endometriosis

Hi,

This is my first post. I have just recently been diagnosed withe endometriosis however i have known for years that I was suffering from it but was misdiagnosed. It has taken my 7 years to get a final diagnosis,

I have recently had my first laparoscopy and been treated. I have stage 2.

I feel I've not been told much about it and where i go from here & i dont know anyone else who suffers with it.

Im just looking for some advice.

8 Replies

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  • Hi Steph, welcome to Endo Club! 😉

    I'm waiting on my first lap so you're ahead of me, but this forum is full of women who are at all stages of the diagnosis and treatment process. It's a nice place to come when things feel overwhelming - you come here and you'll see how very not alone you are.

    Hang in there and best wishes to you!

  • Thank you for your reply, do you have endo or waiting for a diagnoses?

    i had my lap 10 days ago. i was not given much information & was under for an hour and half. Had to ask what was found as my surgeon was busy as i didnt have a clue. Was told by the nurse i had stage 2 endometriosis and that i had treatment. Was not informed about recovery what to expect was given painkillers and discharged.

    Now i feel im alone.

    My recovery has been ok the gas for the first 4days was quite painful espeically in my shoulders i tried to have a lie down when i got home worst move i made as the pain in my shoulders was just something else and i felt i couldnt breath. so i would advise you sit up with lots of cushions when u try and rest for the first few days at least.

    i'm feeling alot better now but still struggle to bend over or lift anything heavy. My belly button stings alot but ive been told thats down to nerves. I am off work for at least 3 weeks due to being in a physical job on my feet all day

    I hope it all goes well for you.

  • I haven't had my lap yet, am waiting currently. I've had difficult periods since puberty and I'm now in my early 30's. I first broke down and went to the doctor in January and by March, after a visit to the A&E, was referred to a gyno center and they told me to try birth control for three months. Didn't phase it. Then I waited from June to a week ago for my referral back to the consultant and now I'm on a 12 week wait for my first lap. It's taken a year to from my first doc appt to get to the lap, but, from what I've read, this is all par for the course.

    Loads of women here have said peppermint tea is really good for the post op gas pains. It may be too late to help you with that, but that's what I've seen advised here. ❤️

  • Hey there and welcome xxxx

    Firstly i would ask the hospital for a copy of the write up notes of your operation to be sent to you, which should usually be sent out a week after. It should state what is found and any treatment performed.

    In addition to Endo UK, I found this website a useful starter for learning more about the complex condition, everything is peer reviewed.

    endometriosis.org/treatments/

    Go gently, despite the small entry wounds, laparascopic surgery is still a significant injury to the body that takes time and rest to recover from, especially if you had treatment as well as diagnostic surgery. xxxx

  • There is a lot of good information on the Endo UK web site, have a read of that and if you have any questions either ask their helpline or post in here. We are all here for you.

    I would still have peppermint tea as the gas can linger for weeks. Rest and don't do too much, any questions I'm here xxx

  • thank you ladies. How long to it take for you to recover and how much time would you recommend off work?

    i will take a look at the endo website x

  • I had a lap 7 days ago. They removed my ovary and Fallopian tube. I have been signed off for two weeks but also do a physical job so think I may need another week. Hope you are feeling better soon Steph_D x

  • My lap was only a diagnostic one, no treatment and was back to work in two weeks. My second lap was stage 4 endo excision and a total hysterectomy so recovery of 8-12 weeks, currently 7 1/2 weeks done.

    You need to take as long as your body needs especially as your body has been through a lot xxx

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