Helpful Resources for Endometriosis
Here are some links and information that I found useful in my journey with figuring out what Endometriosis was and what to do to help with Endometriosis on a day to day to minimize my pain
Do I Have Endo?
Self Assessment
Fact: 1 in 10 women develop endometriosis.
Fact: It typically takes up to 7-10 years for a diagnosis of endometriosis. It took me 20 years to get my diagnosis!
Fact: I do not want you to spend seven to ten years in crippling pain, feeling helpless, because you have been told it’s “just a bad period”! Carry out a little self assessment by reading the common symptoms of endometriosis below, then have a chat with your doctor. Ask them outright if you should have further checks for endometriosis.
It’s helpful to know that endo is not the same in all women/people. Symptoms can differ. Some woman/people may have all the symptoms, others some, others none until they are trying to conceive and struggle (this was me!). Symptoms can also change during a monthly cycle and also over time.
Symptoms
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Pain: one of the main symptom of endometriosis is pain which is often severe and chronic. You know your pain is severe if it doesn’t go away when you take ibuprofen and it stops you from your daily activities. The pain can be bearing down labour-like pain, dragging, searing, pulsating, stabbing and can be so intense that you vomit.
The pain can occur in your uterus, lower back, rectum, bladder, legs and in other areas of your pelvis. The pain is most often cyclical. It most commonly occurs during your period but can also occur during ovulation, during sex, preceding or during a bowel or bladder movement, or during or after a pelvic examination.
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Heavy/Clotting Periods: if you are experiencing periods that are often heavy or ‘flooding’, then this could be an indication of endometriosis associated with excess oestrogen. More than 80ml is a heavy flow. This is 4 tablespoons throughout your whole period (16 fully soaked regular tampons or pads/8 fully soaked super tampons or pads). As your flow should subside as you sleep, you shouldn’t need to be changing your menstrual product during the night.
Large menstrual clots are also a possible indication of endometriosis (also associated with excess oestrogen). A few small clots are nothing to be concerned about and are quite normal, but seeing clots on a regular basis that are larger than 2.4 cm (an Australian ten-cent coin) could be a sign of endo.
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Bowel problems: this can present as diarrhea and constipation, excessive gas, pain or blood with bowel movements, SIBO, IBS-like symptoms, GI-agitation. These are often noted at period and ovulation. Abdominal bloating that builds throughout the day or is present at period or ovulation is also very common for an endo sufferer (the dreaded endo-belly), sometimes to the extent that others will think you are pregnant!
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Bladder problems: you may have problems such as urgency to urinate, frequency of urination, pain with a full bladder, during urination, and after relieving your bladder. These are often noted at period and ovulation. It’s also important to consider that Interstitial Cystitis (Painful Bladder Syndrome) has been labeled as the “evil twin” of endometriosis, with 80-90% of women with endo identified with IC.
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Nausea: feeling nauseous is important to mention as a secondary symptom of endometriosis. Nausea is a GI-symptom and the majority of women diagnosed with endometriosis present with gastro-intestinal symptoms. You can have GI symptoms without endometriosis actually penetrating the bowel. Your endometriosis lesion may be nearby to your bowel without actually being on it.
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Infertility: Endometriosis is a common cause of infertility, as severe endometriosis can twist or block the fallopian tubes and ovaries. The egg’s release may also be blocked due to scar tissue, adhesions or cysts.
However, in many cases, it is not understood why it is harder for women with endometriosis to become pregnant.
Some theories include: poor quality eggs, endo chemicals halt the egg’s movement down the fallopian tube, pelvic inflammation from the endo activates the production of cells that attack the sperm and shorten their life-span, eggs are not released from the ovaries each month (anovulation).
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Allergies and intolerances: the presence of food allergies/intolerances (especially celiac disease), nickel allergy, and histamine intolerance have all been associated with endometriosis
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Migraine-like headaches
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Fatigue & brain fog
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Poor immune system & low-grade fever
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Bleeding between periods
As you can see, endometriosis is a whole body inflammatory disease and you owe it to yourself to follow up on any symptoms that are causing you pain or concern. If your symptoms have been trivialized, missed or the treatment you are currently receiving is not working, go back to your doctor and ask them about the possibility of endometriosis. Remember, a normal ultrasound doesn’t mean you don’t have endometriosis.
