Sunday, 11 August 2019 / Published in Uncategorized

My Endometriosis Journey: Part 3: Research Done & Surgery Scheduled!

WARNING: The content shared may be graphic and discuss bodily functions with or without images. Do not proceed if this will offend you or you are not interested.

Despite several homeopathic possible remedies, it appears my cyst is growing and the accurate name will soon become an endometrioma which will lead me to through tons and tons of research.

May 2018

Researching the Monthly Cycle and Endo Basics

Throughout the last few months, I spent a lot of time researching the monthly cycle. I wanted to understand endometriosis and how and when it occurs and how a women’s cycle occurs. My entire life, I never had a reason to study my own cycle, it just happened and that was enough for me. I didn’t need to understand the ins and outs of it, until now!

Attempting Natural Remedies

Since I was unable to get to my gynecologist during my cycle in April, I got on the schedule for the end of May during my cycle. At this point, I had tried getting massages, acupuncture, changing and cleaning my diet, doing a candida cleanse, using essential oils, etc.

I was also incredibly positive that the cyst was shrinking on its own. I didn’t want surgery! I was doing everything in my power to overcome this naturally.

Drum Roll: The Verdict Is In

So, on May 23rd I went to my sonogram appointment during my cycle in May to check the size of the cyst. I was so convinced it would be smaller than it was in January. I was shocked, floored, disappointed, upset, scared when I found out that the cyst was now 8.2cm x 6.1cm x 7.5cm and my ovary was over 9cm. In January, it was about 5.3cm x 3.9cm. A normal ovary should be about 2cm!!! My left ovary was almost 5 times the size that it should have been!!!

So, I go to visit my doctor’s replacement because my doctor was out on maternity leave. She proceeded to explain that the next step is to remove it, surgically. She explained that I need to act fast because at the size it is, if I wait much longer and it grows much more, then I may need a full laparotomy (6-week recover& rather than the less invasive laparoscopy surgery (2-week recovery). She suggested that we schedule surgery before I left the appointment, but I had just met this doctor. I needed to process the news and learn more about what this meant, what was happening to my body, possible alternatives, etc.

**May 23, 2019**
Sonogram Tech could not get the left & right ovary in the same image because of how big the left ovary is here: 8.2cm x 6.1cm x 7.5cm

June 2019

Endometriosis Research Becoming a Full-Time Job

But now, now my job was about to become a full-time researcher of endometriosis, endometriomas, and surgeons. You don’t know what you don’t know and I sure learned that! The more I learned, the more I realized I needed to keep learning before allowing any doctor to open me up. After leaving this appointment, I was shocked, sad. I felt lost. I didn’t know what to do.

I became obsessed with reading and learning from online blogs, YouTube videos, websites, and Facebook groups. I then learned about Redditt from a class I was in during the summer so I joined some subreddits on endometriosis. Learning about endometriosis became a full-time job for me.

Most Helpful Research Groups

Facebook Educational Endo Group: Nancy’s Nook
- This is NOT a support group. Use this group strictly for education, learning, reading scientific articles about endo.
- Do NOT use this group to post questions and ask for advice as you would in a support group.
Facebook Endo Group: Endometropolis
Facebook Endo Support Group: Endometriosis Support Group
Reddit Endo Group: Endo Subreddit

Highlights of Endo Research

A few highlights that I slowly uncovered include:

