Advice Please!!

[GreenQueen-99]

Hi All,

I’ve had a meeting with my gynae consultant today. After having the diagnostic 2 years ago, my periods have come back with vengeance. I’m either 10 days twice a month or nothing at all ( currently haven’t had one for 40+ days yet still getting immense pain). She scanned me and basically said that I have the type of endo which isn’t visible on scans (anyone else been told this??). She’s said there’s 3 routes to treating it, basically;

1. Referral to a pain service (Which I have agreed to)

2. Hormones; I currently have the Mirena coil but had it inserted 3 years ago, which she thinks needs to be changed. Initially I’ve refused to have another one due to how traumatic it was at the GP, but she has assured me that there’s sedative and penthrox/entonox options as she would be doing it. Or I go into the pill after removal or alongside. (I am also reluctant on the pill as was started on the pill at aged 11 and was on it for 10/12 years).

3. A second surgery; She said that initially some parts were signs of ‘early endometriosis’ and were not removed and the other fully formed parts were only removed via ablation which is not the most effective form (it was performed by a non-endo specialist in a private hospital during covid) She’s said that if I go for a second, that she will cut and remove it rather than ablation and send it to histology. Whilst in surgery my coil would also be removed and replaced.

So my question is, has anyone else had this experience? What did you choose? And how did you know the decision is right? What happened with recovery and work? I have only just qualified as a nurse 6 months ago, so a little worried about time off and recovery.

Thanks!

[nikkimatt2019]

I've chosen the op I have to wait 4 months I'm not sure what stage I have yet but I'm high risk of getting cancer if left untreated so I've chosen the op suffering alot pain tbh my hips,back,left and right side my ribs and my stomach. I think I may also have blockage because when I wee not everything comes out until have a poo then more wee comes out I'm not sure but it's all frustrating and living ur whole life with it no matter what.

[GreenQueen-99 in reply to nikkimatt2019]

Oh no! That’s awful! Sounds terrible! I’ve been told the op waiting list would be 12 months as there’s a backlog. I’m just unsure whether a 2nd one is worth it. Or to try the hormone option first!

[TheUntamed]

What scans have you had? None of them are 100% and it depends a lot on skill and what else is happening inside. When my endometrioma ruptured, they missed the fluid on ultrasound (although they have some excuse because it normally goes into Pouch of Douglas and mine was totally blocked off by adhesions). We only figured it out in the laparoscopy the week after

I’ve been told by several gynaecologists that Mirena is not sufficient to control severe endometriosis. Which makes sense - it’s low dose (even compared to desogestrel) and localised to the uterus to control periods and pregnancy. As much as I dislike the effect of the pill on my mood and body, I dislike nausea and crippling pain even more!

I’m looking at Zoladex and seeing if I can avoid surgery by following up with high dose progesterone alongside the Mirena. I don’t believe it will work though. If your pain is this bad now, i would go on the wait list for surgery. Six weeks recovery sucks, but it won’t be for a while yet. You’re more likely to get relief and avoid the disease spreading. And you can always pull out if the hormones miraculously work in the meantime.

[Heths]

I had surgery 8 years ago and was told I had grade 3 endo. It was done at a specialist centre. I agreed to a randomised post op treatment trial (options - mirena, progesterone only pill, nothing, and another option I can’t remember) I got randomised to the nothing option. The pain never totally resolved after and I was advised to get a mirena - all settled within about 8 weeks after that. About 2-3 years later it all started coming back - I did a bit of my own research - the progesterone delivered from the mirena is at a higher dose for first 2 years. I had an early mirena change and all settled again. If you are fairly young (which I’m guessing you are I would go for the 2nd surgery with new mirena at the same time. If you have to wait 4 months anyway you will be almost a year post qualified and maybe could stretch to waiting 6 months so you are a year post qualified, which might give you longer sick pay??

I’ve had 3 mirena now and have found each insertion just awful too so you really are not alone in this. I also remember the specialist endo nurse telling me the mirena could be topped up with a progesterone only pill so you could try that while you wait for your surgery.

Wishing you good luck with your decisions and onward treatment xx

[BookBimbles]

Hi

I also had a clear ultra sound scan before laparoscopy surgery found type 1 / superficial/ peritoneal lesions. It’s known the scans don’t always pick it up so the specialist centre decided not to even bother with an MRI. And I went with a laparoscopy, but that was my first (& hopefully only one).

I had the coil fitted during surgery and excision. But I’m only a month post op so can’t really say longer term outcome. I’m also being referred for specialist pelvic physiotherapy.

I think there’s no harm going on a waiting list, giving you time to read up and think about what suits you, as well allowing you to build up time with an employer, to cover sick leave.

While I was waiting I did try oral contraceptives again (like you had been on them when younger for 10+ years or so. Progesterone only didn’t suit - just ended up long frequent bleeds. I managed better on a combined pill (Yasmin) with a plan to run the packs together. But everyone is different. Info like clinical guidelines might help you decide e.g. eshre.eu/Guidelines-and-Leg...

Hope you do get some relief soon. X