Feeling lost after negative laparoscopy

[Rb0904]

Hi everyone

This is my first time posting so feeling a little nervous!

I am genuinely feeling lost after having had a negative laparoscopy. All of my symptoms (e.g. pelvic pain, painful bowl movements etc etc) fit a diagnosis of endometriosis. The consultant I saw was the first to say it & immediately put me down for a laparoscopy.

She performed the laparoscopy 2 weeks ago. I didn’t see her before or after. Instead, 2 junior doctors appeared 30 seconds after I came round from the anaesthetic & informed me they didn’t find anything so that’s good news isn’t it….well I’m slightly embarrassed to say I burst in to tears. I didn’t ask any questions as I hadn’t even had a chance to catch my breath.

My follow up will apparently be in 4 months & I cannot speak to her before then. But I feel lost, could I still have endometriosis even if she didn’t find it? After some digging my consultant isn’t an endo specialist. Should I push to see a different doctor?

I know this is a club no one really wants to be a member of but I felt like I had support & understanding, now feel like a fraudster & with no where to turn.

Has anyone else had a similar experience of a negative lap & then later a confirmed diagnosis?

Thank you in advance x

[Camodo_Cat]

That sounds like such a horrible way for them to tell you they didn't find it. To not have anymore feedback about the surgery or next steps doesn't sound right. I've experienced similar about 10 years ago where they found adhensions (no previous surgery or injury) but was told it was nothing. I was too upset and naive to endometriosis to fight back. I didn't have an endo specialist do it and I think that makes a big difference.

You have a right to push back and request your surgery report, and to have a second opinion from a endo specialist. It's good to have a look at nearby hospitals and search for those with endo training and experience. Endo can be hard to find or misdiagnosed if the surgeon isn't trained in that field. I hope you can fight for more answers. I wouldn't take a negative result as a confirmation you don't have endo, just you may have had the wrong surgeon. Good luck!

[LaraBo in reply to Camodo_Cat]

Hi - from what I have studied so far, NHS does it wrong. You do not need a surgery to diagnose endometriosis, and if a surgery will be performed, this should only, only take place with an endo specialist who would have so much experience, that he would find it even though it might not seem there. The recommendation is, never have surgery until you are sure it is needed and with the right doctor. Please see an endo specialist privately if you can. All the best!

[Rb0904 in reply to Camodo_Cat]

thank you for taking the time to share your experience & advice, it is very much appreciated

[Sunshine1310]

I had a similar experience. My surgery was at the start of May. Just as soon as I had came from the surgeon was there with a barrage of info, which included there was no endometriosis. She found an adhesion from stomach to front wall which was fixed. She said she was sorry for no obvious reason behind my constant pain and have I tried Buscopan!!! Wtf!! I too started to cry but I think it was out of anger. She is blaming the pain on my bowel ie constipation. Absolute rubbish. My tubes were inflamed too apparently but not enough to diagnose an infection or anything. I have received my letter from after the op and she says that I should go to my doctor and ask for Lidocaine patches. I’ve actually tried them as y dad has them and they didn’t touch the pain at all. So I’m back at square one really. I’ve asked for an appointment and I’ve written down a list of questions that I didn’t think of when I had just woken up Sending you love in your journey - I appreciate how utterly exhausting it is xx

[Rb0904 in reply to Sunshine1310]

thank you for sharing your experience, it’s so frustrating isn’t it! It’s reassuring to hear Simone else having a similar experience. You’re absolutely right, it is exhausting - both the pain & the struggle to get taken seriously & get a diagnosis! Wishing you luck & strength to keep pushing for answers xx

[ccfd9]

Hi, did they do any biopsies? Endometriosis can be deep infiltrating and hidden from sight, it can also be microscopic and not easily detected. That is why you need an endometriosis specialist.

The other question is who did the operation, was it the junior doctors or the gynaecologist?

However, there are things that you can do that may help your symptoms. Many women get a relief from their symptoms by avoiding wheat and gluten from their diet. It takes some doing but it is worth giving it a try for a month or two. Be aware wheat can be hidden, often used in some tablets, pain killers, antibiotics etc.

[Rb0904 in reply to ccfd9]

I’ll be honest, I don’t know if any biopsies were taken. Thank you for question, I’ve added it to my list!

As for who did the op……I have had to take it on trust that the consultant I saw & was told was doing it actually did. I didn’t see her at all on the day! I joked in the anaesthetic room that I wasn’t sure if she was on holiday as I hadn’t seen her, they assured me she was doing it.

The advice regarding diet is very much appreciated, I have been cutting down on wheat as a start to try to alleviate the bloating but will explore that & dairy further

[Dee_EndoUK Moderator Endometriosis UK]

Hi Rb0904

Just following on from the comment by ccfd9 above regarding nutrition. Everyone is different regarding their nutritional needs and what works/doesn't work in easing/helping you to manage your endometriosis symptoms. If you are considering dietary changes, please either consult with a nutritional therapist (find one at bant.org.uk) or read a book by Dian Shepperton-Mills entitled 'Endometriosis: A Key to Healing Through Nutrition.

Sorry to hear that your laparoscopy didn't give you the result you wanted - the pain is not in your head and you are certainly not a fraudster. We're all here to support you. It could be that the endometriosis has been missed if the surgery was not carried out by an endometriosis specialist. Alternatively, you may have deep infiltrating endometriosis or adenomyosis.

If you aren't able to speak to the consultant who carried out the surgery before your follow-up appointment then it could be worth returning to your GP to see if they will consider referring you to a BSGE centre (mentioning that the laparoscopy wasn't carried out by an endometriosis specialist). If you do not qualify for BSGE then we'd recommend finding a gynaecologist with a specialist interest in endometriosis. Under the NICE guidelines, each gynaecology department should have someone in their team with a specialist interest in endometriosis.

Take care and keep pushing for a diagnosis x

[Rb0904 in reply to Dee_EndoUK]

thank you thank you thank you for the reassurance about not being a fraudster! That was all absolutely fantastic advice on following up with my gp, nutritionist & the book & your recommendations. It is all massively appreciated & has given the push I needed to get myself motivated to keep pushing for answers x

[Dee_EndoUK Moderator Endometriosis UK in reply to Rb0904]

You’re so welcome - wishing you all the best! Keep pushing for answers and keep posting on the forum if you need support at any point x

[Lovebunnies123]

I had laparoscopy yesterday, exactly the same thing happened with me I even have lumps you can physically feel in my lower stomach but they have no clue what they are and told me to go to my gp. I know how you feel I have been waiting 5years for surgery hoping for some explanations for all my pains...but nothing in fact I feel like I'm right at the beginning. We just have to keep fighting for answers and hopefully we will get some eventually! I'm wishing you The best for the future xx

[Edwasl3]

I’m glad someone has written a post about this. I had a lap just over a month ago now with the same results. Over the past 10 years I’ve hit multiple dead ends but majority of gynaecologists have suspected endo. After lots of blood work, MRI, hysteroscopy, ultrasounds and mirena coils (and a huge amount of energy) I researched and pushed for a laparoscopy. So to then be told there is nothing there, whilst coming around from general is such a massive blow so I understand your sadness and frustration. I was left with discharge notes saying check new mirena in 6 weeks and I’d had excess bleeding during the surgery. No follow up. Spoke to my GP who said ‘the laparoscopy is the gold standard for diagnosis. So if they didn’t find anything, it’s not there.’

I’m now going to a private specialist and haven’t been able to get insurance due to the longevity of my symptoms.

Just keep pushing for what your gut is telling you! It’s very disheartening but it’s not a final diagnosis when you haven’t had a specialist involved.

Good luck with everything xx