Endometriosis help

[Miss_smidge]

Hi all I’m new here.

My name is Ellie and I was diagnosed with endometriosis June 2021. Since my operation I have had no follow up support or anything. After six months my pain came back and now my flare ups completely take it out of me, (They have been lasting a good couple of weeks) I currently take Zapian for pain management but they make me feel awful so I tried CBD oil but that only helps on a good day. I’m on 20 and I feel like I can’t live my life. I’m in constant pain and my doctors just don’t care.

My partner and I are trying to convince as doctors have been telling me that they don’t know my chances for trying to convince. We have a fertility appointment in February 23 so hopefully we can get help from there.

I don’t know anyone that has endometriosis so I feel like I can’t talk to none on about it as they just don’t understand

[Starry1977]

hi. I’m sorry you’ve had no follow up support. I would get your gp to refer you back to gyne. There may be more endo that needs removing. While that’s happening maybe ask for ultrasound or mri to see if there can be anything seen. Good luck,

[Lindle]

Do you have a discharge note saying what was found (where and how severe) and whether it was treated as this affects who should be treating you?

[Miss_smidge in reply to Lindle]

All it says in my discharge letter that they removed a cyst from my right ovary and found and removed the endometriosis (Doesn’t say how severe it is)

[PaintToughTed]

I’m so sorry for what you going through.

This might be odd advice and you might be doing it already, but talk about your condition with the people around you, friends, family work colleagues etc. Once I was diagnosed and started sharing that with people I knew I was surprised by how many people have turned out to have it too - I shouldn’t have - it affects 1 in 10 women. In retrospect what was weird was that I hadn’t known about them all until I was sharing that I had it.

Hopefully talking about it and maybe finding people that you know or people that they know have it might help you feel less isolated with this.

I guess one thing I should add as well, and given what we know about how long it takes to get diagnosed, was that lots of these women were in their 30s and over - so it might be friends mum’s, aunts, older friends etc.

Best of luck with the appointment in Feb x

[lover0424]

hi I have endometriosis your never alone ! I recommend IVF for having a baby I had both my kids through in vitro fertilization i’ve had three laparoscopy‘s over the years and possibly having one in the beginning of next year another surgery to have it removed again !