Thursday, May 28, 2015

Endo... Wait, What?

You know that feeling of satisfaction that you get when you've finally really figured something out? I was so sure that I had that after my surgery. I was sure that I knew how I could keep my endometriosis in check, at least for a little while. I had done extensive research and connected with many other women with endometriosis; I had acquired quite a lot of knowledge on the subject. But yesterday, my satisfactory state of mind was altered.

I had an appointment with my surgeon and gynaecologist to check up on how thing's were going post-surgery and because I had been having some issues with a bladder infection and some inflammation. We discussed my current state and decided to go ahead with an ultrasound and wait for the cultures from the urine sample. Totally normal appointment stuff. Then, when we go to talk a little about the surgery, my doctor takes a deep breath and says, "Well..... You don't have Endometriosis."

... Um. WHAT?!

"I don't have Endometriosis?"

"Nope, you don't. You have a rare disease called Endosalpingiosis."



Again, "What?!!!"

So, that was my day yesterday.

Can you image, having a diagnosis for the last 6 years and having more than one surgery confirming that diagnosis and then all of the sudden, you don't have it anymore. You have something else and no one knew, not even your surgeon, until now.

How does that happen, is what you're probably wondering. Just like I was wondering when I heard the news. Well, I'm going to try my best to explain how exactly this happens. Unfortunately, there will probably be gaps in my explanation due to the rarity of this disease and the lack of definite research and information on Endosalpingiosis.

I was told at the age of 16 that is was likely that I had a disease called Endometriosis. Endometriosis is the deposit of uterine lining on other organs usually in the abdomen. These deposits bleed and often grow, causing lesions and built up scar tissue over time. Because of the severity of my pain, I was given a surgery to diagnose the condition and to cauterize (burn off) the unwanted deposits. 

Along with a continual birth control to regulate hormones, I was mostly pain-free for about two years. Over the last two years or so, the pain has been coming back swinging. So much so that after a lot of tests and procedures coming back negative, another surgery was in order. That surgery happened just 28 days ago. This time, instead of the deposits of what I was told were endometriosis, being burned off -- they were excised (taken out of my body) and tested with a biopsy.

It turns out that the biopsy showed that what we had figured was Endometriosis was in fact not at all Endometriosis but it was Endosalpingiosis. Endosalpingiosis is similar to Endometriosis and very likely goes undetected because only a biopsy can differentiate the two diseases.

Endosalpingiosis is rare because instead of being made of uterine lining, it is made up of Fallopian Tube. Weird, right? These pieces of fallopian tube develop cyst-like deposits along the organs in the abdomen, but when biopsied they are considered to be benign tumor-like uterine cysts. In my case, benign (thank the Lord) uterine tumor-like cysts made of fallopian tube along with benign urinary bladder tumor-like cysts made of fallopian tube. Also known as ENDOSALPINGIOSIS or Florid cystic endosalpingiosis.

There is a huge lack of research on the Endosalpingiosis front. I've read all night and all day today so far, and that was about all I could find. The only thing I do know is that like Endometriosis, Endosalpingiosis is still affected by high levels of Estrogren causing these benign cystic tumor-like deposits of fallopian tube to grow and multiply. Also, in some cases these tumor-like deposits can carry carcinomas (a cancer arising in the epithelial tissue of the skin or the lining of the internal organs). Thankfully, the biopsy showed that my Endosalpingiosis is neither cancerous nor pre-cancerous. I also know that it is very likely that it will begin to grow again in the next year or so. I'm hoping that with continual birth control for hormone regulation and persistent check-ups when I have pain, I will be able to monitor this strange condition.

The biggest reason I am writing this very detailed blog post is because I had been wrongly diagnosed for six years of my life, even after two surgeries. If you have Endometriosis or if you suspect you may have Endometriosis and you need to have a Diagnosic Laproscopy preformed, I want to encourage you to find a surgeon that will use the Excision method rather than just Cauterization. Endosalpingiosis can only truly be diagnosed when excision is used and a biopsy is done on the tissue. No one should have to be wrongly diagnosed. We should have the right to know exactly what goes on in our bodies, especially if they are not functioning as they should be.

If you have any information or experience with Endosalpingiosis I would love to hear from you. Feel free to contact me by commenting on this blog and I will get back to you.

Tuesday, May 26, 2015

I Hate Antiobiotcs

Here I am, 26 days post-surgery, calling in sick to work because I need to see a doctor. Lovely, isn't it? You have surgery for one thing and because of that surgery you acquire a whole new issue. In my case, a severe Urinary Tract Infection/Bladder Infection.

UTIs really suck. You feel the constant need to pee and even if you get up to pee every time you feel like you need to, half of the time, nothing will come out. It's pure evil. Also if it's bad enough theres pain deep in your bladder that makes you want to wince and cry a little. And let me tell you, if you have a choice in the matter, never take Macrobid for a UTI. OH MY GOSH, I had the worst experience on that antibiotic. It made me dizzy and lightheaded to the point where I couldn't even stand up when it hit me, I felt like the room was spinning. I made me very nauseous and caused even more pain because of these symptoms. Never go there, just don't do it.

