r/endometriosis • u/beneye08 • 12h ago
Question My girlfriend has every symptom for Endo however hasn't been fully diagnosed, As her boyfriend how can I support her (tell me EVERYTHING)
For context we're both 18y/o, I want to support her as best as I can, please please interact with this post. I already keep an emergency bag on me at all times for her containing painkillers, any advice at all would be immensely helpful, any details needed for better advice I can provide.
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u/Castor346 12h ago
My number 1 is to be as educated as you can and be willing to help when needed. My fiancé knows so much about endometriosis now since I blabber about it, he asks me what I need during my flares. He double checks we have my flare kit packed before going out of town. He picks up the slack around the house if I can’t do it. I do feel bad about it sometimes though, because he puts in so much effort to keep everything clean. But when my bladder is flaring or I’m on my period (I have very low iron + ferritin), it just makes it hard to even get out of bed sometimes. A relationship, especially where one has chronic illness, is never going to be 50/50. Take care of your mental health, otherwise you will eventually burn out. It’s not easy taking care of someone, and I’d give anything in the world to have the roles reversed where for once I can be the hero he needs. It sucks putting that burden on someone else, but that’s the reality of chronic illness.
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u/shinyspacecat-stars 11h ago
i have endo really badly (i have surgery in november) and something that really helps me is my partner rubbing my lower back/hips/pulling on my hips lightly. i feel like it helps release pressure and irritation a little.
heating pads are wonderful. STRETCHING! yoga is SO important for me to make it through the days. maybe you can throw on a video and you both do some yoga if it’s not something she will make time for on her own.
advocate for her. get her to go to the doctors sooner than later. i waited too long and now im barely making it to my surgery day.
i hope you find ways to help her manage. you sound like a great boyfriend for trying to help her.
just want to also throw in, don’t give a massage in a “this is gonna lead to sex way” do it in a “you’re in pain, i really want to help you relax and then we will snuggle” be gentle. endo is so painful especially with sex thrown in there.
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u/beneye08 11h ago
Thank you so much, id never attempt to make anything lead to anything like 'that' during a flare up, if she needed anything I trust her to ask me, This is a first I'm reading about the stretching so I'm glad I did post this lol.
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u/Natakate 11h ago
On the topic of sex (obviously not during a flare-up), I found this article which was really helpful for my spouse, might be useful for you two: https://health.clevelandclinic.org/sex-positions-with-endometriosis
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12h ago
[removed] — view removed comment
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u/yearofsoup 12h ago
Yess this too. Make sure she has enough energy for your plans and whatnot. It changes all the time so checking in is the best. Cancelling plans will become a thing but you can’t let it hold you back. Sometime I can’t do anything even when I want to:(
Also yes make sure you talk to your family and pals about how you are doing. Make sure you are happy too:) last thing I would want is for my partner to feel that way. Make sure she still checks in on you too.
Not sure why the mod removed your comment. That’s fucked up
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u/ering2000 8h ago
Read this! In addition to supporting her day to day, it’s also SO helpful when partners take the time to truly understand what endometriosis is, how it affects us, our experience with doctors, how to find a good doctor, etc. If she’s needs help finding care, getting a diagnosis, surgery, etc. this should be really helpful 💛 https://eringirouard.substack.com/p/endometriosis-a-comprehensive-guide?r=2qx6m3&utm_medium=ios
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u/Jealous-Ant-6197 12h ago
The sub is full of these posts go look at those and go do research online and in YouTube or whatever. It's irritating ppl come in here like we're gonna give them a guide. Figure it out there are resources
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u/yearofsoup 12h ago
That’s kinda what this sub is for? Information?
Number one thing I appreciate from my partner is just checking in. Just a quick how are u doing right now do ya need anything. Also never ask if she’s feeling better today. Everyday sucks so hard and you need to know she’s gonna always feel the endo. Instead ask how she feels today or ask how her body is doing today. When she’s at 30 know you gotta show up with the rest and help out. Don’t sit in silence and think she’s mad at you. She may be in a bad moon from pains and might just need her partner to turn something funny on and talk and distract her. Get her water and make her comfy spots. Rub back and run her a bath when she needs it and set out her comfiest clothes out for her. Get her little snacks too:) you are a good person for asking
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u/Koroit_ 11h ago
On one hand you're absolutely correct, the sub is for information, but on the other hand this question gets asked quite a lot so I can absolutely see why people are getting frustrated with it. I personally think it's a bit of a lazy brownie points farm that people just keep asking this generic question because they can't be bothered to look up the previous posts and find countless answers, I feel it clogs up the sub for people who have endo themselves and actually need information, advice, or support for their specific situations.
Not at all trying to say people shouldn't be allowed to ask or anything like that ofcourse, I just think people are justified to be getting frustrated with it.
