Hi all! Welcome to the third email of this new series about the little things you can do for common issues at home.

Today we're talking about endometriosis and painful periods. This topic is near and dear to me as I personally have endometriosis and have suffered from very painful periods every month for the last 15 years (that's a lot of painful periods!). I also had endo excision surgery in October of 2021, and have done quite a bit of learning in regards to all things endo, and I'd like to share with you what I know and what has helped me, because this condition affects 1 in every 10 women (and we think that number is higher because women underreport their pain.)

You've probably realized by now that nothing is really TMI in my world, and too many people suffer in silence. So let's talk about it. Of course always please chat with your provider if you are concerned, and know that this list is not medical advice. :)

First, what is endometriosis?

Simply put, endometriosis is the occurrence of endometrial-like tissue outside of the uterus. This tissue plants itself and grows, forming lesions that create their own blood flow, nerve tissue, and hormone production.

Not to say that having endometriosis is anything like having cancer, but the way that the cells grow into a nasty monster and can latch onto basically any organ in the body is similar. There have been cases of endo being found in the brain, on the diaphragm, on the liver, throughout the colon, and more. You can imagine the difficulty with symptoms with this widespread disease.

Why does it happen?

In short, we don't know, really. But there are quite a few theories!

The old idea that endometriosis is caused by "retrograde menstruation" where blood flows backwards out of the fallopian tubes into the abdominal cavity to create endo is outdated and has been disproven.

Some think it's laid down in utero and then activated during puberty.

Some think it's due to inflammatory cells passing through a leaky gut and being where they shouldn't.

Some categorize it as an autoimmune condition.

There's definitely a genetic aspect of it, as well.

I won't go into all the theories, but I'll let you read all the resources, and if you come across newer data please send it to me!

How is it diagnosed?

Right now, laparoscopic surgery is the standard for diagnosis, but that seems to be changing with hopefully the addition of new blood markers and more advanced imaging, which is so great and provides more answers for people without having to get surgery!

Oftentimes, the average OBGYN is not trained to see it on imaging like ultrasound, and unless there is significant anatomical distortion due to the lesions pulling and sticking to organs and the inside of the abdominal cavity, OR they see an endometrioma, (essentially a large mass/tumor of endometriosis) then even if you have pain and get pelvic ultrasounds, chances are your primary care provider will not give you an endometriosis diagnosis. Trust me on this, I had about 4 pelvic ultrasounds over the years and they all came back perfect and "normal." It wasn't until I had one with my surgeon and a pelvic exam where he confirmed he could actually feel nodules of endo on my exam.

Doctors won't find something they don't know how to feel or look for. And this is why it's crucial to do your research on your provider, especially if you're opting for a surgery.

My surgeon told me when I was sitting in his office for the first time, "If you have done research and think you have endo, you probably do."

You might have endo if....(of course these are not official diagnostic criteria...I know you know that but I have to say it.)

• You have painful periods that seem more intense than what you hear others talking about
• Your period keeps you away from work or school (or you are barely able to make it there)
• Your period wipes you out and fatigues you
• You bleed heavily to the point where you worry about bleeding through clothes or bedsheets
• You have pain with sex
• You have gut issues
• You need to take pain medication to function
• You have a close relationship with your heating pad
• You have symptoms like a bloody nose during your period
• You feel and look bloated more often than not
• You have cramps for more than just the first day of your period
• You have other issues like hormone dysregulation, thyroid issues, estrogen dominance
• You have MCAS, hypermobility, POTS, or other conditions that go along with these

What can we do about it from home??

• Educate yourself: this is the single most powerful thing you can do. Once you know and understand more about the disease, the more options you have and the better you can advocate for yourself! The biggest thing to know is the difference between excision (cutting it out by its roots) surgery and ablation (burning off the top) surgery. Excision is the gold standard.

Here are my top recommendations to learn from prior to going into to a provider:

• Period Repair Manual by Lara Briden This book was revolutionary to me. Since reading it, I own three copies and loan them out all the time. Lara explains things in such a clear way, and gives practical ways to talk with your provider about the things you’re noticing about your period symptoms. It’s a large player in how I came to the conclusion that I have endometriosis. This book is a great one to have around for reference even after you finish reading it.

