I Knew I Was Sick

All my life I've been sick. Somehow, some way.

I'm now 23, with a loving boyfriend, in a very small town in Pennsylvania. My whole life I've been told that I have autoimmune diseases. Including; IBS Constipation, IC Interstitial cystitis, Endometriosis. As examples. All three of those seem to enjoy playing together in the bodies playground. Fibro is usually one that shows up later in the party.

Most of my life I've known there was a problem, I knew I wasn't faking being sick. Yet no one could find an answer. No one would listen to me about my problems. Before finding out about IBS doctors looked at me and my mother with doubt. Telling us I was "Too young to be having these problems" that this was "Attention seeking" by both my mother and myself. After years of struggling with undiagnosed IBS, being ignored, being told it wasn't likely a real issue. Finally when I was 20, studying Education at Clarion University, we found a doctor who would listen. Young doctor. Recently out of medical school. Before I knew it there were three doctors in the room talking to me about my problems. TMI but they include; Severe constipation, rectal bleeding, bleeding with stool, and without, severe stomach pains, and lactose intolerance. My doctor sent me across the street to the hospital, to have a check to see what was going on to the best of their ability, later I was sent downstairs to another doctor who would be the one who diagnosed me with IBS Constipation. He finally gave me something to go on, finally something that proved I wasn't totally crazy when I'd make trips to the hospital.

After years I was finally given an answer. Not great news, but it was something!

Few years passed and my world began to be turned upside down. I went in for an annual pap. After the full on madness of that alone I got a gut dropping phone call.. It came back abnormal. High grade squamous intraepithelial lesion. I began to panic, I'm 22 years old at this time. Clueless what to do, I just started my current relationship, I just started getting involved in a steady job outside of babysitting for friends, and little jobs that I had in high school. I was told a biopsy was needed, and that we'd just wait and see before jumping to medications. So I did just that. Found a semi local doctor that would do the biopsy. Sitting in that chair was the scariest moment that I had dealt with at that time. I won't go into to much detail but it hurt. When the biopsy came back I was back at square one. I got the usual "well, we don't know." "There's something there, but we just can't know for sure what it is." We did however talk about the one thing that I thought I'd never have to discuss with anyone. Pain during sex. Anytime I have any form of penetrative activity it hurts. Bad. Almost to the point where tears flow. I've always believed it was just me, I was just a wimp, it was normal.

Turns out I was wrong, very wrong in fact. I was diagnosed with IC. A bladder condition that effects how often one has to go, and can effect ones sex life. There's no cure, no real reason IC develops, it can cause many issue, many of which I don't have but I'm no expert by far. I just did what I was told. Take these pills called Elmiron. Okay, seemed like the doctor knew what he was talking about. He's a doctor. He seems to know his stuff, maybe this would help? Well, it did. sorta. I later requested that we do more tests to see if IC was really one of my problems. Why take pills for something that isn't what's making me sick? I hate pills so why take them if this is something else, or that I'm just weird? Still convinced that I'm just a wimp, that I'm just crazy, the pain is in my head. I saw a urologist. He explained a procedure called Cystoscopy with Hydrodistention. There's only a 20% chance anything would be found, but I was willing to take that. I needed to know. I needed to find out what was really going on.

As I assumed, nothing was found. Now this doesn't mean I don't have IC. It just means there's not as much damage to my bladder as there is for some people. So I continued to take the medication as they requested. Over this period I've been noticing random and strange bruising all over my body. My mother is actually the one who brought it to my attention. I'm a klutz, and hang out with small children, a very hyper active puppy dog, and my job. I constantly get scratches, bruising, bleeding issues, so I just always thought it was from my lifestyle. Turns out, I was very wrong. We called my doctor just to see his thought on everything. He decided it was time to really look into what's going on. What's causing these issues. He did a test in office and noticed there was bleeding somewhere. He said there wasn't much, but the fact that there was some there needed to be more checked. He sent me down to see a blood doctor, who also was a cancer specialist.

Meeting with this new doctor I had high hopes, but saying I wasn't scared would be a huge understatement. I was shaking in my boots!

After a million and one different types of blood tests, we discovered yes there was some internal bleeding but no one could figure out from where, and that whatever this was it wasn't a blood disorder like originally thought. Meeting with him and talking with him I felt someone actually believes me! Someone actually understands I'm not crazy! It was amazing! After meeting with him multiple times to rule out different blood disorders, and visible problems. With nothing visible he sent me to a Cancer Genetic Councilor.

We got scared. Not going to lie. If any doctor sends you to Pittsburgh (PA) you get scared. Meeting with the councilor was simple. She reviewed a family history chart that explained where any possible cancers could have come from. She mentioned something called Lynch. A genetic mutation. There are many people with Lynch. It makes you prone to more types of cancers, including; Colon, Stomach, Ovarian, and a few others. The test takes 2 to 3 weeks to come back, and results can change because science changes.

We care currently waiting on my results. We are waiting to find out what is wrong with me. We may never know, but at least now we have some type of idea. If it is lynch then it would explain just about everything I've been dealing with. I could actually have cancers and with no one knowing where to look or how to even look.

More will be updated at a later date.

Just know, you're not alone. You're never alone in this type of battle.

With Love ~~~