LIVING WITH ENDOMETRIOSIS

Initially I wasn’t sure I wanted to share this, I felt it might be too personal and my normal content concerns fashion and beauty. However, I was reminded that others can benefit from my experience, which is why I started this blog, I want to help others and make their life easier. I want to preface this blog post by stating that I am not a medical professional and am only sharing my experience. If you have questions, I am more than happy to answer but if you have serious concerns you need to contact your doctor.

I shared a little bit of my experience on my stories on Instagram, but I will be doing a deep dive and answering all of the questions I received in this post.

WHAT IS ENDOMETRIOSIS?
Endometriosis is a common disorder where tissue grows on the outside of the uterus instead or as well as on the inside of the uterus. Like the tissue inside the uterus, it builds up and breaks down each month but unlike a normal period this tissue has nowhere to exit so it becomes trapped in the lower abdomen. The trapped tissue causes organs to stick together, becomes inflamed scar tissue and adhesions, and can sometimes cause cysts to form. It’s incredibly painful and can even cause infertility if it’s not dealt with.
Source: https://www.mayoclinic.org/

MY DIAGNOSIS / EXPERIENCE
I got my period for the first time when I was 13. Unfortunately, we were on vacation at the time and I spent most of the time in the bathroom because the cramps were so bad. As the years went on my cramps and bleeding got worse, to the point where I passed out in the shower. My mom found me, and we immediately went to the hospital. After being checked in, the ER staff didn’t even examine me and chalked up my visit to me not being used to cramps. They sent me home with a high dose of ibuprofen and a pamphlet on how to handle cramps. My mom knew I wasn’t faking and there were times when I would be sent home from school because I was getting sick from the pain.

At this point I was only 15 so I had never visited an OBGYN, my mom made an appointment and after our visit the doctor scheduled an ultrasound to see what could be causing this pain. After the ultrasound, we discovered I had a cyst that ruptured and there were dark areas that looked like fluid in my abdomen. It is very difficult/impossible to diagnose endometriosis without surgery. Due to the cyst and the results of the ultrasound, my doctor recommended surgery.

First Surgery – I had my first laparoscopic surgery at 16, it was confirmed that I had endometriosis. The doctor cleaned up my lower abdomen and lasered out all of adhesions. My course of treatment following surgery was birth control, this made my periods much less heavy. Reducing the amount of tissue being formed reduced the amount of endometrial tissue implantation. This surgery drastically reduced my pain and the cramping during my periods became manageable with Tylenol and Ibuprofen.

Second Surgery – I had my second laparoscopic surgery at 20. Just four years later I started having pain all the time, not only during periods. It got to the point where I couldn’t eat dairy products (or any inflammatory) because the trapped tissue in my abdomen would flare up and become painful. Following this surgery my pain became manageable again, I could eat diary again (aka ice-cream), and I continued to take my prescribed birth control.

Third Surgery – My most recent surgery was a few weeks ago (at 26). Before this surgery, I was experiencing pain all month long again. It was beginning to affect my daily life. I scheduled an appointment with my OBGYN and we discussed my options. I now have a new doctor because of my move to Chicago a few years ago (I will leave more about finding a new doctor later in the post) and he wanted to try a new approach. Clearly the birth control hasn’t been working on reducing the deposit of endometrial tissue, we scheduled my third surgery and implantation of an IUD. The IUD usually puts a stop to most women’s period, halting the growth of any tissue. The Endometriosis keeps returning so he decided to excavate the tissue instead of cauterizing it with a laser as done previously. He discovered that my organs had been stuck to my left side with the sticky deposited tissue and found spots all over the outside of my uterus. All of the endometrial tissue was removed and my doctor said everything looks fully functional and healthy, meaning that when the time comes, I should be able to have children with no problems.

RECOVERY
My laparoscopic surgeries were outpatient procedures, I spent the day in the hospital until I was ready to go home for the night. I was able to recover in about 3 days after my first two surgeries, there was great discomfort and I couldn’t move around easily but after a few days I could walk/drive and go to school. My latest surgery was another story, because the tissue was cut out instead of burnt off in my previous surgeries, my pain was higher, and I have been slow to get back to walking and moving around. This time, it took about 5 days to walk normally and for the pain to almost fully subside. In all circumstances, exercising and lifting weight over 10lbs is not allowed for 2-4 weeks, it hurts to do it anyways, so you won’t want to. One of the worst parts of surgery is the gas pain. If you haven’t experienced this it sounds crazy, but you can feel pressure in your shoulders and all through your abdomen, on top of the pain left from the surgery. Surgeons must inflate your body with gas in order to see your organs more clearly and it takes several days to dissipate. If you are having surgery, I highly recommend Charco Tabs to reduce the bloat and gas. Two weeks following the surgery, I had a post-op appointment clearing me for baths, exercise, and normal activity as tolerated.

