Endometriosis is a common medical condition where the tissue lining the uterus (the endometrium, from endo, "inside", and metra, "womb") is found outside of the uterus, typically a...
|
Dealing with Endo
|
Watch this |
| View More Posts Ignore |
Hello, I'm new. I feel the need to post something, somewhere, to help me cope with my endo.
I've been dealing with an improper diagnosis of IBS for the last 10 years. Within the last year, after being in constant pain, I was finally referred to an OBGYN and was correctly diagnosed with endo and ovarian cysts caused by scarring from endo. This past year has been a roller coaster. After my initial diagnosis, I decided that the best way to manage the daily and constant pain was to stick to a strict exercise plan and vegan diet- cutting out all animal by products and going organic. These mixed with the continuous BC seemed to be doing the trick...for 3 months I had very little pain on a regular basis. (I'm feeling that women with endo accept that pain will always be there, and I also get the feeling that the medical community accepts (willingly) that women with endo will be in pain- I can't decide if this acceptance is a good thing, or a bad thing). About a month and a half ago, my pain came back with a vengeance. After flipping from my GP to an OBGYN, they've booked me for surgery in 2 months, and have prescribed my an array of medication to take daily. There are several things I'm finding hard to deal with. Firstly, I'm 23, in constant pain, and feeling like I have to hide it. It's a daily struggle for me to go to work, pretend that I feel good, and carry on with my daily duties so that I feel endo isn't ruling my life. While my family and partner are supportive, there's only so much I can tell and explain to them without feeling guilty and feeling like I'm Donnie Downer always complaining. Secondly, I feel like endo is an invisible disorder, and with pain being so subjective, I feel that a) it's all my head; b) it's much less severe than I'm making it out to be; and c) I don't have the right to be "off" of my work/home responsibilities. I mean, I've always been told the my period is going to be painful, "all women feel that way", but it doesn't make it right. I just find it so hard to deal with my guilt over my pain and everyone's perception of what women naturally have to deal with. Does anyone else get the feeling that people think "well I have bad PMS, but I deal with it"? Thirdly, I've tried to do everything that I've read and been told to help my endo. I changed my diet, my exercise routine, and I've tried my hardest to change my mental perception of my life with endo- but nothing is working. Worst of all, i have the greatest fear of it recurring after my surgery. I know post-op endo pain strikes the majority of women, but I'm not sure how I'll be able to deal with it. It's taking all of my strength, will, and hope to get through my pre-op time. I'm fighting my hardest to not let this get me depressed and hopeless, but it's hard. I'm in so much pain that I can barely walk most days, I'm always tired, I need to be near a washroom, and I'm hormonally moody- I can't do ANYTHING. I'm 23, I take more medication than my grandmother. I can barely walk (which is embarrassing enough), I have the pressure of being productive, proactive, and progressive in my career/job, and I have the social commitments that I can't seem to break (because people don't understand what they can't see). I just want to feel good. I don't want to have to go to the washroom every 20 minutes, I want to be able to feel comfortable walking, I want to be able to get a good night sleep. GAH! Thank you for letting me vent :) Posted on 04/21/08, 09:04 am |
| 21 Replies | Most Recent | Add Your Reply |
| View More Posts Ignore |
Tikki,
you are not alone. I might as well have written that post!! I feel the same way, i'm having trouble coping with my current diagnosis of endo. Especially, and you nailed it, b/c it IS invisible, and so 1. nobody really understands, its like if they can't see it, then it must not be there, and i also struggle with it that as well.. especially with so many ppl telling me that, i feel like its in my head at times. but then the pain hits and i'm oh no its not. the trouble i have is being so tired all the time. i used to have so much energy, always doing something, and now its just takes so much work to get laundry done!!! i also struggle with how i tell ppl that dont understand, especially, a guy that i mgith date.. how do i break it to them that sex is painful for me? that blood might be involved? and then if it does get serious, how do tell him that theres a chance i might not be able to have kids? ugh. its painful. you are not alone... i wish i could give you more help, some answers, but i can't.. right now i can just tell you, that im here if you need to vent, b/c i definitely understand, and that i will always be happy to listen. 
|
|
|
|
||
| View More Posts Ignore |
You know i get that way too. its human to feel like that. but i feel with me that prayer helps me. it does bc when i get like that i pray and it helps me mentally .
|
|
|
|
||
| View More Posts Ignore |
Thank you both for the replies.
