Endometriosis UK
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Endo and emotions

i have been suffering from endometriosis since age of 20 but never was fully diagnosed till i was 23 as doctors kept fobbing me off saying its just me i have painful periods etc. it wasn't until i changed to a female doctor who suggested i see a Gynae. i had my 1st Lap at 23 and due to the fact it took so long to diagnose i have severe endo with pouch of douglas and they couldn't laser any of it off. I was put on the pill for 6 months but bled everyday throughout to which i went back to my Gynae and he suggested Mirena coil. From end of 2013 to Aug 2016 i was fine till i started bleeding for weeks and pains. I decided to go back to GP and put me forward to Hysteroscopy (May 2017!) which i found the doctor was useless as she said 'aah it all looks good' even though she said her camera for the procedure wasn't so clear!

Now in Jan this year i bled again for almost a month with severe pains, i went private and had my appointment yesterday they have done a proper check with internal ultrasound and was told my ovaries are attached to my uterus this was not told when i had my follow up previously. i have been booked for my 2nd Laparoscopy in 2 weeks time to see if he can release my ovaries and maybe laser some endo off.

when i was 1st diagnosed i didn't understand much and emotions were high i was classed as depressed and put on anti-depressants. I missed the fact of having periods and still till today i don't feel like a woman not having regular periods.

My only thought is will i be able to have children as becoming a mum and having a baby of my own is all i dream of.

3 Replies
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If becoming a Mum is your big dream you have to fight to see a decent surgeon to get treated properly as you’ve already been let down & fobbed off so much by the medical profession as have lots of us. You kept mentioning lasering in your post - you need to ensure your endometriosis found is excised (ie cut out where possible) and not simply lasered as that is only treating the tip of the iceberg and Endo will just come back & far quicker when only treated superficially by laser.

I know it’s hard feeling like you’re not ‘normal’ by not having regular periods & that’s completely understandable but periods = pain with Endo and until you get yourself sorted there are bigger things to set your attentions on, so try and not worry on that side of things.

I waited over 15 years and put up with a catalogue of GPs failing me, only through my own research and finding one of the best surgeons in the world did I start to fight back, but all this didn’t happen til my 40’s sadly and I’ve not become a Mum because of it. It was my dream too.

The most important thing you need to focus on is getting the correct treatment ie excision, and being mindful of the fact it would be best not to delay trying for a baby too far away, you’re young at least so use your time well.

All the very best x

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Thank you so much for your reply. It has taken me a while but i have found a decent consultant who specialises in Endo. So fingers crossed i get somewhere.

I'm so sorry to hear about your experience especially not being able to become a mum.

Im trying not to delay to try for babies but unfortunately due to my culture n religion i cannot try until married and unlucky me so far havent found the man.

But all in good time i guess everything happens for a reason and in Gods hands.

Thank you again for your message x

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You’re welcome. Yes it’s very difficult especially if religion dictates you have to wait and it’s so important to find the right man! All in good time hopefully, wishing you all the very best x

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