I’m new to this I just been diagnosed with endometriosis not been for my lap as I’m on a waiting list given pain relief that it 😢

[Chloe-87]

Endometriosis new to this no support at all

[Endofaye]

Hey, sorry to hear this.I have been diagnosed with severe Endo .. it's basically stuck everything together and I have a frozen pelvis. Can I ask how they diagnosed it if you haven't had your lap yet? As this is the only real way they can say you have it or not.

What symptoms do you have? There are lots of people on here that can support you x

[gettingusedtoendo in reply to Endofaye]

Hi nowadays this is not true. Severe endo can be diagnosed through MRI

[Endofaye in reply to gettingusedtoendo]

Yep very true, severe Endo can. But not less severe endo.

[EndoSuckss]

Hi! Sorry that you're suffering 😪

How was your endo diagnosed, and by who? Usually it's diagnosed by a gyno following a lap..

If you've been diagnosed by a gyno, then contact them and ask what the next steps are. If it was your gp, contact them and ask that they refer you to a gyno (preferably an endo specialist)

Good luck

[Moon_maiden]

HiThere is usually lots of support/info here. What has your GP and/or Gynaecologist said to you about things?

On the Endo UK site there is lots of info, specifically things you can ask your dr and info to share with family and friends. It will be hard for them to understand, not because they don't want to, just because unless you experience endo very had to imagine. The site also has a helpline number if you need to talk to someone, really useful in the initial stages.

[white61]

hey just wondering how they have diagnosed you if u haven't had surgery as I am on the list for surgery and will be waiting a very long time and will need surgery to find out if I defo have it or not.

[gettingusedtoendo in reply to white61]

Severe endo can be diagnosed through MRI

[EndoSuckss in reply to gettingusedtoendo]

Severe endo can sometimes be diagnosed via mri - but it if was that severe, surely treatment would have been discussed and a lap organised?!

[gettingusedtoendo in reply to EndoSuckss]

Hi, she is on a waiting list though so I imaginr this is what has happened. Or do some cases get fast-tracked through? Tbh I find it all clear as mud!

[Sham_R]

Hi, I sorry you are suffering. I am in the same boat as you, I have been diagnosed with Endometriosis and on the waiting list for lap. You’ll get a lot of support and info here.

[gettingusedtoendo]

Hi there, in the same boat here, been on a waiting list for surgery since March but always suggestive of adenomyosis. I was surprised by lack of info/support too. One thing that has massively helped me in going on the mini pill. Did they discuss hormone treatment with you while you wait for surgery? I’m meant to be getting a mirena coil when they do my lap but the pill has worked wonders for me in terms of pain. Best of luck

[EndoSuckss in reply to gettingusedtoendo]

I have the mirena coil and it really helped - fingers crossed you'll have the same success if you've had some relief using the pill! Good luck!

[gettingusedtoendo in reply to EndoSuckss]

Thank you! I’m a bit reluctant to get it now as pill works and you hear bad things about the coil (like everything tho), but it is meant to really help with adenomyosis

[Chloe-87]

Hi yes I had severe pain and had emergency scan which showed my ovary has been effected and and uterus I’m waiting for lap now to confirm and see how severely it had spread I see a Gyno at hospital and he has also prescribed pain relief

[EndoSuckss in reply to Chloe-87]

I'm glad you've got some pain relief! Fingers crossed your lap will be soon x

[Jo2201]

Hi I am sorry you are in this boat, this runs in my family my mum had a full hysterectomy at 36 after 16yrs of pain and tests myself and now my daughter who is 18. I was given zolodex implants as the waiting lists are so long heard from specialist today after being on them for a year and has said defo endometriosis so am on zolodex for the next 2 yrs while on waiting list for hysterectomy. Zolodex have saved my marriage and I can round around with my boys again without constant pain