Undiagnosed : Hello, I have been to the... - Endometriosis UK

Endometriosis UK
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Undiagnosed

Justagirl96
Justagirl96

Hello, I have been to the doctors on numerous occasions and they keep putting my pains down to IBS, from what I’ve seen this is quite a common thing.

Is there anyway I can get them to listen to me, Christmas Eve onwards I was in agonising pain to the point of me crying (I can handle pain pretty well but this was a whole different level).

I am getting bad cramping pains, is this normal for Endo suffers? As I have not been diagnosed with anything my worries just keep on getting worse, as I previously had PID that was left undiagnosed until I saw a consultant I don’t want this to go on for that long, I just want answers and the doctors to listen to me.

Any advice on how to get my point across would be much appreciated.

TIA

7 Replies
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Hi, yes thats very common. Thats what happened to me aswel with the ibs. I did my own research and went back to the drs and told them i thought i had endo and wanted a laparoscopy done. They never even suggested it in all these years and dont think i wouldve ever got it done if id not demanded one. Just keep onat them, and you tell them what you need rather than rely on them as most of them are crap when it comes to endometriosis.

Is endometriosis a part of PID?

No but often you can have both, i do.

They told you they found PID and Endometriosis when doing the laparoscopy?

I was told endometriosis on my discharge notes and that my tubes were sluggish. I then got referred to fertillity and they did my follow up. They did some blood tests and found chlamidya antibodies in my blood. It wasnt an active infection but had lay dormant for about 20 years and this is what has damaged my tubes over time, hence the pid diagnosis.

I’m glad you finally found what was bothering you after all these years. Crazy for 20 years they missed that... I’m ready to meet a doctor that will listen and try to figure out what’s causing all this pain.

Thankyou, they only did what they shouldve years ago because i couldnt get pregnant with my second, and probably wont naturally now. My drs were rubbish, id been back and forth for years and years and all they did were standard tests snd told me i was fine. When i was admitted to the hospital one of the last times for the pain a nurse said she thought it may be endo. I was discharged as usual because they couldnt find a problem and made out it was ovulation pain, which by the way isnt normal!. I did my own research after that and went to my dr and demanded a laparoscopy. She couldnt refuse as we were trying so they couldnt stick me on birth control or pain killers and finally i got some answers. I will say though as the pain is caused by inflammation and when its irritated its ten times worse, so eating a mostly antinflamatory diet helps enormously with the pain and also some anti inflamatory suppliements and magnesium in high doses.

I really hope you get some answers, just keep pushing for treatment and dont give up if they try and fob you off x

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