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Endometriosis - Does Anyone Else Have This?

jurlew4111jurlew4111 United States - West CoastPosts: 30 Boards Initiate
Hello! I was wondering if there's any other people out there who have endometriosis like me. I don't know if it is TMI to talk about this, but there's a feed for sex and relationships, so why not this? It involves the female sex organs. Please stop reading if that makes you uncomfortable.

Ok. For those who don't know what it is, endometriosis is uterus tissue growing outside of the uterus. The tissue growing outside of where it belongs can cause a lot of pain and inflammation either during periods or not during periods.

For me specifically, my endometriosis has caused me to have insane amounts of pain in my abdomen and also huge amounts of nausea. Some of my pain turns into nausea.... Anyways, I was wondering if anyone else is having to deal with this, because I want to have other people who understand to complain to because it hurts like a mother... I have had a laparascopy to remove as much of the tissue as possible and also an IUD put in to lessen the periods, so I no longer feel like I'm literally dying every month because the pain and especially the nausea are so unbearable. For me, nausea is the worst feeling in the world and nausea is the cause of my anxiety. I have a panic disorder because of it.

Sooo, sorry for those people who just learned things they didn't want to know. Is there anyone else in this community who has this or knows people who have had this?

Thanks for listening...
I just want you to know that I honor what you’re going through right now. I am here for you.


  • LaineLaine Animal crossing Mama On a break 💕Posts: 2,496 Boards Champion
    Hey there! 
    Sorry to hear you're suffering with this! It really is dreadful.

    I myself believe I have it, I have been in hospital a few times with the pain when it's got so bad. 

    I haven't had any procedures thus far. I always put off a laparoscopy haha 

    I have an implant and since being on bc the period pains are much better.

    The nausea sounds dreadful, does anything like ginger or peppermint help you? :)

    🌈Positive thoughts🌈

    "What's gonna be left of the world if you're not in it?" ~ Bastille

    "Here's to the ones that we got
    Cheers to the wish you were here, but you're not" ~ Maroon 5
  • independent_independent_ Resident Coffee Addict ScotlandPosts: 5,376 Part of The Furniture
    I don’t have it but I do know people who do. It sounds absolutely dreadful. 

    My periods were always pretty bad before going on the birth control pill, they could be quite painful sometimes but the main problem was they were incredibly heavy. I was never investigated for anything but I do understand how awful periods can be from a slightly different point of view. 

    The people I know who have endometriosis it really does affect their life a lot, I think a lot of doctors (at least here in the UK) don’t really understand. If you go to your GP with period problems they just say you have to deal with it no matter how bad it is because you’re a woman and we all have to. Which obviously isn’t right because some people’s periods really affect them. 

    Not TMI at all, it’s good to talk about it and raise awareness.
    “Sometimes the people around you won’t understand your journey. They don’t need to, it’s not for them.”
  • coc0maccoc0mac Posts: 650 Incredible Poster
    Hey @jurlew4111

    I know a couple of people who have this and I really feel for you all. I think it's brilliant that you are here talking about it - it's so important to raise awareness, and I really hope you can find a supportive community who are going through the same thing :heart:

    If you ever want to let anything off your chest, we are all right here to listen! x
  • jurlew4111jurlew4111 United States - West CoastPosts: 30 Boards Initiate
    Thank you @Laine @independent_ and @coc0mac
    Laine, I'm so sorry that you also most likely have this! Yes, I would always take ginger and miraculously it worked! Before that, I was using a prescription to get rid of the nausea, but it made me very constipated. If ever your periods are unbearable, don't hesitate to have the surgery. It is a very minor surgery and I was able to go home practically immediately after it. Two years before the surgery, I went to see a gynecologist because the pain was so bad and I wanted to know what we could do. His diagnosis was that my anxiety was making my pain worse. Basically, "It's all in your head." But he said directly to my face that it was very likely that I had endometriosis, and then he went and told my GP his ridiculous diagnosis! I will forever dislike him. If he had actually taken me seriously, I wouldn't have had the worst pain, anxiety, and nausea of my life that forced me to try and find another gynecologist that might take me seriously. For those two years, I was trying absolutely everything for the pain and nausea. I was paying lots of money to see a naturopath who had me on progesterone and other things (she was the one who had me take ginger!). Praise the Lord it helped, but the other stuff wasn't helping nearly enough.

