Endometriosis, infertility and IVF – Reddit’s top 17 questions, answered

Trying to conceive while navigating endometriosis can feel like a maze, especially when you’re deep in the online chat threads, deep-diving IVF or unexplained infertility. 

It’s a huge topic on Reddit, we’re sure you’re aware. See threads R/IVF and R/TryingForABaby for more – we just searched both for endo – and keep reading here for the biggest questions, answered by the expert team at ReceptivaDx™. 

Here for advanced testing? ReceptivaDx is a unique test, designed to identify leading causes of unexplained infertility in a single sample including endometriosis, progesterone resistance, and endometritis. It includes BCL6, a marker that identifies uterine lining inflammation most often associated with asymptomatic (silent) endometriosis. 

Picking up with their team, we’ve put Reddit’s top chats and queries to the panel for cutting-edge insight. Here’s everything to know, and why the Receptiva test might end up being part of your next workup.

1. Can you have endo, but without the ‘classic’ symptoms?

Absolutely. Endometriosis can be silent – or present subtly. Even if you don’t experience severe pain, many women are affected without realizing it. Around 1 in 10 women have endometriosis, and symptoms often overlap with other conditions, which can delay diagnosis.

Symptoms outside of ‘classic’ fertility concerns may include:

• Undiagnosed pelvic or abdominal pain
• Family history of endometriosis or chronic pelvic pain
• Pain during or after sex
• Recurrent bladder or bowel discomfort
• High BMI combined with non-specific symptoms such as anxiety, depression or fatigue

For a more comprehensive list of symptoms, visit icarebetter.com.

2. I’m TTC naturally – when should I start testing for endo?

Testing decisions often hinge on your symptoms and fertility history. If your only concern is infertility, or you’ve experienced two or more miscarriages, these are still signals that testing could be worthwhile.

Even if you’re not ready to see a reproductive endocrinologist, an OB can perform a standard fertility workup including imaging, blood work, and – if indicated – a ReceptivaDx test for BCL6. Incorporating BCL6 testing early can help identify uterine inflammation caused by silent endometriosis, before pursuing more invasive or costly fertility interventions.

3. If infertility is “unexplained,” why wouldn’t we test for endometriosis?

Unexplained infertility is an incredibly frustrating diagnosis, and data shows that nearly 50 per cent of women with unexplained infertility test positive with ReceptivaDx. Further to this, up to 40 per cent of IVF failures are linked to undiagnosed endometriosis.

Adding ReceptivaDx to your fertility workup can help identify inflammation-related implantation issues before investing in IVF, IUI, or other interventions.

4. Is spotting a sign of endometriosis?

Spotting alone isn’t considered a reliable symptom unless accompanied by other indicators like dysmenorrhea.

5. Can endo be ‘missed’ during fertility testing?

Yes – endometriosis can be tricky to detect. Standard ultrasounds may miss deep infiltrating lesions or small implants. Many women only discover endometriosis years into their fertility treatment. 

For more insight, catch up with our podcast mini series featuring Dr. Mona Orady, MD, FACOG – Challenging the Endo status quo: pain, fertility & diagnosis myths.

6. My Receptiva test came back ‘elevated’ – do I have endo?

Let’s break this down, depending on your situation. 

Fertility patients:

• a positive BCL6 result indicates inflammation of the uterine lining, often caused by endometriosis.
• effective approaches include hormone treatment to suppress inflammation or laparoscopic surgery to remove the tissue. Removing endometriosis around the endometrial lining has also proven to increase the chances of natural conception, even without IVF.

Even minimal endometriosis can impact IVF success due to progesterone resistance, which prevents the uterine lining from properly supporting embryo implantation. Inflammation is most commonly caused by endometriosis but can also arise from chronic endometritis – both detectable through ReceptivaDx using BCL6 and CD138 markers.

If negative, endometriosis is unlikely to be causing your infertility, and ruling it out can help clear the way ahead for other areas of investigation. 

Non-fertility patients

If you test positive and are not currently trying to conceive, next steps depend on your personal objectives. You may wish to: 

• use our tool to find an endometriosis specialist for an initial consult, and to help you build out a lifestyle plan. A good specialist will help counsel you on your options including managing your symptoms without surgery, even if suspected. 

Creating a “team” of practitioners may be the first solution for many, including a medical endo specialist, pelvic floor therapist, anti-inflammatory diet nutritionist and acupuncturist.

• begin hormone treatment to reduce the pain. There are many different FDA-approved drugs in this category – again, use our tool above to find a specialist who can help direct you

look at laparoscopic surgery to remove the problematic tissue and potentially identify other related conditions like adenomyosis, or polyps

7. What if only a small amount of endometriosis is found?

Even stage 1 endometriosis can affect fertility. In IVF patients who tested positive with ReceptivaDx, surgical removal of minimal endo improved next-transfer success rates to over 64 per cent.

