I never got to update on how post op went. Apparently there was miscommunication between my Doctor relaying information to my Mom after surgery. When I sat down at post op I sarcastically said well how come you didn't unstick me? He basically looked confused. So what was found was my right ovary was stuck to my sigmoid colon. He was able to unstick it thankfully and there was a spot he cut out in that area too. He then didn't want that issue happening with the left ovary so he tried to suture it out of the way and when he did I went into Bradycardia, he then released the ovary back down and tried to do it again and the same happened so he was unable to move it out of the way.
So let me kind of break it down because many just think that I am now healed because everything isn't stuck together. I am not healed. There is NO cure for Endometriosis. Because it took me 10 years to be diagnosed, plus two ablation surgeries which messed me up in the long run, my body will never function like a normal body. I used to be able to eat whatever the hell I wanted, now I can't. I have to write down what I eat everyday and figure out what triggers me and what doesn't. I went from being skinny to blowing up like a tick. Then there is the awesome brain fog and constant fatigue. So unfortunately this isn't a cure all but I am lucky and fortunate to have found the right surgeon.
So now that all of that is put to rest because I am tired of repeating myself for the last 15 years, I have to say I am grateful for the very small amount of people I have standing by me. I literally don't know what I'd do without my parents. And, well funny thing happened when I was recovering. I won't get into the super details but I met someone. I will say that I have been praying for someone like him. He was there for me during my entire recovery and I am grateful for that. He also took the time out to research Endo and no one has ever done that. So I guess I will keep him around. But I will say that having him in my life made my recovery easier. So there's that added bonus to my life.
Saturday, September 21, 2019
Tuesday, August 27, 2019
Surgery & Such
So I am a two weeks post op from my 6th surgery. I'd like to say it was successful but unfortunately it wasn't. While he was peeking around it was found that my left ovary was and is stuck to my bowel. Probably why I am all screwed up GI wise. When he tried to lift up the ovary, my blood pressure and heart rate would drop, so he put it down and tried again and the same happened. So for right now that is still stuck. He did do excision in my sigmoid colon, and I am sure I will find out the rest friday at post-op. I feel defeated and broken to say the least. I get the reason why he couldn't cut out the ovary but why not? It's not like I can have children and this is causing so many issues. So who knows cause I don't. This disease is draining and I am mentally drained. Physically too, the healing process is a lot rougher then what I remember at prior surgeries. My pain is pretty severe and sleeping just isn't happening. Also being alone and cooped up in the house pretty sucks.
Mentally I feel defeated because I thought that this would be it and I would have my pain managed but yet here I am because I thought I could keep pushing my surgery because here I was putting everything but myself first. I literally am so so tired of this disease and so frustrated that this will never be the end. I am not sure how many more surgeries I can take. This is the real face of endometriosis, the frustration and the fears and the unknown. When you are faced with fighting again you grow tired. I guess there is not much I can do but adjust my sails and keep going as hard as it is. I know this will never be my last surgery and I need to just enjoy life while I can no matter how much pain I am in. Sometimes you have to reach inside yourself when you are defeated and broken and find the will to keep going. Guess I will find out this week when post op happens.
Mentally I feel defeated because I thought that this would be it and I would have my pain managed but yet here I am because I thought I could keep pushing my surgery because here I was putting everything but myself first. I literally am so so tired of this disease and so frustrated that this will never be the end. I am not sure how many more surgeries I can take. This is the real face of endometriosis, the frustration and the fears and the unknown. When you are faced with fighting again you grow tired. I guess there is not much I can do but adjust my sails and keep going as hard as it is. I know this will never be my last surgery and I need to just enjoy life while I can no matter how much pain I am in. Sometimes you have to reach inside yourself when you are defeated and broken and find the will to keep going. Guess I will find out this week when post op happens.
Saturday, August 10, 2019
Pre Op
I’m mentally preparing myself for 13 hours today and 16 hours tomorrow, all while not being on medication because surgery is on Wednesday so I’m just a basket full of endometriosis right now.
