Having Endometriosis Means?

Having endometriosis is such a complicated issue so I chose just a fraction of what we deal with to try and give you a glimpse of what having endometriosis means for the 1 in 10 women who suffer with it.

First and foremost there's the pain, both the physical and emotional.

First I'll cover physical. For me my pain at its most extreme feels like my internal organs are in a meat grinder, at this point the pain is all consuming, I can't stand anything touching my belly, I'm nauseous and for me it actually triggers seizures. Yes, you read that right. My pain gets so unbearable that it causes me to have seizures. I will have them back to back for hours until my pain is under control(now I do have them when my pain isn't as bad and I have many other triggers, pain just happens to be a big one and because of my endo its the most common trigger). This is an all too often occurrence for me. On a good day my pain is just a constant deep ache in my pelvis, like I'm wrapped in barbed wire. Its distracting but I can push it to the back of my mind and ignore it. Well try to anyways, I rarely can for more than a few hours.
 Now for the emotional pain that having endometriosis causes. I think the biggest ones are fear and uncertainty. Fear that I will never have a day that isn't tinged by pain. The uncertainty that my pain can go from bearable to unbearable in an instant, without warning. The uncertainty that I can never know how I'll feel on an given day, and never being able to commit to anything until right then because my pain can change in the blink of an eye. Fear that I may never be able to get pregnant and if I do the possible complications that endo brings to pregnancy. Uncertainty that if I can safely carry a baby to term that I won't be able to be the kind of mother I want to be and the mother my children deserve because of the pain. The fear of where the endo can spread and the problems it can cause. Uncertainty of the next surgery knowing that it won't be my last. Maybe the last for several years but knowing full well that a dr can never guarantee that this will be the last. Fear knowing that just the fact that I have endometriosis that I have a 37% higher chance of developing breast, ovarian or endocrine cancer in my lifetime. Fear that my sister could develop this awful disease to, or worse, that I could pass it on to my daughter.  Morning after morning one of the first things to register is pain. Then disappointment. Disappointment that the day will undoubtedly be tainted with pain. Disappointment that again I can't do the things I used to without causing great pain. Disappointment that I'll see the pain and anguish in my parents eyes as they watch me writhe in pain. The helplessness I see in Sam's eyes as he tries to comfort me. Disappointment that it will be another day of just surviving, not living. Disappointment that it will be another day in isolation.

There's the never ending exhaustion. When the pain is so bad that you can't sleep and even when you do sleep the pain invades your dreams. You dream of randomly collapsing, of being stabbed, of giving birth, anything that causes extreme abdominal pain. That was me last night and most nights. Sleep is supposed to be an escape, a time to recharge. Not with endo. There is no escape, no recharging.

Then desperation and hope, they're kind of the same emotion. Desperate for the pain to end, hoping it one day will. Desperate for there to be some sort of new treatment and hoping there will be a cure by the time your daughter is living this same hell. Hope that she never will. Hope for this to be the month that those two lines show up. For this to be the baby that sticks, the baby that you get to bring home. Desperate for loved ones and doctors to understand that this pain really is this bad, that our pain is real. Desperate for someone who "gets it" and heartbroken that someone else is living this same hell. Desperate for the public to be educated. Hopeful to never have to hear the ignorant comments: "its just a bad period." "all women have cramps" "all the tests came back normal, there's no physical reason for your pain." "have you tried......." "my aunt/sister/mom/cousin had it and after she had kids/hysterectomy she was fine!" "just get a hysterectomy, that'll cure it!"

But most of all it means showing strength. Showing the strength to never giving up. By being your own advocate. By being there when a sister falters in her resolve and leaning on others when you yourself falter. Strength to ask for help when we need it. Strength to spread awareness and education knowing not everyone will agree. And the strength to wake of every morning knowing it will be another day of fighting.

Surgery tips and tricks

Basically as far as the actual surgery goes the doctor will make an incision in your belly button and then inflate your belly with air so that they have room to work. Then there will be a few incisions around your belly, each doctor does a different amount and in different places. Then the dr will stick a tool into your vagina and then into your cervix so that they can move your uterus around and out of the way during surgery. The dr will most likely burn any endo they find. They may remove some and send it to pathology for a positive diagnosis. They'll check your entire abdominal cavity for abnormalities from top to bottom. Once they're done the doctor will pull out their tools and deflate your belly as much as possible and close up the incisions with either glue or stitches. You'll also most likely have a catheter placed during surgery, this can make it very painful to pee once you wake up. It'll go away within a day or so. You will bleed some vaginaly after surgery but it shouldn't be more than a regular period. Surgery can and often does make your period show up early. Be prepared for this.

