Lap clear then later diagnosed? - Endometriosis UK

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Lap clear then later diagnosed?

Sunshine1310 profile image
4 Replies

hello

Has anyone had a diagnostic laparoscopy for it to come back clear from endometriosis, who has gone on to later be diagnosed with it?

I fee I’ve been palmed off my NHS do. And she didn’t even listen to me and that my pain is behind my C-section scar that is indented.

I’ve now made an appointment to go private but I’m scared they won’t find anything.

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Sunshine1310
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4 Replies
bertie1606 profile image
bertie1606

It happens more often than it should when laps are done bya general gynaecologist, as they don't really know what to look for. I've seen several posts over the last few years about this! Hopefully your private appointment is with an endo specialist who knows what to look for

Purple_peonies profile image
Purple_peonies

I’m so sorry to hear this, I have had an ultrasound scan on my c section scar before due to a fluid pouch I found in my pubic area. My gp referred me. Could you ask your gp to refer you for a scan on your c section scar.

Unsure if it picks up Endo or not that’s something to look into. Hopefully you will get more help when you go private x

BlueVelvet94 profile image
BlueVelvet94

Good morning,

Unfortunately, I have not had this experience myself (I've had a lap which diagnosed and treated endo however this was performed by a specialist surgeon at a private hospital as a NHS patient).

Another way to check for endo (picking up on deep endo and I believe it does not pick up on superficial/mild endo) is an internal ultrasound (which can be either transvaginal or transrectal). I hope this helps.

Ps-endo profile image
Ps-endo

Yes! This happened to me, I had my first lap in 2021 with general gynaecology, they found “nothing” although they took a biopsy from a suspicious area and ablated that area. It was super disheartening at the time.

However I kept pushing for answers, was sent for an MRI in 2023 which showed suspected deep infiltrating endo, referred to a endo specialist and had my 2nd lap in November 2023, where it was confirmed, excised and diagnosed alongside Adenomyosis. It is definitely worth seeing someone specialised in endometriosis, the difference in treatment and care I received (both on the NHS) was insane.

My advice would be, you know your body best so keep fighting for the answers to help it. I was so upset after my first lap thinking I was back to square one, however when my symptoms persisted I kept pushing and pushing with my gp, gynaecologists etc and fought for answers. If they refused a treatment I asked them to write on my medical record that they’d refused, they didn’t want to do that to cover their own backs so I got the ultrasounds, MRI, etc and finally got my answers. Hope you feel better soon and get your answers too x

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