Please tell me how your endometriosis was diagnosed?

[Whatapickle78]

Hi

I’ve had awful lower abdominal pain for nearly a year now. Hysteroscopy in Feb took out two benign polyps and put in a Mirena (I’m peri and on HRT).

I was told this would help keep the womb lining from thickening.

I had hoped that would be it and it would solve the pain/cramping.

I’ve had no periods since it going in, no discharge, and just had a normal ultrasound today to check the Mirena is ok. Also blood tests showed no infection.

I still have these pains though, right across my womb area. And they are much worse this week.

Im starting to wonder if it’s endo.

How did any endo sufferers on here yet diagnosed please? And how long did it take?

many thanks

it was suspected beforehand during fertility treatment and formally diagnosed via laparoscopy which is a keyhole surgery op. It’s the usual way it is diagnosed. I had problems with periods for many years beforehand in terms of pain and heavy bleeding.

I was getting lower tummy pains and ovary pain, my Dr referred me for an ultrasound and when they checked my left ovary it wasn't moving freely as it should so they thought it could be endo/adhesions. I was referred to gynae and he also suspected endo, so arranged a laparoscopy. They found stage 2 endo on my womb and removed it, weirdly my ovary was fine.

After begging for ages finally got an ultrasound which was highly suspicious and I got referred to gynae oncology. Had an MRI which thankfully gave all clear to no ovarian cancer but finally gave an answer to the years of symptoms.
Currently awaiting surgery which is a two year wait. In pain all the time

It’s such a battle honestly. It took me 20 years of going to the Dr with painful, heavy periods, low ferritin/B12.

Went to the Dr because I was exhausted yet again, ended up crying and said my mum had ovarian cancer, got a blood test, CA125 was slightly elevated, referred for ultrasound, two endometrioma were seen, referred for MRI, referred to endo specialist.

Ended up going private for laparoscopy because I’d have had to wait 2 years on the NHS. Got coil at the same time which was a life changer.

Since my operation I’ve realised how much other pain was actually endo!

I suffered severe pain and vomiting when I had my period for years. I thought it was normal. I then had to have an ovary removed and after the operation the gynaecologist told me I had the worst case of endometriosis he had ever seen. I had an endometrial ablation and it changed my life.

@GG1986 this sounds similar to what I’m feeling. I think I need to be really specific about asking for a laporoscopy from my GP. Nobody has mentioned this to me so far (Gynae or GP). I’m glad yours was picked up (relatively) quickly.

@sellinghousenewstart thank you. I’m so sorry the wait is so long. But I’m glad it’s been diagnosed. Is the removal of it by laporoscopy too?
I wonder if I should ask for an MRI if that’s less of a wait. Does anyone know how good they are for picking up endo?

@OneWiseDuck thank you for sharing this it sounds like quite an epic journey!
I’m glad the coil is helping and you finally got the op!

@ceneta thanks for sharing this and glad you were eventually treated, it sounds like a really awful journey to get there.

I’ve just had another night of pain and I’m feeling so exhausted. I think I need to be a bit more specific with the GP - asking to be referred back to Gynae asap.

it’s so confusing isn’t it trying to work out where the pain is coming from! I’m still clinging on to the hope that it might ‘just’ be Mirena settling in pain… but think it’s highly unlikely really.

Thanks everyone