endo confirmed on Laparoscopy but by biop... - Endometriosis UK

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endo confirmed on Laparoscopy but by biopsy results came back negative?!

sianDJ93 profile image
9 Replies

hi all, i'm really looking for some advise i feel so lost and deflated.

i had surgery last year in December a laparoscopy. My first Gyno when i went to them with my symptoms was so dismissive but luckily she went off on maternity and i got a replacement who was wonderful

i told him how unbearable intercourse is before and after and how i bleed afterwards. I can get sharp blinding pains right over my left ovary and i have day to day period pain that can swing from mild to severe

my periods could last for up to 2 weeks so heavy and very painful, luckily i was on the contreceptive pill and these stopped my periods

so i had my Lap, the surgeon saw me an hour later when i woke to say he found extensive endo on my left ovary, pouch of douglas and somewhere else. I was relieved in a way i could put a name to this horror but in no way wanted the disease.

fastfoward 3 months i recieve a letter to say the biopsies of the endo he took came back negative?!

ive since had the pain come back 2 months after the surgey only minor at first but more severe a year later. My Gyno (the original one) insists because the biopsies came back negative theres no way i can have it, i also cant have endo if i dont have a period? she also thinks bleeding and discharge is related to IBS?! ive never heard such nonsense.

Has anyone had a lap and theyve confirmed it but then biopsies cam back negative?

has anyone also had there periods stopped but still suffers on a daily basis?

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9 Replies
HollieNiamh profile image
HollieNiamh

Hiyya I too suffered awful pain during intercourse and although when I had my laparoscopy they did find the endometriosis and haven’t said other wise I found it to be such a battle to get a diagnosis in the first place. it sounds to me like you do have it, I can’t understand why they saw it in the laparoscopy but the results came back negative. I also felt relief and would say stand your ground and see a different doctor! I also did still have the pain even when my periods were stopped when I was on the pill, you can have endometriosis and not have periods it doesn’t just go away when you start taking the pill so If I was you id see someone else! I hope this helps good luck!

Yes!!!!! (To the first question.)

My surgeon took out some endometriosis and the pathologist said it was a benign tumor! However, I was still diagnosed with endo as my surgeon (also my gynecologist) was not convinced that I don’t have it and am being treated accordingly.

I’m glad I’m not the only one who had this happen! I’m currently taking tri-Linyah and it’s seemed to help so far.

Also I think your gyno is full of crap... no way ibs can cause that (I have ibs so I think I would know..???)

I’d try to get a different gynecologist if I were you. I’m sorry they’re dismissing you like that! It’s very frustrating.

I just had a Dr. at the hospital tell me I had nothing physiologically wrong with me and she tried to send me home when my gallbladder was inflamed and about to burst! So not all doctors know what they’re doing! It’s so annoying!

HollieNiamh profile image
HollieNiamh in reply to

completely agree, i felt dismissed because of my age also

in reply toHollieNiamh

Yes I feel no one listens to young women.

HollieNiamh profile image
HollieNiamh in reply to

so many people were shocked that i had endometriosis when in reality it is common for women of many ages and needs more awareness!

Fabbird profile image
Fabbird

Hi, I’ve had the same experience. My understanding is that the biopsy is to check for endometrial cancer. If you have endo the risk of this is slightly higher, so they generally take a biopsy during a lap as a routine check.

This is what I was told, so when my biopsy came back negative I was simply relieved.

Sounds like you need to clarify what the purpose of the biopsy was?

in reply toFabbird

I was told from my gynecologist (and on the pathology report) that it stated: No endometriosis found.

(But thankfully my gynecologist disagrees and is treating me.)

Fabbird profile image
Fabbird in reply to

That does sound odd. I can’t see how a biopsy can diagnose endo. After all it’s just a small sample.

Good to hear that you have a gynaecologist who is treating you anyway.

in reply toFabbird

That’s what I thought! Maybe that’s why my gynecologist is treating me anyway haha.

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