At Smile Makers, we love talking about sexual wellness. And when we talk about sexual wellness, we encourage all of those in our community and beyond to ‘discover themselves’ through curiosity and open communication. This is often with regards to a huge and vitally important chapter that was somehow missing in our school sex-ed classes when we were teens, the chapter titled ‘Pleasure’. Knowing one’s body and feeling empowered to listen to it is vital for pleasure, it’s true. But it’s also an extremely valuable tool when it comes to health.
And with endometriosis, the two can be very closely linked. But how? Given the large number of cases worldwide, you might think that endometriosis is a commonly discussed and recognised condition. However it is clear that even today, those affected still may be completely unaware that it exists and public awareness of the subject is still critically low.
10% of those assigned female at birth, world wide, have endometriosis that’s 176 million worldwide.
Rogers PA, D'Hooghe TM, Fazleabas A, et al, 2009
So let’s talk about it!
We also asked our community to help by sharing some of their stories with us so a huge thank you to them because the most powerful tool for people with endometriosis is undoubtedly; community. Discussion around endometriosis leads to better understanding and care.
What is endometriosis?
Endometriosis (pronounced en- doh – mee – tree – oh – sis) is the title given to the condition where cells similar to the ones in the lining of the womb are found elsewhere in the body.
‘During the menstrual cycle, the body goes through hormonal changes each month. Hormones are naturally released which cause the lining of the womb to increase in preparation for a fertilised egg. If pregnancy does not occur, this lining will break down and bleed – this is then released from the body as a period.
In endometriosis, cells similar to the ones in the lining of the womb grow elsewhere in the body. These cells react to the menstrual cycle each month and also bleed. However, there is no way for this blood to leave the body. This can cause inflammation, pain and the formation of scar tissue.’ (Endometriosis UK, 2022)
Endometriosis can affect you from puberty to menopause, although the impact may be felt for life.
What are the symptoms?
Every body is different when it comes to endometriosis and symptoms can vary in intensity and severity. Each person experiences pain differently and the amount of endometriosis does not correspond to the amount of pain and discomfort experienced. Also, some people with endometriosis don’t experience symptoms at all. Endometriosis can look like:
- Painful periods
- Pain during or after sex
- Pelvic pain
- Painful bowel movements
- 'Spotting' or bleeding between periods
- Symptoms of irritable bowel (diarrhoea, constipation, bloating, pain before, during or after passing urine or opening bowel - particularly during your period)
This list is in no way definitive as the condition can affect areas such as the bowel, the urinary tract and other organs as well as the uterus.
But periods hurt for everyone, right?
This is what we are told from a very young age, yes? Before we even start to menstruate, we are prepared by elders and parents and older siblings and aunties and the neighbour’s cat that periods will hurt. This pain is begrudged by all who experience it but is largely accepted and therefore expected, in society. However what is not often articulated, is that the period pain you experience each month, and sometimes at other times during your menstrual cycle, should not impact your life in a severe way. Pain that debilitates you or that means you have to miss days off school or work, is not normal and could be a symptom of endometriosis.
“My endo has been misdiagnosed and dismissed for years as something ‘normal’ because period cramps are 'always painful'.” Ann, 26
One of the reasons diagnosis for endometriosis can take so long in many cases is that often menstruators expect pain. And as we do not have a reliable or accessible method for measuring what ‘normal’ pain feels like for anyone external to ourselves, a level of pain that is absolutely not ‘normal’ can often go unflagged.
‘In my case, I was gaslit most often by doctors and professionals. From the age of 12, I would often be sent home from the doctor’s surgery with a pat on the head and a ‘periods just hurt darling’. It wasn’t until I was missing several days of school each month or being sick in classes due to period pain that I started to look at the problem head on. I was fortunate also that my Mum as well as four of her sisters had official diagnosis due to years of difficulties with fertility so I knew endometriosis was a thing and was almost sure that I had it too.” Eliza, 24
Endometriosis is often hereditary which can be a blessing and a curse. In some cases having relatives that have suffered from the condition unknowingly may mean that the expectation for pain with periods will be even more perpetuated however in many cases, this is how many people come to hear of the condition and therefore seek treatment for themselves. In fact, this is how half of our community with endometriosis first became aware of their condition, which only encourages us to talk about it more. This shared knowledge can also lead to empowerment to vouch for ourselves and our bodies in the face of a difficult system that doesn’t easily acknowledge that this pain is not ‘normal’.
“Every person is different and every cycle is different. Find the endo community and don’t be afraid to ask about the weird pains and details you think are normal.. once I’ve said random things out loud, I realise it’s not normal. Talk. You’ll often find confirmation you’re stronger than you thought and you’re not alone in it.” Caroline, 31
What does endometriosis feel like?
