Emotions getting the best of me

I must have had one of the worst possible days from hell yesterday.I don't kiss and tell and since this day wasn't related to my endo I am not going to disclose what happened. Only that I have never been so hurt, humiliated, upset, and just down right pissed about something in my entire life.I cried for hours...my head felt like it was going to explode,and now today my eyes are so red and puffy that even make-up cannot help me.
Now this situation did make me upset, there's no doubt in that...but I'm wondering how much of my bad day was being upset...and how much as an extra added bonus from all of the hormone medications that I am on. I am naturally a crier. I cry when I watch sad movies, or laugh to hard, or am put into very uncomfortable positions that I don't know what else to do other than cry...and yes this can be embarrassing but hey nobody is perfect right.
These medications seem to be making my body go over the deep end a little easier than usual.
And honestly its a little funny...but not when your in a situation where tears aren't going to do you any good but then you body's like 'MUAHHHHHAAHAHAHA cry my little darling...CRYYYYY' you can't really control what is going to happen next. At least yesterday wasn't endo related though...I feel like physical pain is sometimes harder to deal with than emotional. For me I know that the emotional pain will keep me down for a few day. I'll eat a lot of ice cream and binge watch Netflix and then in about 24 hours most of my upset is gone and i'm just left with some anger about the situation.Mainly thinking about the 'woulda, coulda, shoulda's'. But the physical pain I never know when it's going to go away. Like last night at about 3 am I woke up with terrible stomach cramps that made me cry and almost hurl...and they just seemed never ending. I laid awake for 2 hours while the pain over took my body. And I thought it was never going to stop. And hell maybe I just got lucky that I woke up this morning and the pain has dissipated. For some women I know that their pain can go on four hours...even days without letting up. You just never know how long its going to stick around.
So even though I slept well into the middle of the day because I was wallowing in self pity...I've had enough ice cream and Netflix and quite possibly might face the world today....Probably not because I'm in my comfy pants but at least I know that tomorrow I can wake up, know that I cannot change the situation that happened, and I can move on. My physical pain follows me around all of the time...but I have control over the emotional.

Throwing in the towel isn't the answer

It has come to my attention that there are way to many women 'throwing in the towel' and letting this disease run their lives. In my opinion you need to stand up and say 'Screw you endo...you don't run my life...I do. So endo either deal with it, or crawl back to the level of hell that you were created in.'
This disease is destroying me from the inside out...and that's not just a figure of speech. I have extreme cramping to the point that I puke, have so much pain that meds only help a little, I bloat so bad that I look 6 months pregnant, and I get sharp shoots of pain up my body that cause me to pass you. My ovaries are being killed, my tubes are being scarred and this disease is threatening my ability to have children...
But I have decided not to sit in a corner and let this all control my life.I want to fight.
I want to fight to have my life, and not let it be controlled by a disease that has no cure. I know that some days it is hard to get out of bed because you are weak and in pain...but you can't let that take away everything in your life. Don't stop doing the things that you love...even if sometimes those things seem hard to do.
Love going to the gym but you're in too much pain...go for a light walk or stretch/do yoga at home.
Love cooking but can't bare to stand to long...sit down and cook.
Love playing with your kids but sometimes its just too hard...pick an easy game like monopoly.
Do smaller, easier tasks that you can still enjoy because you need to keep trying to live your life to the best of your ability. I know that this is a hard thing to do...trust me I never know when I'm gonna feel like a bag of shit and not want to leave my house. But if I can't leave my house then I need to find things that are enjoyable for me to do while staying at home,
I hope that nobody takes what I've said as a negative thing. We all are dealing with a tough situation and not everybody experiences the same symptoms. We just can't 'roll over and die'(this one is a figure of speech). Its not fair to us who as women. Life is a constant struggle to begin with, without throwing this crazy endo curve ball our way. But we must fight...we must fight to keep our lives and not let this disease break out spirit.
If you need someone to talk to..or simply vent to please feel free to contact me at:
myendomylife@gmail.com
or follow me and contact me on facebook at:
https://www.facebook.com/myendomylife

