
Curcumin’s effect on endometriosis
Endometriosis is an inflammatory disorder, and inflammation can lead to increased pain, fatigue, and general feelings of unwellness (Nothnick & Alali, 2016). It has been shown that “endometriotic lesion removal significantly alters the inflammatory profile both locally and systemically in women with endometriosis” (Monsanto et al., 2016). While some of us work on achieving that expert excision of endometriosis lesions, we look for things that might potentially help in the meantime. One thing we hear about often in the media these days is turmeric.
Curcumin has been mainstreamed for its effects on inflammation. Curcumin is the “major bioactive component of the spice herb turmeric…used traditionally in Indian and Chinese medicine and widely consumed in the Asian diet” (Jager et al., 2014). While there are not many strong studies to support its effect on endometriosis, some studies have indicated that it can lower inflammation, reduce the growth of new blood vessels (angiogenesis), act as an antioxidant, and induce apoptosis (programmed cell death in damaged cells).
For example, Vallée and Lecarpentier (2020) report that “curcumin can downregulate inflammation and [oxidative stress] in endometriosis” and suggest that “future clinical trials are needed to better investigate and highlight the role of curcumin in endometriosis.” Balan et al. (2021) further reports that “in endometriosis, curcumin reduced the number of endometriotic cells through the modulation of estrogen levels” as well as has anti-angiogenic function, anti-oxidative potential, and can induce apoptosis. Kamal et al. (2021) reports that “in vitro and in vivo studies reported the positive effects of curcumin in alleviating endometriosis through anti-inflammatory, anti-proliferative, anti-angiogenic and pro-apoptotic mechanisms.” Kamal et al. (2021) further comments that:
“Some studies found considerable therapeutic effects, whereas others found no effect. However, none of the investigations found curcumin to be harmful. Curcumin clinical trials in endometriosis and ovarian illness are still scarce; thus, future studies need to be conducted to confirm the safety and efficacy of curcumin before it could be offered as a complementary therapy agent.”
The formulation of curcumin is important as “the potential health benefits of curcumin are limited by its poor solubility, low absorption from the gut, rapid metabolism and rapid systemic elimination….A formulation of curcumin with a combination of hydrophilic carrier, cellulosic derivatives and natural antioxidants significantly increases curcuminoid appearance in the blood in comparison to unformulated standard curcumin” (Jager et al., 2014). While there is not strong evidence to support its use in endometriosis, it shows some promise in battling the effects of inflammation from endometriosis until the lesions can be removed.
Is there an endometriosis Diet?
References
Balan, A., Moga, M. A., Dima, L., Dinu, C. G., Martinescu, C. C., Panait, D. E., … & Anastasiu, C. V. (2021). An Overview on the Conservative Management of Endometriosis from a Naturopathic Perspective: Phytochemicals and Medicinal Plants. Plants, 10(3), 587. Retrieved from https://www.mdpi.com/2223-7747/10/3/587/htm
Jäger, R., Lowery, R. P., Calvanese, A. V., Joy, J. M., Purpura, M., & Wilson, J. M. (2014). Comparative absorption of curcumin formulations. Nutrition journal, 13(1), 1-8. Retrieved from https://nutritionj.biomedcentral.com/articles/10.1186/1475-2891-13-11
Kamal, D. A. M., Salamt, N., Yusuf, A. N. M., Kashim, M. I. A. M., & Mokhtar, M. H. (2021). Potential Health Benefits of Curcumin on Female Reproductive Disorders: A Review. Nutrients, 13(9), 3126. Retrieved from https://www.mdpi.com/2072-6643/13/9/3126
Monsanto, S. P., Edwards, A. K., Zhou, J., Nagarkatti, P., Nagarkatti, M., Young, S. L., … & Tayade, C. (2016). Surgical removal of endometriotic lesions alters local and systemic proinflammatory cytokines in endometriosis patients. Fertility and sterility, 105(4), 968-977. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4851862/
Nothnick, W., & Alali, Z. (2016). Recent advances in the understanding of endometriosis: the role of inflammatory mediators in disease pathogenesis and treatment. F1000Research, 5. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4760268/pdf/f1000research-5-8083.pdf
Vallée, A., & Lecarpentier, Y. (2020). Curcumin and endometriosis. International journal of molecular sciences, 21(7), 2440. Retrieved from https://www.mdpi.com/1422-0067/21/7/2440/htm

Hysterectomy and endometriosis
A hysterectomy is not a cure for endometriosis; however, many people with endometriosis also experience problems with their uterus or ovaries (such as adenomyosis, fibroids, ovarian cysts, and other conditions that can contribute to chronic pelvic pain) that could benefit from removal of the uterus and/or ovaries. For example, adenomyosis and endometriosis have been found together anywhere from 21.8% to 79% of the time (Antero et al., 2017; Di Donato et al., 2014; Kunz et al., 2005). Both endometriosis and fibroids have been found together in 12-26% of patients, although one small study found both in 86% of the patients studied (Huang et al., 2010; Nezhat et al., 2016; Uimara et al., 2011).
However, the benefits versus the risks of removal of the uterus and especially the ovaries must be weighed carefully. For some of the effects of long term low estrogen see here. Using a hysterectomy to treat endometriosis alone may still leave you susceptible to continued symptoms and other problems from remaining lesions [one example: hydronephrosis from endometriosis left around ureters (Bawin, Troisfontaines, & Nisolle, 2013)]. For more on endometriosis persisting after a hysterectomy see here.
