Endo Friendly Halloween

How to have fun on and around Halloween despite Endo!

Costumes
If you are going to dress up for any events, make sure your costume is loose fitting around your stomach. Generally dresses or leggings are a good choice. Dresses means you can be a princess, gypsy, or a witch. Leggings and a solid color t-shirt can make you a skittle, M&M, or crayon. If its a red shirt, you can be Winnie the Pooh or Alvin from Alvin and the Chipmunks. This year I bought a huntress costume that is a tunic style shirt with leggings.

Movie Night
Horror movie marathon anyone? Stay in the comfort of your own home with all the classic Halloween movies! Pull out the apple cider, some caramel apples, popcorn, and maybe a piece or two of candy. Curl up in your most comfortable pajamas and a fuzzy blanket. Hand out candy to trick-or-treaters and lounge the night away.

Trick-or-Treat
If you have plans to Trick-or-Treat despite your Endo, having someone drive around with you may be beneficial. This way should you end up in pain, you can be driven back home to rest and recuperate. Also, you can eliminate a large majority of walking which could aggravate your pain. Another option is to check out a trunk-or-treat. These events tend to be a lot smaller and allow for more sitting and chilling rather than walking.

Farm Visit

If you plan on heading out to the pumpkin patch, find out whether there is a patch near you that gives tractor rides out to the patch and back in. Also, pick a smaller pumpkin so you don’t aggravate your Endo. Take the activities slow and listen to your body. If you are unsure about an activity, it is probably better to be safe rather than sorry. Also, be aware of how greasy the food is that you may be ingesting. It may be better to eat on your way there or way home.

These simple changes may make your Fall and Halloween much more enjoyable and pain-free!

Endo Awareness Month

It’s March y’all!! That means Endometriosis Awareness Month!

March is Endometriosis awareness month! On my Instagram, I am participating in #TheEndoPhotoChallenge2018. I am also going to participate on here by posting the photo challenge each day here! Enjoy!!

Day 1: You

 

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I am an 18 year-old senior! I was diagnosed with Endometriosis through laparoscopic excision at the Center for Endometriosis Care in Atlanta, GA. Within the last month, I’ve been told that I probably have Adeno as well.

Day 2: Endometriosis

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I had excision performed in December of 2012 for Stage I Endometriosis. The pictures above are from that procedure. I have struggled with pain, bloating, and other symptoms from the time I hit puberty. After my first surgery, I did pretty well up until about the last 2 years. They are pretty sure my pain is now coming from Adeno and thus, I am having a partial hysterectomy a week from today.

Adenomyosis

I’ve really struggled to write this post. This hits very close to home and is very personal for me, but I feel like other teenagers need to know they aren’t alone if they choose to go this route.

Some big changes are about to be taking place in my life. I was diagnosed with Adenomyosis this past week and was given my options. Only one option was guaranteed to help and that is a partial hysterectomy. Adenomyosis is similar to endometriosis as it is still a gynecological disease. The endothelial cells grow within the muscle tissue of the uterus causing sever cramping along the mid-line of the abdomen.

I have tried some different medical treatments such as progesterone, birth control, and birth control without sugar pills. I know that a Presacral neurectomy (PSN) is a potential surgical route. It could buy me anywhere from 6 months to a lifetime of relief from the pain. But, the PSN won’t control the severe bloating or nausea associated with my Adenomyosis. I could try the Mirena IUD, but it may take up to six months to work, and I do not feel like I have six months to wait and see. So given those options, I’ve chosen to go the route of a partial hysterectomy. Because Adenomyosis is within the uterus, that is the only organ they will remove.

At 18, the idea of a partial hysterectomy is terrifying. I’ve always dreamed of carrying my own children, but the reality is that won’t be an option after March 9th. I know I will still be a mother one day, but I am giving up the ability to bear my own children, an ability that I have been fighting for. I am ready to have my life back. I want to be able to live my life while in college rather than Adeno dictate what I can and can’t do. I am confident that I am making the right decision for my life, but it still hurts. The relief I will feel is going to make everything worth it.

If you are a young girl facing this decision, you are not alone. It can be hard to make such a permanent decision at a young age. Mourning your loss is okay. I made this decision on a Monday and cried so much at school Tuesday that I checked out after first hour. It will be hard to go to classes and know everyone’s biggest issue is going to the game that night and your issue is going to affect the rest of your life. I will make a post later describing how I evaluated this decision and decided it was right for me. We are all different and the right decision for my life and body may not be the decision you need to make.

It’s More Than a Bad Period

How do you know if you have Endo?

** Disclaimer: I am not a medical professional… This is all based on my research and personal experiences**

Even before you hit puberty, some signs and symptoms of Endometriosis may show up. *TMI warning* Growing up, I was never really regular with my bathroom habits. It wasn’t until after my laparoscopy in 2012 that I found out most people use the bathroom daily without constipation or diarrhea. Also, I firmly believe that genetics plays a major role in Endo. I am one of many people in my family to have this awful disease. My mother, cousin, great-aunt, and paternal grandmother all have had surgeries where Endo was discovered.

As you hit puberty, other signs and symptoms may appear. Every woman is different, and your symptoms may not match this list or any list you find.

  1. Major cramping – Advil, Midol, Ibuprofen, etc don’t touch the pain you feel. Some women with Endo take prescription pain pills to help alleviate the pain.
  2. Bloating – I normally wear size 6 jeans. When I am on my period, or bloated due to my period, I can’t wear a size 8. I end up living in sweats and leggings.
  3. Acne – Hormonal acne is common with Endo due to the Estrogen dominance that is associated with Endo.
  4. Sleeplessness – Pain keeps me up at night at times. I take Melatonin to help me sleep when I can’t seem to get comfortable. I also wear a bite guard so I don’t grind my teeth from pain.
  5. Irregular periods – A 28ish day cycle is seen as normal. I am honestly not sure I have ever had a 28 day cycle or anything that is semi regular.
  6. Bleeding – Extremely heavy bleeding that lasts longer than normal. Mine is b=generally 7-9 days and regular tampons may last me about 3 hours.
  7. Infertility – This is common in late stage Endo patients. I really have no personal experience with it as I am too young to begin to go down that road.

Don’t let any doctor tell you that you are too young or that it is all in your head. You know your body better than anyone else. Your pain and your symptoms are valid.

Health Update

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.

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

To keep with my theme of open letters, here is an open letter to my friends. to the ones I’ve canceled on, to the ones I’ve blown up on, to the ones who support, etc

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 a chronic illness. I am not your typical student.

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