Endometriosis

Endometriosis Symptoms and Treatment transcript

Endometriosis is a condition that causes tissue similar to the lining of your womb to grow in other places in your body, such as your ovaries and your fallopian tubes. It may also grow elsewhere, such as on your bowels or bladder.

Endometriosis is a common condition in women, and it can develop at any age while you have periods. It’s possible for endometriosis to affect anyone who has periods.

During your period, the endometriosis tissue does not leave your body like the lining of your womb does. It builds up, which can cause inflammation, scarring, and pain.

If you have period pain that’s stopping you from working, studying, or enjoying yourself, that’s not normal. It could be a symptom of endometriosis.

Other common symptoms may include: severe pain in your lower tummy or back, known as pelvic pain, pain when you pee or poo, and being constipated or having diarrhoea.

These symptoms may be worse around the time of your period.

Endometriosis pain can be so bad it makes you sick. You may also feel pain during or after sex.

Many women with endometriosis can get pregnant naturally, but for some, it may make getting pregnant more difficult. If any of these symptoms are affecting your everyday life, you should make an appointment with a GP.

Before your appointment, it can help to keep a diary of your pain and symptoms.

Ask yourself questions like: are my symptoms related to my period or menstrual cycle? What is the pain like? And do I have other symptoms too?

The GP will discuss your symptoms and they may examine you. They may also refer you for a scan, or to a specialist called a gynaecologist to find out the cause of your symptoms.

You can discuss with your GP things to ease the pain, such as painkillers, medicine to reduce inflammation, physiotherapy and heat, for example warm baths.

If you’ve tried these and they haven’t worked, your GP might recommend types of hormonal contraception, such as the pill, the coil (IUS), implant, or injection.

These can help thin the lining of your womb, which might ease the pain and stop the disease from growing.

Endometriosis can take a while to diagnose and you may need a number of appointments with the GP and gynaecologist.

Endometriosis can be a difficult condition to deal with, both physically and mentally, but you’re not alone.

Make an appointment with a GP. They are there to listen and help.

To find out more about endometriosis, visit nhs.uk/endometriosis

How is endometriosis diagnoses? Scans, laparoscopy and support

Endometriosis is a condition where tissue similar to the lining of the womb grows in places such as the ovaries and fallopian tubes and occasionally in other areas such as the bowel and bladder.

Common symptoms of endometriosis may include pain in your lower tummy or back, severe period pain, and blood in your pee or poo during or around the time of your period.

What happens at your GP appointment.

During your appointment it’s important that you share with us as much as possible about your symptoms as it could be similar to other conditions.

You can bring somebody with you to your appointment if it makes you feel more comfortable.

If you’re experiencing pain we’ll discuss treatment options that may help you.

These can include painkillers and anti-inflammatories.

Your GP might also recommend types of hormonal contraception, such as the pill, the coil (IUS) implant, or injection.

This is because hormones can be used to try to prevent the progression of endometriosis.

However, if you’re trying for a baby there are alternative treatment options.

When we examine you we’ll check your lower tummy to see if it is tender and gently feel for any possible cause of your symptoms.

We may also do an internal vaginal examination to look and feel for any tender spots and any causes of your symptoms.

If we think a more detailed assessment would be helpful we might refer you for an ultrasound appointment.

This is where you’ll have a scan either over the top of your lower tummy, or by inserting a small ultrasound probe in your vagina, which allows us to look closer at your womb and ovaries.

Results and what happens next.

If your scan results shows signs of endometriosis or another condition, or if your scan result is negative but you’re still in pain despite treatment, we’ll discuss a referral to a gynaecologist with you.

During your gynaecology appointment it is important that you share as much as possible about your symptoms with us, as they could be similar to other conditions.

You can bring somebody along to your appointment if it makes you feel more comfortable.

We’ll talk in depth with you about how to manage your symptoms and if any treatment hasn’t worked for you.

If your treatment options aren’t working, we may recommend a keyhole surgery such as a laparoscopy.

This is often the only way to be certain you have endometriosis.

A laparoscopy is where a surgeon passes a thin tube containing a small camera through a small cut in your tummy so they can see any patches of endometriosis tissue.

We may remove endometriosis or scar tissue during this surgery.

This operation will be performed under general anaesthetic so you’ll be asleep and won’t feel anything.

If it isn’t possible to remove all of the endometriosis during this operation we’ll discuss the findings with you and plan how to best manage your care, which may include a second surgery.

Endometriosis can take a while to be diagnosed and you may need several appointments.

It’s important that you contact your GP if you’re experiencing any symptoms.

To find out more about endometriosis, visit nhs.uk/endometriosis

Endometriosis – My Story

So yeah, it was a relief for me, a massive relief to be told that I wasn’t mad and it wasn’t all in my head.

I think I realised my experience with periods was different when I was in my 30s, actually.

I didn’t have any idea that what I was experiencing from starting my periods at the age of 10, was any different to any other woman.

