Can’t work due to endometriosis and being judged for my choices about ttc

[EndometriosisHell]

I have severe endometriosis and it affects me daily . I’m also ttc #3 (1 and 2 were ivf and we still have some frozen embryos)

I had to give up work a year ago as was off constantly anyway and feeling so dreadful. I have other issues too so applied for pip.

ive had comments off a couple of people when they’ve asked why I don’t work anymore that ‘surely it can’t be that bad’ or their cousins friends sister has Endo and she can work etc etc ……so I feel judged.

I saw a new gynae dr recently who seemed frustrated I want to ttc ?? Saying I should think about a mirena or even a hysterectomy! Pushing as to why I’m so against treatment- I’m not but I want to pursue a line of treatment to calm the Endo so I can do a FET.

I get the impression that people think I should give up and get back to work .

I should add I’m not against that in the future but I want to ttc then afterwards I can have treatment/ surgery and see if I feel better and we’ll enough to start working again

Genuine question, how will you be able to care for a new baby and dc1 & dc2 if you're not able to work?

I imagine people are concerned that if you can’t cope with a job which is perhaps max 50hrs a week they wonder how you’ll cope with a third child. I’m not commenting either way because I assume you’ve given it a lot of thought and are making the right choice for you and the children you already have.

If you're well enough to have a baby you are well enough to work.

After 1 and 2 I was much better (I think where bf stopped my periods and pregnancy changes things temporarily ?) once they came back it was horrendous again so i do manage the first year ok. I would be able to have other treatment too as I wouldn’t be ttc anymore if I had 3.

In most other cases yes I’d see your point but if I’m pregnant and then bf after it gives me immense relief from symptoms but currently I’m totally incapacitated by the endometriosis .

A third pregnancy would relieve your symptoms temporarily. What would be your plan after that? To be able to work?

My choices feel like

-ttc #3 and prolong issues with endo and getting back to work or

-give up ttc , have LAC as treatment or surgery (hysterectomy) that means I would then be able to get back to feeling better sooner (but that’s not what I want as it’s making me so upset to feel judged even by the dr she said I’m suffering when I don’t have to and should accept a mirena or hysterectomy but that’s not suitable treatment if ttc!)

Yes as I could then accept the treatments / surgery being offered as they are either LAC (mirena) or hysterectomy as a last resort

But then you still have to care for the child once you’ve stopped BF? Won’t the symptoms return then?

I’m 36 so I may not even get pregnant again but we wanted to at least try with the FET procedures and either it works and I delay treatment or it doesn’t and then I’d have treatment then

Then just stop telling people why you can’t work. If you tell people it invites judgement. The doctor is bound to be frustrated that you won’t accept treatment, but it’s your body and your life so just so what you want.

I would be able to have a mirena after birth (I would need a c section so apparently they can put one in while it’s being done and it lasts 5 years) at some point if I wanted I could have a hysterectomy

People keep asking ! If I try to avoid the questions they persevere , I didn’t want to lie but now I feel like maybe I should as I feel so judged .

The drs just keep saying there’s nothing they can do unless I opt for LAC or the option of hysterectomy and they will keep trying to treat any symptoms (severe anaemia) but ultimately those are the only things that will help

Stuck in autoimmune hell. It's horrendous especially when you have to have such extreme surgery to improve your health.
Really feel for you.

I personally don't think you should be eligible for pip if you're choosing to not receive treatment.

It’s for other conditions too that I do have treatments for, endometriosis is just one reason . I have painkillers and have to have treatment for severe anaemia too which i obviously haven’t refused

How are you caring for your current children if you are so incapacitated? Is it not worth it for them to get the treatment and be well for them

I think as long as you and your DP are in agreement everyone else can take a long walk with their opinions

My friend was told by her doctor the only way to feel week with endo was to get treatment or get pregnant! Since being pregnant also relieves the symptoms… so she had surgery and they said either go on birth control or get pregnant or you’ll need surgery again soon!
so you can feel well while pregnant and breastfeeding with it.

One is at full time school and my youngest at nursery 4 days a week, dh does drop off and pick ups as he works from home some days and can fit his hours round the dc , when hes at work weekends etc we just have quiet days and do calm activities etc so it’s manageable

I found pregnancy such a massive relief and bf afterwards as long as my periods hadn’t returned i felt so much better it’s definitely true it helps. As soon as my periods were back though it was awful again

When you say you’re ttc, what are you actually doing? Are you actively having fertility treatment again? Surly the doctors you’re paying are supportive?

Ignorance personified

Im seen by nhs gynae department alongside private fertility appts . We’ve been trying but I didn’t expect it to work without doing FETs with our remaining embryos so we are going to go ahead with that