I am new to this site...: Hi I am new to... - Endometriosis UK

Endometriosis UK

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I am new to this site...

Cardiff87 profile image
17 Replies

Hi I am new to this site, as I have only recently been diagnosed after many years of trying to get answers. It feels good I am finally getting somewhere with it all and now on the waiting list for an operation. I have had the injection to kick me in to menopause, at 32 a bit of a strange feeling but will stop once I stop the injections. having severe dry mouth from it, but its taken my mind off the debilitating pain that I have been having. nice to read some stories on here and relate to peoples issues :)

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Cardiff87 profile image
Cardiff87
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17 Replies
Lousie29 profile image
Lousie29

hello, I have also been diagnosed at 29 after being told from i was 14 that my peroids were normal!!

Cardiff87 profile image
Cardiff87 in reply to Lousie29

Hi Louise :) did u feel like a weight has been lifted once you had the diagnosis?

Lousie29 profile image
Lousie29 in reply to Cardiff87

yes I deff did, made me feel like finally i was being listened to and it wasn't me being silly.

it's really bad today, feel like my insides are being burned :(

Cardiff87 profile image
Cardiff87 in reply to Lousie29

I had an internal exam Monday,and I've had a lot since I was about 20 - had previous cancer in cervix when I was 22,so I'm no stranger to this. But I'm still really sore from it. My back and belly are horrible :( want to have a duvet week let alone day!

Do you find any painkillers help?

Lousie29 profile image
Lousie29 in reply to Cardiff87

sorry we replied at the same time lol.

goodness that's awful, you've been through a lot.

not really I'm on the ponstan and cocodamol from the doctors and its still agony. do they help you?

people have no idea how sore we actually are its fustrating.

Cardiff87 profile image
Cardiff87 in reply to Lousie29

The injection is meant to help as it chucks you into menopause so stops everything producing and meant to ease the symptoms. I don't find any tablets help enough.

So thankful for finding this website!! :) x

Lousie29 profile image
Lousie29 in reply to Lousie29

how do u feel now u have went through the procedure, ru glad that u did?

Cardiff87 profile image
Cardiff87 in reply to Lousie29

Feeling glad to have been listened to. The consultant was amazing and I said thank you about 50 times - think I done her head in! I'm going back every 5 weeks now to have the injection to keep me in the menopause. Have u been offered this?

Lousie29 profile image
Lousie29 in reply to Cardiff87

no I havnt , cause before the diagnosis i was trying for a baby. so they said to keep trying before I go down the ivf route as I havnt tried yet as they want to do a procedure first. she said of i have a baby it might help ease the pain of it after.

if you stop the injections does the stop the menopause?

Cardiff87 profile image
Cardiff87 in reply to Lousie29

It does stop, so I'm having it every 5 weeks to ease with the symptoms.

X

Lousie29 profile image
Lousie29 in reply to Cardiff87

i have never heard about that before.

does your gp do it or a specialist?

Cardiff87 profile image
Cardiff87 in reply to Lousie29

It was the consultant in hospital. I'm hoping it does help :)

Lousie29 profile image
Lousie29 in reply to Cardiff87

that's great to know that there are more options out there for the pain.

soo many people suffer like us and are continusouly told it's normal :(

Cardiff87 profile image
Cardiff87 in reply to Lousie29

Aww definitely. Its trial and error to see what works until an operation. Its great having this platform to speak to people who are experiencing the same issues

KNJR4 profile image
KNJR4 in reply to Cardiff87

Hi Cardiff87, I’m also in Cardiff and born in 87, and grow passion flowers (like your pic). What consultant did you see? Mine at the Heath is good but the wait times are madness. Had a lap in June after waiting 14 months for it, and still haven’t had my follow up appointment to discuss findings and next steps.

And to reply to your original post, yes when you get that diagnosis you finally feel validated. I struggled through my teens and twenties until finding an excellent doctor who diagnosed me at 28 (in USA). I’d been tested for literally everything- cysts, STDs, Crohns, cancer, kidney stones, gall stones cyanide poisoning... it’s pitiful

how little modern doctors, both male and female, know about women’s health, in USA and UK! I moved to UK three years ago, and learning to navigate the NHS to get proper endo treatment has been an utter nightmare. I’m finally in at the Endo Clinic at the Heath. Any advice is welcome and appreciated.

KNJR4 profile image
KNJR4 in reply to KNJR4

lol the flowers are my pic... 🤦‍♀️

Cardiff87 profile image
Cardiff87 in reply to KNJR4

Hi :) what a small world we live in. How are you doing? Sounds like you have been through the mill.

I had cervical cancer when I was 22, gall stones 2 weeks after I gave birth and found out I have kidney stones in August. So been pretty eventful! But hoping I'm getting somewhere with it all now - fingers crossed. We're u offered the prostak injection? I think that's what it was called. Only had it Monday but hoping it helps in the long run.

Feel free to private message me if u can. Unsure how this website works - I'm new!! X

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