The low down on Endo

This isn't an exciting fun post, especially for you guys. This is an informative post if you will about the life of someone who has endometriosis.

Some parts may be TMI for some, but I'm here to set the record straight. I'd encourage you to stop reading here if you're not in for that. Trust me you can get through the first part....all that scientific mumbo jumbo.

The mayo clinic gives this definition for endometriosis:

“Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus (endometrial implant). Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region.
In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.
Endometriosis can cause pain — sometimes severe — especially during your period. Fertility problems also may develop. Fortunately, effective treatments are available.”

That last sentence there, “Fortunately, effective treatments are available.”

Umm I must have missed those effective treatments in the 6 years I have been diagnosed with this disease…who knows how long I’ve actually had it.

By effective treatments do they mean surgery to ‘rid’ the disease until it decides to rear its ugly head again? Surgery is always a fun, cheap option (sarcasm font). Because you see there is no cure for this, no magic pill. Yes, there are different things such as birth control pills that can help you have a better way of life. But once you have this disease there is no getting rid of it for good. It may stay dormant for a period of time, which happened to me; praise Jesus for that break! You can’t even determine you have this disease unless you have exploratory surgery; which I had back in 2008.

Here is another definition from endometriosisassn.org:

“Endometriosis is a painful, chronic disease that affects at least 6.3 million women and girls in the U.S., 1 million in Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus.
This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions.”

Now I tried to shorten these definitions aka take out names of lady parts and such that might be just a little much… Man I feel like I should be embarrassed to write/post this blog, but the girl writing these words right now has been in pain for FOUR weeks straight, with every week getting worse so forgive me if I’m not embarrassed or concerned about you reading this and thinking it’s not lady like.  

Through the years with some of my ailments I have had, mainly cervical cancer and endo I have realized how uneducated some people are about certain things. They will have an idea in their head of what those things bring or are about, or my favorite; they will google it and become a specialist on the matter. We all know everything on the internet is 100% true, am I right!? You don’t even want me to get started on google and cervical cancer. You can read all the internet has to offer on that, read discussion boards, etc. but every situation is different. Almost all cases of cervical cancer are from HPV; there are very few cases of having cervical cancer and not getting it from HPV…my doctor has said around 10%. Well, guess what!? I would not be me if I did not fall in a very rare category now would I?? I am indeed one of those cases of having cervical cancer, but not having HPV. The type I had can come out of nowhere and fast unlike 'normal' cervical cancer, which means I have to keep watch on it very often...it's a good thing I like my doctor ;)

Now to what bothers me about people’s thoughts on endometriosis: It’s just a bad period, it only hurts while you’re on your period, tons of people have it; it’s not that big of a deal, you don’t look sick.

Lawd. I can assure you I have not been on my cycle for 4 weeks now. Yes, a cycle is what can trigger the whole endo process but when an endo flare up occurs you are not on your cycle the WHOLE time. It’s not just a girl being a girl ‘that time of the month’. Rolling my eyes right now, for real.

So that’s just a few background facts for you. Now onto the life of someone who has endo. Aka the last four weeks in my shoes.

You never know when you will have a flare up. I can’t tell you how many times my friends have heard me say ‘my ovaries hurt’ or ‘my insides hurt’. As gross as that sounds it really is an accurate way of explaining it…not just one part of your body hurts, your whole pelvic region is in pain. It’s hard to explain this pain, someone good with words might be better at it. For me a mild pain or when you feel a flare up coming on could be when ‘my ovaries hurt’; this throbbing pain where you eventually feel like your ovaries are so swollen they may explode with any sudden movement, when you stand up from sitting down and it feels like someone stabbed you and you bend over unable to walk. When one of my flare ups is in full swing I usually refer to that as ‘my insides hurt’. It’s almost like a heartbeat in your pelvic region and each time it ‘beats’ it feels like someone has both hands squeezing your insides, like you are about to explode. And this continues ALL day long. The pain is so intense at times you just want to sit in the floor and cry. Even when you medicate with Toradol, Lortab, Percocet, whatever your doctor gives you the pain is always there…not near as intense with some of those medicines, but you just always feel it…if that makes sense. The pain gets so intense that it will go into my legs and back. I will lay there and start thinking ‘Hmm maybe this isn’t the endo, maybe I have a tumor pressing against my leg’…I’m telling you the pain is that bad sometimes there is no telling what you mind can come up with. Your body is SO tired all you can think about doing when you’re not in bed is getting in bed and going to sleep, but when you are finally back in bed you just toss and turn unable to sleep because you can’t get comfortable.