PS>>>I love this show...I miss Yang

Not only physically...but financially draining

I am lucky enough to live in Canada where a lot of my medical bills are covered by the lovely health coverage that is offered to all Canadian citizens. This means that the procedures, and anything that helped to diagnose me, were paid for by my government. This is great for me but I still end up paying a lot for anything extra. I pay for my visanne, nuvaring, pain killers, the healthy food I need in order to follow the 'endo diet'(clean eating basically), vitamins, clothing to fit my ever changing belly ect. These costs are roughly(including the food) about 300$ a month. And this amount is low compared to some other women who also suffer from endo. I recently asked some women whom belong to a support group that I am in to tell me roughly the costs that they have forked out to this disease so far. One women has paid over 20000$ so far to this disease, 800$ alone from last month(location USA). One women also just received a bill for her IUD which was for 24000$(location USA) which is such a crazy amount of money.One women specifically has spend thousands of dollars on just her supplements and food alone(Location UK) And to top these three ladies off...one women estimated that her costs would be over 200,000$ due to many surgeries, medications, ect if not for health insurance covering a lot of that amount(location USA).
Now seeing these numbers...just imagine if you lived in a place that didn't have their procedures covered by their government. Then think if you lived in this place and didn't have health insurance like many people don't have...and then finding out that you have endometriosis. A disease that takes years of tests to diagnose and that doesn't really have a cure, only temporary fixes that range from hormone medications, pain killers, and surgeries.
Just thinking about these amounts of money makes me cringe a little bit. I am very lucky to live where I live, but I am now seeing the real financial aspects of this disease. I am not uneducated and its not like I didn't, to some extent, know what other countries must pay for their procedures...but I never thought the amounts of money could be so high. I know the financial stress that this disease puts on me and my fiance...and my costs can't even be compared to most other women. I want to let other women know that they seem like superhero's compared to me. I can't even start to imagine the financial stress that this disease puts on them, let alone the other stresses that come with the financial. Am I blessed to live where I live...of course, but a lot of women aren't in my situation. An actual cure needs to be found for this disease...because it is financially killing so many people.

Understanding is a problem

Why is it that the world has a very hard time understanding endometriosis and doesn't really qualify it as a huge disability and a disease that causes chronic pain. I have heard many stories of women who have been fired, almost fired and or are having issues with work because their employers don't believe that this disease is as debilitating as it can be. For some women(such as myself) I can have really good days and nobody would ever think that something could be wrong with me physically. But for a lot of women work isn't possible, and if they do work...they take a lot of time off because some days you really can't make yourself get out of bed because you feel nauseous, u can't stand straight because your belly hurts so much, and the pain is so excruciating that even with a huge combination of meds you don't feel any better. And it doesn't help that there isn't an easy way to tell the extent of someones pain because the level of pain that they could be feeling...doesn't necessarily equal out to the stage of endo that they have. Someone who is a stage 1 endo could feel more pain then somebody say like me, who is a stage 4 and my reproductive system is already compromised. This disease doesn't always make sense which is why I think it is hard for a lot of people to be understanding, sympathetic, or even try to 'give a shit' that you have a disease that causes cronic pain along with many other weird, and hard to handle symptoms. I know for me I have gotten lucky with my jobs and have had amazing employers, along with having a great support system. I am not saying that my support system doesn't sometimes get annoyed with hearing me complain about my disease...but they're always there for me when it really counts.
I know that we all need love, support, and for people to take us serious but that isn't likely to happen for everybody. Its sad to say but there will always be those people in life that wont take you serious, will toss you out of their lives because you no longer party/hang out with them, and will never believe that what you are feeling on the inside...can cause so much pain. So you must be there for yourself. Be as selfish as you have to be because in the end...you are the one person that can help you over come this disease and not let it control your life.I know that everyday is a struggle...you're preachin to the choir on that one...but we all need to find ways to live because letting other people control our lives and constantly put us down for our disease is killing us even more than this disease is. I don't mean try to go back to the way our life was before this disease took over, but find things that you can do and enjoy even if you are having a bad day. For me its this blog...for other women it could be reading, knitting, painting, cooking, or even just hanging out with someone who can stand your complaining. Don't let an employer bully you..Standing up to them can be terrifying, but once they start to understand what you go through on a day to day basis...life will get a whole lot easier for you

I just want some sleep

Last night I had the worst sleep that I have had in a long time. Before I had my second lap(2 months ago) I would be woken up from a dead sleep...only to feel like I was dying.