An image speaks a thousand words, right? Sometimes, words just don’t cut it when it comes to describing pain. So we thought to answer this one, we would call upon the artists. Here are some of the artistic interpretations we have found to illustrate how endometriosis feels…
1. Venus Libido: Fire Sickness (Copyright © Venus Libido, 2021)
2. Selby Hurst: Misery Roulette (Copyright © Selby Hurst, 2021)
3. Lila Ribot: Tug of Womb (Copyright © Lila Ribot, 2021)
4. Barbing by Emma Sutt
How endometriosis is diagnosed?
Getting diagnosed with endometriosis can take a while. The symptoms of endometriosis are very similar to other common conditions and it is important to share as much information with your doctor as possible.
The only definitive way to receive a diagnosis for endometriosis is by a laparoscopy - a keyhole surgery operation in which a camera is inserted into the pelvis via a small cut near the navel. The surgeon uses the camera to see the pelvic organs and look for any signs of endometriosis. If endometriosis is diagnosed, the endometriosis may be treated then and there or removed for further examination during the laparoscopy.
“The crazy thing is that endometriosis can’t actually be seen on an ultrasound - the only way of knowing you have it for definite is if you have an laparoscopy!!! This was never explained to me when having the ultrasound and gave me the umph to keep pushing to see a gyno.” Soph, 24
Scans, blood tests and internal examinations are not a conclusive way to diagnose endometriosis and a normal scan, blood test and internal examination does not mean that you do not have endometriosis.
‘Because endometriosis manifests itself in a variety of ways and shares symptoms with other conditions, diagnosis can be difficult and often delayed. Recent research shows that there is now an average of 7.5 years between women first seeing a doctor about their symptoms and receiving a firm diagnosis’ (Endometriosis UK, 2022).
We asked our community how long it took for them to be diagnosed and almost half said that their official diagnosis took between 10 and 15 years to obtain. It’s also true that a quarter who took part in our conversation have not yet had a formal diagnosis and are still waiting to receive treatment.
This information can be disheartening and as there is no ‘cure’ as such, people may think it is not worth the hassle. However piece of mind can go a long way and in a world where we are often told that we are ‘ovary-acting’ (a horrible accidental pun there that will be painfully funny to some), just knowing that there was a reason for your pain can improve the situation.
“When I came out of the operation, the first thing I said was ‘did they find it!!!’ the nurse said yes and honestly I just cried and cried tears of relief! I was so drugged up and drowsy I just kept asking again to check I hadn’t imaged it! Even though it’s not good that I will have to live with this for the rest of my life, at least now I know I have it, I can feel more confident in my own body and have autonomy in my diagnosis.” Soph, 24
Also many people with the condition have multiple surgeries over the years as during the laparoscopy, the surgeon can remove some of the endometriosis to manage the pain over time. The surgery itself may not help every patient or provide relief but it can however, provide a good starting point to learn more about the severity of the condition in the individual.
Endometriosis and sex - what’s the impact?
According to our community, the levels in which endo impacts their sex life does vary. Some identify the pain getting much worse during intercourse and some experience bleeding during or after.
“When it comes to sexual experiences, intercourse is impossible and any form of penetration causes excruciating pain, so to many I'm still considered a 'virgin', even though it's possible for me to experience intimacy without having a ‘P in V’ sex.” Ann, 26
Experts say that the pain many can experience during intercourse is due to penetration pushing and pulling tissue growth behind the vagina and lower uterus, making it super uncomfortable; and inevitably, hard to access our pleasure. When pain outweighs pleasure, we shouldn’t feel the need to ‘push through’. Each and everyone one of us has the right to pleasure! Partnered sex is WAY more than just penetrative sex, and intercourse is not the only way for us to get intimate.
Outercourse involves everything from hugging to stimulating the clitoris (which by the way, is how most vulva owners reach orgasm) and all still counts as sex! Take time solo to discover what truly gives you pleasure and explore types of stimulation that doesn’t cause pain. When you know how to navigate your own body and needs, it’s much easier to tell your partner how to, too. Communicate how it feels, what feels good (or not-so-good) and explore all the other ways both of you can find pleasure together.
6 tips from our community on dealing with an endometriosis flare up
There is currently no cure for endometriosis. However, with the right endometriosis treatment, many of the symptoms of endometriosis can be made more manageable. We asked our community what helps them during a flare up and to share any tips or tricks they may have for dealing with the pain and fatigue. Here’s what they said:
Some recommended healthy eating or juicing for a boost of vitamins and goodness. Light foods and a diet high in antioxidants and low in oestrogen was also recommended whilst others mentioned cutting out things like alcohol can be beneficial.
