Next steps: no endo found : Hello I have... - Endometriosis UK

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Next steps: no endo found

lilylouise profile image
10 Replies

Hello I have just had my first laparoscopy today. No endo found. Discharged back to GP. What should I do now? I suppose painkillers to deal with my symptoms but paracetamol and ibuprofen do not work and the fatigue I feel and bloatedness whilst on my period is awful.

What painkillers are good?

What were anyone else’s next steps after endo not being found?

I am sad.

Thank you xx

10 Replies
weekari profile image

Hey, it's so tough when you hope so much for answers that will lead to treatment. You just want to feel better! I'm so sorry, I know how disappointed you'll be feeling.

I had a lap 2 years ago and nothing was found. I felt like I'd been a drama queen and felt a bit stupid for putting myself through unnecessary surgery. The gynae had been sure I didn't have endo and had said they'd do it to 'ease my anxiety' I felt like a hypochondriac.

After a few weeks of feeling rubbish. I stopped looking at my problems from a medical perspective and started trying to understand what was going on with my body. I realised, even if I didn't have endo, all my issues pointed to the fact that my hormones were out of balance. So I basically read up on what affects hormones and made loads of radical changes to my lifestyle (reduced stress by changing relationships, meditation, yoga, eliminated harmful unnecessary chemicals from my life, became vegan). I also tried to really listen to my body and think of what I needed and tried to follow that. This lead me to lots of alternative therapies (reflexology, psychotherapy, reiki, acupuncture, chiropractor, etc). This was all massive changes for me, before all of this, I was the least spiritual person, I rolled my eyes at all that stuff.

Nothing cured me but it has all made life more manageable. Some of these changes have really changed me as a person, I've learned more about who I am and what I want from life and I value life so much more. I'm still unwell and struggle terribly with fatigue and pain but I cope much better with it.

In a real twist, I started to get really bad back pain and eventually went back to the Dr, I was referred to orthopaedics and just a few weeks ago, had an mri which found severe endo throughout my pelvis 🙄 although I'm gutted to have been messed around, in a way I'm glad that it didn't get found at that lap otherwise I wouldn't have found these amazing things that are now a huge part of my life. My goal now is to become a yoga teacher and to try being yoga to people who have chronic health conditions.

My advice of to let yourself feel a bit crap just now, you're allowed to feel disappointed, sad, angry... Whatever else you're feeling. But then try give yourself some time to really listen to your body and what you really need. You will know on some level. And then try and act from there, if you're sure there is a physical cause that needs medical attention, don't give up. Find a gp you feel listens to you and just keep going back. But be sure to look after yourself and don't see it as a fight, it'll just exhaust you.

I knew I felt so exhausted and my body felt inflamed. Which was right. I was trying to work full time in a hugely stressful career despite feeling this way, it was killing me. I listened and made the changes I needed to.

There is a lot of hope for what lies ahead. Xx

lilylouise profile image
lilylouise in reply to weekari

Thank you for this lovely reply. I have read it over and over again. I am going to focus on getting better and then consider everything you have said xxxx

I’m really sorry you don’t have answers for the symptoms & pain. It’s definitely not in your head.

Have you thought about going through bowel investigations?

Apparently bowel issues can cause similar issues to gynae ones and are impossible to tell apart according to my fertility doctor. He thought my symptoms were bowel in origin prior to his diagnosis of endometriosis.

Go back to your GP and ask to see a bowel specialist now endo has been ruled out. 👍 Good luck xoxo

lilylouise profile image
lilylouise in reply to

Thank you so much. I will do that I think because I am sure there’s something physically wrong it’s not just bad pain. I am worried what other people will think now I’ve told them nothing was found. I stupidly told some work colleagues that when they text asking how I was and I’ve not had replies from some of them so now am really paranoid about that. What if they think I am just making a fuss over nothing or can’t cope with any pain. I know I shouldn’t care that much what people think but I can’t help it. Thank you for replying sorry for me ranting I just am very emotional right now xxxx

in reply to lilylouise

Don’t worry what others might be thinking you know your body best & know it’s not normal. Keep fighting until the cause is known 👍 xoxo

Sarahlouisex profile image

The same thing happened to me. It’s so upsetting. Not that you want to have it, but that you want an answer to all the pain your getting.

It’s 100% not normal to be in so much pain.

My lap was 2 years ago and I’m now waiting an appointment to see an endo specialist in August.

I was discharged after my op and had to keep going back to the doctors to get somewhere.

After reading stories from so many other ladies on here it can be missed.

It’s so disheartening but keep your head up and don’t stop until you find out what’s wrong. I know this is easier said than done (I’ve felt like just giving up so many times) it’s such a hard fight.

Feel free to message me if you want to chat x

lilylouise profile image
lilylouise in reply to Sarahlouisex

Thank you so much for this response. Good luck and I hope you get somewhere with the endo specialist. Xxxx

Lottie80 profile image

Hi lilylouise.

Im sat here in hospital 48hrs post first lap. Told stage 4 endo. Theyve removed whats possible.

It feels shit too.

Knowing my chances of having a baby are now small and I'm in pain. Could consider extensive rectal surgery which could leave me with a stoma bag.

I get being in pain and not knowing why isnt an easy option... but right now id prefer your side of the fence. :-(.


Lottie80 profile image

Sorry if that came across harshly... it wasnt meant to.... i hope you feel oin control again soon. Even with a diagnosis, there isnt always a cure. Ill be taking a leaf out of weekari s book. Will try and focus living with it rather than a constant path to "get rid of ut" as I feel the latter will zap energy and happiness.

Good luck x

L x

lilylouise profile image
lilylouise in reply to Lottie80

Good luck to you too xxx

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