What now?

[HelenESR]

I had my laparoscopy in Decmeber where they removed endo from my ovary and bladder, they confirmed it was stage 2 and that he had removed everything he found. I also had a mirena coil fitted.

It's now been 7 months and my pain is the same if not worse. I've stopped bleeding mostly which is good but I'm now in pain every 2/3 days instead of for 2 weeks out of the month. The cramps are unbearable, the headaches are awful and I can't stop crying. I've got awful pains when I stretch again and I'm always bloated!

I don't know what to do! Do I give it a bit longer to see if it improves? What are my options if this hasn't worked? I'm only 24 and due to start a teaching job the end of this month. I'm so tired of it all; what should I do?

[annieorrell]

Is it worth having your coil removed? I hated mine and just bled continuously and far more heavily than I ever had. It seems they are either brilliant or awful.

[HelenESR in reply to annieorrell]

I'm thinking of asking to be referred again to see about getting it removed and other options! But when I last spoke to him this seemed like the easiest option for my age

[Bubblepoppy]

Hi I had my lap in Dec too, endo found and removed, and have all the pains back I won't go into it I'll be here all day, my Dr is re-referring me soon as he can, this time I'm asking for a specialist in endometriosis, I'm ringing tomorrow just to remind him again as I have new symptoms 🙄 hope your sorted out soon xx

[HelenESR in reply to Bubblepoppy]

Ye I'm thinking of asking to get referred again.. just frustrating when I was hoping this would solve all my problems for a few years! Hope you get referred quickly and sorted! Here if you need to talk xxx

[Bubblepoppy in reply to HelenESR]

I thought that I'd be fine for a couple of years at least but it was only a month if that, same, here if you need to talk too xx

[DAML8]

Hi, i had excision surgery in Feb this year and my pains returned within weeks. I told my Consultant during my post op phone appointment that the pains are worse than before, i have bad headaches, uncontrollable crying, no appetite and not sleeping etc. He didn’t really seem to care. He said the endo can’t grow back so quickly and wasn’t even willing to investigate further. He said it must be phantom pains and i just need to learn to live with it!

I’m absolutely gutted, the pain is unbearable to the point where it makes me vomit.

I’ve had 6 operations to remove endo, a hysterectomy too and every time the pain returns almost immediately and every time the dr’s say it can’t possibly be endo but when they open me up i am always riddled with it!

So I can’t understand why he wont help or listen to me!

[HelenESR in reply to DAML8]

I'm so sorry that you're suffering so much still! That's what I'm worried about, I've only had the one surgery and he said it was all removed and I didn't think it could grow back so quick! Scared of needing another surgery and being covered in endo again!

[DAML8 in reply to HelenESR]

Its awful how much we all have to suffer isn’t it. I can’t even remember the last pain-free day I had it’s been so long. I was always scared of needing more surgery but now i’m scared because they’ve said they wont operate anymore and I’ve just got to learn to live with it. I was so insulted when he tried to say it was phantom pain too, i felt so stupid! I don’t understand how they can just give up on helping someone. Im 33 and can’t continue in this much pain for the rest of my life x

[HelenESR in reply to DAML8]

I think that's what I'm afraid if, for 10 years my GP told me I was imagining it or just had a low pain threshold and I'm scared of the gynaecologist saying the same thing now. But its been 7 month and I don't go more than 3 days without pain!

Im so sorry they're not doing anything else to help you, have you been seeing an endo specialist? X

[DAML8 in reply to HelenESR]

It’s horrible isn’t it! I’ve been on oramorph for the last 5 years and even that doesn’t stop the pain.

Yes, he’s an endo specialist and I waited over a year to see him and i felt positive for a change and i was so convinced he’d be able to help me which is why I’m so shocked he’s just given up on me so quickly and easily x

[HelenESR in reply to DAML8]

I hope you find a consultant to help you! Fingers crossed we both get sorted.. thank you for letting me rant aha it can be a bit overwhelming x

[DAML8 in reply to HelenESR]

I feel like I’ve done all the ranting...sorry!

Yes it’s all very overwhelming and confusing.

I wish you luck in getting sorted and also with your new teaching job xx

[ailis95]

I don’t have any advice but can really sympathise with you. I had my first laparoscopy in February and naively thought this was the beginning of finally getting some help. Post op phone call advised there was a small amount of endo and a simple cyst in my left ovary but not really anything to worry about - her advice was to consider starting a family. I’d already said I didn’t want to start a family for another few years (currently 24)!

I really hope things get better for you xx

[HelenESR in reply to ailis95]

Its so frustrating, I'm 24 aswell and they stress you out that if you don't try to have a family now, when you're ready the endo will have come back and you'll struggle.

It's all so awful, maybe I was being a bit naive but I thought I'd be pain free now! It's horrible what we go through x