Tips For Living With Stage 4 Endometriosis

This post may contain affiliate links. Disclosure here.

After being diagnosed with stage 4 Endometriosis 17 years ago, I’ve had my fair share of experience living with the condition.

I want to help others who may have only recently had their diagnosis and might be feeling a little lost with how best to manage the condition in everyday life.

These are the most effective things I’ve found to help me with managing endometriosis and live my life more comfortably.

What Is Endometriosis?

Endometriosis is a chronic condition where tissue very similar to the womb lining is found outside of the uterus.

This tissue grows in the surrounding areas such as fallopian tubes, ovaries, bladder and bowels but can also appear anywhere in the body.

The tissue forms lesions that attach to anything they come in contact with, and can therefore cause serious damage and disruption.

What Causes Endometriosis?

The cause of endometriosis is still unclear. There have been varies theories suggested including:

• Issues with immune system creating a lack of defence against illness
• Retrograde menstruation – where the lining of the womb flows upwards into organs rather than down and out of the body.
• Genetics – it has been noted that endometriosis runs in families and occurs more in certain ethnic groups.
• Endometrium cells flowing through the body.
• The hormone estrogen has been shown to promote endometriosis. Research is being done into possible hormone system issues.

Another theory I have seen more recently has been around trauma. Particularly trauma in childhood and early years.

This is not thought to have been proven, however research is looking into the effects of emotional trauma manifesting in the body.

It’s thought that there are likely to be multiple reasons for endometriosis appearing rather than one single cause.

Different Stages Of Endometriosis

As with many chronic illnesses, there are various stages of severity.

With Endometriosis there are 4 stages, each stage represents an increase of severity with the condition.

• Stage 1 = Minimal: There is evidence of Endometriosis in the body. Usually small lesions but little to no scaring.

• Stage 2 = Mild: Potentially larger or deeper lesions, can also be viable signs of scaring.

• Stage 3 = Moderate: Scar tissue called adhesions are more likely to be present, along with cysts and a deeper implant of lesions.

• Stage 4 = Severe: Large cysts can be found on one or both ovaries. Scar tissue adhesions are present along with larger lesions. This is the most widespread stage of the condition.

My Tips For Living With Stage 4 Endometriosis

1. Diet

A few years into my diagnosis I was feeling so frustrated and helpless with my symptoms taking control of my life.

My future felt as though it was in the hands of the doctors that were helping to treat me. I felt a strong urge to take charge over my own health.

I began to research lifestyle and diet changes to help with endometriosis and came across a book dedicated to an Endometriosis diet.

It was here that I started to uncover so much information on nutrition and how it can have a huge impact on many conditions including endometriosis.

I learnt more about the healing powers of plants and how a plant based diet can improve lots of symptoms including pain.

I would encourage you to start researching nutrition and inflammatory diets for endometriosis.

The main changes to my diet included:

• Going Vegetarian
• Excluding dairy (which led me to discover I am in fact lactose intolerant)
• No gluten
• No soya
• Maximising a full colourful variety of fresh fruits and vegetables
• Including plenty of whole foods

2. Always Be Prepared

I’ve found that being prepared has been crucial to managing Endometriosis.

Making sure I always have access to things I might need (in case of a sudden flare up) has been so helpful for me.

Preparation also allows you to feel more relaxed in different situations and not have to worry about the “what ifs” if you do unexpectedly find yourself struggling.

These are some of the ways I stay prepared in case of a flare up:

• Keep a good supply of painkillers at home, work, your bag and your car
• Buy a mini hot water bottle that you can keep and use in work
• Keep heat patches in your bag for discreet on the go relief wherever you are
• Always keep water with you to stay hydrated if you are feeling unwell
• Keep well stocked on tampons/pads and make sure you have some with you wherever you go.

Make sure these things are easily accessible, even when you go to bed!

My pains often flare up first thing in the morning or last thing at night, so making sure I have painkillers, and a hot water bottle/heat patches within reach makes my life so much easier.

3. Plan Around Your Pain

If there is a pattern to your pains and you know when they are going to affect you, try to plan around them. I would often try and power through, determined not to let the pain stop me.

But honestly this just made things worse.

