At last, a diagnosis that makes sense. Don't know whether to laugh or cry...

[Beccaroo]

Hello everyone. I've never joined one of these before, but have just been diagnosed with endometriosis after 9 years of chronic pelvic, back and leg pain. I have had so many treatments I have despaired. I was told I had fibromyalgia years ago and put on amitryptiline, but the symptoms didn't really fit with that although I am so so tired all the time from the constant pain. I had surgery for ovarian cysts 2 years ago and was told I had endometriosis then, but that it was "nothing to worry about". No treatment or advice was offered - I was just told lots of women have it which makes me cross now! I have been listed for a laparoscopy to see the extent of it. I have a lot if bowel and bladder symptoms too and GP told me that I had IBS, which also didn't fit. I have read so much about endometriosis in the last few days, and feel like I could cry with relief just from knowing what's wrong with me - it fits exactly. I wanted to post this because it would be amazing to know there's people who understand what it's like to live with this level of pain every day and put a brave face on and get to work etc. I've felt for years like people think I'm making it up or exaggerating, even though my family are very supportive it has been so hard. I try to get on with normal stuff, but can't stand for long periods of time, parties and dancing is agony, the supermarket shop is agony... I'd love to find a support group - I love in Epsom.

Also, am under Andrew Pooley at Kingston Hospital - any comments on him would be welcome too.

Thanks everyone! Xx

[Tracey29]

Hi there I have found this forum a real help reading others stories and how they cope with this terrible disease. I have a long history suffering with this familiar symptoms you describe but luckily am sorted now. I am covered on partners medical insurance so been very lucky with my consultant. I too live in Epsom and know that there is a support group in Guildford at the Royal Surrey-may be worth having a look there. Xx

[Sarahkaye]

Hi, there are some lovely ladies on here offering real advice and experience who never criticise like some forums!

There always seems to be someone who has had the same experience as you, which is helpful when you feel like your the only one going through this.

best of luck with your laparoscopy,

Sarah 😊

[Beccaroo]

Thanks both of you! Will look into the Guilford group you mentioned Tracey. I'm a bit in shock that I've been this ill for so long and nobody had diagnosed this sooner - but from what I've read it's not uncommon to have to wait a long time. At least I know I'm not bonkers now and an really hoping something can be done to reduce pain levels. Helpful to be able to read everyone else's posts.

[DrWatson in reply to Beccaroo]

Ugh it makes me so angry that so many of us have such bad experiences in getting diagnosed. I too have had to feeling I was going mad, knowing something was wrong but not knowing what and doctors just ignoring everything. Glad you've finally found out and hope whatever treatment you're having works for you.

[Beccaroo in reply to DrWatson]

Thanks for your reply! Now I know what's wrong I am desperate for some treatment, but apparently I'll have to wait 18 weeks for diagnostic laparoscopy. Feels like a really long time when this has been going on for years and I'm in pain, but at least the process has started now whereas before I had lost all hope. Good to know there's people who understand - thank you for taking the time to reply. Xx

[DrWatson in reply to Beccaroo]

No problem. We have to support one another.