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 .

Sorry I don't understand how you think you could cope with a third child with severe anaemia and bad enough to be claiming PIP, so presumably have difficulties with daily living activities, mobilising etc ?

As a person who also suffered horrifically with endometriosis and have had multiple surgeries I would be on the side of the doctor with this.
You do not know for certain that pregnancy will reduce your symptoms. It did for one of my pregnancies but for the other my symptoms increased horrifically immediately afterwards.
I still have to work and did work nights while I had young children after caring for them all day. If you can't work even part-time then you aren't fit to look after 2 DCs and shouldn't be considering a 3rd.

OP you don't have to defend yourself and I would ignore the judgemental comments.

I had endometriosis and adenomyosis and living with chronic pain, flooding and so on was horrendous. The adeno also formed a huge ball of tissue the size of a tennis ball on top of my uterus and it was pressing on other organs.

In the end I had to have a hysterectomy. It was the only thing that worked to relieve the pain and stop the dysfunctional bleeding. Before that I was unable to work for months (I haemorrhaged in the office toilets once and they had to call an ambulance...)

As you know endometriosis often makes it harder to conceive so I think you are right to complete your family while you still can, then seek long term treatment for your issues after that.

People who don't have the condition don't understand how hard it is to deal with and how much it affects daily life.

Please don't expect that a Mirena will miraculously help your endo symptoms. Mine barely made any difference whatsoever. On a waiting list for a hysterectomy now and had to fight to get that given that I'm only 37, although unable to conceive or carry a baby due to my condition.

Sorry OP, I think many people commenting do not understand Endo (it’s hard to unless you experience it yourself), I have suffered for years and am currently waiting to be referred for a hysterectomy because it’s taking over my life, I’m constantly in pain and often bleeding, I am older and have done with having babies but I am a carer for a disabled child/teen and caring for her can often be tough when I have a flair up. The times I have felt most healthy have been when I’m pregnancy and my periods have stopped so I totally understand that you feel looking after a newborn will be ok compared to working (because whilst breast feeding your endo won’t effect you as much).

Sadly people will always judge but really it’s none of their business.

Unfortunately as its NHS they will think..ah you've had 2 babies now so it's down this pathway now.

Also quoting myself here but a hysterectomy still isn't guaranteed to 'cure' endo or relieve you of your symptoms, it's quite common for it to come back even afterwards

I have severe Endo and had to give up on having a second DC after a number of surgeries. I couldn't keep working with the pain and was struggling to parent my active toddler.

I have sympathy for you, I really do, but you're one of the lucky ones you have two healthy DCs. It feels a shame to be in pain when you could manage it through contraception and be enjoying their childhood.

I think people judge no matter what. I have different health issues to you and I get judgement and even gaslighting about it.
Do what is right for you, it is nobody else’s business. In the future you want to look back and know you made the decisions that were right for you, and not regret your choices because you allowed other peoples opinions and judgements to influence you.

@Shadyboots23 you have my complete sympathies. It is fucking hell on earth and trying to do it with no support must be horrific. But the OP is supported financially by her husband so she has the choice not to work. If you had that option of being financially supported you know you would stop working.

Mine never got as bad as you describe. I had chocolate cysts, all meds, chemical menopause in my late 20s, surgery and I fall into the some women whose endo doesn't fully respond to all treatments they threw at it. Pregnancy was the next step just because it was a case of maybe now or never following the surgery and seeing what was going on inside. I was incredibly lucky that I got pregnant. Huge relief from symptoms but that isn't the case for everyone and pregnancy was painful due to all the scar tissue not being able to stretch. I worked through all of the above because I had to.

Dh then got a new job and negotiated a higher salary which covered my contribution to the pot after paying out childcare. I worked part time at that point but the pain was back. Giving up work made an incredible impact on my health. On bad days I no longer had to take prescription paid meds and just suck it up, I could stop, sit down and have a quiet day with my son at home. It was life changing and so I never returned to work. I haven't worked now for almost 20 years.

Multiple NHS appointments, PIP, reduced quality of life for your existing kids, reliance on your DH for a lot of things when you could have treatment, but you WANT another child. I think you're incredibly selfish, refusing treatment to the point of being unable to work, put your kids first.

Please don't think an hysterectomy will get rid of endometriosis.
I started suffering after PID.
( l had one daughter then age 1).
I wanted another 2nd child.. l had PCOS.. had a laparotomy where all my internal organs were stuck together.. womb/ bowels/ bladder/ tubes/ colon etc..major open surgery.. separated them ..cleaned / cut and put back.
But it didn't work. Was only after an ectopic that my gyno cleaned my tubes and stimulated my ovaries and 8 years later a miracle happened and my 2nd daughter was born. Two years later l had total hysterectomy but l have endometriosis/ adhesions now on my bowels/ bladder/ intestines/ liver/ colon/ vagina.. I'm crippled with pain.
My ex husband helped with my daughter as did my Mum and sisters and friends. My sister even helped breast feed her.
She is now 30 and I'm still disabled with it all. It's deliberating and unless you suffer no one realises.
I couldn't work with it..l was cutting the middle out of pampers to use as sanitary pads.. by time I'd walked to school n back ( 20 mins) blood was running down my leg into my shoes.
There is no cure..
I couldn't have gone back to work.

I'm not sure how that can ever be said politely

If you can't work, you can't work. I'm struggling to understand why you're so intent on having three children though? There are lots of very obvious reasons not to.

Have to say I agree with this. I too had to give up ttc number 2 after 9 months of trying, the endo pain was just too unbearable . I don’t know how you could face another two years of it. Maybe be happy with the children you’ve got and get treatment asap for their sake.

This 100%
There are some astonishingly ignorant and judgy comments on this thread.

I hope your health improves and you have what you desire.

I'm a cautious person and also think of what I can manage in life. In your situation I wouldn't have another child but I'm not walking in your shoes or experiencing your pain. I probably don't have the mental strength that you have either.
Also as we know sadly some relationships don't work out so I would also factor that in my decision. I know I would be too overwhelmed with three children and would be conscious requesting additional support if needed knowing that I made the decision to have another child whilst suffering with long term debilitating health conditions.

Also if my household fell into financial difficulty for whatever reason and we were struggling I would find that another pressure that my partner would be left to deal with as I couldn't work. I would feel uncomfortable with this.

What’s misogynistic about the comments people have made?
The OP clearly has significant disabilities which she says prevent her from working. Her DH seems to do lots of the childcare workload currently. She is refusing to have treatment that may well improve her quality of life and that of her family but she’s refusing because she wants a third child.
This is a lifestyle choice. Claiming that pregnancy and breastfeeding will give her a couple of years better health is just a way of justifying her lifestyle choices.
Whatever choices she makes is entirely up to her and her DH. But at least own it and stop pretending the baby is just to improve her health. There are so many what ifs that, when you already have 2 children, need to be taken into account.

I wouldn't judge you but personally I wouldn't delay treatment that could help me have a fuller life with my existing children. Two years is such a long time to young children. Your choice though.

If its through the gp there is often a wait for the clinic to get filled. Sometimes 2-3 months.

Why on earth was my comment deleted? How pathetic.

You already have 2 children, if you are suffering with your health and putting you financial independence on the line I would gently suggest you should seek permanent treatment

OP have you considered emotional support such as Talking Therapies for the impact of your long term health conditions?

Also Endometriosis Charity for support groups etc