Let's talk about...smear tests when you have endometriosis

Here's a great and informative piece from Endometriosis UK ambassador Dr Larisa Corda which is featured on Jo's Cervical Cancer Trust blog

For lots of women and people with a cervix, smear tests (cervical screening) are something that might feel a bit uncomfortable or embarrassing, but is over and done with quickly. But, for some with conditions such as endometriosis, a smear test can be more painful and can be a really daunting prospect. 

Dr Larisa Corda

We spoke to Dr Larisa Corda, an Obstetrician and Gynaecologist and Endometriosis UK ambassador to learn more. Endometriosis UK is the UK’s leading charity supporting people with the condition. 

“Endometriosis is the name given to the condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. It affects about 1.5 million women in the UK.

"It is a chronic, often debilitating condition"

Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. It is a chronic, often debilitating condition that can cause painful or heavy periods, among other symptoms.

Some women and people with a cervix find cervical screening painful with a speculum but if you have endometriosis, this may be more painful than normal. This is because endometriosis in the pelvis may cause scarring and inflammation, meaning that inserting a speculum can cause profound pain by pulling or stretching the affected area that could be in front of the cervix, to the side or behind it. In addition, some women may (rarely) also have endometriosis affecting their cervix directly.

"Remember that you ultimately call the shots"

If you find the speculum painful initially, this is not necessarily a reason to worry or think you have endometriosis. But if you have other signs and symptoms of endometriosis, in particular or pain during penetrative sex (dyspareunia), then speculum examinations could be more painful. 

Before anything else, it’s a good idea to let the doctor or nurse know about your condition, so that they can adjust what they’re doing. If  you experience pain during the speculum exam, there are lots of tips which can help > 

Remember that you ultimately call the shots and if at any point it becomes too painful or difficult, never feel afraid to say so and ask for the procedure to stop and be rescheduled.”

Nikita Gandhi

Our Fundraising Officer, Nikita Gandhi, shared her experience of having endometriosis and a colposcopy, plus her fantastic tips on making the test better.

"I heard a lot of horror stories about having a smear test when you have endometriosis and thought that having it would make my smear test far more painful for me than it was for others, so I was pretty nervous about my first one. This, however, was completely not true. Although it wasn’t the most comfortable experience of my life, compared to the flare-ups, procedures and tests I have had done to diagnose and treat my endometriosis, this was a walk in the park!

One of the benefits, if you can call it that, of having endometriosis is that you’ve probably already been tested a lot, or poked and prodded down there by countless healthcare professionals. So, while it’s not exactly the same, you’re likely to already be used to the idea of smear tests or colposcopy as a process.

There could be more pain for you if you have endo, but there are things that helped me. 

It might be more difficult to plan your smear tests because endometriosis can make you bleed at random times and flare-ups can happen out of the blue. If you are having a flare-up, a smear test is not what you want to be doing with your day, so don’t be afraid to reschedule – even if it’s last minute. Smear tests are important, but listen to your body. It’s OK not to go if you are in pain. 

"It’s also useful to let your nurse know that you have endometriosis when booking your appointment"

Having said that, try to plan around what you do know. For example, if you know that the week before or after your period is particularly painful for you, try not to schedule the appointment then. Period calendars or flare-up trackers can be great to help you find a good day. You may also have ‘triggers’ or things that make you more sensitive, such as caffeine, alcohol, dairy or gluten. If you know you are sensitive to something, try to avoid it for a few days before.

It’s also useful to let your nurse know that you have endo when booking your appointment. They can often book you in for a longer appointment. A nurse once booked me in at the end of the day, so that I could take all the time I needed. If you find that gynaecological tests have been extremely painful for you in the past, you can also speak with your doctor and ask for a prescription  or different options to help you feel more comfortable during your screening. 

"If you find the test too painful, don’t be afraid to ask your nurse to stop"

When you go for your screening, remind your nurse that you have endometriosis and if you are feeling nervous or worried, or if you find the test too painful, don’t be afraid to ask your nurse to stop. Remember your nurse is there for you, so telling them how you are feeling will help them to make your smear as comfortable as possible for you.

For people with endometriosis, knowing the symptoms of cervical cancer can be worrying as, for most of us, pelvic pain, abnormal bleeding and pain during sex is part of our everyday lives. Just remember that you know your body and what is abnormal for someone else could be completely normal for you. Endometriosis and cervical cancer are two very different things and there is no link between the two conditions so try to keep them separate in your head.

The idea of a smear test might be a bit daunting, but believe me – you will most likely have gone through much, much worse! If you are living with endometriosis, you will already have had to be so strong and resilient throughout your life, so try not to be too nervous and remember that your health care team and Jo’s are here to support you through this."

For more information about smear tests, visit Jo's Cervical Cancer Trust for support.