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What I wish I'd known about treatments for endometriosis

I wish I’d been told about things that I could explore for myself and been empowered to look into them further.

Bhavni lives in London and is one of our London Support Group Leaders.

I was diagnosed with endometriosis in 1999.  I was in severe, constant pain, and after an ultrasound the gynae had seen that I had a cyst the size of a grapefruit on my ovary and was fearful that it was twisting and likely to burst.  So, I had emergency surgery.  It was only after the surgery that I was diagnosed.  Unfortunately, the treatment options given to me back then were fairly limited - 3 months of Zoladex and a post-op review.

I’ve had more surgeries and many medical treatments, including Zoladex and the Mirena coil but have also tried complementary therapies including acupuncture, meditation and making changes to my diet.

I have noticed a positive shift in my symptoms since starting acupuncture. I have it twice a month (mid cycle and just before my period).  I have only been having it regularly for the last 6 months and it hasn't fixed everything...yet! But I have definitely seen an improvement.  I also changed my diet 3 years ago to be pretty much dairy free - I have noticed a huge change in the pain since then.

I also try and exercise at least a couple of times a week.  I find that exercise generally helps to release any stress and anxiety which inadvertently helps my endo symptoms too.

I wished I had explicitly been told that surgery is an option and that it is not mandatory.  Quite often, doctors inform you of the options as they see them (things that they can fix), and in my case that was a lot of surgery in a short successive period of time.  I wish I had been told about things that I could explore for myself (i.e. change in diet, exercise, nutrition, meditation) and been empowered to look into them further.  However, none of these other options were really discussed with me.  Knowing you have a choice is powerful, and I am not sure if this is always explained or that patients are given time to fully consider their options.

Bhavni's top tips for managing endometriosis:

Listen to your body - be aware of when you have bad symptoms and try to think about what is different to make your symptoms worse at that time (food, stress, time of the month etc) - learn about you and your body as everyone is different.

Exercise is good for making your mind and body feel better - it has really helped me manage my symptoms.

Diet - test what foods/drinks make your symptoms worse and eliminate them from your diet.

Talk to people about how you are feeling.  This condition can make you feel very lonely (as it is quite personal, only you are going through it and your symptoms can be so different to another sufferer's) but talking about it really does help!

If you feel like you need someone to talk to about endometriosis, we have a number of support services including our Helpline, HealthUnlocked forum and Support Groups. Find out more on our support pages