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...

Emotional Throw Up

I don't even know if anyone actually reads these, and if they do do they even care? I've withdrawn a lot these past few months because I didn't want anyone to know that I've gotten worse. My pain has spiked and I'm having more bad days than good days again. People don't like hearing the same old story, the same excuses, the same lies that "I'm doing good.".  People don't realize that when you're sick your social life consists of my family, Sam and dr.'s appointments. I don't interact with anyone else. I only leave the house to go to the dr.'s and to the dairy with Sam( the joys of harvest season. Only way I get to spend time with him is to go milking with him.). People are too busy living their own lives that they can't take the time to sit and watch a movie with me. Their lives are so "go, go, go" that they don't even think to stop and think about how I'm doing.

How I spent the 4th of July

After my colonoscopy/endoscopy April 2015

Through all of this Sam has stayed by my side. He's gone to dr.'s appointments, he even took me for my colonoscopy/endoscopy because my parents couldn't. He never holds my health against me. To him I'm just me. I'm not the sick Kate or the healthy Kate. I'm just his Kate. I don't know where I'd be without him. He's brought me out of the pits of despair several times. When I feel like I can't go on living like this he's right there telling me I can. Giving me a reason to hang on. I know I wouldn't still be here without him. These last two and a half years have been the happiest of my life, the hardest but none the less the happiest. I can't even put into words how much Sam means to me. I always brag about him to everyone, not to rub it in their face but trying to show Sam what he is to me.

Anyways, I have a few dr.s appointments and most likely tests  coming up in the near future to diagnose additional conditions. I'll try and keep everyone updated but please understand if I don't want to talk. It's going to take time to process the test results and be able to get me functioning again.

Well, bye for now.

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.