We didn’t talk about periods in primary school when I started, and we certainly didn’t talk about periods in high school.

So I just thought it was normal and I think one of the reasons for that was because my mum had painful periods, and so I was just made to believe that it was something that every woman had.

So, until my thirties and – you know where I was a little bit more open and talking to friends about periods and how much I was suffering, did I realise that what I was going through wasn’t normal.

I have been to the GP – oh my gosh – hundreds of times with regards to my period issues.

I’d had investigations, internal scans, all sorts of different things and no diagnosis for endometriosis at that point in time, so I was put on the contraceptive pill for most of my teenage years and early twenties.

I had little stints where I came off it and the pain was so bad and then went back to the GPs and they were, you know, just told me “right, just go back on the pill again” and I didn’t really question it. I should have.

It wasn’t until I got to my 30’s and I had my children and decided you know, that I needed to come off the contraceptive pill so my daughters could see what a period was, otherwise what would they know?

I came off the pill and the pain was horrific. I’d never experienced that kind of pain before and so that led me to go and start investigating again.

I went to my GP a number of times demanding I see a gynaecologist and I was then referred.

The gynaecologist asked for scans and the scans came back clear.

A year after that I went back to my GP and said this is not good enough, there is something wrong, this is not normal. I’m in pain through the whole month and it’s all related to, you know, my pelvic area and my uterus, so help me.

And so I was referred again to a gynaecologist. That gynaecologist did some initial investigations and said yeah, I think there’s something not right, let’s get you to a person who specialises in this for scanning.

At that point while I was having the scan they said to me “yeah, we think we can see endometriosis in there, there’s things that probably glued together and adhesions as well as cysts on the ovaries”

And I was like “wow okay”.

This was all at the same time as me going through my breast cancer scans, because I was asked to have all sorts of investigations by that gynaecologist, and I thank her for that because they found early-stage breast cancer, which delayed my diagnosis and my final treatment for endometriosis at that point.

So the actual final confirmation came when I had my laparoscopy in December 2019, just after my 40th birthday.

And my gynaecologist knew how much I’d been suffering and he waited for me to come into recovery and he came over to me and told me that I wasn’t mad and that they had found something and it was endometriosis and it was a “pretty spectacular case” as he called it.

I was massively relieved to be told I had endometriosis.

For so many years I was made to believe that it was all in my head and that it was just something that women had to deal with.

It was a massive turning point for me. It gave me a confidence that I wasn’t mad.

It affects you massively, when you are told for years and years that it’s all in your head.

Firstly, for anyone who isn’t diagnosed with endometriosis, trust your body.

If you think there’s something not right, then it’s not right.

You know, women are great judges of their own bodies and understanding what’s going on.

Push for answers, continue to push.

If you feel that you’re not getting the answers from your GP, reach out to Endometriosis UK, reach out to communities that are easily accessible to see what advice you can get.

You know, I think just don’t stop, don’t give up.

Things have changed, some things are better, others are worse.

So I think it’s really important to remember there is no cure for endometriosis and despite me having had excision surgery with a specialist, I’m still not cured, I’m still not okay, I’m still suffering.

The healing is not linear from this disease, it’s very difficult and so much more has to be done around research and I think that’s the only way.

It’s impacted every part of my life and my children have had to deal with seeing their mum in copious amounts of pain on a regular basis, which is very scary for them.

And I think as a mother, one of the most important things for me is that I never want them to suffer in the same way that I have.

So I think there is a realisation for me and what also the diagnosis did, is push me to find others out there who are suffering like I am.

I’ve always tried to do good through my social channels and I started out actually as a nail artist, but as my life progressed and my health issues progressed, I’d say that that completely changed what I wanted to share on my social media.

I was massively hesitant at first to share anything about my personal life, the fact that I deal with pain on a daily basis.

Does anyone really want to see horrible things on social media?

Does anyone really want to see what real pain and chronic illness is like?

I used to question myself and so I wouldn’t share everything.

I certainly didn’t share very much prior to my diagnosis, that’s for sure, but once I had my diagnosis and I saw how many women were being impacted by this on social media.

So just, you know you go on and you just search for the hashtags: #1in10, #endometriosis and wow – it opened my eyes to a community I never knew existed!

I wish I’d actually found that community prior to my diagnosis, when I was younger. I think it would have helped.

And I can’t even start to tell you how many people I’ve met through social media that suffer and are like sisters to me now, it’s crazy. People you’ve never met in person.

And so it’s been fantastic and I think the more we do with that the better it will be, the more awareness we can raise.

So I’m trying to do as much as I can through my Instagram and my social media channels to try and help raise that awareness and work to raise money for Endometriosis UK and endometriosis charities, so that there can be more research.

And I think social media can be so powerful in that way, and we need to use it for the greater good. And I hope to be able to do that and raise more awareness for things such as endometriosis.