Health Update

Sorry guys. I know it’s been a hot minute since I uploaded a blog post. A lot has gone down in the last week health wise. I honestly am beginning to feel really hopeless and crushed. I know that this isn’t the end but is only the beginning. God will provide.

So the Center for Endometriosis Care (CEC) reviewed my medical records and called me Thursday. Dr. Kongoasa asked me a lot about my symptoms and where my pain was located. At the end of all his questions, he concluded that my pain is most likely due to Adenomyosis. It is one thing to know that you may have a disease like Adeno, but it is a totally different thing to have a specialist tell you they believe that is the root cause of your pain. It is a major emotional blow. I spent quite a bit of Thursday in tears and am honestly still trying to process everything. I also found out that I can’t afford to have surgery at the CEC this time.

So what is Adenomyosis?

Adeno is a disease in which Endometriotic tissue is found within the uterine wall. The symptoms include abnormally heavy or prolonged menstrual flow, and/or severe localized cramps near the uterus. This seems to be linked to Endo and there is a subset of women who suffer from both diseases. Adeno is commonly thought to only affect women over 30 who have already given birth. This is so not the case. Due to the fact that Adeno can only be diagnosed through a full pathology report on the Uterus, most women don’t get officially diagnosed until they are in their 30s and done having children. Both Endo and Adeno can affect women of any age. I am living proof of that.

Suggested surgical treatments

(Disclaimer: These are what my OBGYN suggested for me. Everyone is different and you need to talk with your own doctor rather than assume because it was suggested to me, it is the best course for you)

Dr. Kongoasa gave me a few treatment options. He said I could have a Mirena IUD implanted, a Presacral Neurectomy (PSN) performed, or a partial hysterectomy. I am way too young to begin even thinking about a partial hyst. I am honestly not very comfortable with an IUD as they are relatively new to the treatment of Adeno. My mother had a PSN before I was born. I am pretty comfortable following this treatment path.

Presacral Neurectomy (PSN)

A PSN is a procedure where the surgeon goes in (preferably laparoscopically) to remove or interrupt the nerve pathways that innervate the uterus. In 75% of patients, this procedure is very successful for many years. It does have some side effects in 5-10% of patients. These nerves can also innervate the bowels and bladder which may lead to constipation or a sense of urgency. This will not affect a woman’s fertility, but it may cause a painless labor.

An Open Letter to My Friends

In continuing with my open letter theme, here is an open letter to my friends:

To the friends I’ve had to cancel plans on, I’m so sorry. I try my best to follow through on the plans I make, but sometimes I just can’t. I really want to be there for you and support you. There are just some days when my pain levels are too high for me to function, or I am way to nauseous to think about leaving my house. I wish I could be a reliable and dependable friend. I try to do what I can.

To the friends I have gotten frustrated with and blown up on over a seemingly simple thing, please forgive me. I never mean to blow up like that. Sometimes the pain medicine really messes with my brain, and I still hurt even with those medicines in me. All of this can quickly become too much for me to handle calmly once frustration is thrown in the mix. I don’t always have a good grasp on my emotions and for that I am sorry, and I just ask for grace and understanding.

To the friends who’s texts and calls I’ve missed or ignored, I’m sorry. I try to avoid texting or calling many people when I am doped up. I don’t always have a filter between my brain and my mouth. Also, my thoughts get all jumbled, and I can’t figure out how to make my point make sense. I get really frustrated with myself when that happens. It’s like I don’t have control over my own mouth.

To the friends who have stood by me through all I’ve been through and will continue to stand by me for what is yet to come, thank you!! I know I don’t say it nearly enough, but the support from you means the world to me. Thank you for being the ear for me to vent to and the shoulder for me to cry on. Thank you for your understanding and compassion. I don’t know what I would do without you!

Sincerely,

-ThrivingWithEndo

An Open Letter to My Teachers

To all my teachers, I have chronic illness. I am not your typical student. My illness is invisible. You cant truly see my sickness, but it is there. I promise you; it is there. My endometrium tissue (the lining of the uterus which builds up and sheds monthly during menstruation) grows outside my uterus. It causes lesions and adhesions. This can cause copious amounts of pain and render me helpless. I can’t always make it to school. I’m absent often, and when I am at school, I am often doped up on my pain pills so that I can function. I am often easily frustrated, as I am in lots of pain most of the time.

