To put it simply, endometriosis is a condition where tissue similar to the lining of your uterus grows outside of the uterus on other parts of the body. Although there is nothing intrinsically life-threatening about this tissue, it responds to the hormones the same way it does in your uterus; every month the endometrium builds up, then breaks down and sheds. Unlike typical menstruation, however, the blood and tissue shed from these misplaced cells are often trapped in your body, triggering inflammation and scarring as your body struggles to reabsorb the dead material. This rogue tissue can form lesions that become inflamed, may bleed with menstruation, and break down, causing pain, inflammation, and possibly adhesions, cysts, and scar tissue.
What Causes Endometriosis?
Important reminder: endometriosis is not a sexually transmitted disease, it is not intrinsically life threatening, and it is not contagious. Scientists are still trying to piece together how exactly endometrial tissue grows where it doesn’t belong. The most popular theory is that menstrual blood flows the wrong direction, carrying endometrial tissue to the fallopian tubes, ovaries or abdomen. Others speculate that environmental factors or toxins might cause the body to spontaneously produce endometrial cells in the wrong place.
Pain Areas & Symptoms of Endometriosis
One in nine people with uteruses have endometriosis. Some may experience very severe pain, while others may not experience pain at all! Everyone's endometriosis experience is different. Although it’s mostly found in the pelvis and lower abdomen, endometriosis can also spread to the bladder, bowels, appendix, diaphragm, and even the lungs (thoracic endometriosis). Inflammation areas include the ovaries, fallopian tubes, and intestines.
Relax and relieve pelvic floor stress with a hot Tonic bath: Shop Tonic
Other endometriosis symptoms include:
- Severe menstrual cramps
- Prolonged period
- Painful intercourse (dyspareunia)
- Painful urination or bowel movements
- Chronic lower back, abdominal or pelvic pain
- Diarrhea, constipation or nausea
- Infertility or difficulty getting pregnant
- Immune disorders ( allergies, asthma, eczema, and certain autoimmune diseases)
- Yeast infections
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For people who suffer from endometriosis, life is significantly more challenging; quality of life goes down while anxiety and depression rates increase. Many endure the pain of endometriosis for years before being properly diagnosed and even after seeking treatment, conditions may continue to get worse. If you’re experiencing any of the above symptoms and suspect you might have endometriosis, don’t hesitate to make an appointment with your doctor.
Diagnosis & Treatment of Endometriosis
It can take years to be diagnosed with endometriosis. Many people with endometriosis are treated based on their symptoms, without a formal diagnosis. Quite interestingly, the reported delay in the diagnosis of endometriosis is much shorter for people who present with infertility than for people who present with pelvic pain, suggesting that clinicians are more responsive to infertility rather than reporting pain.
Unfortunately, there is no known cure for endometriosis. Treatment focuses on symptom management while trying to prevent the endometriosis from spreading. Doctors typically suggest one or more of the following treatment options:
Painkillers Anti-inflammatory drugs and analgesic painkillers help sufferers cope with the painful symptoms of endometriosis, but do nothing to prevent the disease from progressing.
Hormones Another popular prescription for endometriosis is for hormone therapy, which is thought to alleviate symptoms by reducing the strength and/or quantity of menstrual cycles.
Surgery Doctors can surgically remove the misplaced endometrial tissue, which often provides relief, but only temporarily. Unfortunately, there is a high risk of complications, and approximately half of patients will have their symptoms return within one year, requiring further treatment. The pain from permanent endometriosis scar damage can also persist beyond menopause, requiring lifelong pain management.
Lifestyle changes Some people consider alternative treatments for their symptoms including physical exercise, diet changes, and even acupuncture. While there is still little research and a lack of evidence for the effectiveness of these holistic approaches, we always encourage a balanced diet and regular movement.
If you feel your doctor is not giving you the information you need to feel confident in your diagnosis, don’t be afraid to ask for a second opinion, and do your own research as well. The only real way to end the myth that chronic pelvic pain symptoms are “normal” or "just period cramps" is to challenge the way things are done in the medical community. Don't be afraid to ask for more research, more tests, and more answers. It’s likely going to be a long and frustrating process but you—and your reproductive health—are worth it.
Meet Venus Libido
Meet Venus Libido (she/her)—illustrator, presenter, activist, model, podcast host, and sufferer of endometriosis. Her cheeky illustrative work is best known for breaking down taboos and challenging social norms.
She shares her journey with endometriosis from self-doubt to claiming control of a seemingly out of control situation—namely finding and offering support through an online community. Follow Venus Libido at @venuslibido.
A self-portrait by Venus Libido for Endometriosis Month.
What would you recommend to someone who is trying to find the source of their discomfort?
I would say to do as much research as possible. Educate yourself on all the possible diseases and conditions that can occur in gynecological health then you can start to narrow it down. For me, it wasn't until I put myself into the world of gynecological health and began to listen to other people's stories that I then found my path to putting a name to my own pain.
I also think it is really important to listen to your body. I brushed my pain off for over 20 years and just put it down to 'well that's life' kind of attitude. When really, I should have listened to what my body was saying and what it needed and given it the break it deserves. I was always the kind of person who didn't think I was allowed to rest and thought resting was just being lazy. Now I know that's the wrong mindset and everyone must rest when their body tells them to—otherwise we don't allow ourselves to heal mentally and physically.
What products or methods have you used to help alleviate your pain?
The best methods for me have been very specific to my condition and finding out what reduces my endometriosis pain when I’m at my worst.
- Exercise has changed my life and having a PT (personal trainer) to keep me motivated. I walk, go to the gym or do pelvic and core exercises every week. I have definitely noticed a difference by being more active in reducing my pain.
- Change in diet and alcohol intake. Although there is very little research, many people—myself included—have noticed that by going gluten-free, their pain has massively reduced. This has most certainly been the case for me.
- Other small steps I take when my pain is at its worst is using a hot water bottle and BeYou patches and sometimes CBD supplements.
Look At Your Vagina by VenusLibido
How does chronic pain affect your day to day life?
Endometriosis isn't just a bad period. With it comes depression, fatigue, back pain, the worry of being infertile, aching legs, pain during and after sex, sickness and bloating, painful bowel movements. The list goes on!
So depending on how severe any of those things are on the day, it can leave you completely lifeless and stuck in bed for days. It has and continues to affect my mental health, my ability to work comfortably, and, at points, it has affected my relationships and sex life.
Has it been easy finding an endometriosis community? What have you gained through community? What would you recommend for someone looking for community?
Yes, thanks to social media, it has been fairly easy to find a community of people who are willing to share their journey with me. There are also plenty of pages in support of endo with lots of helpful information and resources and plenty of people documenting their progress which is great to see.
I was also invited to take part in a naked photo shoot at the start of this year involving women with endo scars which was really liberating. I made plenty of new endo friends there and we all now have a Whatsapp group where we all help each other out.
If you are looking for a community, then I would start by searching Instagram and finding friends to talk to on there. I would also attend (when it’s safe) charity events around gynecological health. I first found out about endo at an Eve Appeal event and everyone was so open and honest about their experiences.
Me Everyday by Venus Libido
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Momotaro Apotheca and its materials are not intended to treat, diagnose, cure or prevent any disease. All material on Momotaro Apotheca is provided for educational purposes only. Always seek the advice of your physician or another qualified healthcare provider for any questions you have regarding a medical condition.