My pre op lasted 30 minutes And I asked the doctor am I crazy? Because I’ve had two ablation surgeries back in my 20s and I’m wondering if that made me screwed up in the long run. What he basically said was by them burning the Endo it made it easier for scar tissue to build up, so basically the insides of my body are being cemented together. So now he has to go in and work through all that scar tissue then cut out the endo and unstick my organs. When he said that, my entire soul was crushed. I can’t go back and think of the what if’s because there was nobody to blame but those doctors that were poorly trained in the proper diagnosis of endometriosis. I am super scared of what’s going to happen because all I’m imagining is somebody taking a drill to my insides because of it being cemented together. I haven’t slept and I’m just so ready for the healing to begin. I can’t wait to just focus on me for a bit. I’ve been too busy worrying about relationships and everyone else’s problems that it’s time to focus on me.
My pre op lasted 30 minutes And I asked the doctor am I crazy? Because I’ve had two ablation surgeries back in my 20s and I’m wondering if that made me screwed up in the long run. What he basically said was by them burning the Endo it made it easier for scar tissue to build up, so basically the insides of my body are being cemented together. So now he has to go in and work through all that scar tissue then cut out the endo and unstick my organs. When he said that, my entire soul was crushed. I can’t go back and think of the what if’s because there was nobody to blame but those doctors that were poorly trained in the proper diagnosis of endometriosis. I am super scared of what’s going to happen because all I’m imagining is somebody taking a drill to my insides because of it being cemented together. I haven’t slept and I’m just so ready for the healing to begin. I can’t wait to just focus on me for a bit. I’ve been too busy worrying about relationships and everyone else’s problems that it’s time to focus on me.
Wednesday, July 17, 2019
Cue the anxiety
I am totally supposed to be sleeping because I have a double, but I just got the confirmation call from Kip's office about surgery and now the anxiety is kicking in. Evey endo chick can agree that going from surgery to surgery you still get that worry about will they find something or maybe this is the way my body is supposed to be.
We have been told by dismissive doctors that it's all in our heads and this pain is normal that you become destined to think this way. It is sad to be honest. I know now that those doctors were idiots and shouldn't be practicing medicine, but I know that I have a doctor I do trust. I am about 3 ish weeks away still a long time but, it's crazy to see how my pain and symptoms have gotten worse. I went from having good days where I can function no issue, eat whatever, and spin my little legs off to now being nauseous and shoving food down my throat. I am trying the whole shake thing because this girl needs to eat. We are still short at work so when I do work doubles my body goes into flare mode. I am patiently awaiting the flare to happen and it's hard to explain to male coworkers that I can't 'crush' overtime, because I can barely make it through 8 hours with out getting sick.
That's the one thing though that I handle pretty well, it's pushing myself. I work hard and I don't seek pity from anyone..
that is all
-A
We have been told by dismissive doctors that it's all in our heads and this pain is normal that you become destined to think this way. It is sad to be honest. I know now that those doctors were idiots and shouldn't be practicing medicine, but I know that I have a doctor I do trust. I am about 3 ish weeks away still a long time but, it's crazy to see how my pain and symptoms have gotten worse. I went from having good days where I can function no issue, eat whatever, and spin my little legs off to now being nauseous and shoving food down my throat. I am trying the whole shake thing because this girl needs to eat. We are still short at work so when I do work doubles my body goes into flare mode. I am patiently awaiting the flare to happen and it's hard to explain to male coworkers that I can't 'crush' overtime, because I can barely make it through 8 hours with out getting sick.
That's the one thing though that I handle pretty well, it's pushing myself. I work hard and I don't seek pity from anyone..
that is all
-A
Wednesday, July 10, 2019
When you need to set the record straight
It is hard to try to explain endometriosis to people because I would rather say oh I have a migraine or I have pneumonia, because those things are so common it's easier to understand. Also, if you want to try and understand then ask me. Don't base judgement or assumptions on someone with endometriosis because you think they will just get over it or take a pill. I also don't want pity or sympathy. Trying to tell people that I am having surgery and they say I am sorry, that isn't going to make it better. Us endo chicks get tired of apologies because that's not what we are looking for. We aren't looking for attention just understanding. I tell people think of endo like having the flu every single day. Yes we have our good days and our bad days. There is no magic pill or potion, and there is no cure. Another thing I have gotten is, well you had a hysterectomy so I don't understand why you are in pain because I had one and I don't have pain and I am healed, or why do you have to have another surgery if you had a hysterectomy.