The thing is, I know that as someone living with Chronic Illness a lot of people that are close to be view me as a hypochondriac. Which is one of the rudest things someone could ever think of me in my opinion. Not a lot of people think this, but typically my parents seem to. And, I get where they're coming from in a sense with the fact that they had a child who turned out to be quite the medical mystery, is always acquiring strange illnesses and experiencing weird symptoms that don't fully make sense and never strictly match typical symptoms. I'm a hard one to figure out. I'm the kind of person that likes to be in control of what's happening to me. If I know there's a surprise of some sort, I hate waiting, I am overthinking and guessing about it constantly. I have social anxiety and just general anxiety when I know that I will not be in control of a situation. So, with my body, I get very anxious and stressed when I feel an unusual symptom or when something feels wrong. I used to pass over these feelings and try to ignore them so I wouldn't have to go out of my way to see the doctor or go to the hospital, or whatever else I may need to do to an answer. But I have learned that pain is a sign that something is wrong. I was right about Endometriosis, I was right about Fibromyalgia, I was right about Anemia, etc. As an anxious person, I like to research. Research comforts me rather than scares me surprisingly. I like to know all the possible answers and I like to rule whatever out that I can.

I know that I am by no means a doctor, and I never have desired to be one either, but I do my research because this is the only body I've got and it's got a track record of screwing me over! That's why after last night, I've called in sick and am heading to the doctor. A lot of people do not know that if you leave a UTI untreated for long enough it will likely spread to your kidneys. If you leave a kidney infection untreated, it will likely be so strong that you will need IV antibiotics to overcome it, and if you do not catch it in time, it can horrifyingly poison your blood and become fatal. Which, is just horrible and terrifying. (Side bar: SO PLEASE, if you have of the symptoms of a UTI -- I will list them below -- see your doctor immediately! It is not something to wait out, get your pills.  Fix it!!) THIS -- the possibility is why I get nervous, I do not suspect at all that my blood is being poisoned. I do suspect the possibility of the infection making it's way to my kidneys. It's been three weeks so far of UTI related pain, I was just started on antibiotics 5 days ago and the pain has only gotten more severe and caused me to develop flu-like symptoms as well. Which is why I am going to the doctor.

The human body is so intricate and amazing but also really intense and scary. Some people can't stand to think about all the things that could go wrong, but it fascinates me. So, off I'll go to the doctor -- probably to pee in a cup and have blood taken and do all those other fun things. Thank you for all of those who have been continually supporting me and reading my blog. It means the world to me! Wish me luck! xo

Symptoms of UTIs
To identify an UTI, keep an eye out for the following symptoms:
  • A burning feeling when you urinate
  • A frequent or intense urge to urinate, even though little comes out when you do
  • Pain or pressure in your back or lower abdomen
  • Cloudy, dark, bloody, or strange-smelling urine
  • Feeling tired or shaky
  • Fever or chills (a sign the infection may have reached your kidney)

Tuesday, May 19, 2015

Today's A Good Day

Today was a very exciting day for me. It started out like any other day post-surgery. Slept in a little, got up, had a coffee.. then I thought of my yoga mat that I've barely used since October. I went to my room and grabbed my mat, my hand weights and my laptop that's filled with a whole file full of exercises I've been meaning to try out. So, I got to work. Jumping jacks, oblique crunches, Russian twists, side planks, regular planks, burpees, mountains climbers. Let me tell you, I just went to TOWN!!!! Not literally of course. But I did finish off with a nice long walk with my dog. And.. I felt amazing. I haven't been able to work out with experiencing endometriosis pain in over a year but today I was free of that pain! I was astounding and smiling from ear to ear after realizing that I had made it. 

Now, I am currently at the doctors office for some tests and check ups. But I couldn't stop myself from writing this quick update! So happy and grateful to my amazing doctor and surgeon today. 

Sunday, May 17, 2015

Progress Report

"The first step to getting anywhere is deciding you're not willing to stay where you are."

First of all, I'd like to offer a quick apology. Since my excision surgery I haven't written a post and at first it was because of post-surgery madness but it soon became about the fact that you always hope for the best and when things don't go exactly as you had hoped, it can be a little hard to face. So I'm sorry for not facing the emotional happenings after surgery and refusing to write a post. But I'm here now, ready to write.

Overall, my excision surgery went well with no complications. I ended up getting three incisions, all fairly small, and they healed up well and quite quickly. The first few days I was a pretty groggy mess but the pain wasn't too bad. Slowly, we came to learn that I developed a bladder infection from catheterization; which has led to a painful couple of weeks. I had hoped that after surgery the only pain I would feel would be the recovery pain, but unfortunately I have felt quite a bit of the pain that I associate with being caused by endometriosis. Which has been discouraging. I know that sometimes, it takes a few solid weeks to see how much the surgery has helped and will affect my day-to-day life, but a good outcome is always what I hope for.

Another thing that was a little frustrating post-surgery was the fact that endometriosis was found covering most of my uterus (front and back - causing pelvic, lower back, hip and sciatic pain) and covering much of my bladder (causing frequent urination, achey lower pelvic pains, etc.) but the endometriosis was not found where we expected to find it (bowels). I have been having a lot of digestive issues and problems with what we thought was my gastrointestinal system. After a colonoscopy and endoscopy we were able to rule out chrones, ulcers and polyps. Which led us onto the track of endmetriosis being the source of the problem; but that doesn't seem to be it either. Now, we're needing to look to keeping my GERD (gastroesophageal reflux disease) in check with new medications and controlling symptoms that may be caused by IBS (irritable bowel syndrome). Trial and error.

So, as you can see, I have been slightly discouraged after surgery. But I remain hopeful that my quality of life will be better than it was pre-surgery. Progress is progress, no matter how small and I'm making progress, even if it is hard for me to see it right away. Small progress is better than none and for that I am grateful.

Thanks for the support! xo