Endo diagnosis

[Jules789]

Hello I’m new here and just been diagnosed with endo which has come as a bit of a shock so any advice is appreciated please.

I’ve suffered from fibroids for about 8 years so my periods are quite heavy. However, at the start of the year I literally didn’t stop bleeding for 2 months and had terrible abdominal pain so booked an appointment to see the consultant. It’s absolutely awful and some days I don’t want to leave the house for fear of bleeding through my clothes.

Today, I got my mri results and I have cysts on both ovaries as well as endo. I’ve been taking the mini pill for nearly a month now but I’m still bleeding heavily with clots. Can anyone give me some advice on this condition ?

[Sunset-lady]

Hi, i think it depends on your age and what you want to happen next. There are a few options x

[Jules789 in reply to Sunset-lady]

Hi Sunset-lady, I’m past child bearing age now so I guess the next stage for me is the menopause and my consultant advised endo will settle after this. Any ideas if this is true ?

[Sunset-lady in reply to Jules789]

I think for some women endo does settle after menopause as it's estrogen driven so less hormones help. However the big question is when will you go through menopause? I'm 51 and the bleeding has got so bad I'm on zoladex to try to help it. My endo is so bad they can't do a hysterectomy.

[KittyTherapy]

Hi there,

As sunset-lady has said there are a few different treatment options (by treatments I mean to control/ manage endo as unfortunately there is no cure).

Treatments are usually either pain medication, hormonal treatments and/or surgery.

If you visit endometriosis-uk.org/ they have lots of really great information.

Have you been referred to a gynaecologist? That would usually be the next step to discuss treatment.

You can ask your GP for a referral to a BSGE centre (accredited endo centre) -

bsge.org.uk/centre/category...

Not all gynaecologists are specialists and this really matters. BSGE centres have endo specialists so are best placed to support you but I understand that there may be criteria and so they may only accept higher/more advanced stages of endo. But there's no harm in asking for a referral from your GP to explore this.

I've found this community really helpful and supportive so do ask as many questions on here as you like! x

[Jules789 in reply to KittyTherapy]

Hi KittyTherapy, thanks for your advice and useful links ! I have been referred to a gynaecologist and had an internal examination which was so painful that I bled. She recommended I take the mini pill to ease the flooding and doesn’t feel I would require surgery/hysterectomy.

I’ve only been on the mini pill for 3 weeks but have continued to bleed as I was hoping my periods would stop completely.

I will definitely speak to my GP about the BSGE centres which I wasn’t aware of. Thanks for the heads up.

I’m so grateful to be part of this community as I feel I don’t have anyone close and female to talk to about my condition who understands what I’m going through.

[KittyTherapy in reply to Jules789]

I know the feeling, despite my partner being as supportive as possible he doesn't truly understand how it impacts (because he can't possibly) so this community is really the only place that I feel truly seen and has been such a wealth of information.

Sorry I can't give much advice on the mini pill, not sure if it takes time to work? But would definitely seek specialist input if you can for a second opinion.

Sorry to give you more links! But the FAQ section on endo uk website also has lots of helpful info which may cover some of your questions around hysterectomy, menopause and treatments:

endometriosis-uk.org/faqs

x