- “The main result of our study is somewhat surprising and contrary to the common notion that hysterectomy, as a last measure, effectively relieves endometriosis-related pain. Nevertheless, the results are in line with two other national register studies on postoperative pain and patient-reported outcomes. Hysterectomy is often considered the last option to treat endometriosis, as the procedure by its very nature ends reproduction. If hysterectomy does not decrease the need for analgesics postoperatively, the effectiveness of the procedure as an integral, albeit final, stage of endometriosis pain management becomes doubtful, however.” (Brunes et al., 2021)
- “Persistent or recurrent endometriosis after a total abdominal hysterectomy and bilateral salpingo-oophorectomy (TAH BSO) has been reported by several investigators.” (Hasty & Murphy, 1995)
- “According to literature, there are no randomized controlled trials for hysterectomy as the treatment for endometriosis.” (Bellelis, 2019)
- “Endometriosis which is not removed at the time of hysterectomy and bilateral salpingo‐oophorectomy may represent after a variable time interval with many or all of the symptoms which prompted the original surgery. This tissue can be highly active and responsive to exogenous hormonal stimulation. In the presence of troublesome symptoms, excision of residual endometriosis may be effective and should be considered.” (Clayton et al., 1999)
- “A high recurrence rate of 62% is reported in advanced stages of endometriosis in which the ovaries were conserved. Ovarian conservation carries a 6 fold risk of recurrent pain and 8 folds risk of reoperation. The decision has to be weighed taking into consideration the patient’s age and the impact of early menopause on her life style. The recurrence of endometriosis symptoms and pelvic pain are directly correlated to the surgical precision and removal of peritoneal and deeply infiltrated disease. Surgical effort should always aim to eradicate the endometriotic lesions completely to keep the risk of recurrence as low as possible.” (Rizk et al., 2014)
- “Studies have showed that the growth and progression of endometriosis continue even in ovariectomized animals.” (Khan et al., 2013)
- Read more here: “Endometriosis persisting after hysterectomy and bilateral salpingo-oophorectomy: Removing the disease, not organs, is key to long-term relief”: http://endopaedia.info/treatment21.html
References
Bellelis, P. (2019). 2607 Hysterectomy in Women with Endometriosis. Journal of Minimally Invasive Gynecology, 26(7), S177. Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465019307393
Brunes, M., Altman, D., Pålsson, M., Söderberg, M. W., & Ek, M. (2021). Impact of hysterectomy on analgesic, psychoactive and neuroactive drug use in women with endometriosis: nationwide cohort study. BJOG: An International Journal of Obstetrics & Gynaecology, 128(5), 846-855. Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.16469
Clayton, R. D., Hawe, J. A., Love, J. C., Wilkinson, N., & Garry, R. (1999). Recurrent pain after hysterectomy and bilateral salpingo‐oophorectomy for endometriosis: evaluation of laparoscopic excision of residual endometriosis. BJOG: An International Journal of Obstetrics & Gynaecology, 106(7), 740-744. Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/j.1471-0528.1999.tb08377.x?fbclid=IwAR04aFoLsukqsYutNPNXtJNZpKLNEJbgOOon334NW8D7wvwzZMWaS2YaZts
Hasty, L. A., & Murphy, A. A. (1995). Management of recurrent endometriosis after hysterectomy and bilateral salpingo-oophorectomy. In Endometriosis (pp. 189-192). Springer, New York, NY. Retrieved from https://link.springer.com/chapter/10.1007/978-1-4613-8404-5_18
Khan, K. N., Kitajima, M., Fujishita, A., Nakashima, M., & Masuzaki, H. (2013). Toll‐like receptor system and endometriosis. Journal of Obstetrics and Gynaecology Research, 39(8), 1281-1292. Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/jog.12117
Rizk, B., Fischer, A. S., Lotfy, H. A., Turki, R., Zahed, H. A., Malik, R., … & Herrera, D. (2014). Recurrence of endometriosis after hysterectomy. Facts, views & vision in ObGyn, 6(4), 219. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286861/
See https://icarebetter.com/learning-library/related-conditions/

Endometriosis: Impact on Work
We see time and again the impact the symptoms of endometriosis have on daily life. Regarding work and productivity, researchers found that people with endometriosis reported “17.1% of work time missed, 41.8% impaired work ability, 46.5% overall work impairment, and 41.4% activity impairment” with the greatest effect of fatigue and productivity impairment on those in their 30’s (Soliman et al., 2021). Another study reports that persons with endometriosis were “less often able to work in their desired profession than women from the control group…and they had to take health-related limitations into consideration in their career decisions to a significantly higher degree than women in the control group” (Sperschneider et al., 2019). Chronic pain from endometriosis was “was significantly associated with increased sick leave as well as with loss of productivity at work” (Sperschneider et al., 2019). How has endometriosis impacted your ability to work?
References
Sperschneider, M. L., Hengartner, M. P., Kohl-Schwartz, A., Geraedts, K., Rauchfuss, M., Woelfler, M. M., … & Leeners, B. (2019). Does endometriosis affect professional life? A matched case-control study in Switzerland, Germany and Austria. BMJ open, 9(1), e019570. Retrieved from https://bmjopen.bmj.com/content/9/1/e019570
Soliman, A. M., Rahal, Y., Robert, C., Defoy, I., Nisbet, P., Leyland, N., & Singh, S. (2021). Impact of endometriosis on fatigue and productivity impairment in a cross-sectional survey of Canadian Women. Journal of Obstetrics and Gynaecology Canada, 43(1), 10-18. Retrieved from https://doi.org/10.1016/j.jogc.2020.06.022

Finding an endometriosis specialist
Endometriosis often requires specialized care. Just as there are specialists such as endocrinologists, oncologists, rheumatologists, cardiovascular surgeons, orthopedic surgeons, and so on, there are specialists for endometriosis. Even within those specialties, there are subspecialties for even more specific disease processes. However, finding those elusive providers can be difficult.
When looking for an endometriosis specialist, it is important for you to understand about the disease yourself- which is why this website is in existence. Start at the beginning and work your way through the site. It is equally important to educate yourself on common diseases that occur with endometriosis and can cause similar symptoms. Treating one disease process (endometriosis) and not treating another (such as interstitial cystitis) can leave you with symptoms and questions as to why.
When looking at a surgeon for endometriosis, we have some resources to help you. Start with this article about Choosing Your Surgeon. Join our Facebook group to find other resources on endometriosis. Take a look at vetted surgeons who have chosen to refine their skills on endometriosis and have subspecialties in endometriosis surgery (bowel, thoracic, etc.) (https://icarebetter.com/).
Endometriosis can cause a lot of problems with our health and healing takes time and effort. It can take addressing multiple pain generators and mental health care. Finding the right specialist/surgeon is an important first step on that journey towards better health.

