Could it be endo?: I’m currently waiting... - Endometriosis UK

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Could it be endo?

princessk09 profile image
10 Replies

I’m currently waiting for a lap to see what’s going on and what’s causing my pain. I’m genuinely terrified of surgery as it will be my first one and I’m scared nothing will be found. People already think it’s all in my head. Anyways my doctor and 2 gynaes suspect endo but I always have a doubt in my mind. I don’t want to have surgery but know it needs to be done.

Does anyone else have these symptoms and could I have endo?

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princessk09
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10 Replies

I have all those symptoms (and some more!) except for pain after urinating. Have you had your urine tested for any infection?

I have had medics make me feel like it’s in my head before both laps; first one fertility specialist didn’t expect to find endo because he thought it was bowels not gynae; second lap no one medical believed endo could return in such a short space of time and low and behold it had! I’m still fighting medics now; my endo consultant has refused to send me to a colorectal specialist despite my severe symptoms and won’t see me till

Lap or bring my lap forwards despite the hideous symptoms. I get where you are coming from. I am seeing my GP tomorrow as I need to be referred to a colorectal specialist and I also going to write to PALS because of the way he’s treated me.

I am so sorry you have been made to feel so belittled by the medics and I know how that feels. Trust your feelings; you know these symptoms are not normal and you know your body better than any doctor; trust your instincts don’t let them get to you. I hope you get your lap soon and answers and you can smile at the medics like I did when I was proved right 😏❤️❤️❤️ xoxo

princessk09 profile image
princessk09 in reply to

I had my urine tested for an infection a while ago and it was clear. It doesn’t feel like an infection as it doesn’t burn or itch etc. It’s just I have a small sip of water and I’ll be running to the toilet for a wee. Xxx

Natalie221 profile image
Natalie221 in reply toprincessk09

I have pain when urinating but not with every period but I’m waiting for my 2nd lap but this time there putting a camera inside my bladder aswell to check. I have most of the symptoms you had but on my first lap they did find endo in pod but only a small amount. Sometimes the people with only a little bit of endo can be in more pain that people with severe endo. So my consultant said anyway. Hope you get sorted soon have you had your operation date yet ? Xx

princessk09 profile image
princessk09 in reply toNatalie221

No I’m still waiting for one but no one is telling me where I am on the list cx

Starry profile image
Starry

You have more symptoms than i did and i had severe endo but as you pr9bably have read symptom severeity doesnt always correlate with endo severity.

Are you also having a hysteroscopy to check for adeno?

Try and remember that even if it comes back clear then thats a good outcome too, its one possibility ruled out so thats one big step closer to diagnosis of another condition also able to generate symptoms, so even then its still definitely not in your head hun xxz

princessk09 profile image
princessk09 in reply toStarry

That hasn’t been mentioned so I don’t know if they will do one of them or not.

I’m due on at any time and I’m dreading it xx

Starry profile image
Starry

Lots of hugs xx

When is your op date?

princessk09 profile image
princessk09 in reply toStarry

I’m still waiting. Every time I ring the scheduling people they don’t tell me where I am on the list or anything xx

Allie8 profile image
Allie8

I have all of those symptoms and a few more, including the pain when peeing. Waiting for my first lap too and am also so worried that they'll find nothing and people will think I'm exaggerating, it's so frustrating. Even if they do find nothing in the lap there are so many other things it can be so don't feel like your pain/symptoms aren't valid xx

Cmmo519 profile image
Cmmo519

I had all of these symptoms and was just diagnosed with Endo on the 8th of May, it was my first lap too! I found it hard because everyone round me said it couldn’t be the case and to “be more positive” but you know your body and just need to put you trust into the specialists (I know that’s much easier said than done).

The lap was much better than I expected and afterwards I kicked myself for getting so worked up about it to begin with! Honestly, it’s not the nicest thing to go through but so worth it. Even if you don’t get your diagnosis keep pushing and don’t give up, you know you body better than anyone else.

Good luck when your op comes xx

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