Laparoscopy found nothing - symptoms all point to endometriosis

[puddl0503]

I don’t suppose anyone has been in the same situation as me and can help?

I have suffered from a range of issues from 15 with periods; bleeding and pain with intercourse, severe leg pain, always bleeding/spotting outside of periods, bad period pains, UTI like symptoms and odd bowel movements around the time of my period. I was put on the coil and my pain is even more severe with it.

I had a laparoscopy on friday and despite not being confirmed by the gyno, nurses have said my surgery notes suggest everything is normal and they have found no endo which is great but frustrating because i have no idea what my pain is and I am worried now they haven’t found anything they will just leave me to get on with it.

has anyone experienced this before? and if so, did you get a second opinion or did you carry on investigations?

[Ps-endo]

Hey,

First of all I’m so sorry you feel like that. It’s hard because we don’t want to be diagnosed with an illness but we do want answers, I totally get it!

I had my first laparoscopy in 2021 with general gynaecology and was told they’d found a suspicious area but eventually they ended up giving me no diagnosis and discharging me even though all my symptoms and the suspicious area pointed to endo. So I kept pushing with my GP for further tests, I eventually had an MRI this May which showed adenomyosis and suspected endo in one area so I was referred to an endo specialist, I had my second laparoscopy two weeks ago with the specialist where they found endo in 6 different areas, that weren’t found with general gynaecology. So I finally have my diagnosis, however it was missed during my first laparoscopy and it’s taken 12 years overall (from symptoms starting) to get to the diagnosis.

Was your laparoscopy with a general gynaecologist or a specialist? I knew that something wasn’t right with my body and you know your body best, if you feel it wasn’t enough keep pushing for answers and be sure to advocate for yourself if you’re not happy with something.

I hope you get the answers you’re looking for soon x

[puddl0503 in reply to Ps-endo]

Thank you for your reply! that’s really interesting to know and i’m so glad you pushed through.

I am not really sure if my gyno is a endometriosis specialist - it says on his profile on the hospitals website that he has interests in endo but i am not sure if that means it is something he specialises in? I basically went to my GP, they suggested endo, referred me and due to the pressure on the NHS put me through private.

I spoke earlier with the nurses and they said theatre notes say everything looks healthy but i just don’t understand how it is all fine when i suffer with all sorts of symptoms each month and i now feel so deflated because i've gone through this whole ordeal (which i was hoping would be over) to be back at square 1 and it was such a fight to get here, doing it all over again is going to be a nightmare.

When asking for an MRI and a second opinion, how did you go about it if you don’t mind me asking? x

[Ps-endo in reply to puddl0503]

I completely understand where you’re coming from it’s so frustrating!

Basically I just went back to my gp and said I wasn’t happy with the outcome and clearly something isn’t right, ultrasounds didn’t show anything except a few small cysts so he referred me back to a different gynaecologist, who then suggested the MRI, once I’d had that I was referred to a specialist for a consult and then the laparoscopy was booked. I’ve not had my histology results yet as my lap was only 2 weeks ago but the notes have diagnosed endo and mentioned areas it was found. If I were you I’d go back to the gp and question if the gynaecologist was a specialist in endometriosis and if not, I’d ask for a second opinion for sure x

[puddl0503 in reply to Ps-endo]

This is really helpful! thank you so much for the insight. definitely makes this process a lot easier and less lonely, considering there isn’t tons of information out there! x

[MangoStickyRice]

Thank you for sharing + great advise from Ps-endo too. Following.