The Endo Project

Happy International Women’s Day!
Where there is a woman, there is ✨magic✨

Happy International Women’s Day!
Here’s to strong women. May we know them. May we be them. May we raise them.

Happy International Women’s Day!

7 Tips for Recovery:

1. Lidocaine Patches
Placing lidocaine patches AROUND, NOT directly on, your incisions can help with any itching, burning, or pain post-op.

2. Panty Liners
Placing panty liners on the inside of your shirt or pants where your incisions rub can help with any irritation or pain, and provides a little cushion for comfort.

3. Overnight Pads
You will likely have post-operative va**nal bleeding, it’s normal! But, you can’t place anything in the va**na for a few weeks post-op, so overnight pads are the way to go as you will be resting the majority of your recovery.

4. High-Waisted Everything!
High-waisted underwear, high-waisted leggings, high-waisted everything! High-waisted clothing can provide a little extra compression post-op!

5. Button Up Shirts
Especially if you experience air in your shoulders, button up shirts are the way to go to avoid lifting your shoulders.

6. Meal Prep
Meal prepping before your surgery takes the burden of cooking off your plate and also ensures you’ll have well-balanced meals to side in your recovery.

7. Laxatives
You’ll be taking narcotics and general anesthesia tends to block you up. If you already experience irregularity, taking laxatives a few days prior to surgery can prevent post-op constipation.

4 Things to Expect After Your Excision Surgery:

1. Air in your shoulders:
Painful, but should only last a couple of days- ice packs and heating pads should help!

2. Cystoscopy:
Sometimes your surgeon will perform a cystoscopy during surgery to ensure no damage to your ureters or bladder occurred. If your surgeon performs this, it will likely be painful to urinate for a few days. There will also likely be some blood in your urine as well, this is normal. But if it persists for more than a few days or is excessive blood- contact your doctor.

3. If it’s your first surgery, or even your 6th and you have new incisions, expect them to burn and itch as your body heals. Placing lidocaine patches, like , AROUND your incisions (NOT directly on them!!!) can help with any discomfort.

4. Your throat may be sore. This is from the breathing tube used during surgery. Cough drops, ice cream, or soup may help relieve any pain or soreness.

5 Things to Help You Recover from Your Endometriosis Excision Surgery:

The simplest things are often the things we forget or rush… Here are few things to help you have a smooth recovery:

1. Rest:
Your body just endured a trauma, a very well trained and executed trauma- but still a trauma. Give your body time to recover and rest.

2. Hydrate:
Your body is healing, give it all the nutrients and fluids it needs to do just so!

3. Listen to Your Body:
I don’t care if what’s her name went back to work 24-hours post-op, you are not them and your recovery is not the same. Even if you’ve had the procedure done 4 times before, your recovery may look different every time. So, just slow down and listen to what your body is feeling and telling you.

4. Move:
At your own pace, but move. Movement will help dissolve the air in your shoulders and overall aide in your recovery and prevent post-op complications. I’m not saying run a marathon or go to a cardio class, but try little movements like doing walking laps around your living couch.

5. Scheduled Pain Meds: For the first 24-48 hours, stay on top of your pain meds!

Endometriosis can feel like a never ending battle with your own body.

Endometriosis is more than a reproductive disease. Endometriosis is a whole body disease. Endo has been found in or on nearly all pelvic organs and has even invaded the diaphragm and been found on the lungs of some patients.

Endometriosis has put me in a different stage of life than my friends.

This week, I began my 5th year of undergrad studying molecular genetics with a focus in pre-med. Looking back on the past 5 years, I can’t help but think of my freshman year self. The excitement of starting college, taking the first big step towards my dream career. Freshman me would have never guessed what my college experience has actually looked like.

Over the course of my undergrad education, I have undergone 5 surgeries, all in the middle of the semester. I’ve been medically induced into menopause twice and dealt with all the side effect that come with menopause and the drugs inducing it. While friends were traveling over fall break, I was having surgery to “unstick” all my organs from one another and to remove even more endometriosis.

Endo has taken a lot from me in the past decade, but the last 5 years just seem like a rollercoaster with more lows than highs and no way to get off. While most of my friends graduated this past spring, I was fighting to just stay above water- dropping classes and running from doctors’ appointments to classes like a maniac.

The past 6 months have thrown yet another curve ball I didn’t think would be pitched for years- fertility. While my peers are enjoying the freedom from school and stepping into their careers, I’m visiting fertility clinics- attempting to figure out how to use my gap year to try and preserve what little fertility I have left.

Endometriosis has put me in a different stage of life… and it sucks.

