Next step?: Hi all, I have endo, have never... - Endometriosis UK

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Next step?

Lenrythe8th profile image
6 Replies

Hi all,

I have endo, have never been told a stage. I have had two laps, one in 2016 by general gynae and one Feb 2020 at BCGE Centre.

I have quite a complicated medical history. I was initially on cerazette (this stopped my bleeds) but had to stop it in late 2017 as they believed it could be aggravating another condition and causing rapid weight gain so I had a mirena inserted.

I had no problems with my initial mirena and it also stopped my bleeds. My pain was still quite bad and I had two course of 3 month zoladex pre surgery. They changed my mirena during my Feb 2020 lap.

Since then I have had cystic acne, increased pelvic pain and I am bleeding at least 2 out of every 4 weeks. I am also suffering from cyclical insomnia. My GP thinks that this may be caused by the mirena.

My question, is where do I go from here? The BCGE don't seem to want to know as they've excised the endo. I do have a gynae I see for another condition that I can consult but I am concerned I am running out of options. My body doesn't seem to be tolerating the mirena this time, yet I have been told to avoid the pill completely. I have always been told controlling my bleeds is my best chance of controlling the disease.

My aim is pain management and living a decent life but at the moment, the mirena appears to be doing neither of these.

TIA

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Lenrythe8th
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6 Replies
Moon_maiden profile image
Moon_maiden

HiYou should still be getting follow ups with the endo centre, accosting guidelines anyway. That’s no guarantee though. Can you talk to the endo nurse? Endo can come back.

Is the pain definitely gynae? It might be worth discussing with GP, don’t let them assume its endo.

Lenrythe8th profile image
Lenrythe8th in reply to Moon_maiden

I have spoken to the endo nurse and she has suggested I speak to my local gynae. They didn't even give me a proper follow up after my lap in Feb, I had a phone consultation with the endo nurse (who is fantastic) who just spoke through the very brief notes I had been given.

I am also under a gastro doctor at the moment and my doctor has done a lot of blood tests etc. I do feel I am being listened to but I am very concerned about the way that the coil is making me feel and what happens if I can't tolerate it for much longer.

Moon_maiden profile image
Moon_maiden in reply to Lenrythe8th

Check the guidelines for after op with BSGE centres.Some gynae don’t work to stages, I’ve never been told apart from deep and when hysterectomy it rectovaginal. I’ve also discovered recently there was no MDT meeting last year and there was no colorectal surgeon so still having abdominal pain and huge complaint to the hospital.

Speak to the Consultants secretary and tell them you need to speak to gynae.

Stages are 1-4 and depends on where your endo was found and the severity.Have a look at your discharge letter or speak to your gp for confirmation as they always are sent a copy.ALWAYS ASK QUESTIONS!!!.You have a few things going on so your pelvic pain might be anything.Get referred back to the gynae they can’t say there is nothing they can do when you have symptoms as it’s their job to do something perhaps push for an ultrasound/Mri.

Endo keeps returning so there is that too.

I took myself off injections to stop my period and never accepted the birth control.It’s tough but if you want children yould have to manage pain killers.

May things get more bearable for you.

Lenrythe8th profile image
Lenrythe8th in reply to

There has never been mention of a stage throughout my diagnosis. I have had recent ultrasounds and MRI's too.

I don't want children so thats not a factor for me.

in reply to Lenrythe8th

Since you don’t need children maybe you can go all out and discuss the possibility of a hysterectomy to make you comfortable and pain free...but sadly the human body being what it is and so different iv heard a few ladies say they still feel pain afterwards.

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