This flare up has been one of my worst or I most definitely would not be posting this for the world to see. I never know when I start getting these feelings how long they will last; just the week before my cycle, during my cycle, or maybe just the week after my cycle. Or maybe all of the above plus more!?

This is one of the first times I’ve actually gotten to see my doctor during all the pain. It’s usually once it has gotten better with scheduling of appointments and not knowing how I will feel one day to the next. So I came baring a list of all questions endo, I came in pain, I came mentally and physically drained. For weeks now I have gotten off work and went home straight to bed, ya’ll I get off work at 4:30…this is not ok.

After my ‘normal’ (because I’m so normal) 6 month check-up he took me to his office to discuss endo and my list. I feel like the poor man thought he was back in medical school. We had medical books pulled out the little pharmaceutical book (not sure what you medical ppl calls those) pulled out. I was on a hunt for answers and relief. I had brought names of medicines I had researched…anything. This is why I LOVE my doctor and am ecstatic that I’m back in his care. He sat there with me and heard my plea, he assured me he believed I was in pain, and he checked everything possible hoping that I had researched something new that he had not heard of yet.

Sadly that was not the case. There is no new magic pill out there for endo. Every medicine I had brought to him I was already on just in a different form. We went over what few options I have out there which are very little for someone my age still wanting to have kids. Let me just tell you if I had kids or even just ONE kid right now there is a solution to my problem and I’d do it no questions asked, but that is not the case or solution for me at the moment.

So basically my solution is to continue with medicines I’m already on and to medicate with pain medicines during these flare ups. Remembering the pain medicines do not make the pain go away all together, they just dull it.

Even though these last few weeks have been absolutely awful pain wise, I am still one of the lucky ones (in my eyes) when it comes to having endo. Mine laid dormant for a few years and I can count on one hand how many flare ups I have a year (thanks to medication my doctor has me on). Some women are not that lucky and because of these reasons when I do have a bout that is this difficult I don’t go running begging for surgery. I don’t want to do something that serious and costly when it only happens to me a few times a year. One reason I’ve never really talked or complained about endometriosis is because it is something that happens to me so little considering what others go through, but with this awful flare up I’m reminded how bad this disease is, how little information is out there about it, how stupid you feel for letting an ‘invisible’ disease affect your way of life.

March is national Endometriosis Awareness Month and you better believe I’ll be putting a voice out there come this March about this disease; this chronic illness. Even if it does only affect my life a few times a year, during those times it is awful and no one should have to go through it. Especially the unlucky ones who have it so much worse, I can’t even imagine.

So the next time I miss work because the pain is so bad I can barely move, the next time I can’t make a trip that I’ve planned, the next time I’m in bed at 5:00PM don’t be so quickly to judge. By no means do I want you to feel sorry for me, I just want you to understand. Also, understand that I am not a druggie, those drugs are just the only thing keeping me going at that given time.

That my friends is the low down on Endo. If you have any mind blowing news that me and my doctor have not heard of, please share. I’m up for anything at this point. Also, my doctor and I did discuss foods to eat/not eat that might help give some relief. So please do not post foods for me no to eat, which is basically everything…. In case there are sufferers of this disease reading and curious, no caffeine and soy are two that he has seen results from…all the others he said you just have to play with and see how it works with your body.

Through all my research on endo I’ve come across some things that make me laugh…enjoy! Also you should instagram search #endometriosis....if you have it you'll understand and love it. ha!

But really though......

 -Casey