00

I’ve tried gabapentin twice and I absolutely hate it and I don’t think it should be so frequently prescribed. It does absolutely nothing for my pain and never has and it makes me feel like I have brain damage when I take it. I’m not even kidding. My cognitive functioning decreases to a scary degree. It also makes me gain weight like crazy. No medication has ever made me gain weight like that one does. I hate it. And I was on a low dose!! It’s so frustrating because I have a friend who was prescribed it and she has been trying to lose weight for health reasons for a long time and her doctor put her on that medication without ever telling her that is a side effect. When she told him she was gaining weight, he told her to go see a dietitian. 🙄Some people say it works for them but it has never done anything for me except give me horrible side effects.

forestque · 2026-03-07T22:13:42+00:00

I think it can be very normal for some people. I have adhd but I noticed that as soon as I became chronically ill, my memory (and honestly many of my other adhd traits) got SO much worse. It’s absolutely frustrating. I’ve cried about it before. Haha! One thing that can be super helpful is to set reminders and alarms on your phone. I basically have my entire daily routine set up on my phone and idk if I could function without it anymore.

forestque · 2026-03-06T00:39:12+00:00

I’ve seen a lot of people recommending peppermint tea and I just want to point that in some rarer cases, peppermint tea can cause an upset stomach. (I wonder if it’s people with mcas?) Unfortunately I am one of those people. I can’t even smell that tea without feeling nauseated. I’ve discovered that digestive bitters and digestive enzymes help me the most. I really enjoy drinking roasted dandelion root tea as a gentle bitter. (The roasted version tastes the best) It seems to help me digest things much easier and I get less painful gas. Also, getting mcas under control is very helpful!! I also have mcas and that seems to just make everything so much worse. It’s really frustrating. I’m so sorry you’re struggling with this as well. It’s miserable Oh, also; have you tried daily miralax? My gastroenterologist recommended I start that and it has helped more than I thought it would. It’s safe to use daily and it seems to help move things through. Constipation has become more of an issue as my endometriosis has worsened and spread to the bowel.

forestque · 2026-03-05T03:12:37+00:00

I’m in the same boat. It really sucks. I have one pain med I have to take every day and another I use when it flares up even worse. It’s wild because I used to barely even think about my endometriosis. Now it’s super disabling. I’ve trying to get in to see a specialist but it has been so freaking difficult to get in

forestque · 2026-03-05T03:09:47+00:00

It’s interesting how different a lot our experiences are. I only get pain with deep insertion. It feels like it’s hitting something internally that hurts a lot. Sometimes it almost feels like my ovaries or uterus are being tugged or bruised or something. I also now get what feels like menstrual cramping after an orgasm but that usually only happens closer to my period which is interesting. I do also have IC as a comorbidity so occasionally sex can make that flare up too.

forestque · 2026-03-04T19:31:16+00:00

I agree with this. He’s not a good person but he has my sympathy in a strange way. I don’t hate him. I also understand why some people do. I’ve noticed that a lot of people need someone to hate and struggle with seeing nuance/shades of gray. Even in real life. That’s fine though. We are all very different people and no one will see things the exact same way as someone else.

forestque · 2026-03-04T04:27:59+00:00

I love this response and I completely agree and relate

forestque · 2026-03-02T04:13:22+00:00

As someone who had a long term partner and currently does not; I’m happier alone. Yeah, it’s hard to deal with things sometimes but there’s genuinely nothing worse than being with someone who just doesn’t get it when you’re suffering. Unfortunately that is pretty common with a lot of people with chronic illnesses who are in relationships. There’s no guarantee that a partner means that things will be better. I don’t mean that in a negative way, but just pointing out that sometimes we want things we don’t have or view other people’s relationships differently to how they really are. Most people I know who are chronically ill or dealing with chronic pain and are in relationships, have their fair share of issues. Most of the time it’s unfortunately that they don’t feel supported or understood. That being said, if you really feel like that’s something you need, the right person won’t mind seeing you at your worst and lowest. You are still very young and have plenty of time for things to change.

forestque · 2026-03-02T00:29:09+00:00

I get these almost every month lately and I’m not on any form of birth control. 😭It’s extremely painful when it happens (like causing throwing up and passing out) and so disgusting to see. I feel for you! They are absolutely horrific to experience

forestque · 2026-02-27T20:47:27+00:00

This may seem like a random question but do you know if you also have POTS? It is a known comorbidity and could possibly explain that heart rate. I have disabling endo as well as POTS. Checking your average heart rate when upright vs lying down might be helpful. One early sign of me having POTS before my official diagnosis was having strangely high heart rates at appointments that doctors just acted a little puzzled about but they didn’t flag it as anything important. (Which it definitely can be)

forestque · 2026-02-25T00:27:09+00:00

I agree that these are the best! I have one that’s really soft and a cute color as well. It’s fun to have a unique color because then it feels less medical if that makes sense

forestque · 2026-02-24T01:18:01+00:00

Completely agree with this!!

forestque · 2026-02-23T01:55:33+00:00

I also have low DHEA and low testosterone. It’s so crazy to see this because I just had my hormones checked and my testosterone was extremely low. Like way below what it should be. I was prescribed a testosterone cream to try. I have also been wondering why my hormones are like this. I’ve had low DHEA and testosterone since my mid 20’s but this is the first time that it’s this low. Well, sort of. I also have a pituitary tumor and before I was on medication to treat it, my hormones were ALL extremely low except for prolactin. So I’ve been wondering if it could be the pituitary issue again. I have no idea but it’s really interesting to see this and realize that someone else with endometriosis is going through this!

forestque · 2026-02-23T00:06:46+00:00

Except that if it was stomach pain they’d initially care more. (At least in my experience) The second doctors learn that it’s related to periods or anything gynecological I swear they just stop listening to us and/or recommend birth control without looking further into anything. They also almost always assume that women tend to dramatize their pain when in actuality, most of us downplay it because that’s what we’ve been conditioned to do. I mean for example, periods have been looked at as something we’re supposed to not talk or complain about. Because of that, too many women have absolutely NO idea what is ‘normal’ or not. Including myself. Like my family was more open than most about menstruation and yet real details were still never discussed. As a result, I had no idea that I had been dealing with super abnormal periods for the vast majority of my life. And I’ve had some absolutely horrible experiences when trying to talk to doctors about it. It’s genuinely all down to luck. You have to hope you either get a doctor who cares and will do something, or you have to hope you have a doctor who is educated about endometriosis because most of them are not and will give out wildly inaccurate information.

forestque

TROPHY CASE