To the teachers who’s homework I turned in late, I know my homework isn’t always done on time. Some days all I can do is make it through the school day. I get home and take my medicine and end up either asleep or throwing up. I promise I am smart. I just struggle to fully apply myself with all my health stuff going on.

To the teachers whose classes I always seem to be absent from, I wish I wasn’t absent so often. I have many doctors appointments, and there are days I literally can’t get out of bed, much less walk. I have to miss school for surgeries as well. I really hate being absent so much. Sometimes the makeup work overwhelms me.

To the teachers whose class I sleep through, I’m sorry. Between my pain and nausea medicine, I sometimes struggle to keep my eyes open. Sometimes I’ve been up the previous night in pain and throwing up. Sometimes it takes Advil PM to make me sleep and even then, I end up waking up in the middle of the night. Please be patient and lenient with me.

To all the teachers who have said, “It’s not an excuse, every girl has a period,” you have no idea the struggle I live through daily! When your uterus decides to turn inside out, come talk to me. You don’t know the first thing about my life. Until you have walked in my doctor’s shoes, you don’t get the right to decide my doctor is wrong. You have to respect my doctor’s notes and orders.

To all the teachers who have supported me and prayed for me, thank you! Y’all mean so much to me. I am so thankful for your support. I seriously don’t say it enough, thank you!

I say all this not as an excuse; this is my plea for understanding and patience. I wish I were a typical student, but this is my life. This is the hand that has been dealt to me. I trust that God has a plan and will guide me through this stormy gale. I only ask for grace and patience from you this year.

– ThrivingWithEndo

4 Tips for Surviving Bloating and School

All my EndoSisters know exactly what bloating looks and feels like. Some of us have probably been asked if we are pregnant or how far along we are. I always feel like screaming in response “I AM NOT PREGNANT!! I AM 18 YEARS OLD AND STILL IN HIGH SCHOOL! AND ANYWAYS WHO GIVES YOU THE RIGHT TO ASK ABOUT MY PERSONAL LIFE?!?!”

So here are my top 4 quick tips for surviving school while bloated.

1. Comfy pants!! Being comfortable in loose-fitting pants is my #1 tip! I go to a private school with a fairly strict dress code: collared shirt Monday-Thursday, T-shirts are allowed on Fridays. Pants have to be either jeans, khakis, or the girls can wear skirts. After explaining my situation to the principal, I was given approval to wear sweatpants when I am extremely bloated!

My wonderful bloating survival pants

2. ThermaCare Menstrual relief patches! These can be a little pricey, but on days I go straight from school to my part-time job as a hostess, they are my only hope of survival. You just open the pack and press the sticky part onto your underwear and that’s that.

 

Freaking next best thing to an actual heating pad

 

3. Diuretics! Midol or any other OTC medicine with a diuretic can be your best friend as long as you are okay with peeing constantly. In order to take a diuretic, you’ve gotta drink lots of water or else you run the risk of dehydration.

Lots and lots of H2O

 

4. Essential oils! I swear by my essential oils for everything! Peppermint is great for nausea. Lavender is super relaxing and Eucalyptus can be used for anything you would normally use Vick’s Vapor Rub for! Find out what combination works best for you and then let me know!!

Drop a comment with other tips you have! Feel free to share!

Why a blog?

Hey yall!!

I started this blog as a way to reach other girls and women battling Endo just like me. We are plagued by an invisible illness and most people don’t see our pain. I wanted an outlet to share my tips and tricks for surviving middle and high school with Endo. I hope that some young teens struggling with Endo find my blog and it helps them survive the already tough high school years. I am going to try to at least write one blog a week!

For my full story, click on the story link. Here is a quick detail-free version: I was “unofficially” diagnosed at 12 years old. Doctors wouldn’t do surgery to officially diagnose me until I was 13 and had had my period for a full year. I had excision done December of 2012; I was 13 years old. Dr. Albee at the Center for Endometriosis Care in Atlanta, Georgia, confirmed that I did have stage one Endo. Since then I have used essential oils, diet, hormone therapy, and pain medicine to make it to where I am now.

Thank yall for reading!!