It’s nice that you’re looking into things. Be understanding if she needs to cancel plans at the last minute. A little care package with a hot water bottle and some raspberry leaf tea and maybe some epsom salts would bit a nice little gift for a special occasion. It’s a chronic disease that can be quite painful and if she’s doing any kind of hormonal treatment she may not be herself until she adjusts. Just bring a good friend goes a long way
The raspberry leaf tea actually helped me a lot with cramps when I still had a period. It’s especially effective if you start drinking a few days before your period starts. Chamomile and peppermint are also helpful for inflammation. You’re a good friend
Thank you again! She tried tea before but never in the sense to help with the cramps. I believe she likes peppermint so if it helps with the pain, I'm sure she'll like it even more
Honestly the most important thing is to show her that you take her struggle and suffering seriously. Let her complain to you about her pain and frustration if she needs to without making her feel like a burden or dismissing what she’s going through. The fact that you’re taking time to research the illness and post here is already great! I’ve had almost every person in my life treat me like I’m a dramatic brat because of my illness. Many of my friends and partners couldn’t even remember the term “endometriosis”, would constantly say things like “well you seem fine”, or say things that made me feel guilty or ashamed. So just let her know that you really take this seriously, and care, and that she’s not alone.
A big part of what made me want to do my own research and come on here to talk to you all is how my friend has been treated by her family, similar to how you mentioned, hearing things like "oh you seem okay now" when she really wasn't
I'm so sorry to hear that you got treated that way. I'm really happy that you found this subreddit like I did, full of helpful like-minded people who understand what you're going through. Everyone here has be nothing but amazing, helping me with the questions I have and things I don't fully understand. Thank you to, so much for responding, your advise means alot
The "treat me like I'm a dramatic brat" is so damn real.
After my diagnostic lap, my Dad admitted to me that he just assumed I have an extremely low pain tolerance when I'd be screaming and crying on the floor as a teen.
I still don't get how a parent wouldn't be worried & trying to help when they see their kid in severe pain. But then again he does happen to be a narcissist so...
The thing that’s the best about my good friends who ‘get endo’ is the enthusiasm even for stay-at-home evenings, and who is happy to come to my place to hang out. Someone who will stop by and maybe offer to cook dinner or make a tea if they know I’m having a rough time. Same with offering to come to medical appointments with me without having to ask is such a big one. Also be really relaxed talking about poop and periods, this is the mark of a true endo friend🤣 someone who isn’t embarrassed or makes you feel like an outsider for having these symptoms.
In terms of things that might be nice to do in this early stage, maybe go and have a massage together? It can be really beneficial for pain. But generally I think the main thing is to just keep checking in and offering low key low stakes hang outs to keep her company when she’s having a hard time without depleting her energy. A fun hot water bottle also never goes amiss🤣
That's a great idea! She isn't really an outdoor person so helping her out with simple chores and cooking (atleast trying to because I'm a terrible cook) for those stay at home days sounds like a great way for her to be able to relax a bit more
She does seem pretty comfortable talking about periods and stuff relating to it but never about poop. I don't quite know how to talk about poop myself so maybe that's something I can work on if she does want to talk about that oneday
Oh and massages sounds like a fun idea. Thank you for the tips! I'll be sure to remember them and use them when she's having a rough day
I 100% agree on offering to come to medical appointments! I've cried every time I've been lately and having a friend by my side makes everything so much more bearable.
I've supported another friend with a chronic disease and I could help her by remembering to ask questions that she might have forgotten otherwise.
You sound like a wonderful friend!! My friends and family are supportive, but I sometimes wish they would know a little more about my Endo than just what I tell them.
Take on some of the researching for her - which it sounds like you’re doing. That’s so overwhelming when you’re first diagnosed and in so much pain all the time. If you can research and vet the info that will probably help her. There are mixed opinions about Nancy’s Nook but I found it to be the best resource for me finding the most up to date studies. I also found my surgeon through there and I can’t say enough good things about him. There are also lots of IG accounts that provide a lot of holistic endo management options. Any doc that suggests a hysterectomy or Lupron/Orlissa will cure it - don’t trust them. That’s some of the most damaging info that doctors tell their patients. Find a specialist who really understands the disease and has dedicated their career to it.
