ENDOMETRIOSIS AND INFERTILITY

Fertility

Jan 9

Let’s start with the basics of endometriosis.

Endometriosis (endo for short) is a disease that effects at least 1 out of 10 women/people with uteruses. Many experts believe this number is too low because it is often misdiagnosed or even missed all together.

A not-so-fun fact? It takes an average of EIGHT years to get a diagnosis of endometriosis.

“Everyone kept saying painful periods are normal and I should take some Ibuprofen and a hot shower. I felt like I was weak for not being able to handle getting my period. It was so validating and frustrating to finally learn I had “textbook endo.”
- Hanna

Endometriosis is when tissue that resembles the inner uterine lining (endometrial tissue) grows anywhere outside of the uterine cavity. About 96% of the time this tissue grows somewhere in the pelvis like on the ovaries, fallopian tubes, bowels, rectum, intestines, bladder, pelvic nerves, ligaments, abdominal walls, inside the uterine muscles (also called adenomyosis), inside surgical scars, on the appendix, etc. It is outside the pelvis in the chest or other places about 4% of the time.

Endometrial tissue growing where it shouldn’t be causes cyclical inflammation, congestion, and immune responses, plus possible scarring, adhesions, and cysts. Specifically a type of cyst called endometriomas or chocolate cysts.

These changes cause significant pain and other symptoms including fatigue and heavy bleeding, especially when the endo is in the uterine muscles or near the uterus. This is what’s called “texbook endo.” Up to 30% of people with unexplained infertility have “silent endo” with few to no symptoms.

Endo can cause non-menstrual symptoms that are based on where the growths are located. For example, frequent urination can be from endo on the bladder. Sharp stabbing pain when you have the urge to poop or have a bowel movement can be from endo on the bowels/rectum. Sharp pain with ovulation can be from endo on the ovaries. Sharp pain with sex … well, the list goes on.

“I never realized until I read one of your newsletters — I have super frequent urination all the time, but especially around my period. I just thought I had a small bladder! When I finally asked my doctor about endo and they did an ultrasound, we found the real reason. Endo on my bladder!”
- Ali

A helpful tip.

Try to notice if your symptoms correlate with your menstrual cycle (either your period or ovulation). This is a bonus clue suggesting the root may be endometriosis.

Endo is categorized in stages I - IV. Stage I is the least amount of endo tissue, stage IV is the most. It’s totally possible to have a tiny amount of endo in stage I that causes a lot of pain, and stage IV endo causing very little pain. It all depends on where it’s growing.

My own example.

My own back and hip pain was always way worse right before and at the start of my period — it got so bad that it felt like I was getting electrocuted sometimes! My endo was only stage one, but it was near and on the nerves in my lower back. Once the endo was suppressed with birth control pills it got better and surgical removal + an IUD helped even more!

Some providers will claim that teens are too young to have endo, but this isn’t true. Research shows that 38% of people who are diagnosed with endo as adults had symptoms that started by or before they were 15.

Wherever it grows, endometrial tissue produces something called prostaglandins. One of prostaglandin’s jobs is to cause squeezing and cramping. Ideally to help a period or help childbirth happen. When there’s endo growing outside the uterus it can cause lots of squeezing and cramping in the pelvis and bowels too. This can lead to significant diarrhea, nausea, and even vomiting that comes and goes with the period.

Endo has several possible causes, but there seems to be a strong genetic factor. If you have a first-degree relative (mom, sister, daughter) who has endo, you are 2 - 3 times more likely to have it too.

The same root genetic factors are also linked to inflammatory bowel disease. So if you have endo you are ALSO more likely to have gut issues like IBS, bloating, and GERD — even when endo isn’t involved. These sorts of digestive issues won’t necessarily follow your menstrual cycle. I’ve listed a great IBS app I use at the end of this post.

How is endometriosis diagnosed?

The standard way to diagnose endometriosis is to look for it via a laparoscopic surgery. This involves being put under anesthesia so a doctor can make several small incisions through the abdomen, inflate the abdomen with some gas, and look around using a small camera. This is obviously invasive and can be expensive.

An experienced OBGYN provider may be able to provide a thorough pelvic and rectal exam that includes applying pressure in different areas to see if they cause discomfort or sensations. This can be a way to make an informed guess whether endo is on the bowels, ovaries, etc, but is something not all people are comfortable with and not all providers are experienced doing.

