https://www.sciencealert.com/endometriosis-should-be-reclassified-as-a-whole-body-disorder-experts-say

This sure would explain the constant joint pain/inflammation all over my body for years

This new study covers how endometriosis has all the eight hallmarks of cancer. How are we taking this information?

Weirdly enough, I'm actually feeling good.

EndoCyclic Therapeutics just received FDA clearance to begin human trials for a drug called ENDO-205, and it’s being described as a first-in-class, non-hormonal peptide treatment for endometriosis.

Instead of just suppressing hormones like current treatments, this is designed to target and eliminate endometriosis lesions directly. In preclinical studies, they reported actual lesion reduction and decreased inflammation.

This is huge for us and feels like a shift in the right direction!!

https://www.prnewswire.com/news-releases/endocyclic-therapeutics-announces-fda-clearance-of-investigational-new-drug-ind-application-for-endo-205-a-first-in-class-non-hormonal-precision-peptide-therapeutic-for-endometriosis-302721439.html

Shocker

https://www.nbcnews.com/health/womens-health/women-pelvic-symptoms-pain-doctors-gaslight-study-rcna205403

I am making this post because I have seen and commented on many others regarding a condition common in our community that occurs alongside endo. I am trying to both raise awareness, and prevent misinformation, misdiagnosis, and treatments that cause complications or irreversible damage.

The TLDR is No gyn should be diagnosing or treating pelvic congestion. It’s a vascular disease, the doctors are almost as misinformed about it as they are about endo, and the treatments used by gyns to treat PCS can be at best ineffective, at worst cause harm.

While pelvic congestion is a disorder that can spontaneously occur, there are many vascular specialists who feel that pelvic congestion is a misdiagnosis, and actually is a symptom caused by major underlying vascular issues. This is especially believed in the presence of endo where the condition manifests differently than the “typical” case that results from stress on the veins from things like multiple pregnancies.

The underlying conditions being found to cause atypical PCS like in those with endo are either May-Thurner Syndrome or Nutcracker Syndrome - and often both. These are both vascular compression disorders, where the vein is compressed (squished), and so not allowing blood to flow freely. This causes the blood to flow backward, veins to swell, and pain/symptoms to occur.

The symptoms have A LOT in common with endo, and the vascular specialist are finding that it is more and more common for people to have both. Since my diagnosis with MTS/NCS/MALS I have met many who, like myself, have had multiple excisions for endo and gotten only minimal relief - that’s because there were these underlying compressions! There are other vascular compressions as well that can affect the digestive system, cause frequent nausea, etc.

A person usually has multiple vascular compressions. Symptoms can vary from person to person, and all compressions include headaches, but in general:

-for May-Thurner (MTS), or compression of iliac vein: leg swelling, feeling of heaviness in the pelvis and legs, history of blood clots (I never had, not required), redness or tingling in the leg, low back pain, pain with bowel movements, pain with sex, butt and/or vagina lightning. Affects predominately left leg, but can also affect right leg. Can also cause GI symptoms like constipation or diarrhea, along with rectal bleeding (causes internal hemorrhoids that rupture and cause bleeding).

-for Nutcracker Syndrome (NCS), or left renal vein compression/entrapment: left flank pain, pain at the kidney, urine abnormality (blood or protein in urine, frequent UTIs or stones. Not everyone has this), visible varicose veins in the groin or legs, painful periods, back pain, pain with sex (after treating this, I finally had pain free sex for the first time in.my.life!!!). Can also cause GI symptoms such as constipation and nausea. Also known to cause vascular changes to the uterus that may give the appearance of adenomyosis, and cause heavy/painful periods. Can affect left ovarian vein, causing ovarian pain.

The other two major vascular compressions are:

-MALS (median arcuate ligament syndrome), where the ligament connecting the two halves of the diaphragm compresses the ceiliac artery and causes chest pain and digestive issues like nausea and vomiting, upper abdominal bloating (like endobelly, but above the navel), epigastric pain, and constipation/diarrhea. Breathing issues are also common - shortness of breath, easily winded, difficulty taking a deep breath. Also, since the autonomous nervous system is also affected, this compression is known to cause secondary POTS (postural orthostatic tachycardia syndrome), which can cause dizziness, lighheadness, heart palpitations, changes in blood pressure.

