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Endometriosis – Freeze your eggs and stand your ground says our stage 4 endo columnist

Freeze your eggs and stand your ground – you deserve a diagnosis!

A few months ago we published Emma’s letter to her younger self, explaining the ways that severe endometriosis would affect her entire life. This letter blew up and was shared around the world by sufferers and professionals now she wants to discuss the impact of egg freezing and endometriosis.

When the ‘letter to my 19 year old self’ was published, sharing my tale to an endometriosis diagnosis, I never imagined my inbox would be full of women sharing their stories with me. The positive response has been overwhelming and I am grateful my words have encouraged so many women to stand up for themselves. It makes every word worthwhile.

I was inundated with messages of women telling me it was like reading an account of their own life. Many of us have endured a long journey to diagnosis. It’s how it is, but certainly not how it should be. I will continue to write and share every detail of this debilitating condition to raise awareness and take action for change. I was delighted to see comments on Facebook praising the article for educating those with little knowledge of endometriosis. The more we talk, the more there’s a chance for change.

 

Push for a laparoscopy and a diagnosis because you probably will be fobbed off

If there’s one thing I have learned over the years, it’s don’t take any crap from doctors. Stand your ground. Please don’t walk away from yet another pelvic scan feeling deflated. I’ve said it before, and I will say it again, only you can really know how you feel in your body. I was thrilled to receive a message from a lady who finally secured a date for her laparoscopy after reading my column. She said: “Thank you for raising awareness. I’ve finally got my lap booked in a couple of weeks after pushing and not listening to any crap like you advised.”

A diagnosis for endometriosis doesn’t come easy, and unfortunately money talks. The sad truth is it is far quicker and easier to get the advice and treatment you need by paying privately. Hopefully this will change in the future, but for now you have your voice. Ask for a second opinion. If you don’t feel comfortable with your allocated doctor, ask to see another.

 

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Advice for endometriosis sufferers on getting a diagnosis

Research is key when seeking an endometriosis diagnosis. Find out if your hospital has an endo specialist. If they don’t, then ask where your nearest is located and get on their wait list. Don’t be nervous to speak out and ask questions. Put your foot down. It doesn’t matter if you’re their one hundredth patient of the day, you’re not time wasting, and no one should make you feel that way. Go to your consultation prepared, armed with your questions and ideally data of your symptoms. There are some great apps that track period symptoms and their severity.

While doctors often get a bad rap for ignoring the pleas of women awaiting a diagnosis, they’re not all baddies. Somewhere out there is your endo angel; a doctor who cares and will fight your corner. It will take time to find them, but when you do, you won’t look back. They will be by your side, listening and caring, and you’ll start to grasp control of the beast that is endometriosis. I’m eternally grateful to have an endo team whom specialise in bowel endo and regularly monitor my condition.

 

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Should freeze my eggs if I have endometriosis?

Above all, I’m delighted my letter has opened up the discussion of egg freezing. Women should not be encouraged to have a baby to cure endometriosis, but instead be advised of the options available to prepare for the future such as egg freezing. A number of women have reached out to say they are taking my advice on board and are actively looking into freezing their eggs. One reader said: “I am so grateful to have just read this. You have prompted me to take some muchneeded action and freeze my eggs, something I have been ignoring for some time now.

This little piece of information could’ve potentially saved me six failed IVFs and tens of thousands of pounds. My point is knowing your options is vital, be it egg freezing, finding your specialist or treatment. Be brave, you’ve got this!

Resources:

Endometriosis UK is a wonderful charity with clear advice and resources for endo sufferers

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