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Any endometriosis sufferers out there?

(16 Posts)
EndoEndo Tue 11-Nov-14 21:43:37

I have it.

Do you have it? Or someone you know? When you talk to people about it do they know what it is?

Endometriosis is nearly as common as asthma or diabetes but because of its taboo nature not that many people have even heard the name.

But something fantastic had happened that could help to raise awareness of this chronic condition; an endo charity volunteer has been shortlisted as trustee of the year! Please follow the Guardian link and vote for her. Just because it's a women's condition doesn't mean it shouldn't be known about. We need to help raise awareness of endometriosis.

www.theguardian.com/voluntary-sector-network/poll/2014/nov/08/trustee-of-the-year-award-2014

EndoEndo Tue 11-Nov-14 21:44:05

www.theguardian.com/voluntary-sector-network/poll/2014/nov/08/trustee-of-the-year-award-2014

tunaandcheesesandwich Tue 11-Nov-14 22:05:49

I'm a fellow endometriosis sufferer. Just listened to her TED talk - really inspirational, and just voted for her!

DiscoDancer Tue 11-Nov-14 22:07:14

Another sufferer here too. Looking at link now.

IWantItAll Tue 11-Nov-14 22:11:06

Another one here although I have severe endometriosis,I don't very often suffer too badly. Never thought of it as a taboo subject though. Will look at the link thanks.

EndoEndo Tue 11-Nov-14 22:12:59

tuna good point, the TED talk's fantastic, I'll link that too.. hold on...

EndoEndo Tue 11-Nov-14 22:13:32

m.youtube.com/watch?v=g1D_ya4cJ8E

TapDancingPimp Tue 11-Nov-14 22:19:40

Diagnosed recently through fertility investigations.

Iwant do you mind me asking, how did you come to be diagnosed?
We're your symptoms more severe at one stage?

I'm currently attempting self-healing with the endo diet, anyone had any success with it?

TapDancingPimp Tue 11-Nov-14 22:20:17

Were*, bloody ipad.

EndoEndo Tue 11-Nov-14 22:27:34

IWantItAll, maybe taboo is too strong a word? I've always felt people stiffen up a bit when I tell them what it is. Gyne issues aren't openly talked about so it's understandable that it might make some people uncomfortable. How have you found it?

IWantItAll Tue 11-Nov-14 22:27:38

tap I was diagnosed after surgery to remove a 10 cms.and a 5cms chocolate cysts. I only occasionally had severe period pain,frequently had heavy periods and basically thought all was pretty normal! I had an internal scan initially as I had gone to my G.P about mid cycle bleeding.During the scan I found out I was actually pregnant,however I miscarried a few weeks later. After my op to remove the cysts I conceived and by the time I had my first dating scan(5 months after the op)a 5 cms cyst had appeared again!

EndoEndo Tue 11-Nov-14 22:30:04

I know lots of people who have had success with the diet tap, but about the same amount who claim it's a load of crap! I think it's one of those things where if it works for you then great. smile

How is it working it for you so far?

IWantItAll Tue 11-Nov-14 22:36:35

endo I've found people to be genuinely interested when I've mentioned it to them.It's not something I discuss a great deal but if something comes up in conversation I will mention it and normally find that the other person has endometriosis or knows someone who has it too. To me it's just matter of fact,an inconvenience occasionally but thankfully not life limiting to me. There were complications with the op where I was close to needing a blood transfusion which has stopped me looking in to having the procedure again.

EndoEndo Tue 11-Nov-14 22:44:17

That's great about their responses smile

Ops are a really rubbish part of endo aren't they? I'm on my third atm.

TapDancingPimp Tue 11-Nov-14 23:00:40

Well I only started it 2 weeks prior to my latest period...it was my first painless period in years but that's probably a massive coincidence!

If the same thing happens next cycle I'll stick to it smile

EndoEndo Wed 12-Nov-14 09:21:27

Poll closes in 14 hours!

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