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Original poster

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

77 replies

EndometriosisHell · 04/10/2023 17:07

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 .

OP posts:
SleepingStandingUp · 04/10/2023 17:38

EndometriosisHell · 04/10/2023 17:20

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

Objectively, if yo were my loved one, I'd be concerned that you're currently incapacitated by an illness which is rendering you unable or less adequately able to care for your existing children and rather than be satisfied with what you have and pursue treatment to enable you to look after them properly, you're delaying so you can TTC in the future which will take how long in the hope that pregnancy make things better for a year or so. Then you'll have THREE children to care for whilst you are again rendered incapacitated whilst you await the treatment that will finally give you your life back. I'd be saying it's unfair on your existing kids to hold off treatment that will make your life together better.

Re you getting PIP, there is a system and if you qualify it's not for me to question.

wellywacker · 04/10/2023 17:38

To be honest I have endo and a massive cyst in pain all the time
I have to work I have no choice
I'm sorry but if you can have a baby you can work

Original poster
EndometriosisHell · 04/10/2023 17:40

SleepingStandingUp · 04/10/2023 17:38

Objectively, if yo were my loved one, I'd be concerned that you're currently incapacitated by an illness which is rendering you unable or less adequately able to care for your existing children and rather than be satisfied with what you have and pursue treatment to enable you to look after them properly, you're delaying so you can TTC in the future which will take how long in the hope that pregnancy make things better for a year or so. Then you'll have THREE children to care for whilst you are again rendered incapacitated whilst you await the treatment that will finally give you your life back. I'd be saying it's unfair on your existing kids to hold off treatment that will make your life together better.

Re you getting PIP, there is a system and if you qualify it's not for me to question.

Show quote history

If I did have another I could have treatment (mirena) immediately after birth as they’d place it during c section then it lasts for 5 years and I’d also be able to consider the offer of hysterectomy as wouldn’t be ttc again

OP posts:
Houseplanter · 04/10/2023 17:42

If I really wanted a third child I'd give myself a 6 month window to conceive, and if unsuccessful I'd take all the treatment I could get for the sake of my health and my family

And I wouldn't claim pip.

Itisyourturntowashthebath · 04/10/2023 17:43

Presumably you could have a mirena fitted in the next couple of weeks, then you could care for your existing children, work and feel a lot better.

Janieforever · 04/10/2023 17:47

How long will you try to conceive op? This can’t be easy for your existing children or your husband if it’s so bad you can’t work?

Original poster
EndometriosisHell · 04/10/2023 17:48

Houseplanter · 04/10/2023 17:42

If I really wanted a third child I'd give myself a 6 month window to conceive, and if unsuccessful I'd take all the treatment I could get for the sake of my health and my family

And I wouldn't claim pip.

We decided we would try till I’m 38 (so 2 more years)

The pip is for other conditions too so it’s due to multiple things not just endo

OP posts:
ToastEating · 04/10/2023 17:49

I think this thread demonstrates the ignorance surrounding how incapacitating endo is. No job is going to allow me what? 3 days off per month per period and my cycle is 24 days. I am attached to a TENs machine like I am in labour. Also add in 1-2 days ovulation pain, daily leg pain, back pain and the best for last, chronic fatigue. But I still managed to raise 2 children whist not working. Dh financially supported us and on days when I was very bad he would work from home before working from home became a thing.

Children just learn that sometimes Mummy is on the sofa for a bit. My youngest child is 17, at no point has their upbringing been anything but with a hands on Mum, you know you can parent from a sofa, you are physically present in the room they are in with all their toys. God alone knows what you would think of my friend who has fibro and uses a wheelchair when out. At home she supports herself on furniture to aid her, has a high chair in the kitchen for making coffee or cooking. Her child learned early on to be able to carry their food to the table.

"Treatment" for endo is no walk in the park either. Just pumping our bodies full of hormones, the coil being one of them. I felt so much better whilst pregnant too OP. I get it. I would stop explaining things to them. Just say it is my body and my choice.

