Contraception and endometriosis: an arduous journey

In this guest blog, 27-year-old Bima Loxley compares the lengthy journey she went through to reach an endometriosis diagnosis to the challenge of finding a method of contraception that was right for her. She explains why we need better education for young people to equip them to successfully tackle these issues.

A new report has shown that endometriosis takes an average of 8 years to be diagnosed, which means that for a lot of endo-warriors out there it may take even longer to find the right treatment for them. That’s a lot of years wasted and I would not wish this lengthy process on anyone!

As a person with endometriosis, I can tell you that with all the pain, the waiting and the confusion I have experienced, nothing quite beats the journey I took to find the right contraception for me. It has been 9 years since my symptoms started and I am now finally happy with the contraception that I am using, both to keep the endometriosis at bay, but to also protect me from unwanted pregnancies with my partner. 

However, even without endometriosis I believe I still would have had an arduous journey to finding the right contraception for me.

I have been on hormonal contraception since I was 16. I believe I’ve tried at least 4 types of pill; had 2 implants and 2 coils; the hormonal injection and, of course, used the good old condom.

Knowing that there is such a huge choice out there for contraceptives is bittersweet. I am so grateful that I was able to access contraception as soon as I needed it and that I have had so many options to help my endometriosis symptoms. But 11 years since I started this journey, it scares me that I went on hormonal contraception with no awareness of my body and what side effects these hormones could have. I didn’t even know how to ask someone for advice and I know this is because of the lack of Relationships and Sex Education (RSE) in schools and the taboo that surrounds the word sex.

This lack of RSE was compounded by a lack of information about endometriosis. I should have received better information to support me to navigate both better.

I suffered in silence because I didn’t have the tools to express what was going on with my body or to shout about my needs. 

I am now lucky enough to know more about myself so I can make better decisions for my body and my endometriosis, but this is because I consciously immersed myself in the sex therapy and sex education world.  Yet even I have to admit that with all that I’ve learnt, I still sometimes have no clue! I feel lost for those who won’t take the same path as me and will most likely remain in the dark about their sexual health and their body’s needs. This is why RSE needs to be better in schools and why I think parents and carers need to be aware of their children growing up and equipped to have conversations about contraceptives and how they work and affect us.

I’m so glad organisations like Brook exist to empower young people to know their bodies and teach them the tools to ask for help if they need it.

So in these 11 years, what have I actually learnt? I have learnt that I would have saved myself a whole world of pain, time and effort if I had 1) known about possible pelvic health issues as a teenager, 2) realised how common endometriosis is and 3) been given the more information about contraceptives instead of blindly trying various methods and hoping for the best. All of these could have been solved by comprehensive RSE. I also wish my family had helped me do the research and I wish doctors had made me aware of more options that suited my body.

One size does not fit all when it comes to contraception and I wish I had known this years ago. I would recommend all young people do some research on contraceptives and know that it is okay to ask your healthcare practitioner more.

If you are in doubt, ask for help and information from a healthcare professional, but also be aware that you know your body best, so listen to it!  

What would I advise? Shout! Shout about the pain you are feeling. Shout about your body not feeling right or if things have changed. Shout and ask for all the options out there before if the suggested choice doesn’t feel right. Know that when it comes to contraception, or even other health matters, there is often another road to take. Do not suffer in silence. We are the experts of ourselves, so make people listen to your needs and do not be afraid to speak up.

We need to create an environment where young people feel comfortable talking to their parents or guardians, or a trusted adult, if they need help. They need to be equipped to speak to their doctor about contraception, whether they need it for the first time or if they want it changing. 

Doctors see dozens of people a day. We need to increase health literacy among young people so that they can clearly express their needs and concerns. We need to let young people of today know they are not alone. I hope that one day sexual health is no longer taboo so that we can talk about it with ease and help each other out when in need!