7 Ways to Prepare For First Endometriosis Specialist Appointment
Table of contents
Diagnosis. Treatment. Surgery. Many Topics May Be Discussed At Your Visit
An endometriosis specialist appointment is not something you do every day (although sometimes it might feel like all day while you’re waiting there). However, the time you get to talk with the doctor may be pretty short. During that moment of consultation with the endometriosis (endo) specialist, you might feel brain fogged or bombarded. Whether it’s the diagnosis, treatment, surgery, pain management, or an endometriosis symptom you want to bring up, it’s easy to forget an essential topic while you’re there.
To make the most out of your initial endometriosis specialist appointment with an endometriosis specialist, we’ve made a list of seven ways you can prepare for the visit. First, we will give a short description of what endometriosis is.
What’s Endometriosis?
Endometriosis is a female medical disorder in which tissue similar to the endometrium (tissue that lines the walls of the uterus) grows outside the uterus. This endometriosis tissue can grow on the surface of the uterus, ovaries, intestines, fallopian tubes, bladder, or other organs in the body.
During menstruation, this tissue releases blood, and it sloughs off. However, this blood and tissue often remain trapped with no way to escape the body. This increased pressure can result in moderate to severe pain, among other symptoms. If you want to learn more about endometriosis and get a general background on the condition, read our article, “Endometriosis 101: Covering the Basics.”
Why You Are Here
People of various ages and demographics are subject to this often debilitating inflammatory pelvic disorder. Whether you have confirmed the diagnosis of endometriosis or if you need surgery to verify its presence and remove lesions – these suggestions can help you prepare for the endometriosis specialist appointment. There are many stages of endometriosis. Whether you’ve got into a specialist early on your journey or later, the important thing is that you are here now – exploring treatment options.
7 Ways to Prepare for Endometriosis Specialist Appointment
Once you have found an experienced endometriosis specialist, it’s essential to prepare yourself for the doctor’s appointment ahead of time. There is no concrete test to diagnose endometriosis (outside of surgery). Therefore, it’s imperative to have a solid understanding of the signs and symptoms of endo and detailed accounts of your own experience ready. Simple things such as medical records or journals that list all your endometriosis symptoms are a vital arsenal that will help you and your doctor determine your treatment plan.
1. Gather Your Records.
Unfortunately, most people with endometriosis have had many doctor appointments before seeing an endometriosis specialist. Therefore, you should have some medical records for them to review during your first appointment with an endo specialist. Gather everything from your regular medical history from your general practitioner to your OB/GYN records, testing, imaging, blood work, etc. Even if you think the particular doctor appointment or medical history is insignificant, you might be surprised by the various conditions linked to endometriosis. Bring it all. This information could play a vital role in your endometriosis treatment.
2. Keep a Journal of Endometriosis Symptoms/Pain.

Write down all the possible endo signs and symptoms you’ve had leading up to the doctor’s appointment. If you get a visit scheduled, and it’s a couple of weeks out, start the journal at that time, but also include the signs and symptoms you’ve experienced leading up to that point. Then, from that date until your appointment, write down all the different types of symptoms you experience. Include everything, even if you don’t think it’s relevant, like colds, headaches, stomach issues, shortness of breath, chest pain, etc. Also, be sure to include your emotions and feelings because endometriosis can significantly impact mental health and can lead to conditions such as depression and anxiety. Emotions and mental health are essential as you might want to include a counselor as part of your holistic endometriosis treatment team.
3. Bring This Printable Guide.
At endometriosis.org, they’ve created a convenient guide that can help you describe your symptoms and know what to ask your endometriosis specialist. Click here for the PDF. Please print it out and answer all the questions. Bring this with you to your doctor’s appointment to help specifically describe your endometriosis pain and other symptoms.
4. Take All Your Medications With You.
The importance of this cannot be understated. Even if you have a medication reconciliation (also known as a “med rec” for short) from your doctor, it’s important to realize those are not always up-to-date with everything you take. This inconsistency is especially true if you are on medications from multiple specialists or take supplements as well. The best way for your endo specialist to have a complete picture of all the medicines you are currently taking is by bringing them with you to the doctor’s appointment. You should include any supplements or over-the-counter medications. Bring in the physical bottles along with any medication history records.
5. Prepare Yourself Mentally.
Go into the appointment with the bold mindset that you will ask every single question you have to gain clarity on your endometriosis diagnosis and treatment options. Endometriosis is an aggressive inflammatory disorder that can have a devastating impact on your quality of life. It would help if you carried an even more aggressive attitude toward trying to stop it dead in its tracks.
6. Bring a List of Questions.
What’s been bothering you the most? Pain? Bowel symptoms? Bring a list of all the important questions that you want answers to. Writing them down will help you not forget during the appointment. Furthermore, when the doctor sees you have a list of questions you want answers to, it makes it harder for them to get up and walk out of the room like the appointment is over. If something like that has ever happened to you, we are sorry you’ve experienced this. That’s why it’s crucial to find a vetted endometriosis expert.
7. Take a Support Person With You.
Finding a good endo expert is no easy task (unless you use iCareBetter to connect you to one). If you are the type of person who is a bit shy or feels intimidated, you should bring your best support person to the appointment with you. Even if you are not nervous about your first endometriosis specialist appointment, having someone you trust by your side can help you process the information and encourage you along your journey. If no one you would like to accompany you, consider bringing a recorder and taping the visit. Because this can help you go back later and make sure you’ve understood all the information. Most doctors will have no qualms about recording your visit.
Endometriosis Care Process with iCareBetter
1- Find an expert based on keyword/ specialty or state
2- choose your doctor from the list
3- Get the contact info
4- First call and consultation.
5- Get info regarding costs and care process
6- Receive care
We Want to Hear From You
Have you been to an endometriosis specialist (OB-GYN experienced in endo)? If so, is there anything you wished you would have done differently? If you’ve not been to an endo specialist yet, what is your biggest concern about the first doctor visit?