Original poster
EndometriosisHell · 04/10/2023 17:52

ToastEating · 04/10/2023 17:49

I think this thread demonstrates the ignorance surrounding how incapacitating endo is. No job is going to allow me what? 3 days off per month per period and my cycle is 24 days. I am attached to a TENs machine like I am in labour. Also add in 1-2 days ovulation pain, daily leg pain, back pain and the best for last, chronic fatigue. But I still managed to raise 2 children whist not working. Dh financially supported us and on days when I was very bad he would work from home before working from home became a thing.

Children just learn that sometimes Mummy is on the sofa for a bit. My youngest child is 17, at no point has their upbringing been anything but with a hands on Mum, you know you can parent from a sofa, you are physically present in the room they are in with all their toys. God alone knows what you would think of my friend who has fibro and uses a wheelchair when out. At home she supports herself on furniture to aid her, has a high chair in the kitchen for making coffee or cooking. Her child learned early on to be able to carry their food to the table.

"Treatment" for endo is no walk in the park either. Just pumping our bodies full of hormones, the coil being one of them. I felt so much better whilst pregnant too OP. I get it. I would stop explaining things to them. Just say it is my body and my choice.

It’s awful isn’t it, one of my biggest problems has been fainting (due to I think a combination of pain and anaemia but I also have something called PoTs and it’s made it so much worse) I was at one point trying to work but exhausting myself and fainting multiple times a day !! It’s better than it was now I’m not working but I do get bad days when I have my period

OP posts:
Worriedmum159 · 04/10/2023 17:57

EndometriosisHell · 04/10/2023 17:52

It’s awful isn’t it, one of my biggest problems has been fainting (due to I think a combination of pain and anaemia but I also have something called PoTs and it’s made it so much worse) I was at one point trying to work but exhausting myself and fainting multiple times a day !! It’s better than it was now I’m not working but I do get bad days when I have my period

Show quote history

I have a friend who has PoTs and narcolepsy. He’s not allowed to look after his children by himself.

Treeinthesky · 04/10/2023 17:57

Don't forget you don't get benefits for a 3rd baby if you do claim other benefits other than pip and child benefit. I do hear it helps with pain having a pregnancy. It's your decision love. Fingers crossed it works in your favour. X

Itisyourturntowashthebath · 04/10/2023 17:59

Whatever decision you make, please put your existing children first.

ThirtyThrillionThreeTrees · 04/10/2023 18:01

Mixed views on this one. I have endo and when it was at it's worst, I could barely mind myself let alone 2 kids so completely understand why you would give up work and concentrate all of the energy you have on the two children.

On the other hand, you have been through IVF which isn't each have two fantastic children and you are still putting yourself through daily agony rather than trying to get as much pain relief as possible to have the best quality of life for yourself now. That, I don't understand but fully respect it's your choice completely, I'm not criticising you, just confused.

When I was first treated gyn had the conversation about possible hysterectomy being required, signed the consent form etc - I just needed the pain to stop or at least reduce. I would have done anything that would help, literally anything- maybe that's why people don't understand. Maybe they are more concerned than critical.

Original poster
EndometriosisHell · 04/10/2023 18:01

Worriedmum159 · 04/10/2023 17:57

I have a friend who has PoTs and narcolepsy. He’s not allowed to look after his children by himself.

Show quote history

I’ve never been told I can’t be alone with my dc ? Maybe it’s different for narcolepsy as well?

OP posts:
Gazelda · 04/10/2023 18:08

If it's a decision you and DH are in agreement on, then just ignore everyone else.

Having said that, they're entitled to their opinion. But don't have the right to hurt you with their judgment.

Marchmount · 04/10/2023 18:14

You clearly just don’t want to listen to anyone who suggests that you’re being utterly selfish by rejecting treatment which would improve the quality of your existing children’s lives so that you can spend the next couple of years pursuing your dream of a third.

Yes your doc probably does get exasperated by patients who waste their time by ignoring medical advice but you want your 3rd child regardless of the implications on anyone else (including your poor first two children) so crack on.

mynameiscalypso · 04/10/2023 18:17

My concern would be what happens if the mirena doesn't help. A couple of my friends have severe endo and they never found that the coil did anything to help.

