Any advice?: Hi Ladies, I have my first... - Endometriosis UK

Endometriosis UK

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Any advice?

EllaRoseX profile image
10 Replies

Hi Ladies, I have my first Endo appointment tomorrow at st michaels Bristol which I’ve waited 2 years for and I’m worried about not being taken seriously, does anyone know what the initial endo appointment is like with a consultant? or have any tips I want the appointment to be worth while as I’ve waited so long for it I have a diary to take me with that I have tracked throughout the year has anyone else got any advice

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EllaRoseX profile image
EllaRoseX
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10 Replies
AllthatGlitters profile image
AllthatGlitters

Hello. At my first ever gynaecology appointment I spoke to the consultant and also had a transvaginal scan. After my scan I spoke to the doctor and she said due to the pain and a cyst on my ovary they were going to do a laparoscopy. I wasn’t ready for her to say that which came as a bit of a shock. I would let them know in detail how much pain you are in, other symptoms such as bleeding, bloating and how it effects your daily life. Also if you are offered surgery ask them what list you will be put onto, they have different categories which mean certain waiting times so it gives you an idea of how long you will wait.

Let us know how you get on x

EllaRoseX profile image
EllaRoseX in reply to AllthatGlitters

Okay that’s great thank you for your help x

EndoJaz profile image
EndoJaz

You are doing the right thing by taking a detailed symptom diary. Try to stay calm (I usually end up crying) a friend of mine had a hysterectomy at St Ms and said it went very well. I attended the support group meetings when they were there. Can’t wait for them to start up again. May see u there one day, good luck x

EllaRoseX profile image
EllaRoseX in reply to EndoJaz

Thank you xx

Jmiller623 profile image
Jmiller623

I was referred by my gynecologist because I have jumbled ovarian cysts that wouldn’t go away even after birth control. Then when I saw the surgeon, he felt up my bum and could tell my uterus was tethered down by adhesions. I nearly jumped off the table when he gave them a tug. So he’s like you have endometriosis and the ovary should probably go. He mentioned hysterectomy but I have decided that I am not ready for that. They will remove a fibroid that’s taken up in my uterus cavity rent free.

To be honest I was on combined oral birth control from age 13 to 32. When I stopped, things were okay but then in the last few years, it has been so bad that I can’t walk during my menses. I thought it was my severe degenerative disc disease (also odd at 37) and lupus. Nope…. come to find out that I am a Gyn village idiot and my deep pain is probably endo.

I am scheduled for December 20th for left ovary removal, endometriosis excision and hysteroscopy for removal of submucosal fibroid.

All I can say is don’t downplay your pain and symptoms. I did. I’m a physician and a friggin idiot. Sending hugs. ❤️xx

EllaRoseX profile image
EllaRoseX

Wow thank you so much, I’m hoping it goes well been waiting so long for this appointment good luck with it all xx

Ziaw profile image
Ziaw

😘 stay strong and don’t let them fob you off, I spent 2 years trying to get to the correct place

EmaW profile image
EmaW

Really hope the appointment goes well for you :)

Just make sure you are heard and you come away with some kind of plan. Don't let them send you away empty handed even if they don't suspect endo. I did the first time around and it turned out I had stage 3/4 endo.

I've just had my first phone consultation with an endo specialist a few weeks ago and now just waiting for an MRI to then discuss the next step.

EllaRoseX profile image
EllaRoseX in reply to EmaW

That’s what I’m hoping for is a plan and not to be turned away I’ve waited so long for this appointment I want some sort of answer like what happens next x

In my experience St M's are very good. Even though my daughter's gynaecologist doesn't think she has endo, she has kept her on her books and sees her every six months just to make sure her symptoms are still under control (which, thankfully, they are). If our experience is anything to go by, you shouldn't worry about being fobbed off. Best of luck.

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