It's so comforting to know that I'm not alone, and that I have a place to come when times get rough. Endo is more than just a physical disease, it's mental too. So, you can't just treat the pain, you need to have that support- which you guys give here :) Thank you again!
|
|
|
|
||
| View More Posts Ignore |
Tikki, I know what you mean. Especially the part about how no one sees it, no one cares. I went to a family picknic this weekend and while the men played paint ball I got into a conversation with my hubby's cousin's new girlfriend. She is very young and not too bright, but a sweet girl. I still walk funny and I can't sit up for long, so it was hard to ignore the fact that I just had surgery. But my gosh, she could not have been any less sensitive about it! She couldn't understand why I was hurting when I didn't have a scar or any visible signs. Oh, and she actually asked me if my husband and would get a divorce if I can't have kids. Then hubby's grandmother joins the conversation and tells me that I need to stop talking about it because if I make it too hard on my husband, she wouldn't blame him for leaving me.
Before my diagnosis these were the women who kept telling me that there was nothing wrong with me and thanks to that attitude my endo went untreated for years. And being 24 years old and having to take three kinds of pain killers, hormone pills, antibiotics from related infections and (soon) injections make me feel anything but normal. But this place makes me think that I might be able to get through it. I know this much, if it wasn't for this forum, I would have lost my mind a long time ago.
|
|
|
|
||
| View More Posts Ignore |
I am completely with everyone who has already posted. This disease is so frustrating due to the fact that there aren't many physical signs. It is really frustrating making my husband understand and my mom was there for my diagnoses, but she thinks I had surgery so it is all better. Frustrating.
|
|
|
|
||
| View More Posts Ignore |
See Tikki, you are not alone!! You have found the perfect site to vent and to get some information and advice...we are all in this together...
|
|
|
|
||
| View More Posts Ignore |
Thank you again! Your replies have made given me comfort in knowing that it isn't in my head, and that the pain is severe, uncomfortable, and hard to live with.
nikki, your message really touched me. I know how you feel. I've been with my partner for 3 years, and I constantly get the "well, you know, HE deserves children" from his mother. Almost like we can help that we might not be able to have kids. that whole aspect of my health impacting his life and his future is a horrible strain. I constantly worry that he'll leave me because I can't have kids, and I get pressure to leave him because I can't. People really have a hard time understanding that the medication and the surgery are to help the pain, it doesn't mean it's going to cure it. Thank you again- you've brightened my day and have really given me a place to express how I feel, and just rant like heck about it! :) thank you
|
|
|
|
||
| View More Posts Ignore |
HI Ladies... I am here and in the same boat as all of you. Endo really SUCKS!! I barely have any energy also.. UGH! Since my diagnosis 3-26-08 (which im sure ive had it for a few years but it was never detected)Iv'e been really down in the dumps about it but am not trying to stay postive as much as possible for the insanity part of it. And it also really hard because my husband and mom were there with me thru surgery and the diagonis but they still really don't get it. I mean, they are VERY supportive, don't get me wrong.. but they don't get the extent of it bcus they don't live in my body.. ya know. Im here for all of ya girls to listen to you vent also. Take care of yourselves!!
|
|
|
|
||
| View More Posts Ignore |
I am with you 100% on ALL of those things. I am STILL having them muddle around and determine if I have crohns, or it is endo of the bowel in my ileum (they can barely understand endo, I find).
I wish you well.
|
|
|
|
||
| View More Posts Ignore |
Tikki, i accidentally answered you in your hugbook.
Romi
|
|
|
|
||
| First | Previous | Page: 1 2 3 | Next | Most Recent | Add Your Reply |
Anyone have endo here? Anyone have symptoms of pain with this, but endo elsewhere?
I know this site is for endo... however, I see alot of women on this site suffer from pee urgencies and uti's and …
Anyone with endo out there get this? I had a hyst but have endo on my ureters, usually I have low back/pelvic, now this …
