Recently diagnosed, looking for some support - Endometriosis UK

Endometriosis UK

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Recently diagnosed, looking for some support

EvelynSands profile image
12 Replies

Hello everyone!

I'm very new here, and just looking for some support and advice! I had surgery 2 days ago and was diagnosed with Endometriosis - I was so relieved at the time because it has taken me so long to get to this point where we know what is happening.

I'm at home recovering from my surgery now, and feel quite overwhelmed by it all now I have had the time to sit down and let it all sink in. Amidst the pain of post op, I'm just having all the thoughts come in at once. Will I have to have it again, what can I do to stop it from coming back, does diet help, will I be able to have kids?

It's all a little overwhelming, and I'm just looking for anyone's advice on how to cope and what nice changes there are to make in lifestyle that helped you with your diagnosis.

Stay safe, everyone x

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EvelynSands profile image
EvelynSands
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12 Replies
079me profile image
079me

I was the same! The best advice I can give you is just take a day at a time. Do you mind me asking how old you are?

EvelynSands profile image
EvelynSands in reply to079me

Of course! I'm 25 :)

plotments profile image
plotments

Hi

Glad to hear your at home and recovering well.

It is a rollercoaster of a journey to diagnoses and although you feel relieved knowing what has been causing your problems it does leave you with far more questions. And yes your emotions do come back all at once and things can become overwhelming Just take things slowly and give yourself time

Did you have any endo removed or have they explained what that did at lap?

take care

EvelynSands profile image
EvelynSands in reply toplotments

Thank you so much. They said they found endo on pouch of Douglas, lateral abdominal peritoneum and US (whatever that is) and they removed what they could. They did a hysteroscopy too, and fitted the coil, and just basically told me what they found. I think I’m more nervous of the fact I know it can come back, and that it can affect my fertility - wanting kids is such a big thing in my life.

I have to see my GP in 6 weeks so I think I’ll have a chat with her about the diagnosis and things like when it can come back, how it can be managed and things xx

plotments profile image
plotments in reply toEvelynSands

Glad to hear they've informed you of what was done.

Having the coil fitted is one of the things they offer you to control symptoms and hopefully slow the endo down. I hope the coil works for you but don't forget there are other hormone treatments that can help, you just need to find which one works best for you.

Get yourself a little notebook and start writing things down that you want to discuss with your GP and things that are important to you like fertility........your mind can go so blank when your with them!!!!

Have you looked any information about the endo diet......a lot of people say that can help

take care and hope your feeling even better tomorrow

EvelynSands profile image
EvelynSands in reply toplotments

That’s a really good idea, writing stuff down. I have so many things running around my head right now!! I’ll have a look into the diet thing, I’m willing to give anything a try! Thank you so much xx

plotments profile image
plotments in reply toEvelynSands

No problem message me if you ever need a chat.

xx

079me profile image
079me

I think we all share the worry of ‘can we have kids’, there are so many success stories of women with our condition having babies naturally and you are still young so try not to worry! I got diagnosed at 35 so my clock is ticking and they told me to try straight away but i am going with the attitude that what is meant to be will be. I didn’t process all the information i was told at the time of diagnosis and It affected me much later and i found this site really helped and just being honest and open with people about concerns and the condition. The good news is we all have this support group and even if we may not have all the answers, we will always be here for each other. Hope you are not in too much pain after your op, i remember i just needed to sleep so much! Have some you time and don’t rush to feel better, it takes time xx

saltna28 profile image
saltna28

Hi Evelyn....Glad you are recovering from surgery . Surgery in itself is traumatic..the diagnosis is traumatic and overwhelming. Do.not discount your feelings. Read and educate yourself as much as you can as education is power.. what type of surgery did you have? I was told I wouldn't be able to have kids and at.the age of 38 when I met my husband we had no trouble getting pregnant twice. So something's.we.never can predict it's.not fully in our control. Take.life.easy. Take time to heal spiritually . Eat healthy clean foods . Don't.be afraid to try new meds. And be kind to your self.

EvelynSands profile image
EvelynSands in reply tosaltna28

I’ve heard a lot of friends saying they’ve got it and had babbies, so I’m just trying to calm myself! I had laparoscopy, hysteroscopy and cool insertion. Thank you, I will be. I’m trying to make my diet healthier and spend more time focusing on myself cx

saltna28 profile image
saltna28 in reply toEvelynSands

Great.. what is cool insertion

EvelynSands profile image
EvelynSands in reply tosaltna28

Sorry that was meant to say coil!! Darn autocorrect x

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