Nothing found in laparoscopy : Hi everyone... - Endometriosis UK

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Nothing found in laparoscopy

Lavenderpetal profile image
6 Replies

Hi everyone,

I had my diagnostic lap on Friday, they found nothing! I'm absolutely devastated.

My ultrasound showed a deep infiltrating nodule but my gynea was telling me no signs of endo so I was prepared. I know I have endo though I have every symptom and I know my body! I think it's in my bowel but I'm certain they didn't search long enough plus I didn't have a specalist just general surgeons and a fertility expert operating.

Has this happened to anyone else and then they've been diagnosed after a second lap? I'm so upset and heartbroken. Living with this pain is killing me. Any hope?

Thank you so much❤️

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Lavenderpetal profile image
Lavenderpetal
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6 Replies

Hi lovely,

I wish I could give you some advice but just here to let you know you’re not alone. The same thing just happened to me in my laparoscopy in May. Was told by every doctor I saw for years that they were so sure it’s endometriosis and then nothing was found in my laparoscopy. In the same way as you, this was not a specialist, just a general gynaecologist. I have now been referred to a pain management clinic where I am told there will be a more specialist gynaecologist and also a psychologist and to complete some physio. It is so frustrating not to have an answer still after all of this time and all of this pain. I hope you find an answer and something to ease your pain. Best of luck xx

Lavenderpetal profile image
Lavenderpetal in reply to Josephine-Lavender13

Hi Josephine,

Thank you so much for your reply! I'm sorry you've gone through this aswell. I've been referred to a pain clinic aswell but the waiting times are crazy! I'm just so disheartened and feel very lost. Thank you for making me feel less alone 🩷 I hope you get answers soon❤️

Josephine-Lavender13 profile image
Josephine-Lavender13 in reply to Lavenderpetal

Thank you. The waiting times are crazy aren’t they! I feel exactly the same way, it’s hard to know the right next steps but I’m sure we’ll find them eventually. Sending love and luck your way ❤️

Daisys79 profile image
Daisys79

Hi, sorry to hear of your experience.I too felt so upset after a normal laparoscopy.

After years of issues I came across this and booked in for a scan next week.

veinreliever.com/pelvic-ven....

Lily1986 profile image
Lily1986

I’m so sorry you’ve had this experience, it seems to be happening quite frequently these days. Keen to tell everyone everything is ‘normal’ to save the NHS money.

Go via the hospital legal team (it’s not just there for claims) and request copies of the photos and/ or videos from your surgery as well as any report.

Once you have these get referred to an endometriosis specialist, if you can afford £200 for a private consultation with one its well worth it as they will do any further treatment or investigations in their NHS clinic faster. Use the BSGE site to find a registered specialist

Best wishes to you ❤️

Loriiim profile image
Loriiim

Hi, sorry to hear you've had to go through this, it's so stressful! The same happened to me, but a lot of endo was detected on my ultrasound, & I did eventually get it confirmed via biopsy, but it's all still there. Basically it turns out general gynae are essentially not qualified or trained to be looking for/diagnosing or treating endometriosis. I would suggest pushing for a second opinion. I think if you've had a failed diagnostic op you can push for a referral to a BSGE centre, there's a list of them here: bsge.org.uk/centre/category... You can ask your GP to refer you. I would also suggest joining a group on Facebook called Endometriosis Guidance and Information Resource UK. They're great for advice & have lots of files on treatment pathways which makes it easier to get your head around it all. I've found the group essential to fighting for my care!

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