-SMAS (superior mysenteric artery syndrome), where the duodenum is compressed between arteries and causes nausea and vomiting, feeling full/early satiety, indigestion, and abdominal pain. People with SMAS are usually able to eat or drinks very little, if at all, before symptoms occur.

Hopefully seeing the immense overlap in symptoms, people can see how important it is to rule these out, and not attribute everything to endo.

Right now, many of these compressions are seen as “rare”, but many doctors feel they are simply under diagnosed. The vascular surgeon I go to saw so many people have these issues AND endo, so teamed up with the endo specialist at the hospital so they would know what to look out for.

Please, please do not make the same mistakes I did. Do not just assume everything is related to endo! The body is complex, and so little is known about any of these diseases. I am happy to answer any questions, but would prefer they start in comments so all can benefit from the info - you never know when someone has the same question!

EDIT: several folks had asked questions about diagnosis, so here’s that info:

Vascular compressions are usually diagnosed by either a vascular specialist/surgeon or interventional radiologist.

An MRA or CTA is usually one of the first imaging studies done. This takes a “snapshot” of the vascular system and organs. It’s also only in one position. That means it can actually miss some compressions. (Mine didn’t show, but my renal vein was shown on another study to be 70% compressed, and my iliac vein was >90%!!!)

Doppler ultrasound is another primary diagnostic tool - this is an ultrasound of the abdomen/pelvis (and sometimes legs) to look at the blood flow in key areas. Many people have things like venous insufficiency or some venous reflux that will show, and are completely within normal ranges (so don’t panic if you see that!).

Confirmation is usually then done via a dual procedure (venogram/IVUS)that’s done under twilight sedation. A tiny incision is made in the neck or groin, and a small sensor is inserted into the vein. Venogram takes xrays of the blood flow from within the body, and IVUS (intravenous ultrasound) measures the circumference of the veins to gauge compression, and also measures flow velocity - blood will flow slower before a compression and faster after.

Other tests can be done for the different compressions to determine a course of treatment, or to further confirm. For MALS, a celiac nerve block (a renal nerve block is done for NCS)is often done to confirm the pain is coming from the celiac nerves. When I had my renal nerve block the pain just vanished and I’d had always just been in so much pain that my brain couldn’t comprehend “no pain” and I panicked and was like “AAAAHHH!!! I’m paralyzed!!!” Thankfully, the doc and nurse understood, and gently poked me to show me I could, in fact, feel things - just wasn’t in pain. Then I just started sobbing (and told the nurse she was one lucky bitch if this is how she felt all the time! Lol). With my celiac block, I was instantly amazed that I COULD BREATHE! I had become so used to shallow breathing, it just had become my normal. I didn’t even know I had an issue until it was gone.

Edits for clarity and updates to info.

Link: https://asktia.com/article/endo-205-new-non-hormonal-endometriosis-treatment/?lid=20tz9ys4yifv&utm_source=braze&utm_medium=email&utm_campaign=80450+MEM_Tia-Insider+4-28-26

Any thoughts on this? Have you heard of this before? Are any of you involved in the trial? This seems promising, especially for those who are sensitive to hormones or can’t tolerate surgery.

Article text (Apologies if I missed any paragraph breaks after copying/pasting):

On March 23, 2026, a milestone arrived quietly but with enormous implications for women living with endometriosis. The FDA cleared an Investigational New Drug (IND) application for ENDO-205, a first-of-its-kind, non-hormonal treatment developed by EndoCyclic Therapeutics. For the estimated 190 million women and girls affected by endometriosis worldwide, this clearance signals something that has been missing for decades: a genuine shift in how the disease itself might one day be treated, not just managed.

For years, endometriosis treatment has largely relied on hormones to suppress symptoms or surgery to remove lesions, only to see the condition return. ENDO-205 is being developed to do something different: target and eliminate endometriosis lesions at the source, without altering the body's hormonal balance and without the operating room. It represents a new direction in precision women's health, and it is worth understanding exactly what it is and what it is not.

