Been in constant agony since excision surgery in January, at my wits end please please help

[stewso]

Long story but will try to keep it short: I was diagnosed with endo in 2020 during a laparoscopy, my symptoms improved immensely afterwards but within a year I was in a lot of pain again so was referred back to the hospital (this time with a BSGE gynaecologist) and we decided to try surgery again. January 2023 I had the surgery, they removed over 6 deposits of endo across my pelvis as well as a large endometrioma on my ovary. They inserted a mirena IUD as a way to manage my endo going forward. When I tell you, the past year has been the most agonising of my life! Immediately I had problems with bleeding, I bled for about 3 months straight after the operation. At my follow up the gynaecologist put me on a progesterone pill (as well as keeping the mirena) which was supposed to help with the bleeding, it made it 100% worse and I was cramping as well as bleeding for months. In august I got hold of the hospital at my wits end and managed to get through to him, he put me on a different pill (Rigevidon) which actually helped and the bleeding thankfully stopped for around 3 months. Had an ultrasound to check mirena placement and all was fine. Over a month ago I started bleeding again, I’m also experiencing the most horrific pain I can’t even begin to describe.. it is like labor contractions (on a few occasions they have actually seemed like labor contradictions in the intensity and the way they last a few minutes then stop a few minutes cyclically for the entire day/night). There have been times I have contemplated going to A&E but I physically don’t think I could sit in a hospital being in this level of pain I don’t want to leave my bed.

This is ruining my life, my life has stopped I am just completely taken over by this pain which I have never felt before it’s every single day with bleeding too. I have an appointment for the hospital but it’s not until September next year, how can I go on like this til September?? my GP wrote to the hospital to chase up an appointment but I’ve heard nothing.

Please can someone tell me what is going on , in all my years suffering with endo I have never experienced this level of pain (could it be the mirena even though it’s placed correctly?) I just don’t know what to do . Im so depressed and fed up. Thank you in advance and to anyone who has read this far x

[Kieraface]

the mirena can work wonders for some people but not everyone. I had excision surgery in October and I haven’t stopped bleeding since. Currently on day 73 of this bleed so when I say I can sympathise I genuinely can. I had a chat with my specialist (lucky enough to have private medical through work) and he has recommended a full reset. I’m currently on norethisterone tablets and the nexplanon implant. He’s suggested taking them out and just using traexamic acid on really heavy period days if needed.

There is the risk the endo will come back either way, at least this way I don’t have the constant bleeding and anaemia to deal with too.

Have you spoken to someone about other options? there are some surgeries that could be done but they impact fertility so not suitable for everyone x

[Lofty1589]

It is possible it’s the Mirena even if properly placed. Mine makes me feel like I’m about to start my period constantly even though bleeding stopped a year ago.

[Moon_maiden]

Hi

I never had Mirena, but if that was me I’d ask for it to be removed if you were managing better beforehand without it. Not all suit everyone. I tried Zoladex for the full six months but wouldn’t have had anymore and wish I hadn’t kept going.

Your GP can send a message to the Gynae as urgent these days.

What painkillers are you taking?

[DarkStar85]

So sorry to hear the suffering you're going through. It makes me so nervous to have excision surgery hearing this. I would be asking to get the mirena removed to see if that helps. Really hope you find relief soon x