My stomach would be in knots, I would feel nauseous, have extreme cramping...and be on the verge of tears. This lovely event happened again last night and I got next to no sleep because of it. I like sleep...and i'd like to think that sleep likes me. But when I am getting no sleep...that makes for a very angry, grouchy, and impatient Jessica. And what really sucks is that no medication can help me...because I feel so sick that I can't swallow anything without puking it all back up which totally defeats the point of taking a medication to battle the pain. I hope that these lovely night time visits by the endomonster don't keep happening, because I still have managed through everything to hold down my full time job. I would rather not get fired for being to grouchy, or for such a lack of sleep that I barely function at work. Don't get me wrong, by boss is the greatest women, but one day she(or another potential employer) might not be so understanding to what I am going through. Not only does endo affect me during the day by giving me the gift of endo belly, fatigue(I don't need more) and sharp shooting pain through my body, but now it has taken my night time...and its crossing the damn line.

I hate to let my endo win, but last night it took me down in the ring and knocked me out in the first round. I didn't even have the strength to fight back last night. I just laid there, in the fetal position, singing songs in my head trying to keep my mind distracted so that it wouldn't feel the pain. I even wiggle my toes to try and take the attention off of my 'about to hurl' stomach. Alas, none of these things work very well. I would fall asleep after a while, but only for a few moments and then be woken up again by the agonizing pain that was happening in my nether regions.

Drs. say the damnedest things

So today is St. Patty's day...and I think that it brought me some luck today because I had a follow-up appointment with my lovely dr and it wasn't actually terrible news. Although yes I do still have endo, nothing has changed there, there was no bad news really either...well mainly nothing that I didn't already know. I remember when I came out of my second surgery my dr looked at me and was like "So that(referring to the endo in my lady parts) was not what I expected to find."
I finally got to ask him what he meant and he just laughed because he realized that he kind of scared the crap out of me with that comment and that it had been bugging me since he said it. Basically from the notes about my first surgery, to him looking at my insides for the second...a major crap ton on endo had grown absolutely everywhere...and I mean everywhere. He pointed to a little diagram of my lady parts and just happened to point to everywhere. The severity, the amounts, and the locations shocked him completely and he told me that he wasn't in the least surprised about the pain and many other symptoms that I have been having. A lot had grown back over just a years time...and I think that's what scares my dr(and I as well) because that means that basically every year I will have a mandatory lap as to both keep track of the endo and see how much(if any) has grown back. He is hoping though that with him putting me on both the Nuvaring and Visanne at the same time, that it will hopefully...fingers crossed...slow down the growth of the endo. And although combining these medications might do nothing, at least there is a little bit of hope that I can hold onto.
Now I have promised myself that some topics about endo are private between me and my partner and that I would never write things that I wouldn't be comfortable telling my parents. I think its a good way of monitoring what I say on the internet...you never know who could be reading this. That being said my dr said something to be today that made me laugh so hard...mainly because of what he said...and also because he fully meant and owned his sassy comment like any dr should.
"If you don't use it...you'll loose it"...that's exactly what he said to me.
Most women who have endo understand the complications with umm....with well having sex with their partners and this is what he was referring to. He said many women stop trying to have sex but that it is as "essential as eating or breathing"...and that if you don't at least try to have intimacy with your partner...it will eventually became extremely hard to come back from. My dr just has my best interests on his mind eh... So ladies(and gentleman)...
IF YOU DON'T USE IT...YOU'LL LOOSE IT!!!...I just love my dr and his sass
Also ladies and gents don't forget about the new email I made for this account. So if you have questions, comments, or just need to vent...feel free to contact me anytime.
myendomylife@gmail.com

