Just been diagnosed with Endometriosis. What now?

[Blue_Dolphin]

Hi all,

I’ve just been given a diagnosis of mild endometriosis after a laparoscopy but haven’t really been told anything else. I have an appointment with my gynaecologist next week and was just wondering if anyone has any advice for important questions I should ask or general advice on dealing with the diagnosis. Although my endometriosis is only mild, I experience pain during sex (to the point I avoid it) along with bleeding. I also get severely painful period cramps.

I was planning to ask about pain management but looking on the internet it just seems to be ibuprofen suggested? I’m already on the implant and that doesn’t overly help anything (although the dr thinks it may have slowed any progression). I was also planning to ask where the endometriosis was found as I’ve read the location can determine whether things like fertility are affected. Is there anything else that I should ask?

Also, if anyone has any advice, I’m a bit worried about the pain during sex as I’m worried this will affect future relationships.

Thanks.

[Christin_a]

Hello

So a couple of things based on what you've said. Ibuprofen is definitely not a suggested pain med for endo. Yes it can work if you have mild pain but endo generally causes alot of pain so if you are finding you pain isn't being managed by whatever you are being prescribed at the moment definitely ask about their suggestions.

I'd ask where was it found? How was it removed? Is the implant the right choice now that you have a diagnosis of endo, so does another option need to be looked at? What do they recommend for the painful sex, what are the options with this.

[Blue_Dolphin in reply to Christin_a]

Thank you for your advice and explanation. I’ll definitely bring up all your suggested queries. I’ve been reading about it online and it’s all a lot to take in at the moment so thank you for clarifying for me!

[Linley]

Agree with Christin_a on pain relieve -you need something to dampen down the Endo like progesterone based pill-that's only my opinion. What implant have you got?

[Blue_Dolphin in reply to Linley]

I’ve got Nexplanon which does release progesterone but I’ll bring it up with my dr if I’d be better with a pill

[Linley in reply to Blue_Dolphin]

Yes indeed that is a progesterone based contraceptive perhaps its not enough to dampen the Endo down. Good Luck in finding the right option for you and let us all know how you get on

[Dakrav]

Hey Dolphin, I think your Endo is far from mild. I think you need to ask them in what places they found the Endo. Merina IUD works for some. It has mixed reviews because of different body types. Well it worked well for me. Go on Nancy Nook endometriosis education on Facebook. You will learn a lot. And if you want, you can join Extrapelvicnotrareendo support group.

[Blue_Dolphin in reply to Dakrav]

Hi. Thank you for your advice. I’ll make sure to ask that and I’ll look into the facebook pages and the IUD.

[Dakrav]

On Facebook too

[Dakrav]

If you can, keep copies of the report. That will be very important for you.

[Blue_Dolphin in reply to Dakrav]

Thanks. I’ll try to do that if I can. Can I ask why it’s particularly important?

[Dakrav in reply to Blue_Dolphin]

It’s akways best to keep copies of repot just Incase you change doctors ( Endo specialists that you will find on Nancy nook and the support group) or if they have not fully rightfully given the details of diagnosis. There are so many reasons. Kindly do check the Facebook as it will open your mind to a vast knowledge of the disease.

[Blue_Dolphin in reply to Dakrav]

Ok thanks for letting me know, Wouldn’t have thought to ask for that otherwise!

[Dakrav]

Report*

[StefaniaJW]

[This post has been edited in line with Endometriosis UK's code of conduct]

I bet the laparoscopy was performed either to diagnose endo or for other purposes and given your symptoms and the diagnosis (mild endometriosis), it sounds to be like the surgeon was not an endometriosis expert given that the symptoms you describe qualify for severe endometriosis.

Your best option right now is to get excision surgery with an experienced endometriosis excision surgeon.

[EndoJaz]

Keep a symptom diary to take along too x