I've just been diagnosed with Endometriosis and have had a laparoscopy but what do I do now?

[Hecate21]

It's been a month since I've had a laparoscopy which confirmed I have endometriosis but I'm not sure what next step I should take. My follow up appointment is a couple of weeks away but so far the pain hasn't changed. If anything it feels more painful.

[TennisAM]

Hi, how did they remove the endometriosis? Did they excise it? It shouldn't be more painful after the operation but healing and recovery can cause pain. It's only been a month which means you won't be fully recovered.

[Hecate21 in reply to TennisAM]

Hello,I suppose they followed standard procedure and was told they removed it, however I was quite ill post-surgery and so they couldn't really tell me what they found and why discharge letter wasn't very helpful either. I'm having my follow up appointment on the 29th and will probably know more then.

The thing that's concerning me is that I'm on my second period since the op and the pain is just as bad if not worse and my pre-period pains start at least a week or two in advance =/

[TennisAM in reply to Hecate21]

I'm sorry to hear that. If it was general gynaecology that did it they normally use ablation which burns the endometriosis. If there's endometriosis underneath this isn't treated at all, it just burns the top. If it was an endometriosis specialist they will excise the endometriosis so they cut it out. Hope the appointment helps. Worth asking which method they used and where they looked for endometriosis.

If you want info regarding natural things that work (I have stage IV endo and they work for me) Happy to share my research if you send me a private message

[Moon_maiden]

HiLove the username 🙂

Was it just a diagnostic lap or treatment as well?

You should have had what happened on the discharge letter, you can also request a copy of your medical notes free of charge.

Recovery is different for everyone and does depend on what they did.

Keep a diary of symptoms and questions in preparation for the follow up.

Hope you do feel better soon 🙂

[Hecate21 in reply to Moon_maiden]

Hi, thank you

It was supposed to be an investigation but they ended up finding endo and removed it then and there. I was too ill post-surgery for them to explain how what happened and my discharge letter wasn't very helpful so I'm waiting for my follow up appointment on the 29th to be told the full details.I've been keeping a 'period diary' to track any changes and symptoms

[Moon_maiden in reply to Hecate21]

Have you spoken to GP about the pain, useful to check no uti just in case. You could request a copy of your hospital notes but that can take 28 days.

Symptom diary will be helpful, also make a note of questions you think of.

Is the appointment face to face?

[LWat]

Hiya in addition to finding out information about whether they excised any during the lap, I'd also give the book Private Parts by Eleanor Thom a read. I really wish I'd been given it to read after my diagnosis as, like you, I was just given my diagnosis and then left to it. Hope you get some help soon! X

[Hecate21 in reply to LWat]

Thank you, I've ordered myself a copy of the book. It looks like a good read x