10 Things to Pack for Surgery:

With my 5th ex. lap. just 2 days away, I thought I would share my surgery packing list.

1. Button Up Clothes: Lifting your arms may be uncomfortable as you stretch your abdominal muscles. It may down right painful if you have post-op air in your shoulders. Button-up shirts will be your bff. You will be a little bloated post-op, be sure to pack comfy, slightly oversized clothes.

2. High-Waisted Underwear: I personally wear the mesh underwear the hospital provides until I get home, but if you don’t want to wear them high-waisted “granny panties” will do the job!

3. Comfy, FUZZY, Grippy Socks: I hate hospital socks so I am sure to pack a pair of fuzzy, grippy slippers to eliminate any fall risk and be a little bit more comfortable.

4. Scrunches/Headbands to keep your hair out of your face post-op.

5. Slip-On Shoes: Bending over is painful, attempting to put shoes on will be difficult. Slip-on shoes are the way to go!

6. Panty Liners: Line your shirt or pants with these! It will create a buffer between your clothing and incisions.

7. Chargers for Electronic Devices: I go home day of surgery, so if I arrive at the hospital with a fully charged phone, I’m typically good. But, if you are spending the night in the hospital, you might want/need a charger.

8. Tablet, iPad, Phone: To keep yourself busy in pre-op. Again, if you’re spending the night, you may want them in your post-op too.

9. Pillow & Blanket for your ride home.

10. Dry Shampoo: If you are staying in the hospital overnight, dry shampoo is a must.

Bonus: Snack- if you’re staying overnight, hospital food doesn’t always have the best ring to it. Packing a couple small snacks may be a life saver.

Five Things To Do Before Your Endo Excision Surgery:

1. Pack Your Bag: Check our previous and upcoming posts for a packing list!

2. Wash Your Bedding: Sheets, Pillowcases, Blankets, and Comforters! This will allow the cleanest recovery and can help prevent infection- plus, it’s always nice to have fresh sheets!

3. Charge any and all electronic devices you plan on bringing with you! I always make sure my phone, ipad, and airpods are charged; it’s nice to have them charged to pass time in pre-op and when at home for post-op recovery.

4. Download any shows or games on your devices. Hospital guest wifi can be spotty sometimes so it’s always good to have a backup.

5. Shower: You’ll need to shower the night before and morning of your surgery, making sure to really wash your stomach with an antibacterial soap, like dial.

What to buy before your endometriosis excision or diagnostic surgery:

As I prep for my 5th robotic ex lap to remove endometriosis and lysis of adhesions, I thought I would share my top 10 things to get for my recovery.

1. Panty Liners: I use panty liners to line my clothes to create a soft barrier between my clothing and my incisions to prevent rubbing.

2. Overnight Pads: You are probably going to have some bleeding post-op and since nothing is supposed to be placed in the va**na for 2-4 weeks (depending on your surgeon’s instruction)- pads are the way to go. Since you are going to be laying down a lot in your recovery, an overnight pads will be your best option.

3. Heating Pad: They can be a lifesaver with post-op cramping.

4. Ice Packs: Your BEST FRIEND for post-op air in the shoulders.

5. High-Waisted Underwear: I personally like the slight compressions they provide in my recovery, With panty liners stuck on the inside, my incisions can be cushioned from my pants. And when using pads, “granny panties” are the way to go.

6. Button-Up Shirts: It might be sore to pull shirts over your shoulders and head as you stretch your abdominal muscles. If you have air in your shoulders, the last thing you want to do is raise, or move, your arms at all.
Oversized, Comfy Clothes:
it just makes sense…

7. Grippy Fuzzy Socks: If you don’t like hospital socks, grippy fuzzy socks are the way to go- as you will be a fall risk, you need socks with grip. In most hospitals, as long as you have grips on them, you can wear your own socks. It also helps remove fall risk for yourself at home.

8. Medical Grade Binder/Waist Trainer: My hospital provides one, so you wake up from surgery with a binder. You will either LOVE or HATE this. I personally allows the compression it provides.

9. Dry Shampoo: Your hair is going to be messy and greasy, dry shampoo has always been one of my best friends.

10. Snacks: You might not feel like cooking (and you probably shouldn’t the first 24 hours in your post-op. You might also not have your normal appetite, so little snacks are helpful.

