No endo found in laproscopy

[Emlong8]

Hello everyone!

Just wanted to see if anyone is having/had similar experiences to myself. I’ve had horrible periods since being 12, unable to go to school/work due to the pain and heaviness. I was on the pill for 12 years with no breaks for periods. I came off 2 years ago and my periods are still as bad as before. I had my laparoscopy last Sunday and nothing was found.. it felt really rushed as I was only under for around 30 mins. I am still struggling with the worst pains and heaviest flow, with blood clots (sorry TMI!)

I was told I don’t need a follow up appointment but I just feel so disheartened as I’m still in so much pain with my stomach and back! I was looking into adenomyosis which seem to link my my symptoms but I feel like I’m starting all over again!

Any advice or general help would be sooo appreciated

Love E x

[Joonaspryte]

oh dear , that doesn’t sound right.

Did they take any biopsies?

You can’t always tell just by the naked eye as far as I’m aware. Was it done by an endo specialist?

I would write them an email and ask these questions if I were you.

As for TMI, I wouldn’t worry about that on here 😂 , we are all in the same boat.

[Emlong8 in reply to Joonaspryte]

They didn’t take anything! I’m so confused by it all if im honest! By the looks of it after researching my surgeon, she specialises in fertility and I cannot see anything relating to being an endo specialist which doesn’t give me much hope either

I think you are right about asking the questions and I feel like they’ve gone in, had a little look and sent me packing! Thank you for replying to me ❤️

[Lotusflower29x]

I had the exact same experience. I’ve been suffering with bad periods since they started and I know something is not right. I had a laparoscopy last week and they found nothing. I have since had a consultation with an endometriosis specialist who has agreed to perform the procedure again. He has asked me to stop taking my contraceptive pill 8 weeks prior to my laparoscopy as this can affect the outcome. This was news to me as I wasn’t asked to do this before my last laparoscopy on the NHS.

[Emlong8 in reply to Lotusflower29x]

I think I am going to go ahead and have a consultation with a specialist it seems the best way forward and my other surgeon just didn’t seem interested at all! Hope your recovery is going well and let me know how you get on with your next lap ❤️

[Joonaspryte]

I'm sick of being fobbed off by people who don't have the expertise. I mean I am bleeding so much from behind, and every Dr or consultant has been shocked by how much, and still my colonoscopy was done by someone who doesn't know anything about endometriosis. He said it looks normal, but did take 12 biopsies for which I'm still waiting and said I had a fixed sigmoid. Also I had blood in my wee, and had an exceptionally fast camera to look inside, and was sent away, saying it's fine, although I noticed a sore looking patch. the man didn't know anything about endometriosis.Also I had a CT scan which found an cyst on my appendix, they took it out and came to see me after, saying it just looks a normal appendix this surgeon was one of the top men, but not with endometriosis. The histology however showed it was surrounded by endometriosis, fibroids, glands and stroma. So this proves that even looking closely after it's been taken out, you cannot tell by the naked eye

[Sunset-lady]

Read this whole thread and it's terrifying how people who are not endometriosis specialists are carrying out exploratory operations. You must see a specialist on the BSGE list. It's so stressful going through this without adding extra stress from people who haven't got the experience or knowledge. My gynaecology team couldn't complete my hysterectomy as it was all joined together- they had no idea and they did not have the skills. Afterwards my surgeon didn't know if it was endometriosis or not which is why he referred me to a specialist centre. The arrogance of some of these so-called specialists is extraordinary. Keep fighting and find someone who can help. Get an MRI scan and make sure the person who interprets it is trained to look for endometriosis. Good luck x

[Mylittledecoy]

I'm so sorry , definitely look into Adenomyosis, and push for them to actually look! I have the same symptoms you've described, they won't test me for endometriosis as they've said it's just the Adenomyosis causing the problems!

[Vicky15111990]

that sucks. I just had my hysterectomy as that’s the only cure for adenomyosis

[VioletCoffee]

I had the exact same experience, had my lap Oct 2023 and the surgeon didn't even come to talk to me after despite the many questions I had. I was discharged back to my gp who referred me for gastro who surprise surprise didn't find anything wrong. I then took it upon myself to go seek help privately from a specialist after saving up for a while, I was put on dienogest which has been a big help and had an MRI which found varicose veins around my ovaries and polycistic ovaries, something which was never mentioned to me in my many scans under the NHS or my lap. I would recommend finding a specialist if you can, as they're the ones who really know what to look for. It's taken a massive toll on me all of this and I'm 23, so fairly young. Just know that you know your body better than anyone and should advocate for yourself! 🩷🩷🩷

[Manunited2]

Request a mri i did and they found it on mri

[Holidaysarelife]

I had the same but I went for my follow up and the constant scanned me again I was in agony during especially on my right side so she agreed the best way forward is a hysterectomy and removal of right ovary, this was nearly a year ago I’m still waiting for the op 😞

[TomatoGirl97]

I needed to see this today. 💙 I just had my laproscopy 5 days ago. She said they didn't find anything. But the pain around my right ovary is still there. She is certain that over time the pain will subside. I've had the pain since I was 15 - now 27 and it's getting worse.

It feels like I'm chasing a ghost. I had some follow up questions but the surgeon refused to ring me.

I feel like a fraud and really lost.

[Emlong8 in reply to TomatoGirl97]

sending you all the positive vibes for recovery ✨ I went to see my doctors last week who were disgusted in the way I was treated and I’m now in for an ultrasound and MRI to look further, don’t give up fighting you know your body better than anyone! ❤️❤️❤️