Happy Awareness Week

[Lynne_support]

The theme for this year's Awareness Week campaign is 'What I wish I had been told'.

If you would like to share with us what you wish you had been told about treatment options or your experiences, please comment below

[luthien]

What I wish I had been told:

that endometrioisis existed

that painful heavy periods are not normal

that the pill isn't a "fix all" it comes with it's own side effects

that sometimes we need to be more assertive; it's our body!

What treatments worked well:

physically - having the diagnostic laparoscopy plus investigation, biopsies, hysteroscopy, and removal of any endometriosis they find - all in one go. Recover is so much simpler and quicker and you know where you are with it all.

emotionally - the support of the forum, the support of friends, keeping work informed of all that is going on (through my unite representative), and most of all the support of my husband whom has been with me for the low points and gone to every appointment

Spiriturally - taking each day as it comes, grabbing opportunities when I'm well enough, believing in myself, staying open about how I feel with those close to me so they can be there during the times when I need them, focussing on my health, and my wellbeing.

[Shalom74]

Throughout my 20's I had a number of water infections and every urine sample had traces of blood in it. The nurses and doctors would just ask if I was near my period, but even when I was no where near my period, there were always traces of blood. Years later, in my mid 30s when my condition was diagnosed, the penny dropped and I am saddened that no one thought to follow up the blood in urine, surely it was an indication.

I've also had surgery a lap and my left ovary was mangled with a chocolate cyst. I don't think I've had very much education on the problem since then, symptoms are worsening and I don't know what to do for the best,

[Goldencat]

I wish I had been told that endo pain isn't only limited to your periods. A lot of health professionals seem to hold this view and are very dismissive of other symptoms associated with endo. Many women experience constant pain or intermittent pain that is not solely confined to having our periods. It's led to me delaying seeking help sooner.

[Hidden]

I wish I had known sooner that GP's are not able to diagnose endometriosis (or, on the flip side, to rule it out) because I had asked about endometriosis and my GP had told me that I didn't have the symptoms. If you think you have it, the GP is merely your gateway to a specialist, not the end of the line.

I also wish that the consultant who diagnosed me had been more honest. Before the first surgery he said that it was an easy fix - one surgery plus a mirena = problem solved. Nothing could have been further from the truth. He also was not really open with me about a referral to a bsge centre and presented it to me as something I could do if I really felt it was necessary without making it clear to me that a. I was entitled to specialist treatment under NICE guidelines or that b. he wasn't equipped to treat my bowel endo

[Lynne_support Partner Endometriosis UK]

Thank you for sharing your experiences. Its always interesting to see how everyone's experience of endometriosis, from diagnosis, to treatment to living with the condition is different.

[YellowMad]

i wish i knew...

that endometriosis specialists exist