A little update...something I havnt done in awhile!
I havn't updated in awhile so I thought I would....
Considering it's 1.04am I am in pain and on the laptop in bed with my heatpack....I thought I'd have a little vent to my wondering lady friends out there who help me get through the tough times.
Jason recently bought himself a new toy (PS3) and is determined to spend the weekend having some 'him' time and playing it, so he is out in the loungeroom doing that =P I am glad he is doing something for himself...He does so much for me and for us he rarely does much for himself...I can't remember the last time he gave himself a treat so kudo's to him!
I have a really bad bought of pain + nausea, and I hope it settles soon. At 7am I have to get up because my wonderful best friend has dedicated Saturday to me and is taking me to the snow for my first EVER snow experience! I am so utterly excited!!
So whats news?
I had my post op appointment and unfortunately the news isnt great;
- Stage 4 Endometriosis
- Adenomyosis
- Pelvic nerve damage, he had to remove 1.5-2cm of my pelvic wall in my last operation due to the depth of the Endometriosis.
He sent for an ultrasound and I have developed cysts in my ovaries, the largest one currently measuring 5cms. He assures me these are simple cysts and will go away in time.
I also havnt stopped bleeding since the 9th of April a few days after surgery and the mirena was inserted. I really hope it stops soon, I need it to work as there's nothing else for the Adenomyosis.
He told me I will inevitably need a hysterectomy purely for the adenomyosis he knows it doesn't cure the Endometriosis. However I am too young and in Australia unless its for cancer Hysterectomy's are not easy to get unless you're nearing menopause. I'd also like the option of trying for children when we're ready.
I really wish this all had a cure...I'm so sick of feeling sick. I don't care what anybody says being sick is a full time job. Everytime I see Jasons dad and stepmum they always ask how things are and always tell me how sick I look...not in a bad way in a concerning way, they always tell me to call them if I need anything. It's nice to know they care, considering my parents are in another state it's nice to have that parental care close to home too.
I hate looking sick.
I hate pretending to smile like everything is ok too. I mean, I know I can't be a downer all the time but it is so unbelivably hard to smile when there's so much pain inside me physically and emotionally. Most days I just want to lay in bed and cry...but really, what would that change?
I know I'm depressed...but I am working through it all with my psychologist. It's just hard to be at this place at 20 years old...the end of the road...now its a waiting game.
I'm going to try and get some sleep now...I just thought I'd have a quick update.
Thanks everyone for always being there when I need you most =)
Without my family, friends and you guys I dunno what I'd do!
<3
Considering it's 1.04am I am in pain and on the laptop in bed with my heatpack....I thought I'd have a little vent to my wondering lady friends out there who help me get through the tough times.
Jason recently bought himself a new toy (PS3) and is determined to spend the weekend having some 'him' time and playing it, so he is out in the loungeroom doing that =P I am glad he is doing something for himself...He does so much for me and for us he rarely does much for himself...I can't remember the last time he gave himself a treat so kudo's to him!
I have a really bad bought of pain + nausea, and I hope it settles soon. At 7am I have to get up because my wonderful best friend has dedicated Saturday to me and is taking me to the snow for my first EVER snow experience! I am so utterly excited!!
So whats news?
I had my post op appointment and unfortunately the news isnt great;
- Stage 4 Endometriosis
- Adenomyosis
- Pelvic nerve damage, he had to remove 1.5-2cm of my pelvic wall in my last operation due to the depth of the Endometriosis.
He sent for an ultrasound and I have developed cysts in my ovaries, the largest one currently measuring 5cms. He assures me these are simple cysts and will go away in time.
I also havnt stopped bleeding since the 9th of April a few days after surgery and the mirena was inserted. I really hope it stops soon, I need it to work as there's nothing else for the Adenomyosis.
He told me I will inevitably need a hysterectomy purely for the adenomyosis he knows it doesn't cure the Endometriosis. However I am too young and in Australia unless its for cancer Hysterectomy's are not easy to get unless you're nearing menopause. I'd also like the option of trying for children when we're ready.
I really wish this all had a cure...I'm so sick of feeling sick. I don't care what anybody says being sick is a full time job. Everytime I see Jasons dad and stepmum they always ask how things are and always tell me how sick I look...not in a bad way in a concerning way, they always tell me to call them if I need anything. It's nice to know they care, considering my parents are in another state it's nice to have that parental care close to home too.
I hate looking sick.
I hate pretending to smile like everything is ok too. I mean, I know I can't be a downer all the time but it is so unbelivably hard to smile when there's so much pain inside me physically and emotionally. Most days I just want to lay in bed and cry...but really, what would that change?
