Is it weird to be disappointed with no Endo??

[Ceeves96]

Hi everyone,

Had my first lap yesterday & before the op the consultant said she didn’t think it was Endo but I have literally exhausted every other possible thing it could be so this was the absolute last possible condition.

Woke up after the op to be told ‘we found nothing, your insides look perfectly healthy’. Baring in mind it was in a private hospital (thankfully work covers my private health insurance) with an Endo specialist surgeon.

I should be relieved that it’s not endo, but most of me just wanted to burst into tears. This has been months (years before that) of me waiting and having different tests and everything showing up as negative. And now I’m in Agony post op, but still not a single answer.

My consultant literally told me ‘there’s no reason for your pain, it’s just unfortunate’. So I have all the symptoms of endo (and several other conditions) and now I feel like I’ve been making it all up in my head. My close friends and family have seen me screaming in pain which is why I know it’s not made up but I just really wanted an answer

Is it normal to be upset that my laps showed up healthy? I feel I should be grateful but I’m genuinely Just so upset that I’m back At square one, no answers and have been just told to attend a pain management clinic which doesn’t even nearly solve my problem.

Thanks for reading,

Sorry it’s so rant-y

[Lunar97]

That's perfectly understandable. I'm paranoid about my lap showing up negative. I'm going private too, should be having my lap on the 13th May, (no health insurance) because I'm fed up with the NHS' way with dealing with things. I've been in pain for 4 years and have had endless tests and painful examinations but am no closer to getting a diagnosis. They have ruled out every possible condition with me too and endo is the only obvious explanation, but what if it's not? I'm frankly terrified that I will never get a diagnosis and live the rest of my life in pain. I hope you get some answers soon but then again, I have lost all faith in health care. I feel for you. X

[Ceeves96 in reply to Lunar97]

Thanks so much for your reply, it’s nice to know I’m not alone. I know the cost of private is so expensive so I’m very Lucky to not pay it, but my pain was so bad I was considering it even if my insurance didn’t cover it!

I don’t think i’ll ever get a diagnosis now, but I hope i’ll At least be able to manage it while having a good quality of life.

Best of luck for your op, I hope it goes well and you get some answers xx

[RhiannonT]

I really feel for you. I'm 25, have had symptoms for years ever since my period started. I've seen 2 different gynaecologists, none of them endo specialists. I had my Laparoscopy on 22nd of March, no endo found. I was told the same as you 'Everything looks normal and healthy'. I've not been given a follow up appointment or anything. The NHS want to try Hormone treatment now which I really don't want (what's the point in going for chemical menopause when they don't even know what the problem is). A private gynaecologist who has a special interest in endometriosis saw me and said my symptoms clinically indicate endo so I should go back to the NHS and ask to be reffered to a specialist centre. It's now going to be a case of fighting with the NHS to refer me again. All I would say is keep pushing, ask for a second opinion. You know your body and you know when something isn't right. X

[Ceeves96 in reply to RhiannonT]

Thanks so much for your reply! I think a second opinion is the way to go. I was referred to the NHS and have my first consultation at the end of next month (and in between waiting for an appointment got covered start to finish in private - the waiting lists are so bad!) but I’m going to push for them to give me an answer for something at least. There has to be a reason, you’re right I know my body isn’t right so I guess I have to fight on. Best of luck to you whatever treatment you decide to go for xx

[RhiannonT in reply to Ceeves96]

Thanks very much 😊 good luck to you too, I hope you get some answers. Xx

[Hannah0091]

Hi, 100% not! I thought about this a lot before my lap and it’s completely regular to be disappointed. Because your human and you’ve been in pain and wanted to understand what your pain is. Your pain is totally valid. & not in your head! I had a period of thinking it was in my head. I asked people if they thought I had a mental health illness regarding being in physical pain and they couldn’t answer me. I had lots of test for lots of years and people said to me “why you always ill?” We don’t chose the pain! Stay strong! Pain is not normal and we shouldn’t just have to get on with it. I went private in the end. Keep pushing. All the best x

[Ceeves96 in reply to Hannah0091]

Thanks for this, I really appreciate your response! I know that my pain gets worse when I’m anxious (Diagnosed with anxiety last year) so I started to convince myself mine was only related to mental illness. I agree completely that it’s not normal. I’m going To keep pushing until I get some sort of answer thanks for your support! Best of luck to you xx