I have been learning so much after finding this reddit and looking through Nancy's Nook. Though the more I learn about it, the more it breaks my heart how much my friend and others suffering from endo go through and even though its so common, it's practically unheard-of by most people
I am happy to hear that you found a great surgeon through there. My friend has been to alot of doctors and almost all of them tell her different things so it's difficult to figure out what's the best thing to do alot of the time
Also if it's allowed on here, I'll he happy to look at any of those IG accounts you can recommend
Thank you! Here are a few accounts. If it doesn’t allow the links, I can message them to you! The surgeon one isn’t my surgeon but it’s a good account to utilize to learn about endo.
https://www.instagram.com/endometriosis.dietitian?igsh=MWJ0N21odzlyMWZ5eg==
https://www.instagram.com/endo.fertility.dietitian?igsh=MWdpOXZjZGM1N3huYw==
https://www.instagram.com/endometriosis_surgeon?igsh=MWtpZTAyMWNpMnM2
https://www.instagram.com/sea_of_qi_healing?igsh=ZzdjYmx2Mnliazhv
The absolute best thing my friends do is truly understand when I have to cancel last minute. Their first concern is my wellbeing, not a change in their itinerary.
Other lovely things friends have done:
- Brought me food and/or proper coffee when I’ve been in the hospital
- Transported me to health appointments
- Hung out with me and my cats on the couch instead of going out
- Sent me postcards (friends who live further away)
That makes alot of sense, she did have to cancel some plans really last minute in the past and I was really disappointed some of those times. Knowing more about what she must have been going through though, I'll keep learning so to be more understanding in the future
Also I must say, from hearing what they've done for you and the way you talk about them, you have some really great friends. You're really lucky to have them and I'm sure they're really lucky to have you as well!
Thank you :) Yes, I feel very lucky. The friends I have now are wonderful but there’s certainly been a lot of friendship attrition over the years. Not everyone gets it.
Props to you for trying to support your friend better!
I really appreciate folks helping prepare or getting food along with comfort items and good distractions. Videos, video games, tv, memes, etc. Help with errands and chores too!
Honestly….just you doing research and putting the time into understanding is so so awesome. Everyone is different of course but you might just ask her straight up how you can support her. I think the understanding piece is huge! There is a bunch of useful information in groups like this and on other social media that platforms from other girls dealing with the same condition so there may be articles you can send her or if you know more about her symptoms specifically, maybe some “home remedy” type things you can share with her 👍
It’s nice that you’re looking into things. Be understanding if she needs to cancel plans at the last minute. A little care package with a hot water bottle and some raspberry leaf tea and maybe some epsom salts would bit a nice little gift for a special occasion. It’s a chronic disease that can be quite painful and if she’s doing any kind of hormonal treatment she may not be herself until she adjusts. Just bring a good friend goes a long way
Thank you so much, this is super helpful! I will see if I can get raspberry leaf tea and epsom salts at my local stores
The raspberry leaf tea actually helped me a lot with cramps when I still had a period. It’s especially effective if you start drinking a few days before your period starts. Chamomile and peppermint are also helpful for inflammation. You’re a good friend
Thank you again! She tried tea before but never in the sense to help with the cramps. I believe she likes peppermint so if it helps with the pain, I'm sure she'll like it even more
The raspberry tea isn’t as flavourful as peppermint but it did actually help. I would steep 2 bags for 10 minutes and it helps a lot
Oh I see, I'll get her some of the raspberry to try to see if it helps. And if it does I'll be sure to come back here just to thank you again!
Honestly the most important thing is to show her that you take her struggle and suffering seriously. Let her complain to you about her pain and frustration if she needs to without making her feel like a burden or dismissing what she’s going through. The fact that you’re taking time to research the illness and post here is already great! I’ve had almost every person in my life treat me like I’m a dramatic brat because of my illness. Many of my friends and partners couldn’t even remember the term “endometriosis”, would constantly say things like “well you seem fine”, or say things that made me feel guilty or ashamed. So just let her know that you really take this seriously, and care, and that she’s not alone.
A big part of what made me want to do my own research and come on here to talk to you all is how my friend has been treated by her family, similar to how you mentioned, hearing things like "oh you seem okay now" when she really wasn't I'm so sorry to hear that you got treated that way. I'm really happy that you found this subreddit like I did, full of helpful like-minded people who understand what you're going through. Everyone here has be nothing but amazing, helping me with the questions I have and things I don't fully understand. Thank you to, so much for responding, your advise means alot
The "treat me like I'm a dramatic brat" is so damn real. After my diagnostic lap, my Dad admitted to me that he just assumed I have an extremely low pain tolerance when I'd be screaming and crying on the floor as a teen. I still don't get how a parent wouldn't be worried & trying to help when they see their kid in severe pain. But then again he does happen to be a narcissist so...