What is ENDO-205 and how does it work?

ENDO-205 is a precision peptide therapeutic, meaning it uses a small engineered protein designed to seek out and act only on diseased tissue. According to EndoCyclic Therapeutics, the compound is built on a proprietary platform that produces cell-permeating, pH-sensitive peptides that behave differently in healthy tissue versus diseased tissue.

The goal is to eliminate endometriosis lesions and the inflammation surrounding them, while leaving healthy tissue unaffected. Unlike current hormone-suppressing medications, ENDO-205 is designed to minimize hormonal manipulation, immune modulation, and systemic toxicity entirely.

EndoCyclic describes the underlying idea in accessible terms: the body already has mechanisms to identify and clear abnormal cells, but that process does not always function correctly in diseases like endometriosis. ENDO-205 is designed to help the body recognize what is out of place and respond. Research on this precision peptide approach represents over a decade of work supported by multiple NIH grants from the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

What does FDA IND clearance actually mean?

It is important to be clear about what this milestone is and what it is not. The FDA has not approved ENDO-205 as a treatment. What the FDA cleared is an Investigational New Drug application, which is the regulatory step that allows a company to begin testing a drug candidate in human clinical trials. Think of it as the starting line, not the finish.

IND clearance means the FDA reviewed enough preclinical safety and manufacturing data to permit the company to move forward with a Phase 1 clinical study. As reported by Contemporary OB/GYN, the planned Phase 1 trial will enroll healthy premenopausal women of reproductive age, with the primary focus on assessing safety and tolerability, not yet efficacy.

ENDO-205 is not currently available to patients. It has not been proven to work in humans yet. What this clearance confirms is that the scientific foundation is strong enough to begin that testing under regulatory oversight.

Why current endometriosis treatments fall short

To understand why ENDO-205 is generating so much attention, it helps to understand the limitations of what currently exists. Most medical treatments for endometriosis work by suppressing hormones, particularly estrogen, to reduce the growth and activity of endometrial-like tissue. This includes birth control pills, progestins, GnRH agonists such as Lupron, and newer GnRH antagonists like Orilissa and Myfembree.

These approaches can help manage pelvic pain and cramps, but they do not eliminate lesions or address the underlying biology of the disease. When treatment stops, symptoms often return. For women who cannot tolerate hormonal side effects or who want to conceive, options narrow considerably. Studies indicatethat current treatments carry recurrence rates exceeding 50% within one to five years. Surgery, the most direct approach, removes lesions but does not prevent them from coming back.

ENDO-205 is specifically designed to address this gap: a non-surgical, non-hormonal option that targets the disease itself rather than suppressing the entire hormonal system to control it.

What the preclinical data shows (and why it matters)

Before any drug can enter human trials, it must first demonstrate both a scientific rationale and acceptable safety in laboratory and animal studies. ENDO-205 has completed this stage. Preclinical studies showedelimination of endometriosis lesions and reduced inflammation, with no safety signals observed in GLP toxicology testing.

The program received a rare NIH Commercialization Readiness Pilot grant with a perfect impact score of 10, a distinction the NIH describes as reflecting the highest level of scientific innovation and research rigor. EndoCyclic has also been recognized as an NIH SBIR Success Story and has had its research presented at the White House.

These are meaningful signals, but they are preclinical signals. Results in animal models do not always translate directly to humans. The Phase 1 trial will be the first real-world test of whether ENDO-205 behaves as hoped inside the human body.

How is ENDO-205 different from any other endometriosis treatment in development?

Most investigational treatments for endometriosis still work within the hormonal framework, even if they represent improvements over older drugs. What distinguishes ENDO-205 is that it operates outside that framework entirely.

It is not a new way to suppress estrogen. It is not an immunotherapy. According to the company, ENDO-205 is designed to selectively act within diseased tissue, sparing healthy cells, without requiring any hormonal, surgical, or immune-based intervention. In the world of oncology, peptide-based approaches that target only abnormal cells have become increasingly established. Applying this kind of precision to endometriosis, a condition long treated with blunt hormonal tools, would represent a genuine shift in the therapeutic philosophy.