    Anyways, I decided to write about this because I was having really bad pain again last night and I'm worried that it's going to get worse and worse again like it did before. I also very much want to support all the other people who have this and encourage us to advocate for ourselves because many doctors aren't taking it seriously!! It makes me extremely angry.

    independent and coc0mac, I appreciate your understanding, encouragement, and awareness that this is an important thing to talk about <3 Thank you for being willing to listen even though it is mostly negative stuff :)
    I just want you to know that I honor what you’re going through right now. I am here for you.
  • JamJarJamJar Posts: 223 Super Moderator
    Hey @jurlew4111

    I cannot not say I've had endo because I'm a boy but my partner has been diagnosed with endo for the past 3 years and it doesn't sound easy. She's now had to have surgery twice and the doctors have told her the best strategy is to sit with the pain and find coping mechanisms. She is a doctor herself and so knows a lot about the anatomy and diseases and even with that I've seen how it has changed her as a person. 

    Endo also means that if you contract an STI then your chance of conceiving a child becomes a lot less likely. If you're someone who really wants to have a family when you're older, like my partner, then this can be tricky to come to terms with and I've seen how she has become way more independent (fiercely so), but still hopeful that she will have a family in the future <3

    Endo itself is something widely undiagnosed so in some senses it's a good thing that you've been diagnosed now. It doesn't make it easier, but there are a lot of people out there who are suffering in a lot of pain and don't know why. 

    I recently read a book called Conversations with Friends by Sally Rooney, have you heard about it? It might provide some company and a different perspective right now as the narrator in that book, Frances, a 21 year old bisexual studying at university lives with undiagnosed with endometriosis for the majority of the novel. I'll leave a link for it here in case you're interested :) 

    Anyway, hope this shows that you're not alone and that we all just want to reduce eachother's suffering a little bit <3
  • jurlew4111jurlew4111 United States - West CoastPosts: 30 Boards Initiate
    @JamJar, Thank you so much! I am so sorry to hear that she also has it :(

    Ever since I was little I had decided I never wanted to give birth because the whole thing is terribly painful and the nausea with pregnancy is unbearable in my opinion. I have extreme anxiety with nausea...they are 100% linked in my brain.

    Yes, coping mechanisms....I don't know. I am horrified to think it could come back so soon :( Yes, it is good that they actually diagnosed it. I was almost non functional as a human every month for a week because of it. And I ended up in the ER twice because the pain and nausea were too much and I have panic attacks because of it. There was really no alternative for me. It was have the surgery, or be depressed and possibly end everything because it was really bad for me mentally. I don't know if you can understand, but my mental state is absolutely terrible with nausea. I have a panic disorder linked to it.

    Thank you so much for sharing! I don't want to sound all negative and complaining...I might be complaining a bit though  ;) I wish no one had to deal with this.

    Thanks for the book recommendation! Books are my favorite things every, so I will definitely read it. I will first see if my library district has it, if not, I will probably buy it.

    Give your significant other a hug for me because I truly feel for her <3
    I just want you to know that I honor what you’re going through right now. I am here for you.
  • JamJarJamJar Posts: 223 Super Moderator
    Hey @jurlew4111

    We're all allowed to complain, we shouldn't feel bad about that ;) i also wish no one had to deal with this! 

    Love that you are a member of a library, i'm all about that recycled, sustainable reading whenever possible. I'm a big person for second hand book stores :)

    In your messages above, you say that the pain had started to come back. How has it been since you last posted and is this a new pain since you had your surgery?

    I will give my partner a big virtual hug from you (we are in different cities at the moment haha) <3
  • jurlew4111jurlew4111 United States - West CoastPosts: 30 Boards Initiate
    @JamJar, :) Yes! Sustainable living is the way to go (sadly it's hard to live that way with all the plastic being thrown at us).

    The pain is the same endometriosis pain as before. It happened a couple times a week or two ago and hasn't come back, but with my IUD it usually comes twice a month. It's real hard to know when I'm on my period or not haha

    Oh, I'm sorry you two are not in the same place right now! How long will that be for? I hate long distance :/ Thanks for delivering the hug!
    I just want you to know that I honor what you’re going through right now. I am here for you.
  • JamJarJamJar Posts: 223 Super Moderator
    @jurlew4111 Looks like we will be long distance for at least the next 2 years. We are in a polyamorous relationship, which actually lends itself really well to long distance. It's an interesting dynamic where we have both said we could imagine having a family with each other in the future, but we know that neither of us want that for 5-10 years so the place we're at right now feels very stable and feels quite organic. 

    What are you reading at the moment? Anything to recommend? :)
  • jurlew4111jurlew4111 United States - West CoastPosts: 30 Boards Initiate
    @JamJar, wait. How did you know I was reading a book ;) Haha just kidding. I recently finished the Vampire Academy series. I don't really recommend it though because it made me depressed almost the whole time. The emotions in stories affect me more than most people and the emotions throughout the series were "Everything that is happening is the absolutely worst thing that could ever happen and there is no way to make it better and what you must do is what will destroy your heart and soul".

    You may ask, "Julia, why are you reading this book if it causes you depression?"