'Love is all you need'- The Beatles

Along with running this blog, I am a member of a lot of different support groups...yes even I need support and help every once in a while. My ability to use words to make people laugh is a gift that has helped me keep smiling on the darkest of days. But something today broke my heart...so there will be no humor in this post, only love, sympathy, and support.
On one of the groups I am part of, I read about a fellow endo women who's love of her life just left her...because of a disease that she has no control over. When I read this, I couldn't help but feel so much sympathy and want to show this women all the love that she deserves. I read through the comments and found many more women sharing their stories about their lovers, boyfriends, and husbands leaving them because of issues that ultimately come back to endometriosis.
I know that the things that I write don't reach that many women...but I hope to hell that the few it does reach...it at least helps one women who is suffering from a disease that we have no control over.I am very lucky to have an amazing support system. My father and step mother always lend a hand when possible(they live in another province), my sister is always there to listen when I need to vent, and my fiance is with me all of the time and is always helping me realize that even though I cannot beat this disease, that I am loved and can fight. Nobody in my support group suffers from this disease, but they are always willing to listen and try to understand what I am going through.
I am now realizing that there are too many women in the world that don't have the support that I have, which is one f the main reasons I started this blog. I am a very friendly, open, outgoing, and honest person. All of these things allow for me to tell funny but very realistic stories about my suffering.So I want to try and support as many women as I possible can which is why I ahve created a private email address for this blog so that any women who need to talk, share their stories, or simply need someone to vent to, can email me directly.

myendomylife@gmail.com will be a fully private(unless you give me permission to share anything) area where women can email be anytime they need too. I want them to know that there is support and love for them. And even if nobody ever emails me, I will rest easy knowing that I love and support each women who is suffering.

Emotions be runnin' wild

I actually just cried during an episode of 'Full House'...like what the hell.
I have now been on visanne for over a month now, and that has been combined with me being on the nuvaring as all times as well. I think by body is having a hormonal overload...and its quite comical. Its not even like 'Full House' is a sad TV show...its a fricken comedy mainly. If I were to cry at something that was actually sad and extremely emotional then this problem wouldn't concern me as much...but 'Full House'...come on man how pathetic is that.
I told my fiance what happened...he just looked at me and laughed. The random crying and getting emotional has been happening for the past few weeks and it can be over the stupidest things. My fiance tickled me and I got a little annoyed....but then I started to cry from being a little annoyed.Then he started to laugh a me because I was crying....and I in turn started to cry more because I was annoyed but laughing at the same time.
I'm not sure if all of this is actually kinda normal, or if I should tell my dr whats been happening.
Combining these two medications might also explain my extreme moodiness, my hot flashes so bad you would think I am going through menopause, my hair falling out by the brush-full, and my allergies have really stepped it up a notch(normally allergy meds keep my sneezing and itchy eyes under control...but not lately)I just keep wondering if having these side effects are worth the slight chance that my pain might become manageable....but there is also a huge chance that the combination of these two medications will do nothing for my pain and won't slow own the growth of my endo...and simply just leave me with crazy side effects.
Emotions...get your shit together.