Let me draw this out for you a bit. The reason for my hysterectomy is because I had suspected Adenomyosis which is endometriosis inside or surrounding the uterus. When I had my hysterectomy I had to have my cervix out as well due to cancerous cells within the cervix, so double whammy. Pathology report came back with focal Adenomyosis, which meant they did not have to dissect my uterus, it was right there when they were testing it. That was the reason I had to have a hysterectomy because periods were making my pain worse and my uterus was the issue. Just because I no longer have those two vital organs, doesn't mean I am healed. Again there is no cure.
The reason I have to have yet another surgery is because my first two surgeries were ablation, what that means was the doctor thought they knew what they were doing and they burned the endo or just probably burned what they thought was endo, so they screwed me up. If endometriosis was actually a common thing back in my early 20's and I the doctors knew about excision (cutting out the endo) then I wouldn't be where I am today.
The biggest issue right now is eating and getting sick. You would actually think that I would have lost 100 lbs from all the vomiting and everything else I face on a daily basis. It doesn't matter what I eat, something triggers me and I get sick. I basically live on zofran and Imodium right now, that's why I get irritated when someone says I have a stomach ache then feels better the next day. It's to the point now where I get freaked out leaving the house or actually going and doing something fun because I know that I can only be out for a little while before I get sick. Stress makes it worse so doing the job of two people at work isn't helping and the days I so desperately want to call out sick, I can't. I have to just slap on a smile and go about my business and pray my relief doesn't show up late, which always happens.
I know this sounds like a giant me complaining rant, but it gets very tiring listening to what people say behind my back and not having someone actually ask. I did not pick having an incurable disease out of a hat. I was born this way and I deal with it pretty well. That is why I am constantly posting articles on social media because my one article or one blog post, reaches someone that may be wondering why they are having such pain or why doctors aren't listening to them. I would not want someone to go through years of misdiagnosing and incorrect surgeries, because painful periods and pain in general is not normal. I was told from when I was 13 that it was just a bad period. Flash forward to 34. Where I don't get a period and I am still in pain. That is not normal. I am fortunate to have such a good team of doctors as well as a few select friends that do their best to understand.
I am literally a month away from my 6th surgery. I've always been pretty zen the last 5 but this one I am scared to death. When endo reaches yet another vital part of your body (intestines and colon) you don't know what the doctor will find and you don't know if you are going to have a bag for the rest of your life. So to say that I am zen is a lie. I have such anxiety and worry that it is messing with my head for sure....
So I had to set the record straight because I don't need negative vibes in my life.
Let me draw this out for you a bit. The reason for my hysterectomy is because I had suspected Adenomyosis which is endometriosis inside or surrounding the uterus. When I had my hysterectomy I had to have my cervix out as well due to cancerous cells within the cervix, so double whammy. Pathology report came back with focal Adenomyosis, which meant they did not have to dissect my uterus, it was right there when they were testing it. That was the reason I had to have a hysterectomy because periods were making my pain worse and my uterus was the issue. Just because I no longer have those two vital organs, doesn't mean I am healed. Again there is no cure.
The reason I have to have yet another surgery is because my first two surgeries were ablation, what that means was the doctor thought they knew what they were doing and they burned the endo or just probably burned what they thought was endo, so they screwed me up. If endometriosis was actually a common thing back in my early 20's and I the doctors knew about excision (cutting out the endo) then I wouldn't be where I am today.
The biggest issue right now is eating and getting sick. You would actually think that I would have lost 100 lbs from all the vomiting and everything else I face on a daily basis. It doesn't matter what I eat, something triggers me and I get sick. I basically live on zofran and Imodium right now, that's why I get irritated when someone says I have a stomach ache then feels better the next day. It's to the point now where I get freaked out leaving the house or actually going and doing something fun because I know that I can only be out for a little while before I get sick. Stress makes it worse so doing the job of two people at work isn't helping and the days I so desperately want to call out sick, I can't. I have to just slap on a smile and go about my business and pray my relief doesn't show up late, which always happens.
I know this sounds like a giant me complaining rant, but it gets very tiring listening to what people say behind my back and not having someone actually ask. I did not pick having an incurable disease out of a hat. I was born this way and I deal with it pretty well. That is why I am constantly posting articles on social media because my one article or one blog post, reaches someone that may be wondering why they are having such pain or why doctors aren't listening to them. I would not want someone to go through years of misdiagnosing and incorrect surgeries, because painful periods and pain in general is not normal. I was told from when I was 13 that it was just a bad period. Flash forward to 34. Where I don't get a period and I am still in pain. That is not normal. I am fortunate to have such a good team of doctors as well as a few select friends that do their best to understand.
