10 things I wish I knew about endometriosis when I first started my journey

When I first started down this road at the age of 11 no one could have predicted that it would lead to me starting a PhD researching endometriosis at the age of 36, or the misinformation I would encounter on my journey.

So here are the 10 things I wish I knew about endometriosis back then.

1) Don’t Google your symptoms

Seriously, don’t do it! Because good old Dr Google will convince you that you are going to die. Now I’m not saying don’t try and find out what is going on with you, but please do so with a doctor or medical professional who knows what they are talking about. If I had a penny for every hysterical google search I did, well I would be a very rich person, and it is not good for your mental health. There are a lot of Endo Myths out there that need busting.

2) Be your own advocate

You know your body. You know what is right and what is wrong. Trust it. If you feel that something needs further investigation, then push for the investigation.

I know how hard it is when someone in authority is telling you that you are fine and ‘you just need to get better pain tolerance’ or ‘it’s what all girls go through’ or even ‘just exercise, you’ll be OK’. And they put you on some form of birth control and leave you be. It is hard to speak up. But trust your gut and trust your body. There will be a reason it is giving you these cues.

Everyone will have an opinion, please if these opinions are not in support of you, or do not help in any way, ignore them. Everybody thinks they know best and are helping by telling you what to do or how to live. Going back to the point before, you know yourself and your body best. You do you.

Read more: What it’s like living with endometriosis

3) Find your tribe

There was nothing better for me than finally finding the people that I am now honoured to call my friends. To finally find other people that were going through the same thing as me was eye-opening and validating.

I believed the people who said that my symptoms couldn’t be as bad as they were, and that my pain threshold was low, or that I was just wallowing in self-pity. I will always remember one of the first support groups I went to, my mum cried when we were there because she felt so bad about how she had always treated me.

This tribe will be your strength and your saviour when you are at your lowest or feel that there is nowhere else to turn.

4) Endometriosis will invade every single part of your life

It’s awful to say so but I will be honest. It has the ability to affect everything. From waking up in the morning, to what you can eat, to sex with your partner. The trick is to learn what your triggers are. The best way of doing this and keeping on top of what is and isn’t affected is by keeping a symptom diary. That way you can plan and pre-empt. Don’t get me wrong endo still kicks up without warning or trigger, but I have learned what I can and can’t do 90 per cent of the time.

5) Try counselling

Now I know you are probably rolling your eyes at this one because how many times have, we been told ‘it’s all in your head’ or ‘it really isn’t that bad’. But counselling was easily the best thing I ever did for my endo.

I grieved my old life, accepted my new normal, and learned that it is OK to feel angry/sad/hormonal/happy and anything else I wanted to feel. It’s OK to not want to be happy for your friend that is pregnant again. It’s OK to feel however you are feeling.

They also gave me some amazing tips on how to advocate for myself. It’s why I work so hard with the local talking services and endo nurses to ensure there is a bridge between the two.

There is also something called the sickness cycle where depression exacerbates pain and illness which then exacerbates depression, therapy can give you some amazing tools to help break that negative feedback cycle.

6) There is no quick fix

As much as we want our doctors to fix everything straight away, it is not a possibility. Also don’t expect to have surgery and feel amazing after. As we are being told more and more now, endo is a full-body disease, and it needs to be treated as such.

Having surgery is amazing and for some, it does fix everything, but for the vast majority it doesn’t. Make yourself aware of other services you can be referred to that include pelvic physio, endo specialist nurses, dieticians, gastro teams, talking therapies, long-term condition teams, IVF, chronic pain teams and support groups. These other services will help you manage your every day. We often see our endo surgeon as the person that will fix everything, but in reality, they may only be there for a small amount of the journey.

7) Be kind to yourself

There will be days when endo wins, and you will be in bed all day and will have a heat pack strapped to you. That is OK! We all have those days, don’t let anybody tell you differently, and don’t let anyone guilt you into doing more than you can. That will lead to the negative cycle of just making yourself and your symptoms worse.

8) Movement, again you will roll your eyes at me

Yoga has been fantastic for me. I’m not saying it is for everybody, and I’m definitely not saying you should try some of the Instagram influencer-type yoga and turn yourself into a pretzel lol. But for me, it has been fantastic.

I have a teacher that has dedicated a big chunk of her time to learning all about endo and what people should and shouldn’t be doing at different stages of their cycle.

And again, listen to your body. Some days certain poses will feel amazing, other days it will feel totally wrong, even if you manage a couple of minutes of breath work, that can sometimes be all you need to feel a little better that day.

9) This one is a big one!

Find an accredited British Society of Gynaecological Endoscopy Endometriosis Centre to have your treatment and surgery. This one is a little tricky as you won’t be referred there unless there is a suspicion of ‘deeply infiltrating endometriosis’ (more below), and some will not take you unless you have had a diagnostic lap that has confirmed your endo. But keep pushing for a referral, it will be worth it. These are the doctors that know the most and are best placed to operate on endo.

10) There are different types and stages of endo that need treatment

Yes, you read that right. Now don’t get it confused by thinking that staging/typing = severity or symptoms because it doesn’t. Someone with stage 1 or superficial endo may be in pain 24/7 but only have very few endo lesions on the pelvic cavity, but someone with stage 4 may be covered with adhesions, cysts and lesions and not feel any pain at all so here are the ‘types’.

Types of endometriosis

Superficial peritoneal endometriosis. The peritoneum is a thin membrane that lines your abdomen and pelvis, as well as the organs there. This type is usually lesions or adhesions that form on the peritoneal surface.

Endometriomas

These are dark, fluid-filled cysts. They’re also called chocolate cysts. They vary in size and can appear in different parts of your pelvis or abdomen, but they’re most common in the ovaries.

Deeply infiltrating endometriosis (DIE)

In this type, endometriosis has invaded the organs either within or outside your pelvic cavity. This can include your ovaries, rectum, bladder, and bowels. Sometimes scar tissue can cause a condition called frozen pelvis.

Abdominal wall endometriosis

Sometimes endometriosis lesions can grow on the abdominal wall or attach to surgical incisions. This has been seen a lot in C-section scars.

Extra pelvic endometriosis

Occurs in sites that are not found in the pelvis. Unfortunately, this type of endometriosis is extremely challenging to diagnose.

Stages of endometriosis

Stage 1 or minimal

There are a few small implants/lesions. They may be found on your organs or the tissue lining your pelvis or abdomen. There’s little to no scar tissue.

Stage 2 or mild

There are more implants than in stage 1. They’re also deeper in the tissue, and there may be some scar tissue.

Stage 3 or moderate

There are many deep implants. You can also develop cysts on one or both ovaries and may develop bands of scar tissue called adhesions.

Stage 4 or severe

This is the most widespread. You have many deep implants and thick adhesions. There may also be large cysts on one or both ovaries.

If you do have endometriosis, feel free to reach out to Endometriosis South Coast via the
website, Facebook, support group, and Instagram.

Jodie Hughes is currently a Health Sciences PhD student studying how the care of endometriosis patients differs in different sample groups of people. If you feel called to please consider getting involved in the anonymous survey.