Most people are surprised to know...

Most are surprised to know that there really isn't much doctors can do for me at this point. ALL of the endometriosis was removed in early December. Yet I'm still in daily pain. How can they fix something that isn't there? We now suspect that there is some nerve damage/inflammation and that's what's causing all of the pain. I'm currently doing several things to help and repair my nerves but it's a very slow process.

I don't get pain meds. I am prescribed something called Tramadol(non narcotic. Kinda like super Tylenol) and sometimes its amazing and helps so much and other times I question if I even took anything. I use several meds to help the pain in the long run. But on my bad days I only have Tylenol, Tramadol, essential oils, heat/ice, and sheer will to make it through. The pain has made me nauseous on a regular basis. I've passed out before. The pain even messes with my heart rate/rhythm, blood pressure and breathing. Even if I go to the ER all they can really do is dope me up on morphine and sometimes that doesn't even take the pain away. I have been completely maxed out on morphine, to the point I couldn't keep my oxygen levels up, and still one of the only things to register was pain. People ask me how I do it and I honestly don't know. I've always been stubborn and never given up. And I'll continue to be stubborn. With my last breath I'll be fighting.

My endo journey

I started my period when I was 12 1/2. From the start I had crampy, heavy periods but they run in the family so I thought nothing of it. I would go through a pad every hour and a half to two hours. I often woke up in a pool of blood. The summer after I started I noticed my ribs would hurt around my cycle, I thought it was weird but what do I know about periods. In September 2010 I had pain on my whole right side, I ended up with my appendix removed. We thought that would solve all my problems. Nope, I only got worse. I always hurt, especially after I ate, so I pretty much quit eating. Because of the pain after eating we thought it was a GI problem(gastrointestinal). My GI Dr. did every test imaginable and everything was normal. It always got worse around my cycle. Because of the pain I ended up dropping out of 8th grade, luckily I was ahead so I was okay. Because of the pain and absences my anxiety got really bad. Freshman and Sophomore year I struggled with attendance and being able to get my credits but I did it. Junior year(2013) started just like all the others, struggling with attendance but getting good grades. Around the start of the school year my periods were horrid, so painful and heavy. At Christmas my pelvic area hurt but I was due for my period so I assumed it was that. Even after my period I was still in severe pelvic pain. Many dr.s appointments later I was told about the possibility of endometriosis. Five days after my 17th birthday(February 2014) I went in for surgery. When I woke up I was told that I was covered in endo spots, in addition I had a pool of blood in my belly. To keep the endo under control I was put on birth control after surgery. I was to keep taking them continuously, skipping the blanks. Recovery was going great until it came time that I should cycle(2wks after surgery) then I hurt just as bad as before. We tried changing my birth control, that didn't work so we switched again. About this time I withdrew from school, because I was pretty much bedridden.When birth control pills didn't work we decided the best option was to put me into medically induced menopause. I did the Lupron for 6 months(June-December 2014) as recommended but even that didn't help. I resumed my cycle 4 months in. My pain never got better. It only seemed to get worse. In December 2014 I had excision surgery with a specialist in Ogden. He found that my endo had worsened and spread despite treatment. He got rid of ALL the endo. Now 4 months later I'm still in daily pain. I just started seeing a pain specialist and they tweeked  my meds just a bit but I'm already seeing a difference. I'm getting 1-2 days a week where I can be me again for at least half the day. I'm hoping that with continued tweeking of meds that I can get my life back. Even if I just got half of it back I'd be ecstatic. Just thinking about being able to wear my old clothes again and to be active brings tears to my eyes.

UPDATE September 2015: My daily pain levels have sky rocketed. We're now exploring other options for what could be causing the pain. Hopefully I'll get some relief.

UPDATE January 2016: I had surgery in December. Here's the deal with that.

UPDATE February 2017: I had yet another breast tumor removed(endo related as the hormones the endo feeds and grows from also feed and grow the BENIGN yet painful tumors. This is not well known.) I've had a total of 3 removed since 2012.

UPDATE April 2017: I had a 4cm cyst on my right ovary that needed surgery. It was removed and no visible endometriosis was found( I say no visible because there could still be microscopic endo and that could be the reason for my continued pain or it could "simply" be nerve damage). I am now back on birth control pills and skipping the blanks to hopefully stop the formation of more cysts and therefore prevent scarring of my ovaries.

Career and Work

I'm in the process of starting a business geared towards endo and all that goes along with it.

Once my pain is under control I want to go to college to become a certified nurse midwife. I find pregnancy and the process of birth beautiful and magical.

