Lap

[Apatche4]

Currently recovering from lap. Found I have severe endometriosis. Cysts on both ovaries. Drained cysts as couldn’t be removed, ovaries were touching. Organs sticking together. Haven’t been able to clear it all just done what they can and suppressed with mirena coil. In agony. And not dealing with it all very well pretty gutted as can lower chances of getting pregnant. I’m really struggling. Any tips on how to cope?

[Lindle]

Was it done in a specialist endo centre?

[Apatche4 in reply to Lindle]

Day surgery unit

[Lindle in reply to Apatche4]

As soon as they found severe endo they should have treated it as a diagnostic lap and referred you on to a specialist endo centre. Where in the UK are you?

[Apatche4 in reply to Lindle]

They haven’t referred me just done what they can I haven’t even got a follow up. I’m from South east London.

[Lindle in reply to Apatche4]

Then you come under the treatment pathway for England. I should go to your GP and tell them you are now aware that severe endo must only be treated in a specialist endo centre that is working to BSGE standards (The British Society of Gynecological Endoscopy). This is required by the NICE guideline 1.4.2. The treatment is highly specialised and comes under tertiary care and not in secondary care gynaecology departments. The specification has been published by NHS England and referral is though them direct to the centre and not through the usual NHS E-referral system (previously Choose and Book).

NICE:

nice.org.uk/guidance/ng73/r...

Severe endo treatment specification:

england.nhs.uk/commissionin...

List of centres:

bsge.org.uk/centre/

[Apatche4 in reply to Lindle]

Thank you I will look into it and speak to my doctor x

[SKOLIVE in reply to Lindle]

What a great piece of advice this is!! and in fact the piece of legislation I needed myself reading this. Thank you

After NOT being referred to a BSGE centre by the consultant I was with.... I had to go to my GP after learning about this from a well informed lady on this forum.

Diagnosed in 2016 and only just discovered these centres existed- it’s going to change my life dramatically.

[Lindle in reply to SKOLIVE]

Are you on my group SKOLIVE ?

[SKOLIVE in reply to Lindle]

No I’m not- how can I view please?

[Lindle in reply to SKOLIVE]

Will send message,

[Anonendolady]

Ah sorry you were found to have endo and it was so bad. It can be a bit of a shock when first diagnosed!

Endometriomas are horrid, and can cause awful pain (I’ve had my fair share!). I’ve also had it where i had the cyst drained only...but it ‘filled up’ again soon after. Luckily I read up about them . I realised that the whole cyst should actually be removed, as much lower chance of returning, so asked my then gynae to refer me to an endo specialist to fully remove and remove any endo elsewhere (as he wasn’t a specialist himself).

Surgery recovery can be much tougher than anticipated, but it should get a little easier each day. Lots of rest and try not to do too much. Hopefully you were given decent painkillers to take home? If not, see your GP for what you need. I’ve sometimes needed stronger.

Feel free to Pm if you ever need someone just to chat to x

[Apatche4 in reply to Anonendolady]

Yeah massive shock I’d never even heard of it before. Did they refer you? What happened? I’m really active and always on the go I feel like I’m going out of my mind!! Thank you x

[Anonendolady in reply to Apatche4]

I had heard of endo but didn’t know much about it, so was also a shock to me too,!!! Yes.my gynaecologist said that things were bad and too complex for him to treat. So agreed to refer me on to a specialist when asked.

I’ve had a few lap surgeries to remove endometriomas as sadly still had more develop despite removal. Plus had lots of endo elsewhere removed. Had a good few years pain relief but a few years ago opted for a hysterectomy and ovaries removed. (Lots of reasons for this though)

Yeah, I found surgery recovery frustrating! But usually if I did too much I would know about it with pain, so tried my best to behave each time.

Recommend Lots of watching Netflix and reading etc. X

[Apatche4 in reply to Anonendolady]

I think I will ask to be referred to a specialist. Thinking back I’ve had all symptoms for years just thought it was my period because that’s what I was used too. Pain got so bad a couple of times then ended up in hospital. Eventually done a scan after a couple of years and found it.

I’m a bit worried as for a while been having shooting pains in bowel area and thought it would stop after op and hasn’t yet?

Trying the Netflix only so much tv you can watch. Deffo feel it when I over do it though x

[Anonendolady in reply to Apatche4]

Oh definitely ask for the referral, as a knowledgeable/skilled specialist could help you so much more! I regret not being diagnosed earlier, as it did end up affecting my fertility sadly and do feel seeing my specialist earlier than I did could have made a huge difference! One of my last surgeries took 5 hours to painstakingly remove the endo found!

I was the same... realised that’s actually I’d had so symptoms for at least 10years plus... it’s common for ladies to go undiagnosed this long or even longer it seems.

I had lots of weird healing pains... but recommend Seeing a medic if pain doesn’t go/gets worse or you are concerned. X

Hoping you start to feel much better soon and not so bored! Xxx

[Theendotravellercouk]

I'm going through the exact same thing. Push for a referal hun. I went in for surgery in July to have an endometrioma removed and they found my ovaries stuck together and I've endo all over my pelvis and deep in my bladder. Went for ivf, they did a scan and found two new endometriomas, sent me to hospital 6 weeks later to see how quick they are growing and now I have 7 endometriomas. My gp still didn't want to refer me so my partner came with me today and made sure that they did. You shouldn't have to suffer and you deserve to be taken seriously I know how you feel and I'm here if you need anything. Stay strong, get lots of rest and reach out to this amazing community if you need anyone x

[Apatche4 in reply to Theendotravellercouk]

Went to doctor yesterday they didn’t want to refer me told me to see the gynaecologist that I’ve been seeing. So I’m going to see her then go for the specialist after. Thank you xx