Diagnosis!...ish.

[Jaz1233]

Hi ladies hope you're all well.

Had my lap today. I'm uncomfortable but honestly the NHS staff I had today deserve a round of applause

Anyway, they found a spot of endometriosis. And by spot I mean literally 1-2 millimetres in diameter! Other than that everything is normal.

I have had heavy periods and moderate to severe pain in my right side for 2 years. The registrar said there was no way this "spot" caused all this pain.

Anyone else had similar experience?

Thanks in advance!

[Catness]

I think it would be interesting to know in your follow up how extensively they searched for endo, where this spot was found and if they checked places such as your pouch of Douglas or bowel. Also If you were assessed for a likelihood of adenomyosis also. It *could* be the case - and I’m not saying it is at all as I don’t know your surgeon etc - that your surgeon wasn’t as experienced as other specialist consultant surgeons and therefore didn’t have the expertise to fully investigate.

My advice would be to write out some clear questions for your post op in a few weeks time to determine what exactly they did and how they did it. Also ask if they excised (cut out) or used abalation (burning) to remove that area of endometriosis. If they only burned it it will grow again.

Could I also suggest for your recovery that you get some peppermint tea in for the shoulder pain and stick to non-stodgy foods until you have your first bowel movement as this can make you quite uncomfortable. It’s also worth asking for some laxido or lactulose which are stool softeners as if they have loaded you up with pain killers these help your body get things moving again.

Wishing you all the best for your recovery xxxx

[ChloB]

Hiya just as a comfort my endo was so small I saw a picture and it literally looked like a speck of sand on both my ovaries and on my bowel. I was so upset that something so small ruined my life. I basically was in so much pain that I couldn’t do anything I was basically bed bound for 6 months. Don’t loose hope. So many peoples endo is so different. My pain was horrific and my endo was minor but my sister in law had a 5cm cyst and thick endo all over her ovaries and no pain at all. They discovered it in a pregnancy ultrasound. To this day she has no pain but still loads of endo. Everyone is different so don’t worry

[BethanyAnn]

Hey, I had my second laparoscopy yesterday for a suspected 5cm Endometrioma which turned out to be a 4cm Dermoid Cyst on my right ovary, one small fibroid on my womb and a couple of spots of Endo on my left ovary. My surgeon was amazing but he made out that it was all fairly minimal but I have also been in agony for months! The condition affects everybody differently so don’t worry about your level of pain compared to the amount of Endo.

I am still trying to learn to ignore the professionals when they tell me it’s minimal because I know that pain is not minimal. You do you! 😚

P.S. peppermint tea and ginger biscuits help get over the laparoscopy and move the painful gas 👍🏻 xx

[Jaz1233]

Thank you ladies. I thought I'd read the amount of endo you have does not necessarily represent how much pain you have.

Out of hospital yesterday and I'm feeling pretty good. But before I went in I bled for 6 weeks straight and you know what that's like. In comparison this isn't too bad though getting up after laying down is not easy.

Worst part is not being able to cuddle my little girl! She's almost 2 and keeps putting her arms up for "mama snuggles". It's breaking my heart but one day at a time.

Hope you are all well

Jaz

Xx

[hm89]

Hi Jaz, my doctor told me after my surgery that the amount of endo has nothing to do with the levels of pain. I had a small to moderate amount and would black out for days at a time when not on the pill and cry with pain when I tried to pee even when I was on it. There was a very small amount on my bladder.

It is also possible they didn't look everywhere, sadly it's a very complicated disease!