Just been diagnosed stage 4 endometriosis - Endometriosis UK

Endometriosis UK

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Just been diagnosed stage 4 endometriosis

Reggiefelix17
Reggiefelix17

Hi guys

I’m brand new to the forum

I’ve just had my first laparoscopy and been told

I have server stage 4 endometriosis

And it’s attached to my bowel so I need another op to try and remove it

Scary stuff ay ?

Mine started with bad bowel habits around my periods and the the terrible pain in grone

Area

Just wondered if there’s anyone in here you can share any tips for me now I’ve been diagnosed

Thanks x

9 Replies

I am in a same boat my lapro will be on 29 nov,I have bowel involve stage 4 endo as well,my doc said they will go for second surgery after lapro and it will be quite severe and they also added second surgery will difficult to handle.

Can you pls tell me how do you feel after endo and how long you took to recover after recover.

I mean how do you feel after lapro and how long you take to recover,they just do the diagnostic lapro or they were treated it as well?

Reggiefelix17
Reggiefelix17 in reply to Eraj

Hi ya sorry for delay I had trouble getting back on here !

Hope ur laparoscopy went well ! ?

And u recovered well

What’s your next step ?

Eraj
Eraj in reply to Reggiefelix17

Hi yeah it was diagnostic, I have booked for major bowel surgery after 3 months ,its laproscopy but major,thank for asking xx

Hey, I’m stage 4 severe endo too and will be having my gnhr injection tomorrow to prep me for my excision lap in feb. It’s definitely scary when you first find out as there’s just sooo much to worry about lol but be sure as you come to terms with the disease it Gets easier. I was diagnosed begining of 2017. There’s a lot to consider including fertility and if you wish to preserve it during your excision lap. Try not to panic it’s a lot to take in especially when you get a diagnosis of stage 4. Endo affects everyone differently but if your in the Uk and getting treated by the nhs they will want to give you a gnhr injection too for the next lap op and quite frankly even that’s scary when you read up on it online so try and not get sucked into everything that is said online as it’s different for everyone.

Sending hugs 🤗

lou840
lou840 in reply to pinpops

Hi, I am the same stage 4 endo too deep bowel plus other areas, havent had follow up appointment since my lap diagnosis to discuss further treatment yet but wondered were you given the option of the gnhr injection or did they tell you thats what you must have? I dont know much about the injection tbh.

pinpops
pinpops in reply to lou840

Hey, I was told I had to have the gnhr injection if I wanted to have an excision surgery as the first lap they did was diagnostic and the endo was everywhere so they needed to reduce it to be able to get to certain areas. I’m not very happy about the injection but I wasn’t given any other option. If your in the Uk that’s probably what they will say to you too with stage 4. I have done a little research but there are a lot of horror stories out there and tbh I’ve had enough of scarying myself and I’m just Gona do it and see how I get along with it. I need the surgery as I have extreme pain during sex and it’s not ok anymore. I have endo almost everywhere so it needs to be cleared out so I can look forward and possible consider having sexual relationship and babies. I’ll update once I have the injection which has now been pushed to next week -_- scared as it is and now I have to wait a little longer.

lou840
lou840 in reply to pinpops

thanks for replying, yes same am NHS and completely understand how you are feeling. I'll have to wait and see if the doc suggests that but good to know in advance so i can ask him some questions. I hope it goes ok next week x

Thank u sorry for delay had trouble getting back on to here ,

Yeah it’s scary stuff

I’ve just been back to see the consultant after my laparoscopy in Nov

He said I need surgery , but first I need an mri to see how bad it is on my bowel

Then I need to see the bowel specliat ,

In the mean time they’ve offered me the zodelax injection which like u said look so scary ! With all the side effects ...

don’t know what to do to be honest

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