Pelvic Congestion Syndrome- another cause of chronic pelvic pain
When talking about endometriosis and chronic pelvic pain, it is important to remember that often endometriosis is not the only pelvic pain generator. Another possible contributor to chronic pelvic pain is pelvic congestion syndrome (PCS). PCS is like having varicose veins in the pelvis. Blood pulls in the veins and can cause symptoms such as heaviness, pain with penetration, noncyclical pain, positional lower back pain, pelvic and upper thigh pain, prolonged postcoital discomfort, symptoms that worsen throughout the day and are exacerbated by activity or prolonged standing, and non-specific lower abdominal and pelvic pain (Durham & Machan, 2013; Mistry & le Roux, 2017). LIANG and Brown (2021) report that:
“Typical pelvic congestion syndrome pain is:
– Heaviness and dull aching in nature
– Located deep in the pelvis and on the left
– Exacerbated by upright position (standing or sitting) and exercise (walking, running, weightlifting)
– Worse towards the end of the day
– Worse after sexual intercourse
– Worse when bladder is full
– Chronic and insidious onset
Atypical pelvic congestion syndrome pain is:
– Constant pain not related to time of day, upright posture or physical activities
– Pain worse premenstrually and during menstrual periods
– More on the right than the left
– Acute and sudden onset
– Sharp or colicky in nature”
While the gold standard for diagnosis is contrast venogram, this procedure is usually done as part of the treatment (embolization procedure) (LIANG & Brown, 2021). LIANG and Brown (2021) report that “all non-invasive imaging like ultrasound, CT and MRI can detect pelvic varicosities” but that the key is “to alert the imaging technicians and specialist to look out for pelvic varicosities and to report them” (LIANG & Brown, 2021). A CT scan can also help diagnose other syndromes such as Nutcracker Syndrome (left renal vein compression) and May-Thurner Syndrome (left iliac vein compression) (LIANG & Brown, 2021). If you’ve had surgeries before for endometriosis and wonder why it wasn’t seen during surgery, it is because surgery “is performed with the patient in supine or Trendelenburg position, and with the use of CO2 for abdominal distention” thus meaning that the “veins are often collapsed, and pelvic varicosities can be missed”- it would take the surgeon who suspects pelvic varicosities to put the patient in “reverse Trendelenburg position and easing off CO2 distention” that “might allow the dilated veins to fill” and possibly be seen (LIANG & Brown, 2021).
Unfortunately, PCS doesn’t just go away or improve with time, therefore, treatment is usually needed for those who are symptomatic (LIANG & Brown, 2021). Because there is pooling and back flow of blood in the veins, the treatment suggested is transcatheter embolization (LIANG & Brown, 2021). Medication, hysterectomy, and other treatments have not proved as effective (LIANG & Brown, 2021). The transcatheter embolization “is performed with conscious sedation under local anaesthetic, as a day procedure” and “is one of the safest embolisation procedures” (LIANG & Brown, 2021). LIANG and Brown (2021) report that “some feel the relief of pelvic congestion syndrome symptoms soon after embolisation, while others might have to wait for the thrombophlebitis to settle before appreciating the result”- reporting that it is best to wait 4-6 weeks to better judge the effectiveness. Mistry & le Roux (2017) report that after looking at 20 studies that “the overall technical success rate was as high as 99%” and that “with a mean follow up of 15 months, 80% of the patients reported benefit from the procedure while 13% experienced little or no relief of the symptoms”.
PCS may be another piece in the puzzle of ongoing chronic pelvic pain.
References
Durham, J. D., & Machan, L. (2013, December). Pelvic congestion syndrome. In Seminars in interventional radiology (Vol. 30, No. 04, pp. 372-380). Thieme Medical Publishers. Retrieved from https://www.thieme-connect.com/products/ejournals/html/10.1055/s-0033-1359731
LIANG, D. E., & Brown, B. (2021). Pelvic congestion syndrome: Are we missing the diagnosis?. The Medical Republic. Retrieved from https://www.sydneyfibroidclinic.com.au/app/uploads/2021/06/PCS-Medical-Republic.pdf
Mistry, P. P., & le Roux, D. A. (2017). Pelvic congestion syndrome (PCS). Practice Perspectives for Venous Disorders, 46. Retrieved from http://www.vascularsociety.co.za/wp-content/uploads/2019/02/VASSA-venous-guidelines-Practice-perspectives-for-venous-disorders-2017.pdf#page=46

Genes associated with endometriosis
It’s an exciting title: “Genetic cause of endometriosis discovered, pointing to new drug therapy” (Haridy, 2021). But it is misleading. When you look further, it reveals it is referencing a study (Tapmeier et al., 2020) that identified “a novel genetic variant that is associated with severe cases of endometriosis” (Haridy, 2021). The article further states that “NPSR1 mutations have never before been linked with endometriosis” but “they have, however, been associated with inflammatory diseases including arthritis, inflammatory bowel disease and asthma” (Haridy, 2021). This gene was noted in endometriosis patients in a 2016 study that identified several genes associated with endometriosis (Houshdaran et al., 2016). The article also notes “not every woman with endometriosis was found to have this particular NPSR1 variant, affirming the heterogenous nature of the condition” and that the gene has a “potential role in endometriosis” that “points to the development of anti-inflammatory therapeutics targeting this mechanism” (Haridy, 2021).
We know there is a genetic component to endometriosis; however, a single gene has not been identified as the cause. This study notes that this particular gene is associated with stage III/IV endometriosis and with other inflammatory conditions. The research is identifying new potential drug targets to help with symptoms.
Genetics account for about 50% of the risk for endometriosis with the other 50% “likely owing to environmental factors” (Montgomery et al., 2020). “As with other complex diseases, genetic variants in the DNA sequence increasing endometriosis risk all have small effects, unlike most single-gene disorders” and “it is the combinations of these variants adding together that contribute to higher risks for individual women” (Montgomery et al., 2020). The science of epigenetics should also be considered.
Epigenetics is “the study of biological mechanisms that will switch genes on and off” (What Is Epigenetics, 2019). Epigenetics can be influenced by almost everything: “what you eat, where you live, who you interact with, when you sleep, how you exercise, even aging – all of these can eventually cause chemical modifications around the genes that will turn those genes on or off over time” (What Is Epigenetics, 2019). Epigenetics involved with endometriosis might include “DNA methylation and histone modification, and, other non-classic mechanisms: miRNAs and lncRNA” (Chen et al., 2020). “Increased estrogen activity and progesterone resistance are the main hormonal substrate of this disease and are associated with inflammatory response and debilitating symptoms, including pain and infertility….The regulation of receptor expression by epigenetics maybe a critical factor for endometriosis” (Chen et al., 2020).