As we’ve touched on already, the likely reason comes down to something called progesterone resistance, a phenomenon linked to both implantation failure and recurrent pregnancy loss. Progesterone resistance causes changes to the uterine lining, preventing the hormone progesterone from doing its essential job during the luteal phase of the menstrual cycle – preparing the uterine lining to support an embryo.

Because progesterone resistance is closely associated with inflammation of the uterine lining (most often caused by endometriosis), it’s important to either suppress or remove the endometriosis when trying to conceive. 

In a smaller number of cases, this inflammation may instead be caused by endometritis, a chronic bacterial infection of the uterine lining. Both conditions can be identified through ReceptivaDx, which uses two markers (BCL6 and CD138) from a single biopsy.

Not here for fertility?

If pain is a primary concern, BCL6 is still a super-helpful marker, in your diagnosis and treatment journey. 

BCL6 is an inflammatory marker, and endometriosis is a chronic inflammatory condition driven by estrogen. In women without endometriosis or other inflammatory conditions, BCL6 should not be present. 

Testing is carried out during the luteal phase of the menstrual cycle (days 15-28), when the difference between a healthy lining and one affected by endometriosis is most pronounced, allowing for a high level of diagnostic accuracy. Again, identifying even stage 1 endo here can help move diagnosis forward, and your treatment options.

8. What happens if endometriomas have formed?

Surgery can manage this easily and endometriomas are usually picked up in an OB’s office. However, many cases of endo (the primary cause) aren’t readily identifiable from scans, so testing can help speed up the diagnostic process.

9. When is laparoscopic surgery recommended for fertility?

The answer often depends on the specialist you see. There’s a long-standing reality in medicine that clinicians tend to recommend what they’re trained to do. For example, if you consult a minimally invasive gynaecologic (MIG) surgeon, surgery may be suggested early on.

A more balanced, holistic approach is to seek out a specialist who can offer surgery if needed, but also talks you through alternative options, whether that’s medical management, monitoring, or a combination of treatments. Our find a specialist tool is designed to help you explore different philosophies and approaches – there are many! 

Bottom line: take the time to do your research, but prioritize finding an experienced endometriosis specialist. In the wrong hands, surgery may miss endometriosis entirely or be performed in a way that could impact future fertility, so expertise really matters here.

10. Is surgery risky with low ovarian reserve (or only one ovary)?

In these cases, hormone suppression may be preferable to surgery. In skilled hands, laparoscopic removal can preserve fertility, though severe endometriosis sometimes necessitates more extensive procedures.

11. Can endo ever lead to losing an ovary?

Yes. Endometriosis can, in some cases, affect the ovaries to the extent that more extensive surgery is required. However, because women have two ovaries and fallopian tubes, there is often still a way to preserve egg supply and support future fertility.

12. If endometriosis is treated, can it come back?

Yes – frustratingly, it often does. Endometriosis is a chronic, autoimmune-related condition, and recurrence is common. 

If it has been at least 18 months since your last pregnancy and you have a history of endometriosis, repeating your testing with ReceptivaDx can be helpful to check for any renewed inflammation before trying to conceive again.

13. And if it’s removed, why do some people still struggle to conceive?

The causes of infertility are often complex and not always easy to pinpoint. In some cases, particularly between the ages of 38-45 and above, egg quality can play a significant role. In others, it may be linked to male factor infertility or underlying chronic conditions that can affect pregnancy rates.

14. Does endometriosis affect egg quality?

The short answer is yes – endometriosis can affect egg quality. This is typically due to inflammation, oxidative stress and changes to the ovarian environment, particularly when the ovaries are directly involved.

That said, many women with endometriosis still produce healthy eggs. In fact, fertility challenges are often more closely linked to implantation and the condition of the uterine lining than to egg quality alone.

15. What if endometriosis has blocked my fallopian tube?

In many cases, surgery can remove the blockage and restore tubal function. If both tubes aren’t fully functional, fertility treatment options like IVF allow eggs to be retrieved directly from the ovary and fertilized in the lab, bypassing the tubes altogether.

16. I’ve had a couple of miscarriages, but no other symptoms – should I test?

Yes – the first step is a standard fertility workup, which should include a ReceptivaDx test alongside an HSG x-ray, imaging and blood work. According to a retrospective analysis of over 2,000 patients who presented with repeat pregnancy loss, around 50 per cent tested positive for BCL6.

17. I want to get pregnant – if endo is confirmed, what are my next steps?

This will depend on your individual situation. There are multiple options available – including surgery, medical management, IVF (including tailored embryo transfer protocols) – and the path you take will vary based on your symptoms, fertility goals and where you are in your journey.

Wrapping it up

Endometriosis and infertility are deeply interconnected, and silent inflammation is often overlooked. Testing with ReceptivaDx™ can provide clarity, guide treatment, and ultimately improve your chances of conception, naturally or through IVF.

Next on your list: 6 things an endometriosis specialist wants you to know about your pelvic pain – from diagnosis, to treatment options