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
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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
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❤️
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 ❤️
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
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!
Hi, I had the same result when I had my Laparoscopy in March. I'm 38 and experienced incredibly heavy, debilitating, painful periods for as long as I can remember. As well as pelvic pain, abdominal pain, hip and back pain etc. I was absolutely gutted that they told me all was clear, not because I wanted endo but because I was so convinced it was the answer for all my pain, and I'd waited years to get to the point of Laparoscopy. Unsure of where to turn I booked a private ultrasound, which also showed no endo. It did show a fibroid and a couple of cysts which were "clinically insignificant". My Laparoscopy did show that I have severe pelvic adhesions across my reproductive organs, bladder, bowels and liver. One gynae said this was due to my c-section, another said likely caused by PID which I'm sure I've never had. One gynae said I should have further surgery to remove the severe adhesions, another said it might not be necessary. Long story short, I'm probably more confused than I was before my Lap, and debating whether to pay for a private MRI scan to see if that shows anything else, or to just forget it and carry on with my life. 😅
Im so sorry you’re going through this. I know it can be super disheartening.
But yes! This absolutely can happen. It happened to me. First lap in July 2021 with general gynae and they found “nothing” except a suspicious area which they ablated, they didn’t diagnose me. However an MRI May last year showed deep infiltrating endo, so I was then referred to a specialist and had my second lap November last year where I was diagnosed. So it can definitely happen if the gynae isn’t specialised in endometriosis.
My advice would be, you know your body best and to keep pushing for answers, after my first lap, I hounded my gp, gynae, everyone I could and requested specific scans etc. If they refused I politely asked to write on my medical record that they were refusing investigations/treatment and that I would like a copy, they generally don’t like to do this to cover their own backs. Eventually someone will listen. I hope this gives you some hope to keep fighting x
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