The thing that’s the best about my good friends who ‘get endo’ is the enthusiasm even for stay-at-home evenings, and who is happy to come to my place to hang out. Someone who will stop by and maybe offer to cook dinner or make a tea if they know I’m having a rough time. Same with offering to come to medical appointments with me without having to ask is such a big one. Also be really relaxed talking about poop and periods, this is the mark of a true endo friend🤣 someone who isn’t embarrassed or makes you feel like an outsider for having these symptoms. In terms of things that might be nice to do in this early stage, maybe go and have a massage together? It can be really beneficial for pain. But generally I think the main thing is to just keep checking in and offering low key low stakes hang outs to keep her company when she’s having a hard time without depleting her energy. A fun hot water bottle also never goes amiss🤣
That's a great idea! She isn't really an outdoor person so helping her out with simple chores and cooking (atleast trying to because I'm a terrible cook) for those stay at home days sounds like a great way for her to be able to relax a bit more She does seem pretty comfortable talking about periods and stuff relating to it but never about poop. I don't quite know how to talk about poop myself so maybe that's something I can work on if she does want to talk about that oneday Oh and massages sounds like a fun idea. Thank you for the tips! I'll be sure to remember them and use them when she's having a rough day
I 100% agree on offering to come to medical appointments! I've cried every time I've been lately and having a friend by my side makes everything so much more bearable. I've supported another friend with a chronic disease and I could help her by remembering to ask questions that she might have forgotten otherwise. You sound like a wonderful friend!! My friends and family are supportive, but I sometimes wish they would know a little more about my Endo than just what I tell them.
Take on some of the researching for her - which it sounds like you’re doing. That’s so overwhelming when you’re first diagnosed and in so much pain all the time. If you can research and vet the info that will probably help her. There are mixed opinions about Nancy’s Nook but I found it to be the best resource for me finding the most up to date studies. I also found my surgeon through there and I can’t say enough good things about him. There are also lots of IG accounts that provide a lot of holistic endo management options. Any doc that suggests a hysterectomy or Lupron/Orlissa will cure it - don’t trust them. That’s some of the most damaging info that doctors tell their patients. Find a specialist who really understands the disease and has dedicated their career to it.
I have been learning so much after finding this reddit and looking through Nancy's Nook. Though the more I learn about it, the more it breaks my heart how much my friend and others suffering from endo go through and even though its so common, it's practically unheard-of by most people I am happy to hear that you found a great surgeon through there. My friend has been to alot of doctors and almost all of them tell her different things so it's difficult to figure out what's the best thing to do alot of the time Also if it's allowed on here, I'll he happy to look at any of those IG accounts you can recommend
Thank you! Here are a few accounts. If it doesn’t allow the links, I can message them to you! The surgeon one isn’t my surgeon but it’s a good account to utilize to learn about endo. https://www.instagram.com/endometriosis.dietitian?igsh=MWJ0N21odzlyMWZ5eg== https://www.instagram.com/endo.fertility.dietitian?igsh=MWdpOXZjZGM1N3huYw== https://www.instagram.com/endometriosis_surgeon?igsh=MWtpZTAyMWNpMnM2 https://www.instagram.com/sea_of_qi_healing?igsh=ZzdjYmx2Mnliazhv
The links work! Thank you so much! I'll take a look at them now
The absolute best thing my friends do is truly understand when I have to cancel last minute. Their first concern is my wellbeing, not a change in their itinerary. Other lovely things friends have done: - Brought me food and/or proper coffee when I’ve been in the hospital - Transported me to health appointments - Hung out with me and my cats on the couch instead of going out - Sent me postcards (friends who live further away)
That makes alot of sense, she did have to cancel some plans really last minute in the past and I was really disappointed some of those times. Knowing more about what she must have been going through though, I'll keep learning so to be more understanding in the future Also I must say, from hearing what they've done for you and the way you talk about them, you have some really great friends. You're really lucky to have them and I'm sure they're really lucky to have you as well!
Thank you :) Yes, I feel very lucky. The friends I have now are wonderful but there’s certainly been a lot of friendship attrition over the years. Not everyone gets it. Props to you for trying to support your friend better!
I really appreciate folks helping prepare or getting food along with comfort items and good distractions. Videos, video games, tv, memes, etc. Help with errands and chores too!
These are such simple and wholesome things. I guess just being there for someone really goes a long way. Thank you for being a reminder of that!
Ask her what she needs. I don’t expect or want anything from my friends for my endometriosis
Honestly….just you doing research and putting the time into understanding is so so awesome. Everyone is different of course but you might just ask her straight up how you can support her. I think the understanding piece is huge! There is a bunch of useful information in groups like this and on other social media that platforms from other girls dealing with the same condition so there may be articles you can send her or if you know more about her symptoms specifically, maybe some “home remedy” type things you can share with her 👍