Post operative treatment options, help!

[Krissie25]

Hey,

Here goes my life story...

On the 10th of February I had a laparoscopy surgery to investigate pelvic pain and an ovarian cyst. I was discharged on the same day only being told I had endometriosis and it was severe. I left not knowing much about the disease at all.

Fast forward 4 weeks (and a lot of research later) I’ve just been back to see him. From the start to finish today I was told a lot of misinformation, for example; irregular periods are not caused by endo and I would need to seek medical advice else where AND the only cure is a hysterectomy... (I’m 27) both of these I know are not true. Clearly he doesn’t know much about endometriosis as a condition (he is general gynaecologist not a specialist).

The ONLY treatment option I was offered is a gnrh for temporary menopause. I have declined this for now as from my understanding it’s unlikely to do anything other than help with my pain (which luckily for me is moderate and can be managed with pain relief) should I be seeking a second opinion/see a specialist?

Any advice/experiences with treatments would be massively appreciated!

Thank you x

[Lindle]

He should now be referring you to a specialist endo centre in tertiary care - this is where severe endo must be treated. If you are in England the treatment specification is below. If you need any further info please feel free to message. x

england.nhs.uk/wp-content/u...

[Hidden]

Hi Orchid,Could you consider asking your GP for a referral to a gynaecologist with a specialism in endometriosis?

There are other options you might like to discuss with your GP and gynaecologist with specialism in endometriosis.

On the endometriosis UK site, there's a section on how to start managing endo, even during COVID. I liked that guide because it suggests a variety of hormonal treatments to consider. You might find that useful too.

[Krissie25 in reply to Hidden]

Hi,

Thank you for your reply. I have called the GP after everyone’s advice and I’ll be pushing to see a specialist. At first I wasn’t sure if this would be an option, as I had already had surgery and seen a consultant but reading on here it seems like that is a must!

I’ll definitely take a look, thanks again! X

[greenleaf1997]

Hey, it definitely sounds like you've had some misinformation and I'm really sorry you have had to go through that. I would 100% get a second opinion, even from a different gynaecologist for the time being. I'm currently trying to be referred to an endometriosis specialist but not sure how long that can take.

I had a lap on the 25th Feb with an ovarian cyst too as well as endo. Looks like I have very similar symptoms like you. They have changed my copper coil to a mirena coil which is supposed to help with endo (which is something you can look into if you're on contraception?)

thewombroom.co.uk/ - this was very helpful to me when I was first diagnosed with endo. If you want to email them, you can get a free consultation and speak with one of the ladies which I found really really helpful.

Hope this was helpful for you and you're feeling better x

[Krissie25 in reply to greenleaf1997]

Hey!

Thank you. It’s extremely frustrating isn’t it. I think that’s the best option, to try and see a specialist. Such a shame it takes so long for diagnoses and referral.

I’m sorry you’re going through this too. We all know how physically and mentally draining this illness is. They do sound very similar. I’m currently not on any contraception but thought this might of been suggested at my follow up, sadly not.

Thank you for your advice. It means a lot.

I hope you’re covering ok and getting the support you need. Xx

[Hidden in reply to Krissie25]

Hi Orchid,It is rather odd that there are some topics where no information is volunteered by GPs or others - my only wild guess is that they are waiting for the patient to ask questions so that they can respond with information relevant to them.

So, if you've not already asked your GP / other about contraception, it really is ok to bring up the topic yourself and ask for advice on hormonal treatment.