No endometriosis found

[Caitlincee1]

Hi all,

So after being on Zoladex injections for a year I finally had my laparoscopy surgery.

No endometriosis was found during this except for tilted womb. Mirena coil inserted.

I’m really upset that I’ve been given no diagnosis or real answer to the horrendous pain I’ve been in.

Just looking to see if anyone had any similar experiences ?

Thanks ,

Caitlin xx

[Angellouise]

My daughter is going through the same thing. No endometriosis found but she has all the symptoms and can’t work or go to school. She is waiting to see another gynaecologist to see if the previous ones have missed something. I wish you luck

[Caitlincee1 in reply to Angellouise]

Thanks for replying and I hope your daughter finds someone who can help! He did say since I had been on menopause inducing injection for a year that could have shrunk it away.

He said I also had a tilted womb and sensitive womb?

Hopefully mirena coil will help me now x

[goldenretriever14]

Hiii! I am so sorry that you've experienced this, but so glad you posted because I have just experienced this as well!!

I had my laparoscopy on 11th Dec, my consultant was so insensitive told me nothing was wrong and all that they saw was that I have a tilted uterus (and he said they found loose blood in my abdomen but apparently that's normal?! not sure loose blood is normal but here we are). I feel so rubbish about it all because I have all the symptoms for endo and had to go to A&E my pains were so bad once, no one seems to believe me and it didn't help that my consultant was particularly ignorant to my issues. His response for treatment was to stop my periods even though I'm already on the mini pill and have just continuously gotten worse. He also said if I'm still in pain to just go and see someone else so instead of finding what the problem is he's just passed me on.

But don't give up hope and keep pushing to find answers!! A friend of mine had her second laparoscopy and they didn't find anything but she had an MRI and they saw the endometriosis, so just because they didn't see it, doesn't mean that nothing is wrong.

I really hope you find some answers and get some help for your pain and symptoms! Sending love xx

[Caitlincee1 in reply to goldenretriever14]

Thanks so much for replying ,

I’ve felt invalidated and upset ever since.

It’s not that I want a diagnosis or something to be wrong with me I just want the pain explained.

It is deff gynae related and I’ve suffered since age of 13.

I’m due to see the consultant in March again for post op follow up.

I’m going to ask for an MRI as others have suggested could show something.

Hopefully the Mirena coil helps if it does and stops pain I would be happy.

He did say it could have been small amount and Zoladex could have shrunk it away xx

[Dani6290]

This has been my experience today; I had a laparoscopy this morning and they’ve said there’s no sign of endo, and everything looks normal*, apparently. I’m disheartened, but still feel like I did the right thing to pursue a laparoscopy. They’re going to put me in the ‘Chronic Pain Clinic’ now; the consultant mentioned they may want to do an MRI, and having read this post I will 100% be pushing for that!

Thank you for sharing your experience - it’s really valuable to read 🙏 Wishing you luck with your next steps!

*I was confused by the words “ovaries appear polycystic in outline” showing on my discharge letter, but the consultant didn’t mention that when he came to see me after - I remember the conversation despite the fact that I was super spaced on oral morphine at that point!

[Caitlincee1 in reply to Dani6290]

Hope your ok! Glad my experience has made others feel not so alone in this situation. It’s such a disheartening experience 💖 I didn’t even push for MRI in end as mirena coil has been fab!

Consultant/surgeon said he believes I did have endo but Zoladex treated it

However, I do have polycystic ovaries noted also.

Since then they’ve discovered I’ve always had an undetected issue with my colon and so this may have been part cause of extreme pain.

So now I’ve been passed to gastro ….

X

[Dani6290 in reply to Caitlincee1]

Thank you for being so open! I’m pleased you’re getting on well with the coil 🙌 Did they say anything to you about the polycystic ovaries, or is that ‘normal’?

How interesting (and good!) that they’ve spotted this issue and referred you to gastro - it’s bonkers how interconnect it all is yet how little is known about it. How did they manage to work it out, if you don’t mind me asking? xx

[Caitlincee1 in reply to Dani6290]

No worries ! I can remember desperately trying to find other people with similar issues and struggling. In relation to polycystic ovaries it isn’t normal but he said my fertility hadn’t been effected. Mirena coil will hopefully help balance hormones out.

Mirena coil has helped massively especially as I suffered heavy bleeding.

Yeah they always said my gastro issues were due to endometriosis but then realised two separate issues.

Well about a month after surgery I collapsed and went unconscious that’s when gastro accepted me onto caseload.

Then I’ve been in and out of hospital since with lots of tests.

Make sure your pain isn’t actually a gastro problem also because so similar symptom wise

Xx