Remember: When it comes to endo, provider experience matters. A lot of OBGYN clinics dismiss endo symptoms as normal and aren’t well versed in diagnosing or treating it. Read on to find providers who are.

Some clinics look for endometriosis with a vaginal ultrasound. This can be useful in some types of endo — large amounts, enlarged uterus (adenomyosis), cysts on the ovaries, and bladder lesions can often be seen this way. That said, ultrasounds can totally miss identifying other places endo may grow or smaller lesions. Abdominal or rectal ultrasounds are less helpful and shouldn’t be used.

A powerful MRI scan can also diagnose endo. But again, access to this is limited by insurance coverage and where you live.

A newer endometriosis diagnostic test that’s used mostly for people who are sturuggling with fertility is called Receptiva DX. This test uses a uterine biopsy to measure something called BCL6. BCL6 is a protein marker that indicates endometriosis inflammation.

Other less invasive tests are newer on the scene and worth asking about. The French Ziwig Endotest is a saliva test that uses AI tolook at miRNA to correctly diagnosed endo with over 95% accuracy! I’m writing this in 2024 and it isn’t in the US yet, but hopefully it’ll be available in more places in the coming years so ask your provider. DotEndo is another promising test on the horizon that looks for the same markers in a simple blood test. As I’m writing this, the CA company is in the research testing phase. I’ll add links for these tests at the end of this post too.

So, how is endometriosis treated?

Endometriosis treatments are divided into two types.

Non-Surgical Options for Endo

Non-surgical treatments to decrease pain, symptoms, and bleeding often decrease or stop the endometrial tissue from cycling. Continuous birth control pills, IUDs, hormonal injections, and other estrogen blocking medications are some examples. Because suppressing estrogen and stopping the tissue from cycling is helpful, pregnancy and breastfeeding can sometime slow down endo progress and ease symptoms. These sorts of treatments can work well for many, but they block fertility.

Taking Ibuprofen (especially when taken before the endo pain starts) can decrease prostaglandin production. This can decrease both cramps and lessen bleeding. Other NSAIDs and steroids can decrease inflammation too.

Natural layers like diet, supplements, exercise, acupuncture, heat, castor packs, and more can be great too! Acupuncture has been shown to decrease pain by a fair bit. Ask me about it or try my TENS and acupressure video options over at TBYW TV.

Surgical Options for Endo

There are two types of surgeries to remove endometriosis. Both are usually done via a laparoscopic surgery through small incisions as described earlier.

Ablation

Ablation burns or vaporizes the places where endo is found with heat or lasers. This kills off the surface of the endo, but often leaves the root. Ablation surgery is far more common and more doctors are experienced in it. It’s less invasive, more likely to be covered by insurance, and has a shorter recovery time. In some cases it may work long-term, but endo tends to regrow in 40 - 60% of cases, especially if a menstrual cycle is resumed. This surgery may need to be repeated if symptoms return.

Excision

Excision cuts down and under lesions to more deeply remove visible endometriosis to try to remove the root. There are few doctors who perform this surgery, it is more invasive, insurance is less likely to cover it and recovery is longer, but it leads to full remission in 75 - 85% of people. It tends to be more helpful with more severe endo. If the goal is to excise every bit of endo, it may involve removing parts of the bowel, ovaries, and even in extreme cases, hysterectomy (removal of the uterus). These all have serious implications and should be discussed with a surgeon ahead of any surgery.

Both ablation and excision surgeries do involve risks of anesthesia, bleeding, infection, etc. But on the flip side, reducing excessive inflammation, immune response, pain, cramping, etc can be great for both quality of life and fertility.

The Research: Between 30 - 50% of people with endometriosis may experience infertility. And newer research suggests that as many as 30 - 70% of people with “unexplained infertility,” actually have endometriosis.

What you need to know about endo and infertility.

This is where it gets a little complicated!

In some people with endo, especially mild endo, fertility isn’t effected. Current studies seem to suggest IVF transfers with genetically tested embryos can work just as well for some people with endo as people without. But for others it can be a major factor in causing infertility and failed embryo transfers. There doesn’t seem to be a one-size-fits-all way to approach endo and fertility.