Allow yourself the break you need and take time out for yourself. We need rest so much more when we are experiencing pain as it exhausts our bodies and minds.

Try keeping your schedule free for the week of your period and only do things that you absolutely have to. Really take care of yourself and prioritise rest and relaxation.

4. Breathing Techniques

I’ve mentioned breathing techniques in a previous post about anxiety. And I use the same technique for pain management.

Over the years there has been a few episodes where my pains have got so extreme that I’ve actually been on the verge of passing out.

It’s an awful feeling and can often trigger panic too. To help get me through these times I’ve found that deep breathing with a longer exhale really helps to calm things down.

It may not directly target pain but it really does help the body to relax more, which in turn allows you to cope better in the moment.

Generally for me I would typically breathe in for 6 and out for 8 but you can try different variations to see what feels best for you.

Remember though, the exhale needs to be longer than the inhale. When we exhale for longer it sends messages to the brain signalling that we are safe and relaxed.

5. Lifestyle Adjustments

Endometriosis not only affects us physically, but also emotionally and psychologically.

One of the best ways of managing the condition is to make some adjustments to your lifestyle to create as much rest and harmony as possible.

Here are some ideas of how:

• Give yourself regular breaks at work
• Create a relaxing bedtime routine to ensure good sleep
• Reduce stress by trying meditation and mindfulness
• Practise self care daily

6. Supplements

Over the years there have been many different supplements that I’ve tried to help support my body with endometriosis.

Supplements were most effective for me nearer the early stages of my symptoms as this is when things felt at their worst.

Since having multiple surgeries and various hormone treatments over the years, my symptoms have improved quite considerably.

Fortunately I no longer feel the need to take supplements however if my symptoms did get worse again I would happily reintroduce them.

These are the main supplements that worked for me and an brief explanation of how they worked:

Milk Thistle – Milk Thistle is a plant that contains an active component called Silymarin.

Silymarin helps to decrease inflammation and helps to support the health of the liver.

Liver health is so important for endometriosis as this is where toxins and excess hormones such as oestrogen are filtered out of the body.

I also found Milk Thistle to help alleviate nausea that I would experience during menstruation.

Agnus Castus – Agnus Castus is a plant that helps to support the progesterone hormone while helping to restore balance between both progesterone and oestrogen hormones.

This can help to ease some pms symptoms.

Pukka Herbs Turmeric – Curcumin is the active ingredient in turmeric and is a well know anti-inflammatory.

Curcumin helps to reduce inflammation in the body which can help with adhesions and scarring.

It could also potentially help with pain due to the anti-inflammatory effects.

*Important – Always consult with your GP before taking any supplements as some can interfere with other medications.

FAQs

What are the main symptoms of Endometriosis?

The main symptoms usually include:

• Very painful periods
• Excessive menstrual bleeding and bleeding between periods
• Pain during or after sex

Other symptoms can also include:

• Painful bowel movements or pain when urinating
• Fatigue
• Nausea and vomiting
• difficulty becoming pregnant
• Lower back pain

Can endometriosis effect fertility?

Endometriosis can cause damage to the reproductive organs however this doesn’t necessarily mean that fertility is effected.

It is possible for endometriosis to have an effect on fertility but this is not the case for everyone.

Unfortunately there is usually no definite way to know if your fertility will be effected until you are trying to get pregnant.

How do I know if I have Endometriosis?

If you suspect that you might have Endometriosis my advice is to see your GP as soon as possible.

Diagnosis for this condition is well known to be a slow process so the sooner you get medical advise the better.

Endometriosis is diagnosed by a laparoscopy which is a form of keyhole surgery and is minimally invasive.

During a laparoscopy a surgeon makes small incisions in the abdomen and is able to use a small instrument called a laparoscope.

This uses a light and camera to rely images of the inside of the abdomen.

Final Thoughts

I really hope you’ve found my top 5 tips for managing endometriosis helpful. It’s such a complex condition that can leave you feeling alone and frustrated.

Please know that there are so many sources of help available and lots of different treatments that can improve your symptoms.

Always speak to your GP if you suspect you have endometriosis or if you feel you need extra medical support to it.

Share!