Mom and Emma 4/24/09

My ultimate career goal is to be a stay at home mom. As you probably know that can be very difficult with endo. Not only is there the fertility side of things but then there's the pain and fatigue that comes with being an endo warrior. I guess we'll just see how things go.

Mothering started early

Would I rather have a visible or invisible illness?

With a visible illness it's obvious to those around you that you're sick. But you also get the stares, pointing and jokes. They can pretend it's not there, but it is. For everyone to see. There's no hiding it. Most people are polite and understanding but there is still the self consciousness of the individual and family.

With an invisible illness it's just that, invisible. There's nothing to validate your statement that you're sick. With an invisible illness you constantly get comments of "You don't look sick." "You're exaggerating" "It's just an excuse" "You're faking""The pains in your head" "If you just ate better..." "Maybe if you lost weight you'd feel better." "Have you tried?" "Oh, my friend had that and she's fine."

It's never ending. As if the pain wasn't bad enough, now everyone has an opinion and knows more about your illness than you. They take you trying to raise awareness or talking about your illness as attention seeking and all we want is support and understanding.

So I don't know. Either way has its pros and cons. I'd much rather just be healthy but since that isn't an option then I guess I'll just take what I get.

Alternative treaatments I've tried...

Lemongrass

I personally have used essential oils, herbs, vitamins and other supplements. Omega 3's seem to make a huge difference in my pain, I'm pretty sure they're an anti inflammatory. Castor oil packs have helped me to.

Frankincense

Marjoram

 I also try to eat clean(whole foods) and that really helps. Not having the extra hormones and chemicals that adds to my endo and my pain. To avoid the hormones in meat nowadays my family raises meat rabbits. We eat it at least once a week, some weeks 3 or 4 times.

All the meat from about 20 rabbits

Rabbit chunks

 You can actually see me in the background processing the last rabbit.

 Some people have tried acupuncture and seen results with that. Personally I don't think I can handle that. Massage is a common one to.

How many meds/vitamins do I take in a day...

I take 4 prescriptions every night, I should also be taking 3 other supplements. On a bad day I take 3-4 pain relievers every 4hrs. With the awful pain usually comes nausea so add an anti nausea pill to the total. Today was a pretty decent day and I've taken about 12 pills. This is all in an effort to control the endometriosis and pain associated with it. In an effort to give me my life back. I've gotten very good at discreetly taking meds, don't need a drink most of the time anymore. You'd be surprised how many pills I can take at once now.

meds I take regularly

No wonder we get labeled as drug seekers. None of my meds give me a high. We don't want drugs, we just want relief. More than relief we want a cure.

Hardest part about nights...

Is getting comfortable enough to sleep. 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, hence why this didn't get posted last night. Sleep is supposed to be an escape, a time to recharge. Not with endo. There is no escape, no recharging.

Gadget I can't live without...

Gadgets pertaining to my endo that I can't go with out are definitely my heating pad and tens machine. The heating pad helps to relax and dull the pain. The tens machine sends electrical pulses through the area of pain which prevents the pain signals getting to your brain. The electrical pulses intercept the pain signals. I almost always have one or both on. Because of this I have a heating pad burn. I've gotten used to maneuvering with my "leashes". I have wires and cords everywhere. It's just the norm now.

tens machine on my belly

Favorite medical TV show...

That would probably be House. I love to figure out a problem and learn about commonly misdiagnosed conditions. I love the medical world and plan to go into midwifery. Dr.s and nurses are always surprised at my knowledge and understanding of medicine and how the body works, all the different processes. It also comes with all the appointments, tests and hospital trips that us endo warriors have.

Hardest thing about mornings...

The hardest part of the morning is probably when I first wake up and I take "inventory" of how my body feels. 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.

Treatments I've tried...

I have tried more birth control pills than I can count. Some helped for awhile, some did nothing. After countless birth control pills we decided to put my body into medically induced temporary menopause, Lupron. Even this didn't help. While on the Lupron my endometriosis spread and worsened. The exact opposite of what was supposed to happen.

Hair loss, a side effect of Lupron and the anasthesia used during surgery.

After the Lupron we did excision surgery, got rid of ALL the endo in my body. BUT for whatever reason I'm still in daily pain. Currently we're treating my endo with the mini pill, an progesterone only birth control. I do use essential oils and other natural treatments to help with the pain and inflammation that goes along with endo. I also just started seeing a pain specialist to hopefully get some help getting the pain under control.

Most people assume...

They assume because I don't look sick that I'm not. On the outside I'm the picture of health, on the inside I'm a mess.

