Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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Newbie trying to cope

Stephieb28
Stephieb28

So...I'll start by admitting I have never done anything like this online before. I feel kind of silly and like I'm complaining about my situation when it could be much worse. I need to let it out ...talking to people without endometriosis helps, but it makes me feel less crazy to hear people with endometriosis have felt the same as I have if that makes sense. 


I guess to continue, my story is that I'd been going to my doctor at 17 with the usual pain symptoms and they gave me percocets and sent me on my way. Over the years, it would go away and come back, but then go away again. Being at such a young age, I didn't think anything of it or to push harder then I did with the doctors. These past couple of years it's returned with a vengance, I couldn't ignore it anymore, I was old enough to know this isn't right. I pushed and pushed and was told it was stress, it was normal, it was just painful ovulation, ultrasounds are normal so nothings wrong, etc. You name it, I heard it. I finally pushed enough to get into the gyno who immediately without question gave me my options and diagnosis. The only thing that I'm thrown about is that he hasn't done the larascopy (Sorry if it's spelt wrong) because he wants to leave that on the table as a treatment option. I've already been switched through a billion birth control pills for pain (with no success) and am currently on progesterones. I'm only 27 so he also does not want to have Lupron on the table as an option as of yet (due to lack of guarantee that it'll work and the side effects), I'm guessing the next logical thing he'd try would be the surgery. He didn't really explain other options besides that so I'm feeling blind and clueless.


My close friend with endo suggested I try the diet as a natural option to help along with the progesterone option. To start, the progesterone has not helped either way. The diet, has actually lessened the shooting pain, however, I still get some pain. When I eat regular food again, its like death has fallen upon my uterus. I guess because I'm only 2 weeks into the diet and feeling clueless about my next steps, I'm just overwhelmed. In all honesty, I feel so disappointed. I know the pain that is to come with normal food, but I cheated anyway (I'm only human and can't cut it all out right away, but have been doing my best and this is my first and only cheat), I knew the pain that I would have to endure for cheating on the diet, but I didn't expect the overwhelming sensation of disappointment at still feeling the pain. The lack of normalcy, having to be careful with what I eat. I feel so pety for being so disappointed, other poeple in the world don't even have food. 


It's been 2 weeks since the diagnosis and I feel so lost. I don't know what my next treatment options are, I don't know my level of severity (I'd like to think I can still have kids and stay positive), I don't know where to go for full on diet plans (I'm getting an endo cook book for christmas which I can't wait for, very excited as I'm sure it will help with food choices!), I don't know what to do, how to feel, what to think. Every day is a mental battle to stay positive, to stay on target, to turn every bad thought into one that is good. All I want to do is cry and feel sorry for myself, but all I want to do is fight and find a way out of this (Although there are no cures, at least something that will help me reach my full potential again). I want to be strong, but I'm feeling weak so it's just an internal battle of the century inside right now. I just wish I knew more so I could know what to do. 


For anyone reading this, I'd like to say I'm so sorry for everything that you've had to endure especially regarding endometriosis. I'm happy to see you come this far and can only see that as a beacon of hope for myself. I appreciate you taking time out of your day/night to read this, it means a lot. Thank you.

AllieKitty
AllieKitty
Yes, it makes sense! You may have many blessings in your life but that doesn't mean you don't have pain, struggles, and hardship of your own especially when it comes endometriosis, which is basically when your own body is attacking you. You have every right to feel the way you do and you're not alone. There are many things you can do such diet (which you have already began changing, and yes it sucks that there are so many restrictions), exercise, meditation, relaxation therapies, getting enough sleep, staying hydrated, heating pads, aromatherapy oils, etc. A laparoscopy is the only definitive way to officially diagnose endo and to see if there is any endo to remove surgically. If you feel that is what you need, perhaps you should consult with your doctor again or keep finding one who has experience with endo. Continue researching and educating yourself as much as you can as knowledge is power. You are strong but even the strongest need time to recuperate and rest as this is a daily battle that we must never give up on. You are an endo warrior and you have many endo sisters all around the world fighting (and crying) with you. I am in excruciating pain as we speak and hoping and praying to get pregnant next year, but I am not giving up. Neither will you, you are stronger than you ever knew.
Stephieb28
Stephieb28
Thank you very much for the reply it's always so nice when you hear of someone who can relate, it almost helps ground you and lets you know it's not just in your head...I've felt pregnant for the past few days and my ovaries are jumping all over the place >_<
I'm thinking because of the pain this week that a laparoscopy is what I think I'd like to try next although I know it's not guaranteed I need to know for myself what exactly I'm dealing with here especially in severity ....Thank you so much I most definitely will keep researching and you're right, there are a lot of options and just because one thing doesn't work doesn't mean the next thing won't help ...Thank you so much that last part really touched me I am strong and I can be strong not only for my self but for all of the women out there going through what we are! United, we can get through anything, just one day at a time. I'm very appreciative that you took the time to reply so thank you again and I really hope everything works out for you and that you're able to get pregnant. Stay strong my thoughts are with you and I'll send out some positive vibes your way!!
AllieKitty
AllieKitty
Thank you so much for your thoughts and positive vibes and wishes!! Yes, keep trying different things until you find what works or helps. I hope the laparoscopy is successful and can help answer so many questions and most of all, to give you relief and a pain free life! It can be frustrating when people don't understand and even when they ask what's wrong, they don't get that the pain is constant and it never goes away for good just because you have a couple of good days. I also hate that the fatigue is so strong and when people ask me "what have you been doing, what are you up to these days" I can never answer truthfully because they wouldn't understand so instead I feel like I'm lazy because I can't do as much as I want to and used to, but it's exhausting just to even "defend" yourself to others. Sorry, just a bit of venting here. Anyway, great to hear from you and thanks so much again!! We're hanging in there and we are still grateful for all the wonderful things we have in our life in spite of endo. =)
Stephieb28
Stephieb28
Not a problem I hope you're feeling better than yesterday! Yes, I thankfully managed to get my appointment pushed up to next week so thankfully i'll be able to discuss the Laparoscopy with him in further detail. Oh my gosh yes, very frustrating, especially with the whole diet aspect when they say, "oh one piece of this food won't hurt you," ...i beg to differ...it's tough with dinner parties too .... You've nailed it again! I researched the fatigue yesterday because my the end of the day it's like you hit a wall and you try think back to what you've done and really it's the internal struggle both physically and mentally to get through the day that exhausts you... my feet hips ankles everything will be shot by like 6pm it's like I'm a senior...and people just dismiss it ...I'm like you where I tweak what I say so I don't get "that look" from people...I even tried taking iron pills in case my iron was low but nope...Don't feel lazy ...I was thinking that about myself until the bit of research I managed to do yesterday and it explained as mentioned that its the mental struggle to get through the day and be strong and the physical struggle of constant pain and because mind and body are both battling a war, the one can't revert to the other for "support" because they're both busy if that makes sense. Vent away anytime I know how great it is to have someone who understands to chat with! Yes we are! Stay strong and like you said, we have a lot to be thankful for in spite of everything :) Thank you again for reaching out it meant a lot!