Finally got answers: Hello! My name is... - Endometriosis UK

Endometriosis UK

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Finally got answers

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Hello! My name is Amber, I’m 27 and was just diagnosed with adenomyosis/endometriosis. It was nice getting answers for all the pain, discomfort, depression etc, but it also brought on a whole new set of worries. Now I’m struggling with the whole getting a hysterectomy idea. The dr was able to see everything on a transvaginal ultrasound. He said I have adenomyosis, possibly polyps but it was hard to tell. He also said I could have endometriosis as well. My gyno told me the only cure is a hysterectomy. Thankfully I have 2 beautiful kids, but having a hysterectomy at 27 is really messing with me mentally. Most people are just like “oh just means you won’t have a period” but it’s so much more than that.

But I’m staying positive, I know God is in control and that it could be so much worse. I was just diagnosed yesterday so it’s all still pretty fresh, but I’m taking it one step at a time.

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Kangalou profile image
Kangalou

Hi Amber - sorry to hear this. I’m no expert - but could he not do a laparoscopy to diagnose you and potential treat the endo and possibly treat it? That could make a big difference to your pain.

I don’t have adenomyosis (I don’t think), but someone else might have some answers on that? A quick google indicates that there could be some treatments that would give relief.... maybe you’ve tried them though.

I agree it does sound drastic to jump from ultrasound to hysterectomy. It might be worth another chat?

in reply toKangalou

He said with adenomyosis there is no cure. He said we could try birth control pills but that’s a bandaid. He told me the only way to get rid of it would be hysterectomy.

luthien profile image
luthien

The ultrasound won't always show everything, a diagnosis of all of those can be done better by lap - Is that something you would consider, say a diagnostic lap plus biopsies? If they can remove polyps / cysts and endo, would you want that in the same op? It does mean they've done as much as they can in one op.

A specialist shouldn't push for a hysterectomy unless they've exhausted all other options or that's what you specifically want. It comes with it's own set of problems and isn't proven to cure endo or related issues because you're still producing female hormones or will be on hrt so the hormone related symptoms etc will still be there. You can look it up or ask on here!

You could go back and say you want them to see what's wrong first, investigate and take samples? Then when you've recovered and well enough go through the op results and see where you are, and where to go from there.

If that specialist doesn't want to investigate then it may be worth seeing another specialist, you are entitled to a second diagnosis / treatment plan.

in reply toluthien

Yeah, he was very quick to jump to hysterectomy. My husband and I actually are talking about getting a second opinion because he seemed very dismissive on a lot of things. I suggested a lap but he said the ultrasound showed enough? So maybe it is worth seeing a second dr.

luthien profile image
luthien in reply to

Go with your gut instinct, if it doesn't feel right and you're not sure then don't go with it. It's your body and your choice.

Ultrasound can show some stuff like large cysts, fibroids and polyps, it can show some severe scarring from endo where it's stuck stuff together but wont show live patches. The only diagnosis for anything like that is a lap.

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