Diagnosed With Endometriosis: Now What?

The information you get shortly after being diagnosed with endometriosis will vary depending on where you're being treated, the doctor/consultant you speak to and your mental state (I was told shortly after waking from anaesthetic, so I missed a lot of the conversation!). If a specialist carried out your surgery you may receive excellent care and information, but for many they are diagnosed via exploratory surgery performed by a general gyne surgeon. They often have limited knowledge of the specifics of endometriosis and rarely know alternatives to medical treatment. For example when I asked my consultant if there were lifestyle changes I could make to complement treatment I was told a flat no - but further research has shown a wide variety of options!

So what should your first steps be upon receiving a diagnosis?

1. Rest

How you feel after surgery will vary - some people won't need telling twice to rest up and recover as they'll be feeling lethargic and in pain. Others will be experiencing their first hours of life without chronic pain and will consider themselves to be feeling fine. I was in this camp, feeling alert and energetic once the anaesthetic had worn off. If this is you, please rest. Your insides will still be healing even if you feel fine!

2. Research Endometriosis

Even if you received a lot of information about your diagnosis, there is still a lot of information for you to find out there. Your doctor will have advised you of their recommended treatment, but be aware this is not always the best route suited to your situation and beliefs, merely their opinion. You'll meet some doctors who know lots about endometriosis and others who have barely heard of it, so the best way to advocate for your own situation is to become knowledgeable about endo yourself. A brilliant book I read early on was Living Well With Endometriosis: What Your Doctor Doesn't Tell You That You Need To Know*. It goes through everything you could want to know about endo in great detail - from the history of its discovery, to exactly what endometriosis is, treatment options and research into causes and future treatments. You don't need a medical degree to read it, but it does contain medical terms that you may need to look up.

3. Find support

It's not easy receiving an endometriosis diagnosis, especially if you have chronic pain symptoms or fertility issues. Even if you just don't know what it is, or need to speak to someone who understands, a support group is full of people ready and willing to help. Endometriosis UK offer a number of physical and online support groups you can participate in, a helpline if you need to talk to someone and an online forum for discussion. Facebook has hundreds of support groups set up by women with endometriosis too - some private so friends and family can't see and others open to help raise awareness. Find a place full of people you connect with so that you have support during the harder times and friends for the fun times.

4. Look into complementary options

If you've found this blog you might already be at this stage, which is great! There are a number of options you have that can complement or replace traditional medicine depending on your beliefs and situation. The Endometriosis Diet is a step you can take immediately towards reducing the symptoms of endo and improving your health. A book I recommend frequently is Recipes & Diet Advice For Endometriosis* - it explains everything in detail, provides recommendations for alternative foods and has hundreds of recipes.

Other options include starting a personalised exercise routine designed to ease and stretch your body without worsening your symptoms (yoga and swimming are particularly good at this) and finding alternative therapies that also help with symptoms such as Reflexology and Reiki. You can also look into supplements that assist digestion, hormone balance and pain relief such as turmeric, B vitamins, evening primrose oil etc. Always check with doctors before starting supplements to make sure they don't interfere with medication.

5. Find things you love that aren't hindered by Endometriosis

One realisation I came to not long ago was that I let all my loves and hobbies slip away over the course of my endo journey to date. Between periods of chronic pain, lethargy and trying to keep an income, I had little energy left for some of the  things I used to love doing such as baking (couldn't stand for very long), reading and crafts (both tired me too quickly). If I could go back I would make time for those things as I think they would've helped my mental health and recovery more than I thought they would at the time.

Whether it's a new television series, photography, writing.. there are plenty of hobbies that won't irritate your symptoms. Even ones that do can be adapted to suit - I've found ways of standing longer for baking for example. The real message I want to convey here is don't let endometriosis become who you are, which is possible if you're suffering constant symptoms rather than cyclical ones.

What did you do when you were first diagnosed? Are there other steps you would add to this? I'd love to hear your experiences in the comments! :)

*These are Amazon Associate links - I make a small commission on the books if you buy them. I own both of these books, highly recommend them and would never link to a product I didn't fully back myself.