In short, endometriosis is pretty complicated and we still have much to learn.
References
Chen, H., Malentacchi, F., Fambrini, M., Harrath, A. H., Huang, H., & Petraglia, F. (2020). Epigenetics of estrogen and progesterone receptors in endometriosis. Reproductive Sciences, 1-8. Retrieved from https://link.springer.com/article/10.1007/s43032-020-00226-2
Haridy, R. (2021). Genetic cause of endometriosis discovered, pointing to new drug therapy. Retrieved from https://newatlas.com/science/genetic-cause-endometriosis-inflammation-new-drug-therapy/
Houshdaran, S., Nezhat, C. R., Vo, K. C., Zelenko, Z., Irwin, J. C., & Giudice, L. C. (2016). Aberrant endometrial DNA methylome and associated gene expression in women with endometriosis. Biology of reproduction, 95(5), 93-1. Retrieved from https://doi.org/10.1095/biolreprod.116.140434
Montgomery, G. W., Mortlock, S., & Giudice, L. C. (2020). Should genetics now be considered the pre-eminent etiologic factor in endometriosis?. Journal of minimally invasive gynecology, 27(2), 280-286. Retrieved from https://doi.org/10.1016/j.jmig.2019.10.020
Tapmeier, T. T., Rahmioglu, N., Lin, J., Obendorf, M., de Leo, B., Montgomery, G., … & Zondervan, K. T. (2020). Neuropeptide S Receptor 1 is a Novel Non-Hormonal Treatment Target in Endometriosis. Reproductive Sciences, 27(SUPPL 1), 130A-130A. Retrieved from https://stm.sciencemag.org/content/13/608/eabd6469
What Is Epigenetics. (2019). A Super Brief and Basic Explanation of Epigenetics for Total Beginners. Retrieved from https://www.whatisepigenetics.com/what-is-epigenetics/

What a Pain! Vaginismus, Vulvodynia, and More
Endometriosis can have a cascade effect on the muscles, fascia, and nerves of the pelvis. Myofascial pain is involved in up to 94% of chronic pelvic pain and can occur “independently or in conjunction with disorders such as vaginismus, dysmenorrhea, and endometriosis and is frequently a causative factor in sexual pain or dyspareunia” (Ross et al., 2021). Vaginismus, vulvodynia, and pudendal neuralgia are a few of things that can contribute to chronic pelvic pain.
Vaginismus is the “recurrent involuntary tightening of muscles around the vagina” (spasms) whenever penetration is attempted- such as “the use of tampons, penetrative intercourse, cervical examinations, and other activities” (Haire, 2021). Phenomena such as endometriosis, recurrent bladder infections (or painful bladder syndrome), yeast infections, hormonal changes (such as decreased lubrication with menopause) are a few of the things that might trigger it (HealthDirect, 2019). Therapies might include pelvic floor physiotherapy, local anesthetics (such as lidocaine), muscle relaxants (such as medications/creams or even botulinum toxin injections), and/or anxiolytic medication (Lahaie et al., 2010).
Vulvodynia is “chronic discomfort in the vulvar region” (Reed, 2006). The pain has been “described as ‘burning,’ but it may be irritating, sharp, prickly, or, occasionally, pruritic, and it can be mild to severe” (Reed, 2006) (pruritic meaning itching). Reed (2006) also reports that “the pain can begin suddenly when provoked, and it tends to dissipate gradually; women with vulvodynia often report hours to days of discomfort after intercourse or a pelvic examination.” The pain with vulvodynia can be exacerbated by prolonged sitting, tight clothes, riding a bike, use of tampons, or intercourse (Reed, 2006). Vulvodynia might be contributed to by “injury to, or irritation of, the nerves that transmit pain from the vulva to the spinal cord, an increase in the number and sensitivity of pain-sensing nerve fibers in the vulva, elevated levels of inflammatory substances in the vulva, an abnormal response of different types of vulvar cells to environmental factors such as infection or trauma, genetic susceptibility to chronic vestibular inflammation, chronic widespread pain and/or inability to combat infection, or pelvic floor muscle weakness, spasm or instability” (National Vulvodynia Association, n.d.). The National Vulvodynia Association has good information on treatment options here: https://www.nva.org/what-is-vulvodynia/treatment/.
Another entity associated with pain in the pelvic region is pudendal neuralgia. This is “a painful condition caused by inflammation, compression or entrapment of the pudendal nerve; it may be related to or be secondary to childbirth, pelvic surgery, intense cycling, sacroiliac skeletal abnormalities or age-related changes” (Perez-Lopez & Hita-Contreras, 2014). Symptoms usually present with “pelvic pain with sitting which increases throughout the day and decreases with standing or lying down, sexual dysfunction and difficulty with urination and/or defecation” (Perez-Lopez & Hita-Contreras, 2014). Treatment options might include “physiotherapy, analgesics and nerve block, surgical pudendal nerve decompression, radiofrequency and spinal cord stimulation” (Perez-Lopez & Hita-Contreras, 2014).
The pelvic floor is a busy highway of muscles, nerves, ligaments, blood vessels (see Pelvic Congestion Syndrome), and more. There is a lot that can contribute to chronic pelvic pain, and it is important to address all the factors that might be contributing to it. You can find more information here:
- https://icarebetter.com/pudendal-neuralgia-vulvodynia/
- https://icarebetter.com/pelvic-floor-dysfunction
References
Haire, G. (2021). When the Body Says No: The Experience of Vaginismus and the Validity of Female Pain. Brief Encounters. Retrieved from https://kar.kent.ac.uk/89429/1/document.pdf
HealthDirect. (2019). Vaginismus. Retrieved from https://www.healthdirect.gov.au/vaginismus
Lahaie, M. A., Boyer, S. C., Amsel, R., Khalifé, S., & Binik, Y. M. (2010). Vaginismus: a review of the literature on the classification/diagnosis, etiology and treatment. Women’s Health, 6(5), 705-719. Retrieved from https://journals.sagepub.com/doi/full/10.2217/WHE.10.46
Perez-Lopez, F. R., & Hita-Contreras, F. (2014). Management of pudendal neuralgia. Climacteric, 17(6), 654-656. Retrieved from https://doi.org/10.3109/13697137.2014.912263
National Vulvodynia Association. (n.d.). Retrieved from https://www.nva.org/
Reed, B. D. (2006). Vulvodynia: diagnosis and management. American family physician, 73(7), 1231-1238. Retrieved from https://www.aafp.org/afp/2006/0401/p1231.html
Ross, V., Detterman, C., & Hallisey, A. (2021). Myofascial Pelvic Pain: An Overlooked and Treatable Cause of Chronic Pelvic Pain. Journal of Midwifery & Women’s Health, 66(2), 148-160. Retrieved from https://doi.org/10.1111/jmwh.13224

Pain with sex
A little spoken of symptom of endometriosis is pain with sex. In medical terms, it is called dyspareunia- meaning pelvic pain that occurs before, during, or after intercourse (although similar pain can also be felt with an exam or insertion of a tampon). Deep dyspareunia is “a cardinal symptom of endometriosis” (Wahl et al., 2020) with more than half of women with endometriosis experiencing it (Yong, 2017). This can play a significant role in the quality of life and relationships (Denny & Mann, 2007). The pain has been described cramping, stabbing, or stinging- among other things.