Overthebow · 04/10/2023 18:22

If you’re going to multiple nhs appointments, A&e etc, claiming benefits for not working, moaning to people about it yet refusing treatment then I can see their point tbh. However if you’re just getting on with it quietly and financing yourself then not sure what people’s issue is.

Emotionallyoverwhelmed · 04/10/2023 18:22

People can be very judgy about 3rd children these days, and have always been judgy about women's health conditions and benefits. I would stop telling people unless necessary (eg. Gyno consultant) and then when you do need to stand by your own decisions.
If things go your way, you'll have a 3rd baby, then get endo treatment that helps you with your symptoms, or wait a bit and it should all be over once you've been through the menopause, and you'll still have a good decade or two left of working life to have a whole career, and possibly pay more tax than the people judging you.

Original poster
EndometriosisHell · 04/10/2023 18:24

Overthebow · 04/10/2023 18:22

If you’re going to multiple nhs appointments, A&e etc, claiming benefits for not working, moaning to people about it yet refusing treatment then I can see their point tbh. However if you’re just getting on with it quietly and financing yourself then not sure what people’s issue is.

Multiple nhs appts yes but not a and e

PIP but not other benefits as dh works

I don’t tend to tell people but they ask and I haven’t lied

OP posts:
strawberry2017 · 04/10/2023 18:27

I can't help but feel sorry for your husband. He has a lot of extra pressure on his shoulders. He has to do all the running round after the kids despite you not working because of your medical condition, he is the only one earning and now you want to add another baby to the mix.
You have 2 children you don't need another you just want one. However the ones you have aren't getting the best or you as it is.
Honest opinion is you need to get the treatment and give the children you already have the best mum they can have.

Emotionallyoverwhelmed · 04/10/2023 18:29

Endometriosis is a condition which doesn't have a clear treatment though. Surgery helps some people, makes others worse. Hormonal treatments help some people. Have no effect on others or can make things worse. For your body having a baby might be the best medicine there is, as it gives you approx. 2 years of minimal symptoms, and you're doing the important (but totally under appreciated) job of raising the next generation. Anyone who is judging you is ignorant of your health conditions, mean spirited and misogynistic. Ignore them and do what's right for you and your family

Chewbecca · 04/10/2023 18:32

It's noone's business except for your and your DH's but I think it IS easy to see why people might raise an eyebrow - looking after a baby / multiple young children is pretty hard work, many would think harder than many jobs.

Shadyboots23 · 04/10/2023 18:32

ToastEating · 04/10/2023 17:49

I think this thread demonstrates the ignorance surrounding how incapacitating endo is. No job is going to allow me what? 3 days off per month per period and my cycle is 24 days. I am attached to a TENs machine like I am in labour. Also add in 1-2 days ovulation pain, daily leg pain, back pain and the best for last, chronic fatigue. But I still managed to raise 2 children whist not working. Dh financially supported us and on days when I was very bad he would work from home before working from home became a thing.

Children just learn that sometimes Mummy is on the sofa for a bit. My youngest child is 17, at no point has their upbringing been anything but with a hands on Mum, you know you can parent from a sofa, you are physically present in the room they are in with all their toys. God alone knows what you would think of my friend who has fibro and uses a wheelchair when out. At home she supports herself on furniture to aid her, has a high chair in the kitchen for making coffee or cooking. Her child learned early on to be able to carry their food to the table.

"Treatment" for endo is no walk in the park either. Just pumping our bodies full of hormones, the coil being one of them. I felt so much better whilst pregnant too OP. I get it. I would stop explaining things to them. Just say it is my body and my choice.

I couldn't afford not to work, I'm single
Waiting for a diagnosis of endo but I'm full of chocolate cysts and my ovaries are kissing due to what looks like scar tissue
2 months ago I had to ring 999 so I do get how debilitating it is
Also have hashimotos, neutropenic, back pain from previous spinal surgery... I don't get PIP so I have to work FT

Alargeoneplease89 · 04/10/2023 18:35

Honestly every health condition gets this reaction. You could have diabetes, cancer, no arms or legs and people just know "someone" who can work with that condition or don't understand that health conditions affect everyone differently... unfortunately don't take it personally