Is your period pain normal, or do you have endometriosis?

When it comes to talking about sexual wellness, it is important to encourage people ‘discover themselves’ through curiosity and open communication. This is a message that sexual wellness brand Smile Makers constantly shares with their audience and community, especially since a huge chapter was somehow missing in most of our school sex-education 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! 

Smile Makers also asked their 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? 

Everyone's 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 
• Infertility
• Painful bowel movements
• Fatigue
• '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. 

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. 

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 Smile Makers' 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’. 

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 to answer this one, Smile Maker's called upon the artists. Here are some of the artistic interpretations they found that 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 is endometriosis 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.

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).

Smile Makers asked their 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 the discussion have yet to recieve 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, peace 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. 

Also, many people with the condition have had 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 their community, the levels at which endo impacts their sex life do vary. Some identify the pain getting much worse during intercourse and some experience bleeding during or after. 

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 don’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.

Six tips from the Smile Makers 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. Smile Makers asked their 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: 

1. Diet

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 were 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 heat pack (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!

3. Painkillers

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! 

5. Sleep

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. 

6. Masturbation

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

This article was first published in Smile Makers. Smile Makers is a sexual wellness brand on a mission to inspire vulva owners to set their own standards for good sex. As a brand, they bring sexual wellness products into mainstream spaces, remove limiting beliefs around vulva sexuality and foster a global, pleasure-positive and light-hearted conversation about sex.