Now onto tips and tricks

Shower the morning of surgery, you won't feel up to it for a few days after. Don't bother with makeup it'll just get smeared. No acrylic or painted nails to the hospital, no piercings either. I usually get a pedicure before surgery just as a way to pamper myself.

 With all the pain meds they'll have you on after surgery you will end up constipated. Take stool softeners religiously until you're off pain meds.

Have snacks and drinks handy as you don't want to take the meds on an empty stomach and the meds give you horrid dry mouth.

Set a timer so that you don't get behind on meds or the pain will get too bad and you'll have trouble controlling it, take them on time for a least 3 days then try spacing them out after that.

Day 3 is usually the worst as far as pain and then you start feeling better.

Sleep propped up, it'll help the pain from the gas and help your breathing which can be suppressed from the pain meds.

 Bring a pillow to put across your belly for the ride home.

I pretty much sleep for like 2 days straight just getting the anesthesia out of my system and because of the pain meds.

Get up and walk for 10-15min once every hour or so. It helps the gas escape and keeps you from getting stiff. Some also use a heating pad for the gas pain. Some also like peppermint tea. When I say gas pain I'm not talking about gas in your intestinal track, it's gas that's trapped in your abdominal cavity during surgery. It usually works its way out through your shoulder over the next few days and at times hurts worse than your belly. I personally just walk and sit in bed flapping my arm like an injured bird to work the gas out.

 I usually don't try to shower until like 4-5 days after surgery and even then its a super quick shower, get in, get wet, wash hair, rinse, put conditioner in and wash body shave pits, rinse and get out. Don't worry about shaving your legs, the bending hurts too much.

Remember to not lift anything over like 10lbs for 2wks after that if it hurts don't do it. Take it easy and be careful to not overdo it, it'll just make recovery longer.

The methods in This post post will help with recovery as well.

As far as what I take to the hospital I have always came home the same day except when I had my appendix out. That being said I usually still pack a bag just in case so that my parents or Sam can just grab and bring it to me.

What I take with me to the hospital:
Hair ties
Headband
Chapstik
Lotion
Pads
Gum
Chargers
Something to do while waiting to be taken back, coloring book, ipad, book ect.
Pillow for my belly for the ride home
Snacks for whoever is with you and something to keep them entertained.
I usually wear a baggy shirt, sports bra, yoga pants, fuzzy socks and slip on shoes. A night gown would be a great option to. Just something loose on your belly.
I have very long hair so I usually put it in a French braid so that it's out of my face and comfortable to lay on.

What I pack in my just incase bag:
couple pairs of panties I don't care about
Socks
Loose bottoms
Baggy shirts
Sports bras
Hair ties
Hairspray
Headbands
Toothbrush and toothpaste
Lotion
Deodorant
Pads
Chargers
Fav blanket

Update from Surgery

As you guys probably know I had surgery on December 10th, 2015. Dr. Arrington was looking for endometriosis or something else to explain my pain. I had a cystoscopy and a colonoscopy done while I was under to check for endo or other diseases in my bladder and bowels. Those both were clear. My bladder and bowels are perfect.

 Well he found an answer during the laparoscopy! He found what he thought at the time was endometriosis just past the prior excision margins, around the abdominal side of my cervix and over a major blood vessel. He also found some strange thickening. Everything was excised except the lesion over the major blood vessel, he decided excision was too risky and opted to burn the lesion into oblivion. Pathology revealed the lesions were endosalpingiosis and the thickening was just scar tissue. Endosalpingiosis is similar to endo in its misplaced cells from the reproductive organs. Endometriosis is misplaced uterine lining while endosalpingiosis is misplaced fallopian tube cells. Little is actually known about endosalpingiosis. From what I understand it behaves much like endometriosis in how it spreads and the damage and pain it causes.