I am literally a month away from my 6th surgery. I've always been pretty zen the last 5 but this one I am scared to death. When endo reaches yet another vital part of your body (intestines and colon) you don't know what the doctor will find and you don't know if you are going to have a bag for the rest of your life. So to say that I am zen is a lie. I have such anxiety and worry that it is messing with my head for sure....
So I had to set the record straight because I don't need negative vibes in my life.
Tuesday, June 25, 2019
Just Breathe
The doctor's office called yesterday to go over my pre-op stuff and I didn't even realize that we are almost in July. Literally I am a little over a month away from yet another endo surgery. I was never this anxious prior to any of them until now. I am like a full blown zombie because I haven't really been sleeping and the stress of trying to get everything done like day to day adulting plus practically living at work and grad school is making my head spin. It is really hard to stop and take a breath. Among all of that I cancelled my cruise for next year which totally blows but financially I have to put it on hold because I need to live on that money while being out of work. Again, reason #3843942 why I don't sleep. I totally get that there are people that are going through far worse and this is all out of my control and I need to be in the Jesus take the wheel mind-frame but man this shit sucks. I know in the end everything will work out but I need a damn break or a vacation because surgery is so not going to be a vacation.
I am however looking forward to my birthday even though I will most likely be ordered into work. I am already craving my cake from Milk Bar because I am obsessed with Christina Tosi and I've had her crack pie and cookies and if they are any glimpse of how good the cake will be I am going to be in heaven. I am hoping I am able to enjoy the day and just eat cake and eat whatever the hell I want.
I have been living on chicken and quinoa and ground turkey lately (thanks endo).
I am just so very tired of being sick, granted I don't really let it stop me from enjoying myself. As much as I pay for it after I spent way too many years letting the pain take over my life and relationships. Granted it didn't help I dated douche canoes(morons) that only thought of themselves and never tried to understand what I was going through. I think that is why my circle of friends is so small and that it is hard for me to let anyone in because people in my past have broken my trust and have walked all over me. I deserve so much in my life that now I never settle. If that is one thing I can take out of all of this, it is to never settle for less than what you deserve.
Namaste
~A
I am however looking forward to my birthday even though I will most likely be ordered into work. I am already craving my cake from Milk Bar because I am obsessed with Christina Tosi and I've had her crack pie and cookies and if they are any glimpse of how good the cake will be I am going to be in heaven. I am hoping I am able to enjoy the day and just eat cake and eat whatever the hell I want.
I have been living on chicken and quinoa and ground turkey lately (thanks endo).
I am just so very tired of being sick, granted I don't really let it stop me from enjoying myself. As much as I pay for it after I spent way too many years letting the pain take over my life and relationships. Granted it didn't help I dated douche canoes(morons) that only thought of themselves and never tried to understand what I was going through. I think that is why my circle of friends is so small and that it is hard for me to let anyone in because people in my past have broken my trust and have walked all over me. I deserve so much in my life that now I never settle. If that is one thing I can take out of all of this, it is to never settle for less than what you deserve.
Namaste
~A
Wednesday, May 15, 2019
Always be you
After attempting to get my key back from my ex the last few weeks, I finally was at my wit's end and drove there to pick it up after work. When I grabbed my stuff, I said that we wouldn't of been doing all of this if he just made an effort. Well he didn't like that and said that yeah it was all about "me" meaning him. Let's just say that I tried. Every single day I tried. Whether it was cooking for him, or letting him come over to do laundry, and even fixing his resume I did what I could to show him how I felt. The effort was not reciprocated. He would go days without a single text or call, endless excuses, and so many other things and so much anger. I tried to see the good in all of it and I tried to make it work, but I knew that this couldn't continue, so if I have to be the bad person in all of this so be it. I know my worth. I know that one day someone will walk into my life and want to try and not only that, they will love me for who I am. It isn't about the material things, it's about wanting to be with someone no matter what. If there is one thing I learned in all of this it's to never settle for less and know your worth....
Onward
Onward
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