Endometriosis and a clear lap....help!

[Pooky1489]

Hi all,
Newbie here.
I've had issues for 20 odd years now with heavy periods, intense pain, bleeding during urination etc. More recently, bowel issues (GI investigations normal) very painful sex (leading to forced abstinence!) intense nausea, weight loss, irregular bleeding and numerous hospital visits plus time off work, heavy opioid pain relief due to ?ovarian cysts. I had internal and external ultrasounds and an MRI after an emergency admission and the consultant suggested adenomyosis and endometriosis highly likely.
I had my laparoscopy on Wednesday (went private in the end as I have no quality of life currently and I couldn't have done the 18m minimum wait on NHS) and the surgeon said it was completely clear I know it can be common to miss endo on the first lap, has anyone else had this experience?
I have had the coil fitted and my plan is to see an endo specialist next year if I have no relief from it. I feel so frustrated

Hey, didn’t want to read and run but I can’t offer much advice as I’ve not had this procedure.
Hope you’re okay, I also believe I am suffering from endometriosis and am speaking to my doctor about it today. Had no idea about the 18m wait!! That’s crazy.
I hope you’re able to get sorted, the pain is dreadful and not fair for you to live with that

It could be missed endo - sometimes only a minuscule amount can cause a lot of pain (similarly some people can have a lot and not so much pain - and only discover it because they suffer fertility issues related to endo). Cysts can cause similar pain without endo being part of it. Make sure that you continue to get this seen to - if it is impacting your daily life, doctors should take this very seriously. It can be so frustrating l, I sympathise very much.

Internal and external ultrasound scans (particularly that type) for endometriosis hardly if ever detect endo if it is there. I have had more internal ultrasounds than I care to mention as part of fertility treatment and NONE of those showed the vast amount of endometriosis present throughout my uterine cavity.

Sometimes endometriosis can present atypically and it sounds like it could have been missed here. Deep pain during sex is highly indicative of endometriosis being present.

I would try and get yourself referred to a BGSE centre for endometriosis if you are not already seen at one of these.

www.bsge.org.uk/centre/

I am sorry that things didn't worked out as you hoped but could it be that you have adenomyosis and not endometriosis. Your doctor suspected both but gave the verdict about one and not the other.
I have adenomyosis but not endometriosis but still had same symptoms as yours.
Do your surgery notes say you have a bulky uterus as it points to adenomyosis. The problem with adenomyosis is no doctor can give an assured diagnosis before removing the uterus entirely which is not possible without hysterectomy so the diagnosis is usually a may be but not a confirmation.
Adenomyosis symptoms do become less severe with mirena over time but it may take 4-5 months to see any difference.

Have had similar issues for many years. Had an mri which showed nothing but lap showed bulky uterus. Pathology from hysterectomy showed adenomyosis and that really is the only way to know for sure.
Have you tried the mirea coil before?