Endo...a leading cause

Endometriosis, I am sad to say, is one of the leading causes of infertility in women. Drs say that between 30-50% of women whom suffer from endo, have a hard time conceiving. And if you are diagnosed as a stage 4, that you will have an even harder time conceiving, if you can even conceive at all. All of this is due to the affects that this disease has on our reproductive organs. It can influence fertility in a number of different ways: distorted anatomy of the pelvis, adhesion's, scarred fallopian tubes, inflammation of the pelvic structures, altered immune system functioning, changes in the hormonal environment of the eggs, impaired implantation of a pregnancy, and altered egg quality.
The idea of not being able to have children, is a scary thought for most women. But what I find even scarier is not having a choice whether to have children or not. When I got out of my surgery from my second lap, my dr came to talk to me. he goes:
'Well that wasn't at all what I expected to find today(long pause). I removed as much as I could but wasn't able to get everything. And this is hard to hear but your tubes are now scared and the endo was all over your ovaries, tubes, and uterus.The next time you come in we need to talk about whether or not you want to have children.'
Now I was on a lot of drugs at the time(and loving life I might add) but that scared the crap out of me and I am so nervous to see my dr on the 17th of this month.I am only 22 and am now being asked whether or not I want to have children...and if I do, how soon. Even though I love my fiance, we have talked about this topic so many times..because we feel that neither of us are established in life yet, and that having a child isn't in our best interest. I am terrified though, that if I want children, its going to be now or never,
And who knows, maybe in five years I could end up getting pregnant, or maybe in two years my ovaries could be completely killed and my tubes to scarred that having children isn't even an option anymore. These options are terrifying...and I hate not being able to control this aspect of my life. I have always been a rational and realistic person, but this topic and the idea of possibly never having children, makes me just a little bit 'Mad as the Hatter'.

from size 3 to size 13

In the past 5 years I have fluctuated in my weight and ultimately have now become a size 13...when I used to be a size 3(I will post pictures to show the differences). I know that this isn't just to do with my endo but also the depression, bloating, comfort eating, painful exercise ect that are common side affects for many women. And now I am on some hormone medications that aren't helping me either.
I love myself, don't get me wrong. But when I think about the cloths I used to wear and the way I used to feel about myself, it's hard to be OK with the way I look right now. Every women is beautiful no matter what others tell us, but the way that we think about ourselves makes us think that we aren't beautiful. With the way society portrays the 'Sexy, Skinny, and Attractive' women...its no wonder that so many women have such self-doubt. My fiance always tells me that i'm beautiful...but I can't help but think about the women that he fell in love with 4.5 years ago. Yes me thinking that is crazy...which my fiance tells me all of the time...but it's hard not to think that way sometimes. We, and by we I mean women in general, need a strong support system because it's hard to swim through the giant ocean called 'The digital age' which gives unattainable and false ideas of what we are 'supposed' to look like.
In this first photo...this was the first year I started experiencing any endo pain...yes these are also my prom pictures lol,...so quite a few years ago. I'm the girl in the green dress



And this is me now...

Why We March

I hope that we will gain support and recognition
I wish that this march will help us find a cure
I pray that women will no longer suffer in silence

Although I am not able to attend the march in either the US or Canada, I will be there in spirit. This disease has affected me for so many years and I did suffer in silence, but I will no longer do that. I will stand up and say 'Hell ya my vagina is hostile, angry, and killing me from the inside out...But am I going to let this stop me from living my life and continuing to give support and give a bit of laughter to the world...HELL NO.'
Please if you are able to attend an EndoMarch on March 28th, stand there with pride and be a loud supporter.March for yourself, mothers, daughters, cousins, and for women that don't have a support group. Suffering alone is not the way to go. If I didn't have a loving, caring, and very understanding fiance...I would have given up my fight a long time ago.

 

Visanne...not doin it for me

So I have officially been on visanne for a month now and don't feel any sort of change...other that random crying and major bloating from being on both birth control and visanne at the same time( which apparentlt youre not supposed to do but I seem to be the special case scenario).
To be honest i'm quite dissapointed that there had been no change for me.I acknowledge the fact that I have not been on it for that long but I was also told that I would feel a change not long after starting visanne. I needed to be one of the women that this pill worked for because I dont have very many options at this stage in the game. I have a followup appointment with my dr for my post opt stuff this month...and he is not going to like it when I tell him I haven't felt a change. It makes me so nervous thinking that this hasn't helped me because my fiance and I were really looking for some sort of fix. Yet I continue to have to take pain killers, use heating pads, and even started a new regiment of vitamins in hopes that  everything working together may take away some pain. I could deal with the random crying and cravings for all the 'bad' food if that meant I wasn't in pain...but that doesn't seem to be the case.Ive got to start looking at different options and go into this appointment with a major game plan because getting my lady parts chopped out isnt an option at the moment...not even a little bit. I like my lady parts...not ready to see them go yet