EndoCyclic is also developing a companion diagnostic tool, FemLUNA, an investigational imaging agent that would allow for more accurate, non-invasive detection of endometriosis lesions. Currently, laparoscopy, a surgical procedure, remains the gold standard for diagnosis. A non-invasive diagnostic paired with a non-hormonal therapeutic would transform the entire care pathway for this condition.

Who could benefit most from a non-hormonal endometriosis treatment?

Women who struggle most with current treatment options are often those who cannot use hormonal therapies due to side effects, contraindications, or personal preference. This includes women with a history of certain conditions, those actively trying to conceive, and those who have experienced bone density loss or mood-related side effects from GnRH-suppressing medications.

It also includes the many women who have had endometriosis surgery only to face recurrence. A disease-modifying treatment that could eliminate lesions without surgery and without hormones would represent a meaningful option for a population that has been historically underserved.

That said, ENDO-205 is not yet available to any patient. It is still in the early stages of clinical testing, and it will likely take several years before it could realistically reach approval and market availability.

What comes next in the ENDO-205 clinical trial process?

Following IND clearance, EndoCyclic will initiate a Phase 1 clinical study. Phase 1 trials are designed primarily to evaluate safety: what dose is tolerable, how the body processes and eliminates the drug, and whether any adverse effects occur in humans at different dose levels.

If Phase 1 results are positive, the program would move to Phase 2, which begins to assess whether the treatment actually works in women with the disease. Phase 3 trials involve larger populations and more direct comparisons before the FDA considers full approval. From IND clearance to potential approval, the full clinical development process typically takes many years.

What patients can follow is the progress: ClinicalTrials.govwill list the trial once it opens for enrollment. Staying informed is the best first step.

You don’t have to wait for "someday" to get support

ENDO-205 is a reason for genuine optimism. But it is also still years away from being an option for patients. Women who are living with endometriosis today, dealing with chronic pelvic pain, difficult periods, or suspected endometriosis, deserve care right now.

At Tia, your provider team offers a root-cause, whole-person approach to complex gynecological conditions. This includes specialized gynecological care for pelvic pain and inflammatory conditions, acupuncture as integrative support, advanced diagnostic guidance including imaging referrals, and primary care coordination for complex or multi-system conditions. Research shows that integrative approaches, including acupuncture for menstrual pain, can offer meaningful relief for women managing endometriosis symptoms while longer-term solutions continue to develop.

The future of endometriosis care is changing. In the meantime, you deserve thoughtful, personalized support today.

Hi everyone! We are endometriosis and pelvic pain researchers Dr. Paul Yong, Natasha Orr, Kiran Parmar, and Jessica Sutherland from the Endometriosis and Pelvic Pain Laboratory out of The University of British Columbia (UBC), Canada. We focus on clinical and basic science research related to endometriosis and pelvic pain.

Ask Us Anything about endometriosis and painful sex research!

A little bit about us:

Dr. Paul Yong (MD, PhD, FRCSC) is a Gynaecologist at the Centre for Pelvic Pain & Endometriosis in Vancouver, Canada and Research Director of the Endometriosis and Pelvic Pain Laboratory at UBC. His specialty is in pelvic pain, particularly endometriosis, painful periods, sexual pain, co-existing bladder and bowel problems, and pain related to the musculoskeletal system. You can find more information on our work here: https://yonglab.med.ubc.ca/ PROOF

Natasha Orr is a PhD candidate in the Reproductive and Developmental Sciences Program at UBC. Her research focuses on the pathophysiology of painful sex and endometriosis, specifically the role of central sensitization and cell mutations. PROOF

Kiran Parmar is a graduate student at the School of Population and Public Health at UBC and is a research assistant in the Endometriosis and Pelvic Pain Laboratory. Kiran’s work has focused on patient-centered knowledge translation through designing and creating online content for patients and their families. PROOF

Jessica Sutherland is a member of the Patient Research Advisory Board (PRAB) for the Endometriosis and Pelvic Pain Laboratory at UBC. She was diagnosed with endometriosis eight years ago via laparoscopic surgery and since joining the PRAB in 2017 has collaborated on seven research projects. PROOF

NOTE: We are researchers and will do our very best to answer your questions, but any information should not be considered as a substitute for medical advice, diagnosis or treatment from your direct care provider.