“I’ve found that avoiding specific things that cause me to flare up can help, such as alcohol. Additionally strong painkillers and a large meal to keep up my energy levels on the day my period starts.” Soph, 24
2. Heat therapy for pain
Whether that be in the form of a hot water bottle, a wheat bag (extra love for versions of these two which can wrap all the way around your front and back). Heat could also help in the form of a hot bath or shower or a heated blanket!
A strong contender. Finding the right type and dosage for you can be trial and error.
4. Low impact exercise
Getting out for some fresh air for a walk or a jog or maybe a swim. Sometimes gentle movement of the body can be extremely healing for the pain. And if needed, why not combine the two and take portable heat pads with you on your walk, or to work or school!
Naps came up a LOT. Because sometimes moving your body isn’t an option and giving yourself a reset in the form of a snooze is sometimes the only option.
This one might just be our favourite and it’s no surprise that our community recommended external orgasms for pain management. A remedy we can wholeheartedly endorse…
There were other methods which are worth a mention such as aromatherapy for nausea, a TENS machine, primrose oil or pain management techniques such as counting backwards or horse riding demonstrate how different things work for different people. But sometimes the best thing to do is to tap out. Take a break. Stay home and go slow.
“Taking the time you need, warmth, having pain management techniques that work for you and just crying it out.” Tink, 26
Finding your endometriosis community.
Here are some accounts and people to follow that can help you find your endo tribe. These are the champions of sharing information and stories to make you feel a little less alone on this journey…
Christy and Hannah, two friends with endometriosis who run a joint account to act as a safe space to raise awareness for all things endo. They feature stories of surgeries and platform artwork and have curated an online community for endo sufferers.
A platform for awareness, information and conversation. Founded by Bridget Hustwaite, this platform shares artwork and stories to bring an endo community together.
An Endometriosis Australia champion, this Australian based community founded by Emily Doherty has curated a community for endometriosis awareness and support.
Feminist fashion for eco-conscious babes. This slow fashion brand is owned and run by queer and fabulous endo gal Soph Koumides. She has featured her story through her brand platform and is definitely one to follow!
More stories from the Smile Makers community
“One of the most important things I have learnt through my endometriosis journey so far is to vouch for myself. You know your body better than anyone and it can be difficult to hold your ground when diagnosis is often after years of back and forth and creeping doubt as to whether you do in fact, just have a low pain tolerance. My ultimate validation moment came about a year after I had my first surgery. When I got my first tattoo, the artist warned me the positioning of the artwork would be extremely painful and perhaps make me faint/cry/throw up which freaked me out. However, when she started cautiously, I burst out laughing! The pain was so insignificant to the years of pain I had endured throughout my 12 year diagnosis for endo, it made me laugh the whole way through the three hour sitting. Since receiving surgery, I am able to understand my body on a deeper level, knowing when a flare up is on the way and speaking clearly and succinctly when speaking to doctors to cut to the chase as wait lists for scans and surgeries are still massively oversubscribed so I no longer wait until the pain is critical to seek help.” Eliza, 24
“I think for many endometriosis is still a taboo topic and I hope that it will change and that more people will educate themselves about it so that they can realise that it is a chronic and often very debilitating condition that still, there is no cure for. ” Ann, 26
“My biggest tip is that you know your own body and you know what it needs so listen to it!” Tink, 26
“I look at others and wonder what it’s like to live a day without pain. But we are so fortunate to live in this time with more communication, awareness, and allowance for our needs. Listen to your body, listen to what it’s doing and what it responds to. Can’t urge enough to try diet and natural aids. Keep going, keep fighting, keep breathing…” Caroline, 31
“ I encourage others to pay attention to their pain and to get answers for what you are experiencing. We shouldn’t have to live in pain everyday. ” Adanna, 24
This blog was written by Eliza, our Social Media Intern in January 2022. She is an actor, director and writer who lives with endometriosis. Her journey with endo started when she was around 12 and began menstruation yet did not reach a formal diagnosis until the age of 21. She is now nearly 25 and on the wait list for a second laparoscopy after living a much better quality of life after the first surgery and the insertion of the mirena coil. She is very passionate about spreading awareness around the topic of endometriosis and is currently writing a film about how this can affect a person’s life and fertility. She also runs a small business named @funkyfoof which can be found on instagram, raising awareness and starting conversation with fun beads and accessories. You can follow her on socials at @elizabstevensx.