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.

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

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.

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

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

It’s okay not to be okay

As I’m writing this I have the window open because I’m hot and the heating pad stretched across my abdomen because I’ve had a flare so bad I’m hunched over and getting the ever so familiar Edward scissor hand pain to my lower body. These flare days have been more frequent lately and it has really taken a toll on my mental health that’s for sure. Let’s face it, when your stomach is bloated and you are tired you don’t feel attractive at all. I feel like a potato and with that whole look, it’s made me feel disgusting. Total mood killer for sure. With that said I’ve tried to push it all aside and have gotten back into working out to try and boost something. I also reached out to a therapist which is so desperately needed lately. The one thing I’m not embarrassed to say is that it’s okay not to be okay and it’s okay to put yourself first when you fall down. I think this all stemmed from finding out that I’m having yet another surgery and the burden that falls on my back. I’ve put on a brave face but when you are faced with another battle yet again it become draining. I’ve faked a smile more times then I can count and hopefully by talking through it, I can work on me. Trust me I am blessed, I have a roof over my head, a good support system, and of course an incredible boyfriend that I ask myself everyday how am I deserving of all this. But there are those dark days that follow me and when you add pain to the mix it can really mess with your head. I have another 4 months until surgery so until then, I’m going to find the person I’ve been missing.

Where it all began

Seeing as it's Endometriosis Awareness Month I will take you back to where it all began for me and why awareness is more than a month, it's 365 days a year for me.

I was 11/12 when I first started my period. All I know is that I was very young and I remember sitting on the toilet freaking out because I was alone and my mom was out walking the dog and I did not want to move because I didn't know what was happening. I went to Catholic school so they didn't get into the real deal about periods so I was a bit freaked out. I now transitioned to become a woman or whatever they say when you get your period back then. My periods were like an out of body experience for me because the pain was indescribable and unbearable. The only thing that helped with the pain was to sit still or rock back and forth on my bed. It wasn't until I was about 15 when my pediatrician put me on birth control pills because it's normal for this pain and it only happens once a month for a week. Well, I bled longer than a week and the pain continued, I went from various types of birth control to midol to naproxen. There was a time when I was 16 when my pediatrician said that I was mental. I didn't even know that until years later when I was getting my medical records and reviewing them I saw her notations.

High School was a constant blur for me, when I did go. I was never on time and I was always late because the pain was so bad in the morning my stomach hurt all the time. That's when the doctor said I had IBS and I was lactose intolerant, which now I know wasn't the case but it was funny because I could eat ice cream like a champ but yet the doctor just knew better I guess. Come time for my senior year I almost did not graduate because I had more absences than actually being in school, and I passed literally by the grace of the good lord.

After high school I found an OBGYN because I thought I was a little too old to be seeing a pediatrician. So I found an office downtown and met with my first doctor who played the birth control game except this time she made me go on a continuous birth control pill which she said you won't get your period. Two months into it I had my period for almost a month. It wasn't until she became frustrated that she insisted I have ablation for suspected endo. Endo what? well she never got into details about endo but she said I would feel a whole lot better. Surgery happened and I felt better for all of two months. The pain came back to the point where I was getting dizzy and wanted to pass out. There were days that I spent in bed because I didn't want to move because if I did move i'd have pain. The doctor told me there wasn't much more she could do but there is this drug called lupron and the only thing is you would have to take vitamins with it because some of her patients had some 'minor' side effects with it. What she didn't say is that some of these side effects were hair falling out, teeth falling out, joint pain, migraines, etc... (I did my research on lupron after her talk). She wrote me a prescription for it and told me to write the date on it when I was ready for it. That was the last time I saw her.

I found yet another doctor, this time in Boston. I thought all would be well because it was in a center for infertility. We played yet again the birth control bingo, then she suggested to take a surgical look inside for endometriosis and place an IUD in surgically. Her plan seemed okay so I went again for surgery. She mentioned that I would not bleed with an IUD and the pain wouldn't be too bad. Well, that was temporary yet again. Atleast this time the doctor gave me a stage for endo and it was stage IV, which in the endo world you could have just as much pain in stage I as you do in Stage IV. So like clockwork, this doctor pushed lupron as well. And like clockwork I walked out frustrated again.

From the age of 12 until my second surgery at 23/24 I went through 4/5 doctors and 1 therapist. I then turned to social media in frustration and that's when I learned the difference between ablation and excision. My first two surgeries were ablation where they burn the tissues, and what I didn't realize at the time is when you burn something it comes back and heals. That is what the uneducated doctors did to me.

It wasn't until my mid twenties that I found a doctor that took the time to listen and actually knew what he was talking about. I had a 7 hour excision surgery with him, and unfortunately the pain did return but it was already mentioned prior that if the pain did return it was due to suspected adenomyosis which is endo inside the uterus. I had my hysterectomy about a year after my excision surgery.

Two years later, I ended up having another excision surgery because my ureter was bent like a swans neck and embedded in the disease, this was done by another excision surgeon which I do not regret but just wished the guy had a little more bedside manner.

Now here I am working on a three day flare up, last night I almost passed out in pain, and I am awaiting my next excision, the choice was not easy and my doctor told me it was my only option at this point because we tried everything. I know deep down that if I didn't have two ablation surgeries and just had excision the first time that I wouldn't be where I am now. This was no fault of my own but the fault of two doctors that were uneducated. I never would've thought that I'd be facing this all over again at 33. My body is failing me yet again but my mind is a lot stronger than it has been in the past. To live in a body that is constantly trying to bring you down is mentally exhausting.

To have people judge you because you are sick, and to have people not take the time out to understand is draining for sure. There is no magic cure or potion for this disease. It can be invading one organ or some other organ, or it could just be sitting somewhere else. The only way to get rid of it is to cut it out and it isn't an easy task. This disease effects 176 million women worldwide. The cost of healthcare for someone with endo is $70 billion a year. There are $2,000,000,000 just for drugs that control pain but there is limited funding to research the disease. I could go on and on about it but this is real talk. My story is just a glimpse of how it is. I didn't even get into heavy details about it.

So this is where it all began to where it is now.