To learn more about endometriosis and painful sex, check out this new educational resource: https://endopain.endometriosis.org/

We will be taking questions on TODAY September 23rd 2021 and will check at three times throughout the day.

9am - 10am PST

12pm - 1pm PST

4pm - 5pm PST

UPDATE 1: Thank you for all the amazing questions! We are touched and overwhelmed by the response. We are taking a little break now but will be back at noon PST to get back to it. Please upvote the questions you like best!

UPDATE 2: We are back! Well, we got back 30min ago but were so enthralled in the questions that we forgot to update the post. Here until 1pm PST and loving it.

UPDATE 3: There have been so many questions we needed to bring in another team member. Please welcome Anna! Thanks for stepping in on short notice.

Anna Leonova is a PhD student who works with Dr. Yong and Dr. Anglesio on malignant transformation of endometriosis novel disease models, and cell death resistance mechanisms. Anna has always been passionate about both endometriosis research and raising awareness due to her first-hand experience with the disorder. PROOF

UPDATE 4: WOW. This is fantastic but we need another break. Keep those upvotes coming! We are watching and will be back at 4pm PST to answer as many more as we can.

UPDATE 5: We are back for our last round and will try to answer as much as we can before the day ends.

EDIT: And we are done! Thank you so much to everyone who came out to engage with us. The questions were amazing and we wish we had more time to get to them all. Apologies to those we were unable to get to, we were a bit taken aback at the overwhelming response! If you want to know more about our work check out https://yonglab.med.ubc.ca/ . For the latest on Sex, Pain & Endometriosis follow us @sexpainendo

Thank you for coming out! Our experts are closed for comments and will not be able to answer any more that come in. We had a great time and hope you'll have us back in the future!

I'm sure some of you are already aware of the connection between estrogen and nickel, however I occasionally come across someone who hasn't yet discovered the link and is struggling with both conditions, so I thought I would share some research in the hopes that it helps even one person to draw parallels between their symptoms.

Nickel is a metalloestrogen - these are metals that mimic or disrupt the action of estrogen by attaching to estrogen receptors, and activating estrogen signalling pathways. Other metalloestrogens include cadmium, aluminium, antimony, arsenic, lead, tin, copper, chromium, mercury, and cobalt (among others). Even in the absence of estradiol, metalloestrogens have been found to increase the risk of breast cancer due to their ability to activate estrogen receptors (particularly estrogen receptor alpha). This study found that nickel and cadmium were found in human breast tumour tissues (as well as hair, urine and blood), and that patients with breast cancer have significantly higher levels of these metals than those without it.

This is why nickel sensitivity commonly occurs in those with endometriosis, and vice versa - both conditions are estrogenic in nature. Endo is dependent on high estrogen availability, and treatments are intended to decrease production of estrogen at the ovaries (such as with the Mirena coil), improve estrogen metabolism (with supplements like DIM, I3C and CDG), and/or stimulate natural progesterone production. This study and this study both found higher levels of nickel in the bloodstream of endometriosis patients, compared to those without it.

If your nickel sensitivity seems worse at certain times in your cycle, you're not imagining it. Estrogen degranulates mast cells and increases histamine production (while histamine upregulates estrogen in a positive feedback loop), which can cause a worsening of chemical and environmental sensitivities, particularly during ovulation when estrogen peaks. On the other hand, progesterone (which rises substantially during pregnancy) counteracts the negative effects of estrogen by stabilising mast cells and increasing DAO production, which is necessary for histamine metabolism - this is why some people have an improvement of allergies/sensitivities and other high-estrogen conditions (including endometriosis) while they're pregnant.