• Nancy's Nook is an incredible resource library where I spent a ton of time, reading through all the topics prior to making my decision for surgery. Nancy Peterson, RN has made huge strides for endo. There's also a facebook group.

• Endometriosis.org is another great resource library you can read through and get information to help you understand aspects of the disease.

• I Care Better is a directory of heavily vetted endometriosis experts - surgeons as well as PTs and other providers. Highly recommend.

• Below the Belt documentary is a helpful educational film to learn more about endo and what's being done about it.

• Listen to my personal story about endo. I have done a couple podcasts on it. The first one is my story + a 1-year post op reflection.

• The second is an interview I did with my surgeon, which is really fascinating. I am so grateful to Dr. Fogelson for believing my pain, validating my experience, and providing an incredible surgical experience. And if you know me, you know I'm a nerd and I love to show people my surgery video! (if they want, of course.) And you can watch my surgery in this video podcast. It's pretty awesome and eye opening - because the endo lesions that caused me so much pain hardly look like anything on the surgery. This is why the staging of endometriosis does not always correlate with the symptoms.

• You can improve your diet and move your body: Of course I can say these things for options of how to help endo symptoms at home. There's homeopathics that can help, there's herbs that can help, exercise and movement is always good, and eating an anti-inflammatory diet is great, but I know that this advice sounds stale and overwhelming and even patronizing when you're in extreme pain. If the common remedies like "eat a banana" or "go for a run" to help with cramps do not work, it's likely because you're dealing with something much more significant than just cramps. If you are doubled over in pain, a banana isn't going to do anything. And I get that. So rather than give you a bunch of minor things you could try I want to equip you with resources so you can learn as much as possible so you can make the right decision for YOU.

And whether that's surgery, changing your diet, or taking medication, I support you in that.

There are two other areas I want to address: Stress Management and Pain with Sex

Stress: As with all health, things flow better when we’re living in a state of calm and able to relax. Finding whatever works for you and stress management is so important. Journaling, going outside for walks, reading, meditating, getting together with friends…whatever it may be, make sure to find some time for that, even if it’s just 5 minutes a day. If you fixate on endometriosis pain, that slowly becomes your life. It's important to find hobbies and activities and time to do things you love, to the best of your ability.

Painful sex: This is one of the most common symptoms of endo, and it can be devastating. Here are some ideas to help process:

1. Talk about it. Write it down in your journal, talk to your partner, and work your way to talking to your provider about it.
2. Get a referral to pelvic floor physical therapy. Look at the directory that Pelvic Guru has and find a great therapist in your area. A good therapist will be able to help you figure out the source of your pain. There are so many different diagnoses that could cause pain/discomfort with sex that it’s important to be able to identify the cause for appropriate treatment.
3. Don’t be afraid to say no to sex while you heal. This is crucial for the pain feedback loop in our brains. If you just suck it up and endure the pain, it creates more groundwork for sex to always be painful. The good news is that you can rewire your brain! This often comes with therapy, both physical and emotional, and time. Don’t underestimate the time it will take.
4. Read some books! Here are some of my favorites:

• Come As You Are by Emily Nagoski, Ph.D.
• Sex Talks: The Five Conversations That wWill Transform Your Love Life by Vanessa Marin
• The Great Sex Rescue: The Lies You’ve Been Taught and How to Recover What God Intended by Sheila Wray Gregoire (this is an amazing book if you grew up in “Purity Culture” and realized that your brain is wired to think sex = bad)

Another thing to consider: if you have pain or discomfort with sex, likely you’ll have a really tight pelvic floor that’s clenching at the thought of any penetration. Relaxation, not more kegels is what you’ll need to help those muscles out. This is also just extremely common with endo, because the muscles tighten with chronic pain. Read this great blog post with some practical stretches you can do today: Tips for Pelvic Floor Relaxation by Pelvic Guru

Hopefully this was informative and helpful to you on your journey, or gives you the resources to help others who might be suffering.

As always, I am happy to talk to anyone about endo. Reach out if you need. 💛

Warmly,

Natalie