Worried & fed up

[Missy30]

Hey everyone,

So I was diagnosed with Endo after a lap in Nov 2015 I was pretty lucky to fall pregnant 2 months after this and was symptom free for ages while pregnant then went on the depo after having the baby & that was horrendous I bled continuously on it, so I’ve been off that for 10 months now and only now my periods are starting back up but I’m worried about the return of endo.. or does it ever really go away anyway?! I’m having mid cycle spotting, back pain, last period was horrendous and clots galore as well as being tired, pain during sex all the classical endo sumptoms, I see the gynae in February anyway but I’m not really sure what happens next in terms of treatment etc? As he was very hesitant of even giving me a lap in the first place he didn’t think I had endo but I knew after having every test under the sun which were all clear that sometbing was up and I pushed & pushed and lo and behold he found endo.. and quite a lot too! He managed to remove most of it but didn’t touch the lot of my urethra he did say however it looked like “old endo” whatever that means, I’m just wondering what do I do next in terms of treatments? I can’t deal with this physically and emotionally again with looking after two children also does endo ever really go away after a lap or once diagnosed are we always living with endo?

Thanks ladies x

[Hidden]

There’s a lot of treatment options that you can discuss with a gynecologist. I chose the birth control way. It took me a few different pills to find what worked with my body.

When endometriosis is removed it doesn’t mean it won’t come back after excision surgery. There isn’t a whole lot of research on the disease so to me it feels like treatment is a bit limited.

All I really know is that my aunt who also had endo ended up getting a complete hysterectomy and that finally ended her pain. But everyone is different and from what I’ve heard (don’t quote me on this) is that sometimes it can even come back after a hysterectomy but I’m unsure if it was a full one or not.

[Missy30 in reply to Hidden]

Thank you for the reply. Yes I’ve also heard that a hysterectomy doesn’t sometimes help as it can still come back. I was on the depo it was horrendous I bled continuously I haven’t tried anything else, I’m a bit dubious to whack more hormones in my body when it’s clearly all over the place but I see the gynae in feb so will see what he reccomends then, it’s a pain in the bum isn’t it that’s for sure the things us ladies have to deal with! X

[Hidden in reply to Missy30]

Yes, it is terrible. Sometimes I wish I wasn’t a woman.

[Emmyeve]

We will always have it & I know women who have taken meds to suppress it and yet still grows while taking meds. The best treatment (IMO) is clean diet and healthy lifestyle. There are books available on what diet to follow for endo. Endo is an inflammatory disease and fuels from oestrogen so any foods that cause inflammation and increase oestrogen should be avoided. By following this diet my periods went from extremely heavy for 20 years with excruciating pain to super light with little pain!!! I switched back to “normal” diet & my endo flares and all symptoms returned. Other little ailments we have that are related to endo being an auto immune disease also disappeared for me when sticking to diet. Hope this helps xx

[Missy30 in reply to Emmyeve]

Thanks for the info very helpful and will definitely look into this to see if it helps, It wasn’t really explained very well to me it was just ‘oh yes you’ve got endometriosis we’ve excised it I can’t say what the chances are of it coming back so on your way’ basically! It’s interesting to hear other people stories as I don’t really if can be helped not have surgery constantly obviously if needed I would but the recovery while looking after two children would be a nightmare also I only had a cesearan a year ago so hoping for nothing else for now! Xx

[Emmyeve in reply to Missy30]

I went 7 years almost symptom free so we all experience endo differently. You might be one of the lucky ones. A lot of it can be psychological, once our mind knows we have it we can bring on symptoms ourselves. Have a healthy happy positive lifestyle and just think there are far worse conditions we could have been given in life x

[Missy30]

Yes I totally agree with that I think as I’m thinking about it all the time now I’m paying more attention and noticing the symptoms! I try to keep myself busy and with Xmas coming up my mind is occupied and totally agree with what you said about their being worse conditions, I wish you well and that you are symptom free for many years xx