Shall we have an update?

Well, where to even begin? 
If surgery has taught me a few things it is the fact that you find out who your friends are. You know, the ones that say if you need anything then they never call or text. I also have learned that I am a lot stronger mentally than I think even though I've met my breaking point lately medical wise. It's tough when you find out that the hill you thought you've climbed is still getting higher and when you thought the nightmare of everything was over that it isn't. There are two ways of dealing with this, fall down and give up or just slap on that face and keep moving. I do say I have a pretty good poker face, I also do a good job of keeping things to myself. I had the fault of letting too many people I thought were my friends known my business and I am too old for that drama now. I have to start putting myself first. Easier said than done. My health is whats most important right now, and that isn't changing anything soon but I will just leave it at that. Basically to the point of if you are that curious then just fucking ask. Don't sit around and talk crap, because honestly I don't do that to you. #justsaying! 

Sorry, a bit disgruntled lately with everything going on. My face is breaking out like a teenager and my doctor warned the new medicine may do that to me, I wasn't really prepared for that. Good thing I have some nasty makeup application skills.
So yeah that's my wicked amazing update full of bitchiness and grumpiness. 

Keep calm and fight on because that's what hopefully survivors do.. Right now I got a mega diseases ass to kick.

3 months later..

Can't believe it's been 3 months since surgery. I feel like it was yesterday, yes really. Healing has been slow going. Physical therapy has worked tremendously, and I will be continuing that for another two months. There is no manual or guide when it comes to having a hysterectomy that's for sure. I still get the looks and questions as to why i'm not fully healed. I laugh on the outside but it stings a bit on the inside. I don't think people realize how much your body has to heal especially with slinging up my bladder added onto all of the other crap. Crazyness. I wouldn't of changed anything though, even taking away the ability to have my own children. Honestly, I don't know what I want anymore. I am still so overwhelmed with other things and just exhausted that kids are the last on my mind. 

Week 3- surgery says.. I mean doctor says

Looks like my surgeon was right! My uterus had focal adenomyosis which for the non endo people its endometriosis inside my uterus. it's actually hard to find during pathology but mine was like hey how are you im right here waving. So basically my chances of having babies would've been nothing but heartbreaking with miscarriages and harmful to myself. It was a blessing in disguise. I also couldn't bear to have a daughter with this. I'm starting to
mentally switch my mindset in all of this. You tend to do that after 5 surgeries. 😬 Every time I would walk into the room before surgery i never really got nervous it was odd, I wasn't scared, I just did what I had to do. I guess that makes me strong even though I don't feel it.

The one thing that really plays in my mind was the fact that I've been on this journey alone. Meaning no significant other, I've had my mom and family there yes, but I've taken care of myself. In all honesty what guy would want to date a sick girl? The last date I went on the guy basically called me fat and said we weren't compatible. Maybe that's why I've thrown in the towel. It's sad because I think I'm a funny person, I'm actually pretty nice minus the hormonal shit I'm going through. I was so worried the other day that no one would want someone that couldn't have her own children. But a wise woman said if I meet that guy that is selfish like that then he isn't worth it. Which completely makes sense. I have a lot of good qualities. Yes I'm not super skinny as I used to be I'm fat but whatever it is what it is, I'm nervous without makeup on, I like to spend time at home with my fur babies, but what really truly matters is I am me. If that takes 10 years to find someone to be devoted to me then so be it. I won't settle for less than I deserve..


And onto the less emotional stuff..




I think my energy is slowly coming back, as I'm lying here at 9 pm 😂 Back pain is what's my new aggravation. Go figure it's not the hot flashes, weight gain, hormones, or my missing organs. I had lower back pain from the adenomyosis prior to surgery but this is a whole new level. It's like it's stiff and achy all the time. The doctor said its from something that is inflamed from surgery and will heal. He used fancy anatomy terms but my brain is fried. The funny thing is I haven't really rested much, I'm up early organizing stuff and throwing stuff away it's actually totally not me it's scary. I'm less of a hoarder now. Maybe I will work on my sleeping and resting this week. I only have another two weeks left before I go back to work. 👎🏻👎🏻👎🏻👎🏻👎🏻

Just keep swimming

Welcome to week two of recovery.

I feel a little stronger than last week. I've decreased my pain meds so I can actually function. I know the doctor said rest for the first two weeks but clearly Dr. M doesn't know me THAT well. I have organized my closet, thrown a ton of shit away, kept my house clean, annoyed the cats, and thrown myself on the treadmill. I am still in pain and the whole night sweats and hot flashes are pretty entertaining. I have refrained from mentioning the word baby or child and blocked that out of my mind because even typing the words will make me cry uncontrollably. 

The thing that drives me nuts is when people say I'm sorry, you are too young to have a hysterectomy. Yes, I know. But please, don't be sorry. Just be there for me that's all. I am stubborn and I try to be tough and try to do everything and I need to take myself down a few pegs. I still am wondering why, that will be the ongoing question. Why did God take something from me and why couldn't he have done this say after I meet the man of my dreams? I am not a huge God person but one of my friends actually keeps sending me bible quotes and they are on point. Thank you for that, you know who you are and are one heck of a friend. It's funny when you become sick how many friends show up and how many run. That's been the case for the past 10 years, hey thanks Endo!