Recovery was a bit bumpy the first month or so. I felt so much better but whenever I tried to do anything I ended up hurting myself and setting back my recovery.
Now almost 9wks after surgery I'm improving. Slowly but surely I'm getting better than before surgery. I am having more good days than before surgery but at this point I think I'm still having more bad days than good. But as my recovery goes on I keep getting more and more good days. I still have flare ups(currently having one :( ). BUT I've had so many break throughs since surgery. Emptying my bladder is no longer painful, in general bathroom time is no longer painful. I wore jeans for 5hrs one day! Haven't been able to tolerate jeans for more than a few minutes in 2yrs now. I've also been able to go days without taking any pain meds. And have been going milking with Sam more often and not have to take meds to do so. I'm really excited to see how I'll continue to improve. It's going to be a long road but it looks like I'm finally headed in the right direction :)

WARNING pictures of actual surgery and surgical incisions below

Incisions the day after surgery

Right rim of the peritoneal cavity

Arrows are pointing out blisters 

Burned leasion

More blisters 

Dotted line shows prior excision margins

Behind my uterus, dotted line shows prior excision, new blisters are circled

Oops

So my laptop has been d down and it never occurred to me to try posting on any of my other devices. Everything is still pretty much the same, still in daily pain and just surviving. Still going strong with my Sam.

 I DO have surgery in 14 days though(12/10/15). The surgeon is going in and looking for new endo growth, and adhesions from previous surgeries or as a result of endo. He will also be taking a look inside my uterus, taking a biopsy of the uterine lining, a look in my bladder and possible biopsies, as well as exploring my entire abdominal cavity.  If he finds anything wrong if at all possible he'll fix it right then. If he can't fix it immediately then we'll cross that bridge when we come to it. I'm very excited for surgery but also terrified that there won't be a answer for my pain.

Comment what you want me to write about :)

Well that's all for now, bye
Kate

My Service Dog

I bought Milo October 7th, 2013. He was about 12wks old. My dad had been talking about getting a hunting dog and one night I started looking. I found Milo with a family locally. My dad said he wasn't talking about getting the hunting dog just yet and said no. Because of my relationship with my dad I knew my dad would relent and I'd get my puppy. Well I was right and about a week after I found him online we went and picked him up.

The night I brought Milo home

He was so tiny!

When he was little

 For the first week I slept downstairs with Milo so that we had easy access to the backyard. The first few nights he woke me up every hour to go potty but once he realized that I would listen and let him out when needed he would sleep longer stretches until with in a week he slept through the night. Once he slept through the night we moved into my room. Like I said Milo was supposed to be a hunting dog, specifically a bird dog. I didn't get the chance to do much training with him before my health tanked. We had done some games of fetch with the wings, took him out shooting and were working on the basics like sit. By December my pain set in for good. When I had my first endo surgery in February 2014 I noticed that Milo was waking me up every 4hrs to take more pain meds. If I woke up and just rolled over he'd wake me up again and again until he heard me get into my meds. Once i realized that he was doing that I started paying more attention to how he was acting and quickly realized that he was alerting to many other things as well and had been for quite some time. At this point he was about 6 months old. He would wake me up to take meds during the night, wake me up from nightmares that I had frequently at the time. He would alert to when my blood sugar would drop, right before my pain would spike, when I was going to over do it and needed to sit/lay down. When he was around a year old I took him to girls camp with me as my health was still bad.

Him working at girls camp

Leaving for girl's camp

 As my health has continued to deteriorate he has picked up new alerts.  I'm finally learning to just listen to him as he's almost never wrong.

As of now he alerts to my blood sugar, my emotions(anxiety/upset), my heart rate and blood pressure. He warns me of my seizures and when my pain will spike. When my pain meds have worn off or when I need to take some cuz bad pain is coming. When I need to take a break and go lay down. If I am ignoring him he will go and start bugging Sam or my parents. He also has some tasks that he's trained to do and others that I hope to train him for in the near future. When we're in public he gets more leash than most service dogs because he creates a buffer zone so that no one bumps into me. He does crowd control and prevents people from getting too close. He will also help me up stairs and sometimes I  have to use him to help me stand up after sitting for a long time. Sometimes if I drop something he'll pick it up for me (something we'll be working on as it hurts me to bend over). I want to train him to retrieve my different meds. And a few other things that will help when we're in public like being able to direct him where I want him to lay down.