Endometriosis may be worsening your nickel sensitivity, but the same can also be said in reverse. Both are an indication that you have a high exposure to estrogen - this might be caused by a high natural production, impaired ability to metabolise it efficiently, ingestion of flax/soy and other estrogenic foods, or excessive exposure to estrogens in the environment (such as metalloestrogens or BPA). You may find that if you treat the estrogen issues, then the endometriosis and nickel sensitivity both improve.

Editing to add - nickel is absorbed in several ways: - Through skin contact from jewellery, makeup, keys, coins, buttons/zippers etc - Via the digestive tract from dietary sources, such as chocolate (especially dark), certain nuts, soy products, legumes/pulses, oats, whole grains, shellfish, spinach/kale, and anything canned (due to leaching from the packaging) - From dental or other medical implants/devices such as joint replacements, orthodontic braces, and the NiTi fixed retainers that are used to permanently keep teeth in place afterwards (dental sources in particular have been linked with facial eczema and inflammation of the mouth/throat) - Via the lungs from metalworking and other industrial activities

I'm no expert and I don't have all the answers, but if I can help even one person make sense of their symptoms then this post has done its job. Please feel free to add your thoughts!

Can we talk about these two papers?

https://pubmed.ncbi.nlm.nih.gov/9660426/

https://www.fertstert.org/article/S0015-0282(01)03088-6/fulltext#

Noting mechanical dysfunction of the GI tract in all patients seems like a big finding regarding endo, yet it seems like no researchers or doctors are talking about it in the last 20 years.

"All 50 women showed a characteristic motility change (ampulla of Vater-duodenal wall spasm, a seizure equivalent of the enteric nervous system)."

I know so many women with endo have GI symptoms so it's not surprising.

I know these are small studies, but I can't seem to find any other information at all about this.

What do you think? I'd love to hear your thoughts and talk more about this.

Found this study which I thought was interesting! https://academic.oup.com/humrep/article/doi/10.1093/humrep/deaf101/8159596

“Endometriosis, affecting over 190 million people worldwide, displays clinical and molecular profiles that closely resemble malignancies. Framing endometriosis as a “cancer-mimicking” disease highlights why current models, diagnostic tools, and empirical therapies fail to adequately address prolonged diagnostic delays, high recurrence rates, and inconsistent treatment outcomes. This perspective advocates a structured translational approach, integrating meticulous preclinical validation, phase-appropriate clinical trials, and rigorous safeguards in artificial intelligence and biomarker development, to bridge critical gaps in understanding disease biology. Such a bidirectional pipeline, guided by real-world clinical feedback and clear mechanistic insights, aims to optimize pain management, fertility preservation, and overall disease control. Reconceptualizing endometriosis as a systemic condition with cancer-mimicking features underscores the urgency and the opportunity to develop targeted therapies beyond traditional hormonal suppression and empirical surgeries, ultimately enhancing patient quality of life worldwide.”

Anyone else read this? Link in the comments.

LINK TO ARTICLE: https://www.annals-research-oncology.com/wp-content/uploads/2025/07/Martinelli_AnnResOncol_Vol5_no2_2025-2.pdf

I thought I would share this here. It’s a really fascinating read. And it mimics a lot of discussions I’ve seen on here.

It talks about how current therapies and treatments aren’t adequate enough. And why some of us have more pain, and don’t respond to surgery the way other people do.

If you don’t want to read through the entire thing— I’ll quote the abstract here.

“Endometriosis, defined by the presence of endometrial-like tissue beyond the uterine cavity, afflicts over 190 million young women worldwide and often significantly reduces quality of life. Despite being historically classified as a benign gynecologic disorder, endometriosis can mimic cancer in imaging findings, serum tumor markers, and molecular signature.

Increasing evidence suggests endometriosis encompasses multiple biologic subtypes rather than representing a single uniform disease, which may explain divergent presentations, from extensive lesions in some patients with minimal pain to smaller implants in others with severe symptoms. Current management relies heavily on empirical hormonal therapies, repeated surgeries, and symptomatic treatment.

