Laparoscopy clear - what now?

[Endo_warrior01]

Hi everyone.

Thanks for the pre- surgery advice on my previous post.

I had my laparoscopy around 2 weeks ago on the 20th March. It was an uncomplicated procedure and I was found to have a normal pelvis with no evidence of endometriosis.

Obviously I am so relieved to be told this. However, they said they couldn’t find any other cause for my pain. So now I’m left feeling quite lost, confused and deflated after having in my head for the last 2 years that I have Endo. I feel like I’ve wasted everyone’s time and like nobody will ever take me seriously now. I know pain is subjective but even now I am questioning whether it’s all in my head !!

I have been discharged from Gynae snd been referred back to my GP of which I have a follow up appointment in a couple of weeks time. I’m just stuck and don’t know where to go from here. I’ve had the mirena coil put in whilst in theatre and been told the current plan is to see if that helps my symptoms.

Has anyone else been in a similar situation?

I want to trust their judgement but I’ve read lots about endo being missed if surgery is carried out by a general gynae rather than a specialist?

Can I request further investigations? If so, what? I just want to know what’s going on with my body.

Thanks for taking the time to read this. Any advice or sharing similar stories greatly appreciated.

💛

[endotheline]

You poor thing. I absolutely sympathise. The first thing I’ve asked when I’ve come around from the GA was ‘did you find something?’ In my case they did and I think I’d be feeling the same as you if they didn’t. I am always of the belief to trust your gut so there has to be something. Did they suggest anything further to you?

[Hidden]

I’m so sorry, you’re not the first person I’ve heard of lately to go through this.

Was it an Endo specialist who did the surgery? A lot of general gynaes are missing the disease.

Pain doesn’t come from no where there has to be a cause. Did they check for adenomyosis? Have they done an MRI?

I would request copies of photographs and surgical report, via a subject access request through the hospitals legal team (don’t worry it doesn’t have to be a legal issue to obtain copies of your records).

I’d then possibly get a second opinion at a different hospital and take those photographs with you.

I don’t know why, I suppose it’s to save nhs money but they seem to play down peoples symptoms etc far more now and just leave them to suffer.

Best wishes to you, message me anytime ❤️

[Hidden in reply to Hidden]

Also, it maybe worth if you can afford £200 getting an appointment with a private endometriosis specialist just for an initial consultation. After that they can often the fast track you for further investigations in their NHS clinics.

[MangoStickyRice]

Hi,

Minus the coil part its like looking in the mirror to my journey only a year ago. Mine said 'you are perfectly healthy' after my first lap (with general gynae) and I burst into tears - I NEEDED them to find the cause.

I am so sorry that you don't have the answers you were hoping for. Being referred back to your GP can feel like you are starting from the beginning again. I felt extremely down and lost when it happened to me. Trust your body and keep fighting for answers. It's not in your head. You will get there. As Lily1986 mentioned, if you are able to, a Private consultation with an Endo Specialist could help (both in validating your symptoms and pushing for further investigation).

[Justchecking93]

Hiya,

Im in a similar situation to you. I had my laproscopy a week before yours and they didn't find any endometriosis. They told me to go back on to the pill as there was nothing else they could do. They did however tell me I have adenomyosis but they are not saying that that's what's causing the pain. But from my own research that could be reason of my pain..but then I also don't know how much to trust google over a doctor..

I think you should still be able to get yourself referred if need be but I think you should also look into lifestyle and dietary changes which apparently also help the pain. Im trying to stay away from the pill and the coil for now.

Im glad you do not have endometriosis. Sorry you're still in pain. Keeping bugging the gp if you have too.

Xx

[Lauraamyk]

I’m in exactly the same position as you, it’s nice not to feel alone! After 15 years of suffering and finally one gp piped up with “I think you have endometriosis” I thought hurrah, I may find an answer to my problems. I was referred to a specialist who was so empathetic pre-op and said he was 99% sure I had endo. When I woke up from the op, I was told a couple of hours later I was perfectly fine and they found nothing, he showed me images of everything so I can’t say they didn’t show me the proof but after the op his attitude towards me was so dismissive and he made me feel as though I’d wasted everyone’s time. He said he had some ideas of where to go next so I thought great, at least he’s taking me seriously and willing to follow up. In my follow up appointment today (2 months post-lap) he did nothing but gaslight me and was incredibly patronising, he told me my symptoms were likely psychosomatic, I should try therapy because it’s likely that I’m bringing the pain onto myself , I cannot tell you how infuriating it was to be told that after I’d gone over all the things I’ve tried, paid for and tested the last 15 years to manage my symptoms and I’m still in agony and non the wiser. I know I’m not the first to feel this gaslighting fury and I won’t be the last! I was hoping for some guidance from the follow up or at least an investigative next step as THIS IS NOT NORMAL AND I KNOW MY BODY 😅🤦🏼‍♀️ I mentioned is it worthwhile trying an mri or scans to check and I had the reply “my dear, don’t you think if that was a wise suggestion I would tell you, it will show you nothing” 🙄 so I guess it’s back to square one again but we will get to the bottom of this, we know our bodies and we know when things are not right. I’m glad for the community on this site as it makes me feel less alone in this journey 💪 I hope you get your answers one day too xx