A few of his other tricks/tasks that he does that isn't related to my health are: We can tell him to go find a person and he will track them and either bring them to you or take you to them. This has been especially helpful when camping and my mom want the two youngest back to camp. Milo will go find them and herd them back to camp. Max has severe ADHD and gets distracted very easily, Milo will keep circling back around and make sure Max is following him. There's been a few time where we didn't know which friends Emma went to and Milo led us to her. Milo and Toby also will track and locate rabbits when they get out. When I took Emma to kindergarten on the ATV Milo would run next to us, walk Em to her classroom then come back to me and be ready to go home. Milo also picks up on other family members feelings, he always knows when one of the kids is upset.

Running alongside the ATV

A little bit more about Milo. He is a garbage disposal. He loves apples, carrots, peaches, tomatoes, cucumbers, apricots, watermelon and many more fruits and veggies. He LOVES my siblings. He will wake me up so that he can see them before they leave for school. He always acts like no body ever loves on him. He loves the water as long as he can touch the bottom and it's not coming at him, i.e. a hose. He is one of the most loving dogs I've ever met. He meets everyone on their level. We had a little girl that was scared of dogs come up to Milo to conquer her fear and at first while she was working up the courage to come over Milo tried to greet her just like he would anyone else, once he realized she was afraid of him he just laid down and waited for her to come to him. Once she did come over he just rolled on his back so that she could scratch his belly. He will lay down and offer his belly to special needs kids to. I have a very special relationship with Milo. He is my best friend.

Here are some resources to learn more about service dogs and some of the things they do as well as some of the rules/laws regarding service dogs. 9 things you didn't know about service dogs). And this gives you a better idea of my life and how my energy is spent (spoon theory).

My Sam

We met at the beginning of sophomore year in English class. I was smart and he tried to copy my answers. I was having none of it and called him out on it. For some reason all the guys in English ganged up on me and were all hitting on me. Sam and I became friends, became best friends pretty fast. You could say he won me. I liked him but no one had really like me before, they all just wanted something from me. I just dismissed the fantasy that we could ever be together. We always sat by ourselves during lunch and would just talk. We opened up to each other and were just there for each other. Well on January 22, 2013, I was having a panic attack during lunch and Sam grabbed me and hugged me, he kissed my cheek and with tears streaming down my face and said "no one has ever done that." . He said something but I didn't hear him so I turned to face him to ask him to repeat it and he just kissed me. Then he whispered "Kate, I think I'm falling in love with you". All the sudden we both knew that we both felt the same way about each other. As they say the rest was history. We've been inseparable ever since. He's gone through hell with me. In the two and a half years we've been together I've had 3 surgeries, countless tests and a lot of emotional stuff happen. I've even tarted having seizures since we've been together. He has had so many chances to run and no one would blame him. But no, he's stayed by my side never wavering. I really can't imagine life without him.

Spring 2013

Fall 2013

Sam just holding me when I hurt

Spring 2014

April 2015

After Sam had his wisdom teeth out Summer 2015

 

2yr anniversary January 22, 2015

Well here's an update...

So since my pain hasn't gotten better, in fact I think it's gotten worse Dr. Arrington(endo specialist who did my last surgery) wanted me tested for pelvic floor dysfunction and interstitial cystitis(aka IC). Well yesterday I saw my gynecologist to be accessed for pfd and after the exam I got the good news that my pelvic floor is fine. BUT that means that IC is most likely the cause of the pain. Yet another condition with no cure. It's very common in women with endo. SO many of my symptoms fit.
It explains why things that are supposed to help muscle spasms help my pain a TON, the painful bowel movements, the pain in the nether regions, why my pain increases as my bladder fills up, why when I pee it feels like my insides are being crushed and so much more. I have an appointment with the urologist on September 16th. He'll most likely start with a urine analysis and culture. Then an ultrasound after I pee to see how much if any urine I'm retaining. After that probably a camera up my urethra(tube from bladder to outside of body) to look at the inside of my bladder and he'll probably take biopsies during the cystoscopy. I'm already doing almost all the things they tell you to try first and obviosly they aren't helping, at least not enough. I guess this is the start of another journey you'll take with me...