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How Did You Adjust With Your Diagnosis Of Endometriosis?

How Did You Adjust With Your Diagnosis Of Endometriosis?

Wondering how other women adjusted with & accepted diagnosis with Endo. Did you have to change your diet & lifestyle a lot? How did you implement your diet & lifestyle changes? Looking for advice about how to get through this. I have to change so much & it's overwhelming me, while I was already stressed out before I ever knew I had it. No one understands this disease unless they personally go through it. I can't find any face to face support… read more

A MyEndometriosisTeam Member said:

I think it's a huge thing to get your head around. It's so bad that we are left with this news with no after care.

Do you feel that you would benefit from someone helping you through this with one to one support? I think that's what's missing. Information and support after diagnosis. I'm thinking of starting up an endo mentoring scheme. I've run mentoring schemes before and I think it could fill the gap left by medical care.

I am here for both of you. I'm a couple of months past diagnosis and still up and down. We need to support each other :)))

It feels like an overwhelming amount of change doesn't it. I've changed my lifestyle and diet a lot and it takes some getting used to.

The best advice I could give is to be kind to yourself. Imagine how you would comfort a friend who had been diagnosed and then comfort yourself that way. Take time out if you need it. If you're on Instagram there's a lovely endometriosis community there that's really supportive.

Get in touch any time. Big hugs to you both xx

posted about 3 years ago
A MyEndometriosisTeam Member said:

My diagnosis isn't new any more (April 2016), but I still struggle to wrap my head around how it seems to control so much of my life. You aren't alone.

I was eating a plant-based anti-inflammatory diet pre-diagnosis, so that didn't change and wasn't an adjustment, but the rest of my life has changed dramatically.

I had a high stress job that I quit to better manage my health. I accepted a pay cut and a job in the school system to get better health insurance and more down time to rest. It felt like a failure to make the change, but I sincerely believe I did the right thing. I love my job now. Money isn't everything.

The pain and fatigue are probably the biggest adjustment for me. I feel like a ticking time bomb and a slug. I just came home from a vacation in Hawaii, but I spent most of it curled up in pain or forcing a smile for the benefit of my travel companions. We never know when things will flare up, but we have to try to make the best of it.

Mental health has never exactly been my strong point (OCD, anxiety, depression, insomnia), but it's grown worse as the endo has gotten more severe. My OBGYN referred my to a psychiatrist who has been helpful. She seems to have a very good understanding of how hormones, pain, anxiety, and the medications interact with one another. I'm starting to see a therapist too now, and I'm hoping that too will help. This disease seems to have a significant mental impact, and I would encourage you to consider professional support. It has helped me.

My OBGYN says she has done all she can for me and has recently referred me to a reproductive endocrinologist. I am hopeful that the new doctor will have some better management strategies, but like rea says it doesn't look like there are a lot of good options out there for us.

I'm still trying learn to respect my body as it is, including its limitations. I like Heather's suggestion about being as kind to ourselves as we would be to one of our friends.

We might not be in the same geographical location, but know you have sympathetic friends all over the world rooting for you!

posted almost 3 years ago
A MyEndometriosisTeam Member said:

I feel exactly the same... I was lying in bed at 4am with insomnia thinking OMG I think I'm depressed ☹️
The more I read up about endo, the more depressed and anxious I get.. I am 2 weeks post diagnosis and feel very alone aswell.
Please feel free to msg me any time of day, I'm always here for you, endo warriors xx

posted about 3 years ago
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