Stage 5 Endo at age 27.

[MellMelly]

I've had stage 5 endometriosis for 5 years now, I first got diagnosed after 3 years of constant visits to the doctor who would just send me off with even more painkillers to try until 2017 when they sent me for my first laproscopy. It was successful for the first 5 months until I went for a check up scan and they told me it was back.

So in November 2019 they decided another laproscopy, again unsuccessful after recent checkups as my endometriosis is all back and my womb is completely frozen.

I'm currently cuddled up in a ball, taking 30mg codeine tablets, hot water bottle, sweating like theres no tomorrow and trying not to cry, but this pain is like no other.

With regards to fertility me and my partner have been trying for 3 years without any success and I just feel like my whole mood and personality has changed.

Does anyone else feel like we need more support network for endometriosis?

I'm a strong individual but I've felt the emotional effects of this, I'm generally willing to talk and help anyone else through this. Its life changing.

[Tallulah182 Moderator]

Hi MellMelly,

Have you had a look on the Endometriosis UK website, have a look at the link below:

endometriosis-uk.org/get-su...

There is local support groups if you need face to face support (although i know at this time these are mostly held online.)

The phone lines are another option if you want to speak to someone directly.

The forum is a great place to get support and information from other people who are going through similar things.

Best Wishes,

Louise, EndoUK moderator

[MellMelly in reply to Tallulah182]

Hey, thankyou for sending me the links, yeah this website is really good for support.

Thankyou so much.

[Moon_maiden]

If you mean more from the medical side, with you all the way.

GP has literally told me they don’t know what to do in primary care!

[E-ZEE]

I thought you had ablation surgeries ,make sure you are under treating with endo specialist who can perform excession perfectly,I am having stage 4 had surgery in last nov my symptoms is much better but i cant get rid of fatigue ,week before period and period week are still horrible.In terms of support groups yeah endometriosis Uk is good one also some on insta these are really helpful.Make sure you are getting treatment from BSGE endometriosis centre if you are UK based.

Stay strong x

[MellMelly]

Hi, yeah defo in regards to the gp and hospitals, I didnt get checked after my second surgery in november until I had to self check myself into A&E. Now I'm still waiting for my letter to be referred to a specialist again! You have to keep going back until they start to realise endo is actually very painful.

I did have ablation surgery as I have a 9cm chocolate cyst on my right side, but apparently it's already grew back to 6cm. I just think that there must be other options to this, rather than going through multiple surgeries and increasing the scar issue, which reduces the changes of pregnancy anyways.

Yes fatigue is horrible, I would definitely recommend iron tablets incase of a deficiency with blood loss around your period time, has anyone tried any supplements or vitamins that help with this?

Thanks x