Endometriosis comes in many shapes and sizes. It presents itself so differently in each person. Some may have 1 or more of the following: PCOS, adenomyosis, endometriosis lesions, endometriomas, and so much more. Since I have an endometrioma, it is safe to say I have endometriosis, but no signs of others.
- Endometriosis is commonly found on organs within the abdominal cavity: bladder, intestines, bowel, liver, appendix, gall bladder, thoracic cavity, ovaries, etc.
- There is no real agreed-upon theory for why endometriosis occurs and how. There are several theories mainly around too much estrogen, retrograde bleeding, and genetics or something based at birth or formation of an embryo.
- Not everyone who has endometriosis has endometriomas. Endometriomas are complex cysts (compared to simple cysts) also called chocolate cysts because they are filled with a chocolate brown substance which is old endometrium tissue that is trapped and has nowhere to go. The cyst just keeps growing each time it is fed from the monthly cycle.
  Endometriomas appear to form outside of the ovaries in most cases I heard of and read about, but in my case, it was growing inside my ovary.
- The severity of pain is not indicative of the stage of endometriosis.
Not all OB/GYNs are created equal. They are not!!! Many start out general doing obstetrics (baby & deliver) and gynecology (female part doctors) then they usually branch off and become more specialized as time goes on.
- Many general OB/GYNs do not know how to identify signs of endo, don’t know what to look for and where to look for endo while performing laparoscopy.
- Many OB/GYNs will try to prescribe birth control claiming that will solve the problems. Yes, it may help with pain, but the endo may still grow every monthly cycle and just gets worse while the symptoms are being covered up.
- Many OB/GYNs will tell you they need to do “exploratory” surgery. Don’t waste your time (unless health insurance requires or some other unknown reason) on doing an “exploratory” surgery with a surgeon who is not able and prepared to 100% excise all endometriosis the first time. Why explore? Why not just excise from the start? Why spend money, time, recovery, and build up scar tissue from an exploratory operation with a surgeon who is not an endo excision expert IF you can start with/go straight to an endo specialist surgeon?
- Some surgeons use ablation, some use excision, and some use both to during surgery. Ablation vs. excision is a heated debate and I found very few people, known as excision experts who claim to and believe excision is the gold standard and the only way to help women with endo. They claim ablation masks the symptoms and allows endo to regrow more fierce shortly after on the scar tissue left behind from ablation.

The Search for the Perfect Surgeon

Since I had learned so much, I realized how important it was to have the right surgeon. Thanks to Nancy’s Nook, a Facebook group, I was able to locate a few surgeons to set up appointments with. My initial goal was to find a surgeon that has experience and is confident in excision surgery who does not use ablation who could remove my left ovary since that is what I thought I needed.

But as you will soon see, I found a surgeon who made me learn that removal of the ovary may not even be required! Again, you don’t know what you don’t know until you research, learn, dig, ask questions, and advocate for yourself over and over and over again until you get the answers you want!

The first option was my current doctor’s fill in while she was out on maternity leave. I never had met her before and she seemed nice and knew her stuff, but I wanted to look around and learn more before booking with her.
The next surgeon was great! I loved her and she was going to use the Di’Vinci robot which was a minimally invasive technique and she came highly recommended from a friend who is a doctor in the area. The first issue was that she discussed using ablation and not operating on the bowel/rectum which was a concern. She also said she would remove my left tube and ovary hands down.
The next doctor I saw was wonderful and helped me learn even more. She took 1 hour and 20 minutes to educate me and my boyfriend on endo which gave me even more to research. I think visiting her was a key turning point especially when she told me that she was not comfortable operating on me and I should seek help elsewhere but visit her after surgery.
I met the next doctor online in a Facebook or Redditt group. He was doing free phone lunch and learn consults with women who signed up. He then offered for me to send him my records and did a free 1-hour phone consult to discuss what I would do if I went to him for surgery. He was great and I would have gone to him, but it was out of state and required a large cash down payment. I would have done it had I not had another decent option closer.
I heard about the next doctor from a friend of mine who had just gone through an operation with him. He was great as well! He had 30 years in the field, was very educated, confident, nice, etc. He was not as local, which would have been okay, but he also quickly jumped to talking about doing a hysterectomy which was never even discussed with any of the other doctors so I was a little hesitant.
I heard about the next doctor from Nancy’s Nook, a Facebook endo group with over 60,000 members when I joined in May 2019. He was a professor, endometriosis researcher, and excision endo expert, Dr. Emad Mikail, at USF Tampa General, which is the same hospital that this all started in. When I went to visit him, he was so thorough asking me questions from when I first started my period back in 5th grade. He wanted to get a new ultrasound and come in with the tech to see what I had going on, no other doctor did this. I was very impressed and felt like this was the one. Not to mention, he explained how he only loses 2 ovaries per year and he was fairly confident that he could SAVE my ovary and not remove it!

DID YOU HEAR THAT!? I found a surgeon who was fairly confident that he could SAVE my ovary when all others automatically jumped to removing my ovary and tube!!! I never even knew this was an option until hearing him say such a thing. My boyfriend and I were completely shocked!!!

July 2019

Surgeon Selected & Surgery Scheduled!

So, I decided on Dr. Mikhail at USF Tampa General. I saw him at the end of June for the consult and his soonest surgery date was September 5th. I was crushed! I did not want to wait an entire 2 months, but I knew I had to…. until there was a cancellation!!!

I had asked to be put on the cancellation list no matter how short of notice. I received a phone call on Friday, July 19th from Dr. Mikhail’s office that they had a cancellation on Friday, August 2nd and I could have it!