All this typing is making me sleepy. Another fun side effect but I have missed my power naps. So welcome to week two, this should be a bore.

The day that changed my life.

Surgery day has come and gone but I will rewind to thursday, The doctor was actually ahead of schedule so I rushed to the hospital where they whisked me away to pre-op. I was so amped up but what was funny was my blood pressure was completely normal. The anesthesiologist gave me two options, a spinal or being knocked out. Let's just say I did not want to be numb and see all these people hanging out in my vagina. Dr M came in and we had a little discussion, he wanted to know if I wanted to keep my cervix or have it removed with my uterus. I didn't know the pros and cons so he actually took the time and drew out diagrams, went over pros and cons, etc. He said my risk for cervical cancer was high and that if the cervix didn't get removed I could also have endometriosis around the cervix, when he said those things it wasn't a choice it had to be done. So I had a total vaginal hysterectomy, which basically means the only thing I have is my tubes and ovaries. I was also worried about prolapse but he suspended everything and reattached ligaments so there is a less than 3 percent chance of everything falling out at a later time. Surgery lasted longer than expected. My dad said he heard respiratory being paged to my OR stat during everything but my doctor didn't say much but i'm sitting here breathing so i'm sure it wasn't major. 

When I woke up my pain was shit, it was the worst out of all my surgeries. They pumped me with a ton of dilaudid and I patiently waited to be brought up to my room. I had a catheter in and the first thing on my mind was getting that thing out, so once the nurse asked if i wanted to walk around and then take it out I did what I could to get my ass out of that bed and walk. I walked from one end to the floor to the other just to get that thing out. I tried to not be a bother with the nurses and I pretty much took care of myself the entire night. They were sweet though. Dr M came in that next morning and told me I was a fighter and then started saying he knows this will be so hard for me and I will be grieving. At that point I thought grieving would be the last on my mind.

Fast forward to this morning. Trying to make eggs and I knew there was butter in the fridge, but somehow it must have gotten thrown out, I stood there and bawled my eyes out because I didn't have butter. Then after that I just started feeling so depressed because now it's like all I have left is my ovaries, this stupid fucking disease took the majority of my damn organs. I am angry, heartbroken, devastated and just drained. I'm broken because I am sad for the baby I will never have in my belly. This was the biggest decision to make at 31. I had to make this alone, no one made it for me. I have a good support system but when the lights are out and i'm home alone this is what I think about. The loss, the fact that maybe if I would've just suffered and stuck with the pain I  could've had a child. I know in my brain that wasn't the choice but my heart isn't ready to heal. I've always wanted a baby, I love children so much, I mean I love poppy so much she's such a beautiful miracle that my sister and her husband made. They are blessed because I know she tried for so long and thats one thing I am happy for that my sister could have such an amazing baby, and one thing is for sure, she is one hell of a mom. I know I will always have poppy, I just wish I could feel a baby growing inside me. I won't ever get that feeling. I don't even know if I will have the strength or money to adopt a child. I know this is God's plan but I don't know why. Why he is throwing me one hell of a bone here. 

Besides all of this loss and grieving I am feeling alone. I know a few have reached out and mom has haunted me with cake and chinese food, I just still feel alone, bored, etc. But in a way i'm glad I have this month to myself, it will take so much longer to heal, internally and externally but I need this time away from work and just need a pause in life. 

The week away worrier

Today marks one more week till surgery. I can't even begin to tell you how much anxiety I have, it's unreal. Have not had anxiety like this in years. I am worried and scared which is odd because all my surgeries I had that game face and went in at full force. Right now I am like what if they take out my uterus and there isn't endo? Even though I already know the answer, but still, giving up a huge part of me is a big deal. I have people saying I understand, which is nice but when you've never had a hysterectomy at 31 then you don't understand. It's a huge decision. Who even knows how bad everything is inside. I also worry that the pain may not go away and then I will regret having the surgery. It's hard putting my thoughts into words because to be honest I don't have many friends to talk to about this. Everything happens for a reason, I truly know that but I hope that this is the right reason. It's going to take me a while to heal both mentally and physically. I can't even watch the Johnson and Johnson commercial about babies without wanting to bawl my eyes out. I know inside this is whats right and my doctor is the most knowledgeable and noble man i've met. So let the countdown begin. It's in God's hands now. Take the wheel from here please, this anxiety is killing me.


 

When did it all begin and where I am now

Now that I have a much better understanding on what endometriosis is, I know that I've had it since before I was a teenager. I started my period young, about 12. I didn't even grasp what was going on. My periods then were quite heavy, so much that i relied on pads. I didn't even touch tampons til my senior year. I had all the signs and symptoms but I don't think my pediatrician understood what endo was at the time so she said it was a bad period and take midol. I would rock back and forth, pace, and try not to throw up. My senior year I barely even attended school because it was too much pain.