OVERALL THOUGHTS & ADVICE
Throughout this whole process and as I’ve gotten older, I have really learned how my body operates. When something doesn’t feel right with my body, I know. Each time I have the feeling that something is off, I contact my doctor and sometimes it’s honestly so embarrassing to admit the problems I’m experiencing when it comes to my period, my sex life, you name it… But if you get out of your head and open up to your doctor, you can find a solution that works best for you and your health. For me, surgery was the best option, it almost completely took the pain away and it has also allowed me to protect my fertility. I don’t plan on having kids for another 4ish years, but when the time comes, I want to give myself the best chance at having a healthy baby. The surgery was minimally invasive and I am grateful it was an option for me. If you are experiencing any issues, especially if they are debilitating, ask your doctor what can be done. You may be surprised by the results!

CHOOSING A NEW DOCTOR
It’s always important to find a good doctor, but because of my history I knew I needed someone who had experience in dealing with tumors, cysts, endometriosis, etc. When I moved to Chicago, I didn’t know anyone, so I was on my own when it came to finding a good doctor. Surprisingly, I found my current doctor on Yelp and prayed he accepted my insurance plan. I went through hundreds of reviews on Google and Yelp to try to find the best option for my healthcare provider. The reviews I found for my doctor were glowing and based on what other women wrote, he had dealt with issues comparable to mine. I called the office to check if my insurance was accepted and made an appointment. Below is the full list of things I look for when finding a new doctor.

Ideal Doctor Check List:
+ Good Bedside Manner – Must be willing to listen to my concerns and kindly answer questions (Basically just be polite and don’t treat me like I’m an idiot because I didn’t go to medical school)
+ Have My Best Interest At Heart
+ General Timeliness – I understand that appointments occasionally go over but I don’t want to be waiting an hour in the waiting room every time, when I showed up early for my scheduled visit.
+ Experience With Endometriosis, Cysts, etc.

When I posted on my stories about my experience, I was shocked to hear that several women have doctors who don’t listen to their questions or take their seriously. Let me just say this, if your doctor doesn’t have your best interest at heart… FIND A NEW DOCTOR. It’s not personal, it’s business, and it’s about your health. If they aren’t serving your needs, find someone else because your doctor could truly be the difference between life and death.

ANSWERING YOUR QUESTIONS
Most of the questions I received on Instagram are answered above, but there are a few that I wasn’t able to address. I posted my responses to the remaining questions below, in case you have the same inquiry.

How do you get Endometriosis? Is it hereditary?
To my knowledge, no other women in my family has Endometriosis. However, after a google search the chances of you having this disorder is higher if a woman in your family has been diagnosed.

My doctor and the Mayo Clinic state that there isn’t a known reason why Endometriosis occurs.

How did you know that you had Endometriosis?
It must be diagnosed by a doctor, but after severe cramping and passing out or throwing up because the pain was so intense, I knew this wasn’t normal. Period cramps, though they are uncomfortable, shouldn’t disrupt your daily life by making you miss work, pass out, or by becoming physically ill. This is a situation where you need to be open and honest with your doctor. If your doctor doesn’t believe you or dismisses you… again, find a new doctor.

What made your doctor do the testing? My doctor has always dismissed me when I asked!
Normally a 15-year-old doesn’t ask to see an OBGYN; on top of that, the severity of the pain I experienced was an indication that something was wrong. My doctor took me seriously and searched for the cause of the problem. To properly diagnose Endometriosis you must undergo surgery, so that may be why your doctor doesn’t want to dig deeper. That being said, they should still use alternative resources to see if there is a possibility that you have this disorder. (ex: ultrasound)

No matter what, your doctor is there to provide healthcare for YOU. If you have valid concerns and you are dismissed, get a second opinion elsewhere.

How do your periods compare now vs. before surgery? Was surgery worth it?
My periods before my first surgery were unbearable. I couldn’t do anything other than lay in bed or on the floor in pain. I couldn’t go to school, participate in activities, work, or function. Post-surgery, I still have cramps, but they are much less painful and can be amended with Tylenol. My cramps usually only last 1-2 days instead of the entirety of my period. Birth control also helped me with cramps because it made my period much lighter. Now that I have an IUD, my doctor told me over the next 6 months my period should either disappear or reduce to spotting.

The surgery was 100% worth it because it took most of my pain away and will allow me to safely try for kids when I am ready.


If you made it this far, you are a trooper! I know this post was long, but I hope you found this post informative and helpful. If you have any questions feel free to leave a comment below or privately DM me on Instagram!

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