Yong (2017) proposes a classification of four types of deep dyspareunia in people with endometriosis: “type I that is directly due to endometriosis; type II that is related to a comorbid condition; type III in which genito-pelvic pain penetration disorder is primary; and type IV that is secondary to a combination of types I to III.” Fritzer and Hudelist (2017) found that “surgical excision of endometriosis is a feasible and good treatment option for pain relief and improvement of quality of sex life in symptomatic women with endometriosis.” Excision surgery for endometriosis overall shows improvement in pain with sex; however, other factors such as adenomyosis or painful bladder syndrome (interstitial cystitis) can continue to cause symptoms and should be addressed (Crispi et al., 2021). “Myofascial or nervous system mechanisms may be important for deep dyspareunia in women with endometriosis, even in those with moderate-to-severe disease (Stage III/IV)” (Orr et al., 2018). While it may feel embarrassing to bring up, it is an important aspect of your health to discuss with your provider. They might suggest pelvic floor therapy, medication, or other options to help. But it is important to address any underlying conditions.
In the meantime, some things to try:
- Have open communication with your partner about what you are feeling and your needs
- Experiment with different times of your cycle that may be less painful (such as the week after ovulation or the first couple of weeks after your period)
- Use of a lubricant
- Try different positions to find which is best for you
- Utilizing forms of intimacy that does not involve penetration
Find more here: https://icarebetter.com/pain-with-penetration/
References
Crispi Jr, C. P., Crispi, C. P., de Oliveira, B. R. S., de Nadai Filho, N., Peixoto-Filho, F. M., & Fonseca, M. D. F. (2021). Six-month follow-up of minimally invasive nerve-sparing complete excision of endometriosis: What about dyspareunia?. Plos one, 16(4), e0250046. Retrieved from https://doi.org/10.1371/journal.pone.0250046
Denny, E., & Mann, C. H. (2007). Endometriosis-associated dyspareunia: the impact on women’s lives. BMJ Sexual & Reproductive Health, 33(3), 189-193. Retrieved from https://srh.bmj.com/content/familyplanning/33/3/189.full.pdf
Fritzer, N., & Hudelist, G. (2017). Love is a pain? Quality of sex life after surgical resection of endometriosis: a review. European Journal of Obstetrics & Gynecology and Reproductive Biology, 209, 72-76. Retrieved from https://doi.org/10.1016/j.ejogrb.2016.04.036
Orr, N. L., Noga, H., Williams, C., Allaire, C., Bedaiwy, M. A., Lisonkova, S., … & Yong, P. J. (2018). Deep dyspareunia in endometriosis: role of the bladder and pelvic floor. The journal of sexual medicine, 15(8), 1158-1166. DOI: 10.1016/j.jsxm.2018.06.007
Wahl, K. J., Orr, N. L., Lisonek, M., Noga, H., Bedaiwy, M. A., Williams, C., … & Yong, P. J. (2020). Deep dyspareunia, superficial dyspareunia, and infertility concerns among women with endometriosis: a cross-sectional study. Sexual medicine, 8(2), 274-281. Retrieved from https://doi.org/10.1016/j.esxm.2020.01.002
Yong, P. J. (2017). Deep dyspareunia in endometriosis: a proposed framework based on pain mechanisms and genito-pelvic pain penetration disorder. Sexual medicine reviews, 5(4), 495-507. Retrieved from https://doi.org/10.1016/j.sxmr.2017.06.005

Physical Therapy Before Excision Surgery for Endometriosis
Endometriosis can cause multiple issues for our bodies and can create the need for a multidisciplinary care team to address chronic pelvic pain. Physical therapy is one example of part of a multidisciplinary treatment plan for endometriosis symptoms. Guest writer Rebecca Patton, PT, DPT, discusses considerations for using physical therapy while awaiting excision surgery:
Pelvic physical therapy has gained more following and prompted much needed discussions in recent years. However, pelvic physical therapy looks quite different for someone with chronic pelvic pain and endometriosis.
The reality is that pelvic physical therapists may be a first line of defense to refer a patient to a specialist. First, because we have direct access, meaning a patient can see us for an evaluation before seeing a physician. Second, because symptoms of endometriosis are often missed or dismissed by referring providers. In the latter case, someone may be referred to physical therapy before excision surgery or even before seeing an endo specialist.
Top endometriosis physical therapists
Endometriosis Physical Therapy
pelvic floor therapy for endometriosis
Physical therapists can optimize care by helping a patient get to a specialist while providing physical therapy treatment.
If we are seeking to provide the best care available for treatment of endo, getting faster diagnosis and referring a patient to an excision specialist is the primary goal. With a thorough medical history including bowel and bladder habits, menstrual symptoms, pelvic pain symptoms, previous treatment, and understanding the patient’s experience, a pelvic physical therapist can create a differential diagnosis list that may include endometriosis. If endometriosis is suspected, a referral to an excision specialist should be given to the patient and explained.
Endo specialists’ wait times vary greatly depending on where you are located.