Historically, many fertility doctors used to say that unless endo was causing a pain issue, moving forward with the standard fertility treatments asap was probably best. Dealing with endo could wait.

Some doctors even told people not to treat endo, because a major surgery might “shock,” the body and hurt fertility. And if the endo was found on the ovaries, doing surgery on them would hurt ovarian reserve and function.

Sadly, more modern research shows much of this mindset is outdated in many cases. We now know that endometriosis is about more than tissue growths causing issues where they are. These lesions cause a cascade of systemic ripples that can interfere with reproductive function. These ripples include:

Chronic pelvic inflammation
Disrupted follicle growth
Luteal phase issues or progesterone resistance
Harmful conditions for sperm
Anti-endometrial (lining) immune changes (antibodies)
Lesions and blockages if the growth is on the fallopian tubes, in the uterine muscles, on the ovaries, etc

So taking time to treat endo isn’t an “either or” situation — either treat the endo or work on having a baby. It’s a BOTH are CONNECTED situation — at least for many people!

“Laparoscopic removal of endometrial tissue has been shown to boost the chances of getting pregnant. Women with an initial fertility rate of 2.4 percent saw the chance of conception increase to 30.7 percent within 36 weeks of the procedure. This improvement is similar to what’s expected from one round of IVF.”

When surgery isn’t the right fit.

If you don’t feel like laparoscopic surgery is the right fit for you and you’re TTC, the most expedited option might be to ask for a uterine biopsy and the Receptiva DX test. (I am in no way affiliated — I’m just sharing where the science is in 2024 and what people are using).

If this test is positive and indicates endometriosis, taking 2 - 3 months to suppress endometrial cycling (usually with Depot Lupron shots once a month or continuous birth control pills) can stop the endo from generating as much inflammation and causing harmful fertility ripples. You won’t be able to TTC during these suppression months, but immediately after you’ll have a better set-up to grow quality eggs, support implantation, etc. I think taking this window to regroup and work on mind body fertility can be a total WIN WIN!

Right now — at least where I work in the Midwest — this test and treatment is almost exclusively done for people who have had repeat embryo implantation failure with genetically tested embryos. I’ve seen it seemingly make a difference in several striking cases.

I started working with a woman who’s already had 3 unsuccessful embryo transfers with donor egg embryos that were also genetically tested. This wasn’t what you would expect in that situation! Because she had lots of signs of endometriosis I encouraged her to talk with her IVF doc about the Receptiva DX test. Her doctor agreed that it was worth trying, and her biopsy was positive. She took 3 months to do the Depot Lupron and her 4th transfer was a success. She just had her little girl a few months ago.

When it comes to the complexity of endometriosis, there are lots more nuances. But I hope this is a solid foundation for you to start thinking about whether endo is a factor in your own body and fertility journey. As a person with endo, a mom to a teenage daughter with endo, and a veteran fertility practitioner who has seen endo brushed off for way too long, I’m glad it’s starting to rise to more folk’s awareness. Below I’ve lsited some of my favorite resources and the studies I reference in this post.

Here’s to getting to the root and connecting ALL the dots!

Nicole

STUDIES AND MORE READING

The Endometriosis Foundation of America has a great testing and treatment info page with resources galore including specifics for BIPOC, LGBTQIA+. They also have their own social network for people with endo to connect and share info.

Endometriosis Association is an awesome advocacy and education group in the US.

The UK Myendosis is really user friendly site and provides lots of great info on endo.

Nancy’s Nook is the main patient-led endo website for excision surgery info including names of recommended surgeons who do excision surgery regularly.

Beating Endo is my favorite book to dive deeper into endo awareness and treatments.

Learn about the DotEndo blood test.

Explore the Ziwig Endotest saliva test.

Learn about Receptiva DX the endometrial biopsy test for endo and progesterone resistance.

Here’s a solid research overview on endo and infertility.

Finally, if you have endo and chronic digestive issues, it’s worth checking out this great IBS app called Nerva. It’s got fabulous research behind it, works better than elimination diets (which are so stressful), and I use it myself. I don’t get any money for referrals, but the link will give you a discount. I’m simply a big fan and have a provider code I can share to encourage others to give it a try.