Thought I finally had an answer for my pain - Endometriosis UK

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Thought I finally had an answer for my pain

rae02
rae02

Had my laproscopy 14 weeks ago where they found endometriosis. I’ve just had my follow up with the consultant who said I had the tiniest amounts of endometriosis, I explained I still had lots of pelvic pain all on my right side and he said that the amount of endometriosis I had wouldn’t be causing this pain.

I’ve no idea what to do now he said he would recommend in my letter to my GP I see someone from orthopaedics. However over the past 3 years I’ve seen numerous physios private and NHS, chiropractor, podiatrist, musculoskeletal specialist, had an MRI on my lower back and hips, saw an osteopath tried codeine, amitriptyline and Nefopam for the pain and nothing has helped. I thought I finally had an answer for my pain and now I feel very fed up as I’m back to square one and have no idea what the issue is. Has anyone else experienced something similar?

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Hi I hope you are well when I had my first laproscopy my specialist told me that it doesn't matter if you only have a tiny bit of endo or have severe endometriosis it still can cause unbearable pain i think may be you should ask your doctor to refer you to another specialist it frustrates me so much when they just palm you off i have seen many specialists over many years and a few years ago I finally found one who listened to me and was very understanding the thing is endometriosis spreads there's no cure for it so before it gets worse get referred to another specialist in hope that helps you a bit take care 💛💛

rae02
rae02 in reply to angiecxx

Thank you for your advice, feel like I’m just being passed from pillar to post. I’m going to make an appointment to see my GP and see what happens from there. I can’t imagine seeing someone from orthopaedics will help.

Hiya, hope you’re well. I was told I only had a tiny bit of endo too. They actually showed me the pictures and it was a tiny white dot. But I had pain in my right hand side lower down every single day. It was like a tugging pain and this went away as soon as the endo was removed. As said in the comment above pain and endo doesn’t always correlate. Some women have it extensively and never get pain! It’s wrong for GP’s to tell you that’s not causing your pain, he doesn’t know how you feel in your body! Don’t feel like you’re back to square one. See how you get on now and keep monitoring and if you’re still suffering go back and see someone, maybe a different GP? Hope that helps & good luck ☺️

rae02
rae02 in reply to DEvangeline

Thank your for you advise it was the consultant I saw who told me it can’t be the endo. He showed me the pictures and it was just tiny dark red freckles he didn’t actually tell me where it was found either. I had a bit of relief when I had my op and a bit after but I’m still in agony with my right hand side daily

Hey,

I am in the same boat as you, I had my follow up just over 5 months after my lap and they said I only had a tiny amount (but as others have said they did also say the amount doesn’t correlate to the amount of pain and she also said she often finds people with small amounts seem to have the worst pain!) but when I said I felt like my pains are slowly coming back she said it shouldn’t be the endo as it shouldn’t have grown back yet and to just keep an eye on it and go back in a year if I need to as if that will help with the next years worth of pain. So you are definitely not alone!

Could you maybe get referred to another gyne or specialist to get a second opinion?

rae02
rae02 in reply to Chrysta123

I think I’ll make an appointment to see my GP and discuss where I can go from there. He knows I’ve had numerous physio and scans all which show nothing is wrong with my bones, I can’t think what else it could be other than endo

It is an absolute myth that the amount of endo you have lines up with the amount of pain you have you can have little endo and loads of pain or loads of endo and not much or no pain. I have revived this info from my GP private gyne and my NSH gyne, so please don’t think your pain is invalid x

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