    I would reply, " Well, yes, you are right. But I need there to be a positive ending because otherwise it will remain with me forever as something horrible and irredeemable." Does that makes sense?

    Either way, miraculously, it had a good ending and the love interest was brought back from evil to be basically himself again and they ended up together, but omfg, it was not worth all of the despair and sorrow throughout the books. I need a soul cleanse or something after it. So, I am now reading a regency romance because they are simple and good and don't require a lot of commitment on my part like a series would.

    How old are you btw? Just curious. I'm 23.

    I'm glad your relationship is working so well! That is the best thing ever. I'm seriously happy for you that it is going well :blush:

    The exact book I am reading is, "Temptation of a Proper Governess" by Cathy Maxwell (She has sooo many books). Another series I am reading is, "The Waking Land" by Callie Bates. It is amazing and is a fantasy/adventure with some romance series/genre. But, to try and give you more recommendations, I would like to know what your favorite genres are (and why if you have the time to explain).
    I just want you to know that I honor what you’re going through right now. I am here for you.
  • JamJarJamJar Posts: 223 Super Moderator
    Wow, that vampire series sounds like a trip. Those sorts of reads that are really challenging are great when you're in the right headspace, but often I find I have to balance out my reading with the following books I read to give myself a bit of a break and a chance to chill. (which is what you sound like you've done haha :) )

    I kind of understand what you mean about a book having a good ending, but I often find that the books I like the most are the ones that throw you into a world from the start with no explanation, and very often they don't really reach a proper resolution. Conversations with Friends was a book like that, and another book like that which I read recently was Call Me By Your Name. 

    I'm 24, so we're a similar age :) 

    In terms of my reading habits, I usually like to keep one non-fiction book and one fiction book going at the same time. For example right now, I am reading a NF book called Your Brain on Music and the fiction book i'm reading is Rules of Attraction by Bret Easton Ellis. For fiction books I usually prefer books with a bit of edge, so dystopian novels (e.g. Huxley, Orwell or Attwood) or books that deal with modernity in quite a different way, e.g. Bret Easton Ellis or Sally Rooney. I read a book recently called The Overstory by Richard Powers which is a fictional novel about trees and the climate crisis - super cool but also kinda depressing in how realistic it is. I generally try and keep my reading list as varied as possible so I'll take any recommendations you think would broaden my horizons. 

    If you're into fantasy novels, have you read Philip Pullman's series His Dart Materials? :)
  • jurlew4111jurlew4111 United States - West CoastPosts: 30 Boards Initiate
    I also like having some non-fiction going at the same time as fiction so that when I have enough brain energy to read non-fiction, I can make progress on those. I am currently reading "The Highly Sensitive Person" which is a non-fiction book about being a Highly Sensitive Person (which I recently discovered I am) and another non-fiction "Get out of your head" (regarding anxiety/depression mental/emotional spirals down). The fiction book I am reading is "Children of Eden" which I already read once, but I checked it out along with the rest of the book series and needed a refresher of what had happened. "Children of Eden" is based in a post-apocalyptic world where all plant and animal life is dead but some simpler plants like algae, and the only surviving humans live in Eden which was built to preserve some of humanity while the rest of the world recuperates. The main character is a second child when the authorities have a rule that each family can only have one child (similar to Among the Hidden). Lots of science fiction stuff in it.

    I just took a moment to look up Your Brain on Music, and I would totally want to read it! I'm going to see if my library has it (but they are closed for the next two weeks, good thing I stocked up on books two days ago ;) ) I have plenty of books anyway haha. Rules of Attraction..."a poignant, hilarious take on the death of romance." Uhm.....is that sad? Bad? Funny? Depressing? I dunno how to feel about it. I'm kinda in a sad mood right now anyways though, so everything that could even hint at sadness feels sad.

    His Dark Materials mentioned parallel universes in its description which reminded me of another book...and a couple other books off of that book too haha. Agh! I can't remember the title of the first one though. FOUND IT! "The Hazel Wood" by Melissa Albert (really creepy, so maybe you might like that??). The other two are "The Night Circus" and "The Starless Sea" both by Erin Morgenstern (magical realism which is really cool). 

    One of my favorite fantasy novels/series is the Throne of Glass series (seriously epic). I tend to read a lot of novels/series with strong female main leads, but they have some other strong characters too. Oh! The Kingkiller Chronicles by Patrick Rothfuss (I don't think this series is finished yet which is driving me insane) it has an interesting male lead, look it up because I don't know how to explain it in a short way, it's too complex.

    From the writers you mentioned, it seems like most of them are the kind of authors we read in high school/college to analyze their texts. Very literary haha. I don't know how else to describe them. Kind of philosophical maybe? I'll stop here for now...I want to read haha
    I just want you to know that I honor what you’re going through right now. I am here for you.
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