Let’s Talk: Bowel Endometriosis

First, let’s talk symptoms. Symptoms of bowel endometriosis and typical endometriosis have a lot of overlap- which helps explain why bowel endo is hard to diagnose/recognize. Symptoms typically include painful bowel movements, irregular bowel movements such as constipation and/or diarrhea, and difficulty passing stool. Other symptoms include pain related to periods, severe pain with bowel movements during cycles, pain with in*******se, bloating, and while rare, re**al bleeding or bloody stool.

If you are experiencing any of these symptoms, you should discuss them with your P*P. If you have known or suspected endometriosis, it is also important that you mention these symptoms to your GYN.

It is estimated 1 in 3 endo patients have bowel involvement, however identifying it can be difficult- especially if your care team doesn’t know they should be looking for it.

Your P*P or GYN may refer you to a GI specialist to rule out any other GI issues and potentially identify the endo. Your GI physician may preform a colonoscopy (and possibly an endoscopy) to ensure no other issues are being missed as the cause of your pain. During the colonoscopy, there is a chance endo may be observed, but like mentioned in our previous post, the endometriosis implants would have to completely perforate all layers of the bowel and even then, it can be difficult to visualize.

Let’s Talk: Bowel Endometriosis

It is estimated that as many as 1 in 3 endo patients have bowel endometriosis. The reasoning for the estimation rather than a hard fact is the difficulty in recognizing and diagnosing bowel endometriosis.

The first difficulty stems from the fact the endometriosis implants would have to erode through all the tissue layers of the bowel in order to be seen during a colonoscopy. Even then, it is hard to identify- many times appearing as a small spot of inflammation that most GI physicians would overlook as it would not be concerning without a background of endo.

Your endo could erode through the first 3 layers of your bowel, causing significant pain, but would not be visible during a colonoscopy and hard to see on an MRI. Many endo patients present with superficial (stage 1) endometriosis on their small and large intestines during surgery. When an excision specialist removes superficial endometriosis from your bowel, it is very plausible that there could still be microscopic endometriosis tissue left behind that is deeper than the visible superficial endo. Which also can explain why you may not have complete relief post-op.

The symptoms of bowel endometriosis have significant overlap with regular endometriosis, which also adds to the difficulty of differentiating symptoms between the two.

Resection of bowel with endometriosis involvement is also a much harder and longer recovery than a typical exploratory excision laparoscopy. So, if your surgeon is suspecting bowel involvement and potential resection, prepare yourself for a longer recovery and give your body more time to “bounce back.”

Follow along this week to learn about all things bowel endometriosis.

Endo treatment options could be eliminated.

Read that again. Drugs to treat a legitimate medical condition may no longer be available after the overturning of Roe v Wade.

For advance or severe cases of endometriosis, PCOS, adenomyosis, and uterine fibroids, drugs such as GnRH agonists and antagonists are prescribed. These drugs have the potential to cause a miscarriage or effect fetal development, it is still possible to get pregnant while using these drugs. Patients themselves cannot be on birth controls as it affects the effectiveness of the drug, and so patients are advised on the importance of non-hormonal contraception, like condoms.

In the overturning of Roe v Wade and states’ governments banning abortions and abortion medications, these drugs have the dangerous potential to be banned as well. For many women, these drugs are the only thing that allows them to have a normal or reasonable quality of life while living with endo, PCOS, adeno, or fibroids. The elimination of these drugs leaves only birth control, an option that fails to alleviate any symptoms for advance stages of these disorders.

Supreme Court Justice Clarence Thomas has stated that the SCOTUS should “reconsider” our rights to contraceptives (birth control).

58% of patients on birth control are taking it for reasons other than contraception (even though contraception is a good enough reason to be on it). These reasons range from irregular periods to acne to PMS. For disorders like endometriosis, adenomyosis, PCOS, and fibroids, birth control is the first and primary treatment. This treatment has the potential to be wiped away if the court continues down the path its on. Regardless, some treatments for advance cases are immediately under fire.

The previously mentioned conditions are also the leading causes of female anatomical infertility- and birth control and the previously mentioned drugs help preserve their fertility. By taking away access to these drugs, you effectively compromise the patient’s fertility, negligently treat their condition, and take away their ability to prevent unwanted pregnancy.

Roe v Wade, IVF, and how it might relate to you as an endo patient.

The fear behind the overturning of Roe v Wade and IVF, stems from this newly founded attempt to define when life begins. In light of new abortion laws defining life beginning at fertilization, IVF now comes into play as a topic of discussion.

IVF, or in-vitro fertilization, is the fertilization of egg and s***m outside of the body. The average number of eggs collected in 1 round of IVF is 8-14. Statistically, if 10 eggs are harvest, you would on average have 2-3 blastocysts (a 3-5 day old embryo, mature enough to be implanted). Of course these numbers are statistically based on averages and every person and fertility case is different. The majority of couples going through this process also opt for genetic screening, to ensure the implantation of the healthiest embryos and that the embryo has no serious genetic anomalies.