In my personal experience in Phoenix, AZ, a large metropolitan area with several specialists, it takes anywhere from 3-12 months. More time if we are in the middle of a global pandemic. Decreased access in rural areas may also increase waiting times. One positive change is the inclusion of virtual appointments which may improve access for those in rural areas.
During the waiting period, the goal is to manage pain and maintain some regularity with bowel and bladder habits until excision surgery. Internal pelvic floor retraining may or may not be appropriate during this time.
As mentioned before, physical therapy before excision surgery is going to look different from treatments for other conditions. As a patient, you want to ensure the physical therapist you are seeing treats patients with endo regularly. You may want to consult with them prior about how often they treat patients with endo and what treatments they use specifically. Additional coursework for visceral and abdominal manual therapy techniques, nerve mobilization, and myofascial therapy techniques will be helpful.
Most studies research the effectiveness of physical therapy following excision surgery. What about physical therapy before excision surgery?
Zhao et al. (1) found that 12 weeks of PMR (progressive muscle relaxation) training is effective in improving anxiety, depression and QOL of endometriosis patients under GnRH agonist therapy. These participants had not received excision surgery.
Awad et al. (2) found improvements in posture and pain with an 8-week regular exercise program in those diagnosed with mild to moderate endometriosis. This exercise program included posture awareness, diaphragm breathing, muscle relaxation techniques, lower back and hip stretches, and walking. Of note, this exercise program was not vigorous exercise. These participants were also receiving hormonal treatment but not receiving pain medication.
Both studies did not say that physical exercise or PMR plays a role in the prevention of the occurrence or progression of endometriosis. Both studies were short term (8-12 weeks) and did not explore pain management directly before excision or outcomes after excision.
In the time that a patient is waiting for excision surgery, I believe physical therapy treatment can be effective at minimizing overall pain levels and improving quality of life.
A few factors to keep in mind if you are seeking pelvic physical therapy before excision surgery:
- Your symptoms after physical therapy should not last more than 1-2 days and should feel manageable. Being bedridden for a week after physical therapy is not a helpful treatment. If you experience this, be sure to communicate it with your physical therapist to adjust the plan. Not all pelvic PT’s are experienced with this type of treatment and they may create an exercise plan that is too vigorous.
- Internal pelvic floor treatment is not always the most helpful in this situation and may exacerbate symptoms. An individualized plan is important to discuss with your provider.
- You are in charge of your body. If you don’t feel like a treatment is working then communicate that to your team and discuss other options. It is always okay to voice your concerns to change the treatment to fit you best.
- Treatment before surgery requires a multidisciplinary team. This may include other pain management options including medication.
iCareBetter is doing the ground work to vet pelvic physical therapists.
Rebecca Patton PT, DPT (If you are seeking a pelvic PT, I accept consultations through my website for in person and telehealth appointments: https://www.pattonpelvichealth.com/)
For more resources on physical therapy for endometriosis see: https://icarebetter.com/physical-therapy-resources/
References
Zhao L, Wu H, Zhou X, et al.: Effects of progressive muscular relaxation training on anxiety, depression and quality of life of endometriosis patients under gonadotrophin-releasing hormone agonist therapy. Eur J Obstet Gynecol Reprod Biol, 2012, 162: 211–215. [PubMed] [Google Scholar]
Awad E, Ahmed HAH, Yousef A, Abbas R. Efficacy of exercise on pelvic pain and posture associated with endometriosis: within subject design. J Phys Ther Sci. 2017;29(12):2112-2115. doi:10.1589/jpts.29.2112 [NCBI]

Choosing the Right Mental Health Therapist
By Deanna Denman, PhD, Licensed Psychologist, Clinical Health Psychologist
Find the right therapist can be just as difficult as finding an endometriosis specialist. There are many different types of therapists providing many different types of therapy out there, and “fit” between you and your therapist is very important. I’ve included some helpful information and tips below to help you find a good therapist if you’d like some support along your Endo journey.
- Finding a therapist-
-Expect to check out several therapists via website. Most therapists offer a free consultation to see if you both think it’s a good fit. The “fit” with you and your therapist is going to be important for your trust and ultimately your progress in therapy.
-If you meet with someone and they aren’t a good fit, that’s okay! You can even ask them if they have referrals for you.
-Ask your doctor if they have any recommendations. Some doctors have therapists they have worked with in the past and who they trust. Ask if your doctor has any referrals for you.
-There are SEVERAL therapist directories. Search them for therapists in your area. I encourage you to check out:
- Inclusive Therapists
- Psychology Today
- Therapy for Black Girls
- Therapy for Latinx
- QTPOC
- Your insurance company (they usually list covered providers on their website)
- Your network (friends, family, co-workers) if you are comfortable
**Some people prefer to work with therapists who hold similar identities to them. I’ve included some resources for therapists of color and LGBTQ+ therapists in the list above***
2. What to ask-
So you’ve found a few potential therapists. What should you ask in the first consultation:
-How much do sessions cost?
Therapy is an investment in your well-being, but I know costs can be prohibitive! BE thoughtful and open about your budget for therapy. Many therapists list their rates online as well as whether or not they accept insurance. Some therapists don’t accept insurance, but will still provide you with a receipt for services that you can provide to your insurance for reimbursement. ***Talk to your insurance provider about your out-of-network mental health benefits.***
-How much experience and what trainings do you have in working with people with endometriosis?
(You can also ask about other things you’d like to work on in therapy like trauma, anxiety, or even people-pleasing). Really anything is fair game, but it’s important to assess their comfort level with your particular concerns. Specifically, if you are seeking support with your Endo, you want to know if they are familiar with the condition, if they are comfortable in collaborating with your medical providers, and what kinds of interventions they use. If they have never worked with someone with chronic pain, or their only recommendation for someone with chronic pain is to start exercising, they’re not likely to be a good fit.
–How will we set goals/measure progress?
Ideally, you want to set goals together with your therapist. You should also check in regularly about how you are doing and the plan for moving forward
3. Credentials-
If you’ve ever been confused by the alphabet soup after therapists’ names, you’re not alone. The conversation around the differences between “counseling” and “therapy” are beyond the scope of this post. Most people use the terms interchangeably and the right provider for you could fall into either category.
