Endo diagnosis or not?: Hi ladies I am... - Endometriosis UK

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Endo diagnosis or not?

jorgiesmumxx
jorgiesmumxx

Hi ladies

I am looking for help. In total I have had 3 laparoscopy. The first showed endometriosis and the second 2 were clear. I am still in the same position every month with all the symptoms but unclear whether I can say I have endometriosis or not if it's only 1 out of 3? Although my last two laparoscopy showed no endo I was told my left tube is blocked now... that has left me even more confused. I suffer all the symptoms and I also get kidney pain, does anyone else get problems with their kidneys? I cant take hormone treatment as I have been trying to get pregnant for 3 years now and can't afford IVF so I just have to keep hoping 😓.

Thank you for listening xx

6 Replies
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Oh that is confusing! I'm not surprised you don't know where you stand. Had your consultant offered you any explanation?

I'm just wondering what could account for these differences. I'm wondering have you changed and the endo has reduced OR is it differences in each of the surgeries that are giving different results? I find it hard to believe you didn't have endo in the first surgery, a false positive through a lap seems unlikely. Were you told details of where they found the endo after the first surgery? False negatives are more likely, lots of folk on here talk of having had a clear lap only to layer fund out they have endo (me included).

Have you had any treatment that would cause endo to be less active? Like hormone treatment? Or have you made any drastic lifestyle changes? Has endo been removed in the laps?

Have each of the surgeons been bsge accredited? Have you been seen by an endo specialist centre?

Have you had an mri?

Sorry for so many questions!

If the endo had been treated, what could be my pain is lesions from the surgery or that they couldn't remove. There are some things that can help that, physio is apparently useful.

I'm in a slightly similar situation. I had a clear lap 2 years ago. Then through an mri with orthopaedics I was told I had severe endo throughout my pelvis. Then I had another mri with gynae, again saying I had severe endo and a cyst growing of my ovary. Then I had a ct scan that said I only have endo growing within a fibroid, not a cyst and no endo elsewhere. So I'm left wondering what they've saw in the other 2 mris. How can I go from having it everywhere to only in a fibroid within 2 months? I've asked the consultant, who was the surgeon who did the clear lap 2 years ago but he has been so evasive. So, I phoned the endo specialist centre to request an appointment so this could all be explained to me. The secretary said it d unlikely & I haven't heard back so my next step is to contact PALS to ask for this. I've also requested access to my medical notes to actually see what has been written. The GP recently showed me a letter following my most recent ct scan and they're was loads in that I hadn't been told - like my case was being reviewed by the oncology team and that other unusual things had been found and I was an extremely unusual and complicated case... My consultant made out I just had a little lump in me that would be cured by a tiny hormone injection.

I'm not sure if any of this will help but I'm sure you have lots of options available, it just depends on what's been done and by who.

Xx

Hidden
Hidden

Not sure if this helps or not, but I have had all the symptoms of endo for years. I have finally got a lap, it's a week tomorrow so I might actually get some answers.

But alongside my heavy bleeding and pain etc. I have had kidney pain and kidney infections.. one put me in hospital.

If i do have endo then yes, I get constant bladder/kidney problems !

Hope you get your answers XXX

Yes I get lots of infections and my kidneys are so so painful

That makes me feel slightly better about the kidney pain then as the consultants have told me it can't be related to endo but I am convinced. They removed quite a bit of endo on my first lap and the other two were adhesions and my ovaries were stuck to the back of my womb. It's so difficult as I don't know where I stand. I didn't know there was an endometriosis specialist centre so I will definitely look in to that. My biggest problem just now (other than the extreme pain) it's trying to go to the loo 😓

NW248
NW248
in reply to jorgiesmumxx

An MRI can also show endo, so if your consultant is doing surgery as a first step rather than an MRI, is suggests that they don't know much about endo.

Thank you very much. I will suggest an mri x

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