Most couples choose to dispose of embryos with serious genetic disorders, or with high risk for specific diseases or disorders. Many couples that have gone through multiple rounds (and some only 1 round) of IVF have multiple frozen embryos left over after a successful pregnancy. Some will use their remaining embryos to continue to grow their family, while others choose to dispose of them.

Under new laws, assisted reproductive technologies (ART), like IVF, are potentially under fire. By defining life beginning at fertilization and banning abortions, every embryo disposed of would be considered an abortion despite never implanting inside another human. The law could dictate that every embryo must be implanted or remain frozen (causing a financial strain). The potential side effects this classification may have can be detrimental- from embryos with serious genetic disorders that may never result in a live birth (like most aneuploids) to genetic disorders like Cystic Fibrosis, Tay-Sach’s, or Huntington’s Disease that all lead to the death of the patient to mothers’ lives being put at risk by forced high-risk pregnancies. Much harm could be done.

There is also fear of banning or restricting IVF all together.

How does this apply to you as an endo patient?
See the 2nd image.

Roe v Wade has been overturned, now what?

Disclaimer: I know this isn’t our page’s normal feed; in fact I had already designed an entire weeks worth of posts on bowel endometriosis, but with the current state of the United States I felt it necessary to use this platform to share these resources. As a future Women’s Health physician, I felt it necessary to share, educate, and provide resources to women who may need them but have no idea where to look- or what to even do with the state of this country.

For more resources, check the last pic.

Endo treatment options could be eliminated.

Read that again. Drugs to treat a legitimate medical condition may no longer be available after the overturning of Roe v Wade.

For advance or severe cases of this disorders, drugs such as GnRH agonists and antagonists are prescribed. These drugs have the potential to cause a miscarriage or effect fetal development, and so patients are advised on the importance of non-hormonal contraception, it is still possible to get pregnant while using these drugs. Patients themselves cannot be on birth controls as affects the effectiveness of the drug, and so patients are advised on the importance of non-hormonal contraception, like condoms.

In the overturning of Roe v Wade and states’ governments banning abortions and abortion medications, these drugs have the dangerous potential to be banned as well. For many women, these drugs are the only thing that allows them to have a normal or reasonable quality of life while living with endo, PCOS, adeno, or fibroids. The elimination of these drugs leaves only birth control, an option that fails to alleviate any symptoms for advance stages of these disorders.

Supreme Court Justice Clarence Thomas has stated that the SCOTUS should “reconsider” our rights to contraceptives (birth control).

58% of patients on birth control are taking it for reasons other than contraception (even though contraception is a good enough reason to be on it). These reasons range from irregular periods to acne to PMS. More specifically, birth control is used in the treatment and management of endometriosis, adenomyosis, polycystic o***y syndrome, and uterine fibroids; all are leading causes of infertility in women.

See the previous post to understand the importance of the overturning of Roe v Wade as an endo patient.

If you are an endo patient, and even if you aren’t, please read this.

The overturning of Roe v Wade is much bigger than just the right to abortion. Roe v Wade protected your fundamental right to privacy when it comes to your medical care. This right is no longer granted.

The fearful part of the potential (& already initiated) criminalization of abortion applies directly to endo patients.

1 in 8 pregnancies end in miscarriage. Endometriosis patients have an 80% increased risk of miscarrying compared to women without endo. Women with adenomyosis also have an increased risk of miscarriage/spontaneous abortions- one study found 91.1% of endo patients also suffer from adenomyosis.

Endo patients have a nearly 3x higher risk of ectopic pregnancy. A pregnancy that will never result in a live birth and will kill the patient without medical intervention (abortion).

Miscarriages have the potential to be investigated and prosecuted by a government that fails to supply adequate funding to the research and treatment development of endometriosis, and other female reproductive disorders. Women have the potential to be criminalized over something entirely out of our control, women with endometriosis have a higher risk of criminalization simply due to the statistics behind our risk of miscarriage.

Roe v Wade isn’t just about abortions. Overturning Roe v Wade is not a pro-life agenda, many women will lose their lives in horrific and barbaric ways.
This is not a war for the “unborn,” this is a war on women.

Just because my appearance doesn’t fit your definition of sickly, doesn’t mean I am any less sick or in any less pain. What you see on the outside is just the tip of the iceberg.

The Iceberg that IS Endometriosis