Most assume that because I've had surgery, had two in fact, that I shouldn't be in pain anymore. While in theory that's true that isn't the case. I'm still in daily pain. Some days are better than others. Some days I have a few hours where I'm functional again, but I pay for it later. Even if I only had one week a month where I could do what I wanted, cooking, cleaning, just living life the way it's meant to be lived, I would be ecstatic. When you fight for everyday you come to appreciate the smallest things. Being able to run to the store is a treat. Going on a date is a HUGE deal. These everyday things that everyone else takes for granted are SO hard for us.

6-7 on a daily basis

Our pain is so complex and unpredictable that we can be having a great day, like maybe a 2 and within an hour we're at an 8. With no reasonable explanation. Sometimes there's no discernible trigger.

Biggest adjustment...

That would probably be not being able to do all the things I took for granted. Cooking, cleaning, doing animal chores, playing with siblings, playing with my dog, even just showering with out ending up doubled over in pain. Even just wearing jeans and a belt kills me. People don't understand the pain. They think we exaggerate or use it as an excuse. We don't, at least I don't. I try to hide it as much as I can. But there's only so much you can hide when the pain is all consuming. When all that registers is pain. The pain is mind numbing.

BUT I've had symptoms since...

I had symptoms starting the summer before 8th grade. I noticed that my ribs would get really sore around my period. We thought it was a GI problem but all tests were perfect. On paper I was very healthy. I had cycles with this pain, it would come and go. Then in November 2013 I had the worst period I had ever had. It was just extremely painful. That period finished and life went back to normal until my next cycle. Around Christmas 2013, again a very painful period. But this time the pain didn't go away once my cycle ended. It still hasn't gone away. Anyways many Dr.s appointments and ER visits I went in for surgery and was diagnosed.

Add caption

 To take the above picture I had my boyfriend help me wrap the barbed wire around my belly. The barbed wire was actually more comfortable than my endo pain. With the barbed wire you can sit a certain way, not do such-and-such and avoid the pain. Endo is so much more complicated than that. It has a mind of its own. You can be good all day, not do anything that would set your pain off and then all the sudden you're smacked in the face with the pain. No warning. Now you just hope and pray that meds and your heating pad helps. The pain caused by endo is so complex and confusing its hard to explain to someone who has never experienced it.

I was diagnosed...

I was diagnosed through a laproscopy on February 19th, 2014. The surgeon makes a few small incisions in your abdomen, one of which usually in your bellybutton. Then the surgeon can stick his camera and tools through these small incisions which gives you an easier recovery as opposed to one big cut. To give the surgeon room to work and be able to see, your abdomen is inflated with gas. When they close you up some of the gas is trapped and will escape during the next few days. It usually escapes though your shoulder and its some of the worst pain I've ever experienced. Moving helps the gas escape quicker, even if you can only flap your arm like and injured bird :P

I was so excited to finally have a diagnoses even if it was something as life changing as endo. It meant the pain wasn't all in my head. I wasn't crazy. I had an answer as to why I hurt. When I was coming out of surgery I asked the nurse if they had found anything and when she said yes I burst into tears. It was such a relief.

 WARNING PICTURES OF ACTUAL SURGERY COMING...

Behind my uterus

big endometriosis implant behind right ovary

 So most of my endo is on the sack protecting the reproductive organs. You can see the discoloration, They almost look like sores. Even though they're small they can cause a LOT of pain. Just think how painful a small blister on your foot is. And every step you take is painful. Endometriosis is very similar in that respect.

uterus, tube and ovary

 For this surgery the surgeon burned the endo away.  That is not the most effective treatment or removal. Excision is. Excision takes ALL of the endometrial implant while burning only gets rid of the very top layer.

pool of blood in bottom of abdominal cavity

behind uterus again

Living with endo is...

Exhausting. The pain takes so much energy. Then there's the energy trying to get people to take the pain seriously, it's not in our head. It really is this intense. We aren't seeking attention. We aren't drug seekers. The energy we use convincing ourselves that we can make it through another day full of pain. The energy trying to hide the pain. All the unknown about when we're going to hurt. We can't plan anything really. And we feel SOOO guilty when we have to cancel because the pain is just too much. There's a term coined "painsomnia", meaning we can't sleep because we're in too much pain. This happens many nights and just adds to the exhaustion. Why do you think we have those dark circles under our eyes? They don't go away no matter how much sleep we get.

March is Endo Awareness Month

Brace yourself for a flood of endometriosis related things :)

Endo butterfly I drew

I will be doing a post about endo each day(from now on, kinda playing catch-up right now). Please share and help me raise awareness :) I'm happy to answer any questions:) I'm an open book.