I know I'm depressed...but I am working through it all with my psychologist. It's just hard to be at this place at 20 years old...the end of the road...now its a waiting game.
I'm going to try and get some sleep now...I just thought I'd have a quick update.
Thanks everyone for always being there when I need you most =)
Without my family, friends and you guys I dunno what I'd do!
<3
Replies
Taters- so sorry to hear the crap you are going through. The two of us are pretty much in the same boat & I can totally relate. It is terribly difficult to \"put that smile on,\" especially when you want to cry & scream @ the same time. I hope our luck changes & we are finally allowed some relief!
xxxx
~Caryn
hang in there taters! i have been dealing with adeno for 7 years now and despite the mirena there are other things that can help. both times i did lupron it helped and there is a place that does reconstruction of the uterus out here in the US...and they can do this and even save your fertility. i will send you the link to it that is saved on my other pc. it gave me hope at least that there are doctors out there that are working on saving our uteruses at least. adeno is like the uterine death sentence so it seems, but cheer up because truly it is not. lupron helped with mine for a short time and i\'m sure that there are other things such as continuous BC that can help a little too. of course pregnancy when you\'re ready is also supposed to help. im currently just recovering from lap #4 and am just using a natural progesterone cream that i got at a compound pharmacy to try and keep the endo and adeno at bay. really though, i think that the endo is what causes the worst and majority of my pain. the adeno is only really hell during my period and then i feel like i\'m in labor for 3 days. i could honestly deal and live with that if i didn\'t have endo too on op of it. my concern for you out there is that they don\'t even manage your pain properly...and for that along with many other reasons my heart goes out to you.
on the bright side though at least you have jase by your side always who loves you so much and is always there for you. just knowing that you are happy about him buying something for himself that makes him happy shows how deeply you care for him. =) i don\'t know where i\'d be without the support from my husband. he has to do so much for me, yet never complains which makes me feel really lucky. this last surgery was 3 hours away so we had to get a hotel for a couple nights and the first night Rob just sat there watching me sleep for hours. i was touched that with as long as we\'ve been dealing with this disease that he still cares enough to watch me sleep. he told me that he could tell even in my sleep when i was in pain. i guess i make fists with both hands and then after i\'m given more meds...after about an hour he said that they unfold and then he knows that my pain is better and it makes him feel better to see my poor body that\'s continuously fighting... finally relax. at least we are blessed with these caring men in our lives. =) there is a ton of new research out there about endo and clinical trials galore going on right now, so don\'t give up sweetie. hang in there! you, my endo sister, are a fighter! luv and hugs tate~ jenny
Jenny - Thanks for the support and well wishes! I hope you recover quickly and this time it does something to help! I have heard of that surgery from another girl...but like most things here in Aus it\'ll take some time to get here...I have also heard it\'s in early stages, am I wrong? The doctor I am seeing now, while completely up himself is extremely knowlegable which is good, he isnt too keen on cutting out the uterus bits as it\'s not good for the uterus or something...but really I think it\'s because this new surgery is just that trialing and new! Maybe it\'ll get here sooner than other things....here in Aus we can\'t try femera as our govt runs the drugs here and for me to try it i\'d have to pay full price which is $1000\'s unless I have 1 of 3 types of breast cancer. I can\'t go to the femera people like you ladies do and I can\'t import it to australia. Also in RE: to lupron, they wont let me try it we have an australian version and it\'s a no no for me due to how badly depo provera shot deteriorated my bones already...it\'s too risky for me.
Hopefully the surgery you speak of gets here soon! Since i\'ve been dealing with this since 9 years old I don\'t think I can deal with it untill menopause...stupid stupid crappy thing this shit is. But thankyou so much for reaching out! *big hugs* =) xoxoxo
- Caryn, I\'m glad I\'m not alone but I wouldn\'t wish this on anyone. I hope things improve somehow and someway for you soon! Thanks for always listening =)
xoxoxo
HI there taters,
Just wanted to let you know I haven\'t forgot about you, and you have my full support. I\'m glad you are able to vent some of this toxicity out of you! I need journal myself more often than I do! Of course, I fully understand where you\'re coming from. I\'m still not out fo the woods myself, and perhaps, I will always have some pain, even with having the hysto. But, I\'m here for you, and I too hope, that a cure will come about in our lifetime!! And that you\'ll stop bleeding, like yesterday. It\'s just too much! I\'m with you in spirit, and praying for you. You\'re a strong warrior women, and together, we will get you through this! So never ever stop believing and please don\'t give up! Love and hugs Tate, ~Kelly~