I held on for a few years then by 21 I saw my first real obgyn that seemed like she knew what was going on. We tried a few birth control pills and that didn't help. She suggested surgery for suspected endometriosis. I went for my first surgery and of course was nervous. It ended up being ablation. She found endometriosis and I thought that's it i'm fixed. 6 months later the pain returned and was given the option-more like pushed- into Lupron. I read too many horror stories and at 22 I was no way forcing myself to go through a medically enduced menopause. So I found a doctor at Brigham and Woman's hospital, again went through the same thing and another surgery. This time during post op she gave me an actual stage of endometriosis. Again I thought she knew what she was doing. Ablation was used again. That's when I really started doing my research. 

The pain at this point was worse, and at the time of my last surgery I was in a long term relationship and sex? well yeah lets just say it was the most painful thing ever! So was the relationship ! (lol) 

At this point I was desperate for answers and sick of surgeries that left me helpless. That's when through a few message boards I found an excision specialist. I was used to driving around for answers and I showed up to my appointment, not knowing what will happen. As soon as I sat down he asked me what my definition was of endometriosis. I was completely wrong! Then we went into why ablation never worked and he actually brought out a medical encyclopedia to show me  what was going on. He then scheduled me for excision surgery. 

I walked into the hospital and at this point I was so ready for this to be done. When I woke up in recovery I was in more pain than usual (expected). After a sleepless night I was walking around the next day, which was unusual from previous surgeries. I felt pretty amazing. At my post op he discussed how severe my endo was and that even though he got every last stinkin bit there is a chance I could have adenomyosis which is endometriosis in the uterus. 

Let's fast forward to recently. I found out the other day that I do have adenomyosis. Was it frustrating to hear? Yes and No. I was glad all the endo was excised during surgery and now i'm glad to know that I am not nuts that the pain that is still existing is in my uterus. I did say to him I can't believe I have an angry uterus. 

I am hoping Dr. Sinervo will be able to do my presacral neurectomy so I can save my uterus but at this point, with all the pain I went through the other day, just from him putting in my IUD, something so simple, it disturbed my uterus to the point where I was having trouble walking today. Pain has been shooting down my legs and my back is on fire. I have come to the conclusion that the uterus has to go. I will always have endometriosis but my pain will be lessened by 90%. 

What I am dealing with emotionally is the fact that I won't have my own children. Yes adopting is an option but right now I have to grieve in my own ways. To even type this I am holding back the tears. I can't even tell you how much I've wanted children, how it pains me that I am still single and have no significant other to be there for me. I will say i'm lucky to have an amazing family. I also have my beautiful niece that will be so spoiled more now than ever. I just haven't come to terms with why me?  Why am I being punished for something that i've wanted so much. It's going to change my life even though the scars will remain. I guess you can say it's going to take a long time to get to where I want to be emotionally. 

First and foremost what is Endometriosis

I am starting this blog journey not only for awareness but also for myself because I honestly can't keep everything bottled up inside for much longer.

What is Endometriosis?
It occurs when tissue similar to the endometrium (uterus lining) is found outside the uterus and other parts of the body. It is generally found in the pelvic cavity but can attach to any of the reproductive organs. It can also be found outside the reproductive organs like appendix, bladder, bowel, and rectum. 

Symptoms:
There are so many symptoms but I will just throw out a few. 

• “Killer cramps” – cramps that do not go away with NSAIDS and/or impede the activities of daily living
• Long periods – periods that last longer than 7 days
• Heavy menstrual flow – having to change your pad or tampon every hour to two hours throughout most of your period
• Bowel and urinary disorders – including but not limited to painful urination or bowel movements, frequent urge to urinate, or diarrhea
• Nausea or vomiting
• Pain during sexual activities
• Infertility

There are 176 woman and 1 in 10 girls that are affected. These numbers change frequently. 

Diagnosis:

It can take up to 10 years. Yes you read that right! This is due to lack of knowledge and awareness with this disease especially in the medical community.

Despite what people assume, endometriosis can not be diagnosed with an MRI or CT Scan. Pelvic exams can raise suspicion. (I will touch on that in one of my entries)

Laparoscopic diagnosis is the only way to find and diagnose endometriosis.

Treatment:

This is the fun part (being sarcastic)

The most important form of treatment is Laparoscopic Excision of endometriosis. In normal terms cutting "every last stinking bit of endometriosis out"(favorite quote from my last surgeon Dr. Mackenzie)

There is ablation and cauterization but this is where many doctors don't understand or try not to understand. Ablation is burning the top layer of Endo. When we end up burning ourself with a curling iron or touch a hot pan, we burn the top layer of skin. What happens with the burn after time? It heals and skin grows back. Pretty much the same concept with ablation. (will touch on that experience in a later post too)

A hysterectomy is another medical form of treatment that most think "cures" endometriosis. 

THERE IS NO CURE