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Endometriosis. Feeling frustrated at lack of diagnosis

1 reply

MissKH84 · 07/07/2023 19:48

Hello.
I'm just looking some support really as I'm just feeling fucked off and frustrated at the care I'm getting from my consultant.
At my last appointment I mentioned to the consultant the constant pain I'm having. It's daily. It feels like a thuds of pain around my right ovary tube area. It goes on all day long but comes and goes. Could that be endometriosis? I cant bear living like this. This month has been fine,not many cramps but for 2 months straight I felt like I had period pain like cramps all month long. I get that off and on for a long time.
Scan seemed fine they didn't mention anything but at my first scan months ago they said I had a fluid filled tube so sent me for hsg. That was clear . Maybe it flushed it out ( i did read fluid tubes can happen with endo) I have pcos also and was given clomid. Now my concern is I've been taking clomid for months and I've read online if you have endometriosis you should NOT take clomid. You should not take any estrogen medication as it will make endometriosis worse. My Consutant said to me I wonder if there's a bit of endometriosis going on and he questioned weather to proceed with surgery but decided he won't send me for surgery. It's stressing me massively. It's on my mind 24/7 thinking maybe this medication has increased the growing rate of endometriosis and thinking now my tube is blocked. I don't understand if he suspects it why he's still telling me to continue with clomid as I could be making everything worse.
I don't really know what the point of this post is, I'm just feeling really depressed I feel like if I do have endometriosis I would like a diagnosis so that I could at least have a medical reason for the pain I'm in every day. I feel like the doctors just don't give a fuck really.
I don't have heavy periods but I do have pcos which causes light scanty periods so that could be why mine aren't heavy. Does it sound like I could have endo ?
Would love to hear from anyone who has it what experience they have living with it.
We've been pushed for ivf and I just wonder is the endo something that should be taken care of before ivf ?

OP posts:
Kellyaust · 07/07/2023 21:20

First of all I get your frustration, I lived with pain for years and scan after scan and because my scans were clear I wasn't getting anywhere, I had to keep pushing and eventually got sent for a laparoscopy.... They found endo... Surprise surprise. My pain was always left sided, to the point sometimes (usually around ovulation) I couldn't even stand or walk! They decided not to remove any endo and left it as it was staying that it would probably just come back anyway.... I've seen consultant after consultant and all I've been told is... If the pain is that bad then go on contraception that's onky thing that will stop estrogen production which makes the pain worse. Crazy absolutely crazy. Because I was diagnosed after I already had 2 children nobody has ever been interested in helping me. I was told my tubes were also blocked.... I now have a 2 year old as well and fell preg in February which sadly ended in an MMC in may, but clearly I can get pregnant even though I was told I can't coz of my endo and tubes.... And all I've ever been is fobbed off I've got kids after all so nobody cares. If I was you I'd push for a laparoscopy at least then you know!

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