***Note: any provider you work with must be licensed to practice (or pursuing licensure and working under supervision)***
Let’s break it down:
Professional Counselors
- LPC- licensed professional counselor (may have -A, -S behind LPC to designate “associate” or “supervisor”)
- LMHC- licensed mental health counselor
- LCADAC- licensed clinical alcohol and drug abuse counselor
- LMFT- licensed marriage and family therapist
Broadly, counselors are more focused on helping you solve mental health and behavioral problems and giving you very practical skills.
*LMFTs are not technically counselors (their title even includes ‘therapist’), but they best fit in this category, and tend to specialize in things influenced by relationships. LMFTs DO offer individual therapy and often have specialty training in concerns like infertility.
Social Workers
- LCSW- licensed clinical social worker (may have -A, or -C behind LCSW to designate “associate” or “certified”)
- LISW- licensed independent social worker
- MSW- Master of social work (the degree)
Again, broadly, social workers are very well trained to address social and environmental issues (think: systems of oppression and “isms”) and problem-solve. They also tend to be very knowledgeable about resources (like programs and trainings) that can help you.
Psychologists
- PhD- doctor of philosophy
- PsyD- doctor of psychology
Generally, psychologists focus on very complex issues and very strongly grounded in theories of mental health. They tend to be more assessment-, and research-, focused due to their training. (They can also do psychological testing for things like memory and learning disabilities)
These are all very broad generalizations and still don’t address people’s specialties (the populations they focus on), the theory they are grounded in, or the interventions they use. The best place to get a sense of that is by reading their websites and speaking with them directly.
What’s important- regardless of the letters, most of them are trained to help people work things out in therapy. They will NOT all have the training to help with issues around endometriosis. That’s why taking advantage of the consultation is important.
4. Specialties-
Therapists often have specialties. Realistically, you can find therapists specializing in just about anything. There are some therapists who specialize in trauma, others who specialize in working with high-achievers who want to slow down. There are ALSO therapists who specialize in working with patients who have chronic illness. You may want to see a provider who has specialty training and focus in working with patients with chronic illness. Finding the right therapist for you can take some effort but is worth it. Consider what you’d like to address and look for therapists who speak to that on their sites/listings. If you can, take advantage of free consultations. Ask potential therapists about their experience and training in your concerns. Be open to trying more than one and know that personality fit is important. It’s okay to search until you find the right support for you on this endometriosis journey.

Endo diet: Mediterranean or FODMAP for the win?
A healthy eating pattern can be therapeutic and good for our health overall, but it can be difficult to decide on what is best for our bodies. The process can involve a long time spent in trial and error to find what works for our individual body and its needs. When looking at studies on dietary interventions, we find that they are difficult to perform- often ending up with strong bias or high inconsistent rates with adherence (anyone else here ever cheat on a diet??). But they can give us some direction. For instance, a systematic analysis by Nirgianakis et al. (2021) looked at a few recent studies on diet’s effect on endometriosis symptoms. While, unfortunately, the data was not strong enough for any strong conclusions, it can give some clues for individuals with endometriosis (along with consultation with a healthcare provider).
Two of the diets looked at included the Mediterranean diet and a diet low in fermentable oligo-, di-, monosaccharides, and polyols (FODMAP). Both showed promise for help with endometriosis symptoms, particularly gastrointestinal symptoms and pain.
Nirgianakis et al., (2021) explains:
“FODMAPs are poorly absorbed, short-chain carbohydrates that are readily fermentable by bacteria. Their osmotic actions and gas production may cause intestinal luminal distension inducing pain and bloating in patients with visceral hypersensitivity with secondary effects on gut motility….Diseases like irritable bowel syndrome and endometriosis come along with visceral hypersensitivity, implementing the hypothesis of symptom-reduction after sticking to a low-FODMAP diet. This is very important given the high prevalence of gastrointestinal-related symptoms and co-morbidities in patients with endometriosis. Interestingly, the low-FODMAP diet includes not only a low-Ni diet, but also a low-lactose and a low-gluten diet, thus covering the above-mentioned diets and a large spectrum of high-prevalence pathologies, such as lactose intolerance and non-celiac gluten sensitivity. It is therefore possible to obtain clinical benefits from a low-FODMAP diet, even if at the cost of probably not necessary dietary exclusions.”
The Mediterranean diet includes “fresh vegetables, fruit, white meat, fish rich in fat, soy products, whole meal products, foods rich in magnesium, and cold-pressed oils,” while avoiding “sugary drinks, red meat, sweets, and animal fats”. The review noted that “a significant relief of general pain, dysmenorrhea, dyspareunia, and dyschezia as well as an improvement in the general condition was found.” Moreover, the “Mediterranean diet has well-known antioxidant effects. However, the Mediterranean diet does not involve just the supplementation of certain antioxidants, but rather a collection of eating habits and may thus improve endometriosis-associated pain via additional mechanisms. Fish as well as extra virgin olive oils have been shown to exert anti-inflammatory effects. Specifically, extra virgin olive oil, which contains the substance oleocanthal, displays a similar structure to the molecule ibuprofen, and both take effect via the same mechanism, i.e., cyclooxygenase inhibition. Moreover, the increased amount of fibers provides a eupeptic effect while foods high in magnesium could prevent an increase in the intracellular calcium level and advance the relaxation of the uterus. Taking into account the lack of risks or side effects even after long-term lifetime adherence to this diet and the possible other general health benefits, clinicians may suggest this type of dietary intervention to patients with endometriosis who wish to change their nutritional habits.”
Finally, the authors looked at a qualitative study and found that “the participants experienced an increase in well-being and a decrease in symptoms following their dietary and lifestyle changes. They also felt that the dietary changes led to increased energy levels and a deeper understanding of how they could affect their health by listening to their body’s reactions.” So, taking control of your diet can help improve your general sense of well-being.
Again, there was not strong evidence from any of the studies reviewed, but it might prove helpful when discussing complementary therapies with your healthcare provider. You can find more information about diet and endometriosis here.
Reference
Nirgianakis, K., Egger, K., Kalaitzopoulos, D. R., Lanz, S., Bally, L., & Mueller, M. D. (2021). Effectiveness of Dietary Interventions in the Treatment of Endometriosis: a Systematic Review. Reproductive Sciences, 1-17. Retrieved from https://link.springer.com/article/10.1007/s43032-020-00418-w