told I have no active endo

[gabbiefawn]

Really looking for some advice.

In 2019 I had a lap and got diagnosed with endo and it was burnt away.

Yesterday I had my second lap, they said they found no “active” endo and only scar tissue. So didn’t remove anything.

I feel so lost and back and square one I have been in more pain in the past year or two than I ever was before my first lap.

symptoms include painful ovulation, very heavy bleeding, clots..

Has anyone experienced this? What happened after? Did you get diagnosed with something else? I just feel so lost and don’t know what to do.

[Endofitall]

I’m so sorry to hear you are in pain and the lap didn’t provide answers.

3 things come to mind:

1. Have you had an MRI to look for adenomyosis? Endo and adeno are seen as evil twin sisters and people can have both. Adenomyosis isn’t always seen on ultrasound and won’t be apparent at laparoscopy.

2. Have you had any hands on pelvic floor physio? A lot of pain can be due to pelvic floor muscle thickening and tension from years of pain and inflammation sat on those muscles

3. Was the laparoscopy done by an endometriosis specialist? Some general gynaes are not able to recognise endo in all its forms.

I really hope you get answers and your pain improves.

[TallulaShark]

I haven't had the exact same thing, but I've just had my first Lap and told I don't have endo. I do however have lots of adhesions, some of which were removed, and some I need a second surgical procedure to treat. This is a result of an emergency c section 15 years ago and would explain my pelvic and abdominal pain. I'm still at a loss over my incredibly painful and heavy periods though, clots the size of my fist. So when I have my next appointment with my consultant I'm going to request an MRI for adenomyosis, as that can't be seen during a Laparoscopy.

[Rainbow2468 in reply to TallulaShark]

My adenomyosis was found during a transvaginal ultrasound.

[Sunset-lady]

Hi I have stage 4 endometriosis but my consultant says its not active. It's scar tissue and lesions that have fused my cervix to my bowel and left ovary. I don't have a lot of pain but I'm hemorrhaging and I've been placed on zoladex as they couldn't stop it. They tried to do a hysterectomy but it was abandoned when they found the endometriosis. I also have fibroids which do cause issues. I don't really understand non active endometriosis so when I went private and asked the endo consultant he said all endo is active but it may be old and not cause pain. Mine is grey not red. If you are on Instagram follow Rebecca Mallick ❤️ she is a surgeon and passionate about teaching women about endometriosis. Xxx

[asread]

My report also says no active endo - what does this mean? Thanks x

[Sunset-lady]

I think it means it's not bleeding and it's not actively attaching itself to organs. The damage may have already been done. Many of us have a terrible time in our teens to mid thirtiesbut it then calms down only to fire back up in peri menopause.