ACOG and the Fight to be Heard

For years women have complained about the ACOG,
American College of Obstetricians and Gynecologists. ACOG has shown that they do not care about endo patients. Their literature doesn’t stay consistent from article to article. The ACOG is sponsored by pharmaceutical companies according to their industry sponsor web page. The reason this is such a big deal is because their standards of care rank medicine above surgery. Logically if pharmaceutical companies are paying their bills, they need to put money back in the companies’ pockets. ACOG’s literature claims that a hysterectomy should be considered as a last resort treatment for endo. Now this is totally preposterous because endo occurs outside of the uterus. Removing an organ that isn’t the cause of the problem makes no sense. Now, if you are suffering from adenomyosis, a hysterectomy makes perfect sense because adeno occurs within the muscle tissue of the uterus.

In adolescents, ACOG recommends diagnostic surgery with a 6 month following of a GnRH prescription such as Lupron. Lupron has been shown to have horrendous side affects for women of all ages. They also admit that endo is the number one cause of secondary dysmenhorrhea in adolescents. Because the ACOG does not deem excision surgery the best treatment path, many insurance companies do not deem it medically necessary so they don’t cover it. This can put women in tens of thousands of dollars in debt on top of the pain and emotional roller coaster they have been on.

ACOG needs to step up and do right by the millions of us EndoSisters across the nation. We rely on them to make medical decisions that benefit the rest of us!

Change the World

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.

Get Involved

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

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.

Repost

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.

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!

What not to say to a someone post hysterectomy

*NEWSFLASH* WORDS HURT!! 

Last post I wrote was all about the emotions I have felt as a result of my hysterectomy. Some people don’t think about how their words may hurt someone else. Here is a list of things not to say to someone after their hysterectomy.

Well, you can always adopt.

Adoption is extremely expensive and emotional journey. It may not be the right choice for everyone. Also, they probably don’t want the reminder that they can’t carry their own children.

You can still have your own kids. Surrogacy is an option.

My only reaction to this comment is “are you gonna foot that bill?” Surrogacy is more expensive than adoption and is really not an option for me. Please don’t try and argue me into having biological children through surrogacy. The even worse version of this one is when people offer to be your surrogate.

You’re so lucky that you don’t have a period anymore.

Excuse me? I am lucky that my periods were so bad and that I was in so much pain that I had to have a hysterectomy? I am lucky to never get to carry and/or bear my own children? This one is just wrong on so many different levels.

Maybe you can have a uterine transplant.

A uterine transplant would require yet another surgery. It would require lots of healing time and may be totally unsuccessful. I don’t want to risk that. I don’t want to get my hopes up for nothing. Please respect that. Please don’t try and argue me into this.

 

The Emotional Effects of my Hysterectomy

If you’ve been following my journey, you know that 5 months ago I had a hysterectomy. I lost everything except my ovaries. This surgery has provided endless amounts of pain relief from Endo and Adeno, but as with any surgery, there are other effects as well. I wouldn’t change the relief I have received for anything, but I do wish I could still carry my own children.

I knew losing my uterus would be emotional, but I wasn’t prepared for the little things that would hit me. I knew that being around little ones would be rough. I also knew that being around pregnant people would be rough, but I was so unprepared for some other things. I never thought that a pregnancy test could make me cry. Last week I was walking through Walgreen’s and saw a pregnancy test and I just lost it. I realized I would never need one. I would never get to surprise my future husband with a positive pregnancy test.

Walking through Target or Walmart and seeing baby clothes is enough to make me tear up sometimes. I start thinking about all the things I won’t get to do. I’ll never get to be the pregnant lady walking through the baby section picking out clothes and being asked when I am due. It makes my heart ache sometimes.

The emotions post-hysterectomy in my case are weird. Sometimes something hits me and I breakdown. Other times, I am totally fine with the exact same situation. It is a healing and grieving process. I am learning to be easy and gentle with myself. I can’t be hard on myself for grieving my loss. I have had to learn to extract myself from some situations to protect my heart. If people want to talk about getting pregnant and having kids, I may need to walk away for my own sake. Walking away isn’t due to weakness, it is protecting my heart and my relationships with others.

Things that people say can also cause upset. I know little ones don’t know any better, but man sometimes their words cut deep. Back before the summer session at the gym I was coaching at ended, I had a four-year-old ask me if I was a mom. Talk about hitting a nerve. I kept it all together and told her no and laughed it off in the moment, but it was really hard. I have kids who call me mom, and it is just enough of a reminder that I can’t carry my own kids to get under my skin.

Overall, the most important thing you can do for your emotional health post-hysterectomy is accept it. Don’t try to bottle up all your feelings and act like you are fine. It is okay to cry. It is okay to be angry at your situation. Writing here and in a prayer journal have both been very helpful for me. I have found a support system of people who I can talk to. People who understand that this isn’t something you get over in two days, weeks, or months. The raw emotions and pain will last for a long time and that is okay.

My surgery and scars are just a part of my story. Right now the emotions may feel overwhelming, but that is okay. They won’t always be overwhelming. Time heals all wounds, these included.

Post-op Appointment

Thursday I went back to Dr. Furr’s office for my 6 week post-op check up. I feel amazing and according to him my incision looks great so I am good to go. I am back at the gym coaching and spotting. I am going to go back to working out this week, and I finish high school on 10th and graduate the 18th! Hallelujah!!

Having a hysterectomy at such a young age has changed the way I see the world. I no longer worry about carrying pain medicines with me all the time. I can eat whatever I want now. I can be a teenager again. There is a small chance that I will deal with Endo again in a few years but we are very optimistic that I can close this chapter in my life.

I am so thankful for all my friends and family that have stood beside me during these last 6 years dealing with this pain. I hope to continue to be informative and helpful to other teenagers going through this in their life.

How I came to have a hysterectomy

I am aware that I am extremely young to go ahead with a partial hysterectomy, but I know I am making the right decision for myself. How do I know that? I was ready to pursue a surgical treatment because I was miserable even on my medicines. I was given a few medical options I could try, but I wasn’t very comfortable with them. The Mirena IUD has issues. Your body may try to reject it for up to 6 months. I could play around with different birth controls, but those would take a while to level out. I had been offered Aromatase Inhibitors, but at the CEC they told me that they don’t really prescribe those.

So I looked at my surgical options. I could pursue a Presacral Nuerectomy (PSN) or a hysterectomy. A PSN is a procedure where they cut the nerve that innervates the uterus. It may provide temporary or permanent relief depending on the woman. A PSN may cause incontinence and other issues. I decided not to go forward with a PSN because should it not work, I would be going forward with the hysterectomy anyway. I was trying to prevent multiple surgeries.

I knew that I was supposed to have a hysterectomy because I was driving home and asking God what to do. A hysterectomy kept coming into my mind. I kept praying, “Lord I don’t want a hysterectomy. What am I supposed to do?” Again, hysterectomy popped into my mind. I know the Lord has great plans for me and this is part if his plan. He has made that clear to me.