I don’t have Endo, so what should I do to help??
With the estimated number of women with Endometriosis being somewhere around 1-in-10. Almost everyone either has Endo or knows someone who has it. So, What can you do?
Educate those around you
Education is the first step towards making changes. Maybe all you can do is educate one person, but that one person may take up our cross and advocate for us. Maybe that one person is your doctor,
but doctors know everything. Many doctors don’t know jack squat about Endo. Maybe you can take it upon yourself to educate your GP. Maybe you educate your family or your friends. Maybe you educate anyone willing to read your social media.
So you’ve stepped out of your comfort zone and educated those around you, what’s next? Get involved in a charity or in activism. For a list of national organizations by country, click here. Also, if you are a patient, you could get involved in a study such as, The Equinox Study or any listed on this site.. *ALWAYS discuss clinical trials with your doctor before participating.*
Protest. That isn’t a word most expect to be associated with a disease like Endo. Y’all Endo is prevalent in our society and yet women’s healthcare is so stigmatized. Break the stigma. Protest the lack of standards of care. Protest the lack of education in healthcare professionals. Protest the fact that more research goes into balding hair than a major debilitating disease. Protest the fact that women with Endo are silenced because their experiences are “all in their heads.” Protest these realities for you or your mother, or your sister, or your daughter, or your friend. Protest these for the community of women who live their lives in pain daily.
Don’t feel like you have the knowledge or the words? Repost information and articles on Facebook and Instagram. Share a post from a friend about the realities of this disease. Publicize your friends words so they can reach more people. Support them in their quest to change the world of Endo.
How to have fun on and around Halloween despite Endo!
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.
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.
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.
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!
My 2.5 week update after my Da Vinci hysterectomy and excision of Endo.
I am 2.5 weeks post-op today. I feel AMAZING!!! Dr. Furr went in and removed my uterus, fallopian tubes, and multiple adhesions and lesions due to Endometriosis. My left ovary was adhered to my side. I had lesions on my bladder, ureter, uterus, and pelvic wall. Pathology confirmed adenomyosis.
The first night in the hospital was the roughest. I really did not want to take dilaudid, but the percocet had me wired. Eventually I caved and took the dilaudid and actually got another dose before leaving Chattanooga for the 2 hour drive home. Throughout the first week, I had a whole lot of help. My parents had to help me get up and sit down. All my food had to be made by other people. I couldn’t even open the freezer to get ice for my water by myself. Thank goodness for my family and friends.
Week two was so much easier. I went to church and hung out with lots of friends. I might have pushed myself a little too far at times. I played with puppies one night. I did a lot of sitting down and standing up and sitting back down. By the end of the night I was starting to hurt. All throughout week two, I was off all pain medicines including over-the-counter stuff.
The beginning of week three was Friday. That night, I went to my boyfriend’s wrestling banquet at his high school. Saturday I went to Nashville and stood outside the Mercy Lounge for almost 3 hours to get tickets to see Panic! At the Disco later that night. I ended up being up on my feet for another almost 5 hours straight before and during the concert.
My restrictions really were not that rough. The first two weeks I wasn’t allowed to lift anything over 10lbs and week 3-6 I am on a 20lb restriction. I am not supposed to be bending down much at all. I was told to walk as much as I can as soon as I can. My ice pack was my best friend for the first week and a half when it came to walking. My dietary restrictions are non-existent as long as I am having normal bowel movements. The biggest thing Dr. Furr told me was to listen to my body. If it hurts, slow down. If I feel fine, keep it up.
I pray that anyone looking at having a hysterectomy who reads this understands that everyone’s body is different. I have had an extremely easy recovery compared to most. I have also been covered in prayer and am very young.
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
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
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.
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.
- 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.
- 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.
- Acne – Hormonal acne is common with Endo due to the Estrogen dominance that is associated with Endo.
- 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.
- 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.
- 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.
- 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.
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.
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!