Inadequate diagnostic tools and incomplete mechanistic understanding contribute to misdiagnosis, delayed intervention, and suboptimal outcomes. Without deeper elucidation of its complex biology, especially at the molecular level, substantial therapeutic breakthroughs will likely remain elusive.

Notably, pathways commonly implicated in malignancy are aberrantly activated in ectopic endometrial tissue, driving proliferation, angiogenesis, and immune evasion. To address heterogeneous endometriosis phenotypes, a rigorous translational framework is essential. Through such structured investigation, novel data and non-hormonal therapies targeting core molecular events could emerge, reducing both protracted diagnostic timelines and lowering the incidence of overtreatment.

In recognizing endometriosis as potentially comprising distinct pathologies under one umbrella, the field may advance truly individualized, biology-guided interventions.”

https://www.theguardian.com/society/2025/apr/05/major-endometriosis-study-reveals-impact-of-gluten-coffee-dairy-and-alcohol?CMP=Share_iOSApp_Other

It doesn’t really share anything new - plenty of us have tried cutting out or limiting certain foods to control symptoms - but it is nice to see this recognised in research!

I also really appreciated this description of endo:

“Endometriosis occurs when cells similar to those in the lining of the womb grow in other parts of the body. It affects one in 10 women of reproductive age in the UK.

However, there is very little research into the causes of the disease or how to treat it – beyond surgery, which is often only a short-term fix, or managing symptoms through hormonal contraceptives like the pill, which many women dislike because of side effects. It takes an average of almost seven years for women to receive a diagnosis of endometriosis due to lack of awareness about the disease.”

Have you ever been told that pain will lessen after having a baby? Because that was what I had been told when I was younger.

From the survey of patients with endometriosis, the researchers from University of Adelaide found that more than 56% (1892 out of 3347) have been told this. More than 89% of them said this advice came from healthcare professionals. I will link the study here: https://bmcwomenshealth.biomedcentral.com/articles/10.1186/s12905-023-02794-2

This advice is harmful because there is no evidence at all that pregnancy will solve endo pain. Negative impacts ranged from planning for pregnancy, hastening the making of major life decisions, eroding trust with healthcare professionals, worsening mental health and straining relationships.

https://news.cuanschutz.edu/news-stories/pcos-new-name?utm_campaign=PMOS&utm_source=reddit&utm_medium=social

Hi guys, whilst resting up in bed recovering from surgery I was made aware that BBC have brought out an interesting documentary film today! It's called 'Emma Barnett: Fighting Endometriosis'

From what I gather, it's going into the misogyny of women's health care surrounding Endometriosis! I'm going to give it a watch now, but thought I'd let you all know! Sending love to all the warriors 🫶

This article suggests three different anatomical forms with three molecular endotypes - each type presenting different symptoms, and response to surgery, and to hormonal treatments.
The review mainly discusses:

1. Ovarian endometriosis
2. Peritoneal endometriosis
3. Deep infiltrating endometriosis (DIE)

It also describes emerging molecular/biological endotypes, including:

1. Inflammatory-dominant phenotypes
2. Fibrotic phenotypes
3. Hormone-resistant phenotypes

*it doesn't mean that a patient can only have one type.

reference: https://www.mdpi.com/1422-0067/27/2/908

https://www.biospace.com/press-releases/endocyclic-therapeutics-announces-fda-clearance-of-investigational-new-drug-ind-application-for-endo-205-a-first-in-class-non-hormonal-precision-peptide-therapeutic-for-endometriosis Came across this, interesting shift away from hormone-based treatments. Might be promising.

Article link is here: https://www.bbc.co.uk/news/articles/cd9l533k9gwo

Hi! Diagnosed with Endo in 2019, still recovering from two surgeries here, married to a doctor. He sent me this article the other day and explained how fantastic this news is, so I wanted to share it here.

They're finding new mRNA markers for early stages of Endo that can be diagnosed with a regular blood test! This is especially helpful for girls, who can maybe catch the disease before it spreads into real pain and tissue growth.

But it's not just good news for girls; women in their 30s were the initial subjects! We carry biomarkers of altered mRNA (I won't say "damaged," but that's the simplistic way to describe it). The idea is to catch it early enough to avoid surgery for the majority of Endo patients, which would have meant a great deal to me before I lost my uterus.

