Hi lady here's my story please dont hesit... - Endometriosis UK

Endometriosis UK

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Hi lady here's my story please dont hesitate to ask me anything xx

Leighjen36 profile image
8 Replies

Hi my name is jenna I was diagnosed with endometriosis in 2005

I was a heavy bleeding very young

The pain I was in was unbearable I got pregnant at 18 and after my 1st child I struggled with my 2nd it took me 4 years 4 laps and diathermy I eventually fell pregnant endometriosis ruined my life for many years I suffered mentally physically and emotionally I was ignored for years after and left were I was eventually checked again and had stage 4 endo had to have an hysterectomy cervix removal as I had a mass at the top it was all.over my ovaries pouch of Douglas on my urethra my rectum fused my bowel and bladder to my wall I was 30 when I had this 3 years after I had ovary removal

I want to help anyone who is dealing with this my results after my hysterectomy was adenomyosis it was much deeper xx

I want to help spread awareness and speak out xx

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Leighjen36
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8 Replies
CrystalKeeper profile image
CrystalKeeper

Hi thank you very much!! Did you take hormones like Zoldaex or Viisanne after your surgery? Have you had an re-occurence of endo since then?

Leighjen36 profile image
Leighjen36 in reply toCrystalKeeper

Hi hun I cant take hormone replacement its makes me very I'll bit now its cause me to have very low bone density that i need to have tests for I'm still having bowel and bladder problems so in the process of a referral x

endopositive profile image
endopositive in reply toLeighjen36

Visanne is just dienogest 2mg, nothing hormonal and it saved my life. Now made in UK for endo called Zalkya and it is available at boots, try then come and reply here. No horrible hormones and no periods.

Hi Jenna, thanks so much for sharing your story!

I’m 19 and am currently recovering from my first laparoscopy a few days ago where I was diagnosed with endo. So I’m really new to all of this! It’s really bittersweet to have the diagnosis and to know all it’s implications. I wanted to ask if you’ve found changing your diet has helped you?

What advice would you give someone just starting out? Thanks!

Poppy96 profile image
Poppy96

Hi I’ve just read this and I don’t want to sound rude or anything but this is the thought of thing that scares me. 3 weeks ago I had an ultrasound and was told they have found two patches that suggest endometriosis. I have been struggling with my periods since I was 13. Been to a gynaecologist a few times and then I had that news three weeks. It was so difficult to even get that far, doctors were just ignoring me (I am now 24) and I hadn’t thought about children but now I’m worried if I leave it longer I’ll miss my chance. I am currently still waiting for a report from my doctor or any correspondence from them. I feel quite lost at the moment. Surgery absolutely terrifies me! But now that seems like it could be in future. It’s so daunting! And I’ve sort of just been left with that news an no suggestions of ways of dealing with it. I’m just still left waiting for the doctors. I currently have bowel problems (tmi) and I’m worried it’s caused but the endo but I currently don’t know where those patches were even found. They reassured me that my ovaries looking perfect, but all that’s in my brain now is for how long are they going to be perfect for. Thank you for sharing your story, it’s nice to know that even after how much you’ve been through, you still have managed to have two children and share your story. I think people need to see this side of endometriosis because it almost helps prepare others for a journey that may not be smooth. 💛

Moon_maiden profile image
Moon_maiden in reply toPoppy96

It is scary at any age, give your GP a call and go through it with them, write it all down first, makes things easier. You can request a copy of any of your medical records free of charge for anything on a computer, you may have to pay for other notes if photo copied. Same with the hospital, there’ll be a form on the website. Hope you get some answers soon 🙂

Poppy96 profile image
Poppy96 in reply toMoon_maiden

Thank you! :)

Leighjen36 profile image
Leighjen36

I have just had surgery and they found a peritoneal tumor in my bladder x

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