I am also here to help you in this process - whether you have further questions, need some encouragement or need support with referrals. I’m also here to support you manage your symptoms naturally!
Endo Website & Books Resources
Here are some books and resources that can help you learn more about spirituality and endometriosis:
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"The Healing Power of the Sacred Woman: Health, Creativity, and Fertility for the Soul" by Christine R. Page - This book explores the connection between women's health and spirituality, and offers insights and practices for healing the body, mind, and spirit.
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"The Endometriosis Health and Diet Program: Get Your Life Back" by Andrew S. Cook and Danielle Cook - While not specifically focused on spirituality, this book offers a comprehensive guide to managing endometriosis through diet, exercise, and other lifestyle changes, which can be an important aspect of holistic healing.
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"Women's Bodies, Women's Wisdom: Creating Physical and Emotional Health and Healing" by Christiane Northrup - This book explores the connection between physical and emotional health in women, and offers insights and practices for healing the body, mind, and spirit.
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"Sacred Woman: A Guide to Healing the Feminine Body, Mind, and Spirit" by Queen Afua - This book offers a holistic approach to women's health, including guidance on spiritual practices such as meditation, prayer, and ritual.
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Endometriosis.org - This website provides a wealth of information and resources on endometriosis, including articles on managing symptoms, treatment options, and support for individuals living with the condition. Here are some sister websites too:
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https://www.endofound.org/ The Endometriosis Foundation of America - This organization provides education, advocacy, and support for individuals living with endometriosis, as well as resources for healthcare professionals and researchers.
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https://endo-sisters.org/ The Endo Sisters - This online community provides support and resources for individuals living with endometriosis, including information on holistic healing and spiritual practices.
- https://endometriosisassn.org/ - The Endometriosis Association is a self-help organization of women and families with endo, doctors, scientists, and others interested in exchanging information about the endometriosis disease. The Association is an international organization with headquarters in Milwaukee, Wisconsin (USA), with members in numerous countries, and activities worldwide.
- https://www.speakendo.com/ - Get tips on how to fully express your symptoms, learn to advocate for your own care, and hear from others who've been there.
- https://stanfordhealthcare.org/doctors/l/deirdre-lum.html - Dr Lum was my Endo Excision Surgeon and I had such a great experience with her!! So just wanted to provide this information to anyone who was curious and looking for someone in the bay area!
- https://www.sutterhealth.org/find-doctor/dr-mohammadmax-ezzati -Dr. Ezzati was my IVF doctor who worked closely with Dr. Lum to help me preserve my ovaries as much as possible to maximize my fertility!
Endo Myths
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Endometriosis is just a period problem
(in fact, it’s a whole body inflammatory disease)
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Endometriosis pain only occurs in your uterus during your period
(in fact, it can occur in your rectum, bladder, legs and other areas of the pelvis. It can also occur at other times such as ovulation, during sex, after a pelvic examination and during a bowel movement. Some have pain all the time and others have no pain at all)
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Endometriosis is caused by retrograde menstruation - when menstrual fluid flows back through your Fallopian tubes and enters your pelvic cavity
(in fact, researchers still don’t know what causes endometriosis. This old theory is losing validity as most women experience retrograde flow but not all develop endometriosis. A growing consensus amongst modern researchers is that endometrial tissue is embedded before birth and stimulated due to immune dysfunction in the system)
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Endometriosis is a lifestyle disease
(in fact, you cannot cause endometriosis by something you do or something you eat. This was out of your control. However, you can certainly treat and control endometriosis with your diet and lifestyle)
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Endometriosis is a hormonal condition
(in fact, estrogen worsens endometriosis by stimulating its growth, but it doesn’t cause it. This is because endometriosis is first of all an inflammatory disease)
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Endometriosis can be diagnosed by ultrasounds or blood tests
(in fact, although the blood biomarker CA-125 and a Deep Infiltrating Endometriosis Scan can detect and support a diagnosis of endometriosis, unfortunately, the only way still to diagnose endometriosis conclusively is with laparoscopic surgery)
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Laparoscopic surgery is a cure for endometriosis
(in fact, unfortunately, for most women (but not all!) endometriosis reoccurs at some stage after surgery)
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There is no other treatment approach for endometriosis apart from surgery, hormonal birth control and pain killers
(in fact, diet, lifestyle, supplements and herbal medicines and therapies can treat the symptoms of endometriosis very effectively!)