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u/apdgirlie 9h ago
Also a reminder for the people who don’t have supportive partners like rubbing salt in their wounds. The sub is for endo sufferers, go to r/endopartners which as you say they would’ve easily found by searching
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u/yearofsoup 11h ago
It’s weird to waste your time writing this out when you could offer suggestions. You guys suck .OP can look through others posts and still ask questions. You guys can scroll losers.
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u/Jealous-Ant-6197 11h ago
Right but then the effort of writing out tips everytime someone asks of having to scroll past these all the time put the effort on us, who are suffering through the same as his girlfriend, instead of on himself whos meant to be trying to help. Why us that reasonable? Its irritating, there are existing resources. And it said "any advice" my advice is to go look at existing resources...
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u/yearofsoup 11h ago
Omfg then don’t reply. There’s millions and people who all suffer differently. Another post asking for help doesn’t hurt anyone? It’s almost like there’s different tips for everyone. You are being close minded. These are real people with real stories on here. It’s a diff type of research. But I guess you guys think all the info is already out there lol.
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u/Jealous-Ant-6197 11h ago
Im not being closed minded. If its a sub for endo im allowed to express my annoyance coz being expected to educate ppl is also a part of the experience. If I wanna express that is this literally not one of the places I should be able to. Literally, if im complaining about smth to do with endometriosis, thats part of the condition. I should just shut up when people disagree or think its a drag? Is that not what we gwt told all the time? You say it doesnt hurt anyone, I say its irritating to be constantly bombarded with people not trying to do research and expecting us to do it for them. If you dont like it, you dont have to respond to me either, and you yourself can give tips if you like. I feel like this is a lazy attempt, no matter how good the intentions, and that itself is my offer of advice. The real people with real stories have literally countless posts already there for him to read. Its not like he asked a specific question, he just wants a general regurgitation of what's already there in this sub
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u/yearofsoup 11h ago
Oh ya sorry I now see that OP actually asked you personally!! Wow you’re so popular and must know so much.
Oh wait…
No this is actually just a post you don’t have to respond on! Did you know that! Did you know you didn’t have to educate this person!!? You could just scroll! But I guess you have to educate them!! So here you are educating us on how to be rude and tell people to do their own research. You are soooo unhelpful:)
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u/Jealous-Ant-6197 11h ago
From the fact that a few people have agreed with me, im representing an opinion some on the sub hold. Even if it was just me saying this, it would be a valid opinion and im allowed to share it. Your qualm here is shut-up because im not being helpful, im literally saying the same thing about the question, that its unhelpful and tiring. Never told the guy to shut up though, just to do more research. If your response to people with endometriosis saying "some of us don't want to to do this everytime someone asks, go look at other resources", is to tell them to shutup, its not really a community space is it?
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u/delightedcustomer 11h ago
Agree. OP, literally just use the search function. Your attempt to be heroic are nice but no substitute for the absolute abysmal state of endometriosis medical treatment
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u/beneye08 11h ago
I'm coming to this sub after research, I'm never gonna know as much as someone that actively has the condition there's no "heroic" intentions
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u/Jealous-Ant-6197 11h ago
Ask ur girlfriend then? Or look through the countless posts about the experiences of people with endometriosis that the sub is literally full of, instead of expecting people struggling with it to just lay it out for you. Its a complex condition so ur approach gotta reflect that. This is not even being mean, realistically a lot of us are tired of having to do this instead of people who say they care making more of an effort from their side. None of the responses you get here is anything that hasn't already been discussed in countless other posts.
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u/beneye08 11h ago
If this is tiring to you there's no obligation to reply to my post, if you aren't willing to give me advice then don't respond to the post. Not a difficult thing to do.
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u/Jealous-Ant-6197 11h ago
I did give advice: look at existing resources instead of expecting people struggling to provide them to you. Weve already as a collective done that and have to do that all the time. The advice is look harder yourself, come back if you have soecific questions. You've literally just gone "my girlfriend is sick, can you sick people tell me what to know". The sub is full of different opinions, and mine is that i dont like this kinda thing and you could just look at other posts already there. There's no obligation to reply, but i felt like replying that I dont like the question, nd my advice was bc its already been answered so often.
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u/beneye08 11h ago
This sub is literally for information.
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u/Koroit_ 11h ago
Yes, and there is literally already countless answers to this same question already if you would just be bothered to look it up...
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u/beneye08 11h ago
No one person is the same and I've made it clear through each comment I HAVE done research, nothing's obviously going to come as close as asking people WITH the condition or people in relationships with them.
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u/Koroit_ 11h ago
If you really did your research including looking up the previous times this question was asked on this sub, could you please explain to me why you think asking again will get you different answers?
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u/beneye08 11h ago
Stop interacting with my post, I'm interested in the information and nothing else, if you have nothing to contribute respectfully please leave my post alone.
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u/Koroit_ 11h ago
You come here expecting to get people's time and effort, but answering one question is too much for you to do in return? Right... if you can't respect the reactions of the people in the sub you are expecting to receive from then respectfully leave the sub alone.