These things take time, and I know everyone here needs relief now. But one of the reasons I was always afraid to have a biological daughter was the constant terror that she might inherit my Endo, as I likely inherited it from both my grandmothers, who each had hysterectomies in their 20s. Now, for those of you lucky enough to have biological daughters, and for young girls everywhere, there is some hope on the horizon.

Not sure if this is common knowledge or not. However on Polish news they are reporting that scientists found a way of detecting endometriosis without surgery!

In the next month I believe it will be available from Poland in private clinics costing around 2,000PLN (approx $480 / £386 ) and UK are allegedly interested in this product. However I very much doubt NHS would be offering this to patients?

I don’t have much more Information as I can’t seem to find anything recent being posted online but that is what they’re reporting on Polish TV.

However this link provides more Information;

https://www.wum.edu.pl/en/node/17626

Has anyone else heard about this?

Related article: https://iquitsugar.com/blogs/articles/an-all-too-familiar-tale-of-how-marilyn-monroe-s-endometriosis-was-swept-under-the-rug?srsltid=AfmBOooS0c5zKeuouK-xYPMHWZqZTTblpE5S29oxLRoqV-HWppaffthJ

It was surprising to me! One of the most memorable women in history suffered greatly from endometriosis, in a time where little or no options were available. Such a perspective and very comforting as I feel like my body is some alien minefield of pain and symptoms!

Hey! This is a genuine question. I have gone to a deep dive on research on endometriosis because I got diagnosed. Just for context, I am a biologist and I have published work and currently a researcher (I love reading articles and basically: a nerd). From my reading, there is too limited information just to conclude that endometriomas mean severe endo. Why are we telling this to people? I tried to pin point who said this but I couldn't completely. I did however, come across many people who said it wasn't the case for them (up to 2 endometriomas and no endometriosis patches). So, if anyone has more information on this, I would love to learn more! Thanks!

BTW, you can absolutely conclude from most studies that severe endo will most likely present endometriomas... but not really the other way around. 😕

Hey what do you guys think about the research into endometrial cells suggesting that it’s not clinically correct to call it tissue from the uterine lining or even related to the uterus at all. Also the research into it being related to immune system dysfunction almost similar to cancer.

I was always taught it was my uterine tissue so it may be new for me?

Also not new news but endo can be found in men https://pmc.ncbi.nlm.nih.gov/articles/PMC5833878/

My statement comes from this video And she has referenced these research articles that I have tried my best to find

https://www.instagram.com/reel/DHgnrRFxxhH/?igsh=MWtpa3Y3MGtlaHVrbA==

I’ll also message the Instagram person to post the exact articles she used.

Articles

https://www.mdpi.com/journal/ijms

https://www.nature.com/articles/s41588-024-01873-w

https://www.mdpi.com/journal/ijms/special_issues/4H0595OWC4

https://www.frontiersin.org/journals/microbiology/articles/10.3389/fmicb.2025.1521216/full

Do any of your doctors work within this new pain theory where they’re saying if anybody experience is chronic pain for more than three months they have significantly increase their chances of lifetime chronic pain? Because pain is just in the brain (doesn’t the brain control everything?) they just want to send us to pain therapy where we can learn to cope with the pain. They’re saying an overactive nervous system is what causes chronic pain and even ancestral and generational trauma or prenatal trauma causes a lifetime of chronic pain and calming the overactive nervous system is the only fix available.

But then I went to my PCP to talk to her and she’s never heard of this and she doesn’t know anything about that research…

I also went to pain management to ask about generational / ancestral trauma, and where they can refer me to for that and they’re saying they don’t know anything about this either…

I’m confused. So what are we supposed to do when endometriosis surgeon is saying something completely different from the rest of my specialist?

Is this just a fad or is this where every endometriosis surgeon is going to end up? I even took a class with pelvicpain.org like my endometriosis surgeon told me to and they said they don’t even recommend diagnostic laparoscopy anymore because the recurrent pain rate is too high-It’s not considered successful…