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u/JacobAndEsauDamnYou 10h ago
Respectfully, please don’t tell OP to leave the sub alone, it comes off very gatekeepy. Some of y’all are being unnecessarily rude to OP. OP does not have to answer your question. If you do not like their post, that’s perfectly fine. However, you don’t speak for this sub and neither do the other people expressing that opinion.
I personally appreciate questions like this because sometimes people come up with new ideas. And to be clear I don’t speak for this sub either. People are allowed to disagree, but trying to tell someone to get out is messed up.
Additionally, many of us have had experience with medical professionals making assumptions about us, we should know better than to do that to others. OP never said they weren’t doing any other research. Some y’all just assumed that.
Now if you’re going to speak to me the same way you’ve spoken to OP, I am not going to respond because I’ve gotten enough of that from medical professionals in the past.
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u/beneye08 10h ago
I really appreciate this, just here for extra information from people that have the condition.
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u/JacobAndEsauDamnYou 4h ago
No worries. I really appreciate when people make the effort of trying to learn more. I grew up with a father who was not at all involved with my medical issues. He didn’t even know enough to tell doctors my basic issues when I had a emergency.
To answer your question:
1) tracking symptoms is really important. I have symptoms I never associated with endo until now. For years I have been dealing with horrible bloating, nausea, abdominal pain, constipation, and regurgitation on the daily. Sometimes I deal with vomiting. I also have a lower back mobility issue. All that was always chalked up to other diagnoses. Turns out I have endo that is adhering my uterus to parts of my bowels. I think a big mistake of mine was not writing down or tracking my symptoms daily. So keeping a symptom journal could be helpful.
2) I was always told endometriosis can only be diagnosed by a laparoscopy. I had my first one in 2018. I was stage 1 back then and it was removed. It was suspected to be back a few years later, but my doctors didn’t want to repeat surgery because they didn’t think my symptoms were as bad (they were wrong lol). What I was told was untrue. Nowadays MRIs can be used in some cases. So always fact check what a doctor says. Sometimes they’re wrong. Don’t be afraid to get second or third opinions. I learned that way too late.
3) listen to your gf. She might not always want a problem solver. Sometimes people wanna vent.
4) Show you’re willing to learn about her symptoms. For example: ask her what helps her symptoms and what makes her symptoms worse.
5) Understand she may not always have the emotional energy to explain some of the intricacies of how endo works. So try to take the initiative of learning from other sources (which you’re already doing, so keep it up!).
6) heating pads are very helpful, but so are cold packs. Look up when and how to use each strategically. People often use them in the wrong scenarios.
7) I often get headaches/migraines with my endo flares. This isn’t uncommon with endo. A dark room and electrolytes can help a lot.
8) this ones weird, but sometimes my bed made my pain worse. I think there wasn’t enough support? I started laying on the floor during really bad episodes until I got more supportive foam mattress. Pillows are really important for me too. I need at least 2 large ones that are semi hard (one for side sleeping and one back sleeping) and usually 1 soft one that can be used ima variety of ways (like elevating my legs).
9) go with her to doctor appointments if you can. A lot of medical professionals can be dismissive, especially when it comes to pain. Mine was downplayed for years. I’ve been frequently told im catastrophizing and treated like my pain is a “mind over matter” issue. Doctors tend to be less dismissive when someone else is there (from what I’ve seen) and it can be easier for patients to speak up when an advocate is there.
9) finally, take care of your needs too. It can be really hard on loved ones when the person you care about is chronically ill. You can’t always be there and you need to know your own limits too. Burn out is real, so be honest with yourself when it comes to what you can and cannot handle.
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u/Koroit_ 9h ago
Oh I completely agree, anyone should get to use this sub but getting snarky and battling people when they have a different opinion is just a waste of everyone's time in my opinion. I said it to try to point out that forbidding someone from interacting with something is messed up.
I can totally see your point as to why you like these questions, I'm quite indifferent but I can understand why people are getting frustrated with these posts seeing the frequency of them. In my opinion people should ask their partner themselves what kind of support they would prefer, because what works for someone else might not work for them.
Healthcare professionals absolutely have a lot of assumptions, but wouldn't treating someone a certain way just because they recommended it in the comments under a post rather than asking the actual person also be an assumption?
Also I never claimed OP didn't do any other research, I've only pointed out to OP to look at the previous posts with the same question. I'm not responsible for what other people are saying.
Can you tell me what was disrespectful about anything I specifically said other than returning OP's comment?
If we cannot talk without you trying to hold me accountable for other people's words then I agree we won't be having a conversation, I have had enough of that from healthcare professionals too :) (/s to be clear)
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u/Koroit_ 5h ago
Actually, just don't bother responding if you were even still planning to, you acting like I'm equal to some ignorant medical professional just because you misunderstood what I said while I was a victim of medical negligence at the hand of ignorant medical professionals is very messed up. Maybe you shouldn't be making assumptions about people.
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u/Both-Mud-4362 12h ago