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Original poster

How to handle work around endometriosis

13 replies

Angels1111 · 31/12/2025 12:22

My other thread has helped me realise how much this condition affects me.
I have stage 4 endometriosis and my hormonal shifts cause A LOT of pain. Just before my period there is a lot of niggling. During my period it's worse than labour. Painkillers don't seem to be doing anything to help. Due to how the condition has developed in my body surgery won't help. I am illegible for BC for various reasons. For these days I find it really difficult to function normally, and my concentration levels drop.

At the moment I try and power through. Frozen meals or partner does the cooking, simple entertainment for DC while I lie on the couch, lie ins and letting the housework build up.

But what I haven't changed is how I show up at work. I try my best to grit my teeth and do the same as I normally would.

As time goes on I realise this trying to power through thing isn't working out well for me...in the end yesterday I gave up and napped, passing out for hours, so clearly my body needs rest. Today (period finished) I'm absolutely fine and able to very quickly do the things I was finding so difficult yesterday.

But...I don't want to down the route of having to take several days off each month. I don't even know where to begin with that conversation with my employer, how that would impact their view of me at work, my job security etc. This is mainly due to lack of experience having to share medical stuff at work - apart from this, I rarely get ill or take time off for stuff.

Regarding reasonable adjustments, I already work part time as have a son with SEN who finishes school early, and I already mostly work from home. I could potentially do some work between naps but not a full day. I guess given I already have a lot of flexibility it's another reason I am trying to just work through the pain. One thing I guess I could do is get childcare some afternoons so that I can catch up on work missed when I'm down and out but do I need to tell the employer that's what I'm doing and disclose my plan?

I don't know what to do about this. Any tips?

OP posts:
brennanbones · 31/12/2025 12:35

I had to have a really honest conversation with work after ending up in a capability meeting due to my endo
we worked out what adjustments I needed. I have stage 4 with adenomyosis

mine were - increased sickness triggers, time out to take painkillers and see if I could resolve the flare (an hour or so) before going off sick, flexible working hours, additional time to read through stuff as I was on morphine and had brain fog

i would basically work unless I was at the on all fours screaming stage

brennanbones · 31/12/2025 12:37

Things that did help a little

morphine
heating pad (Amazon)
be you period patches
standing up and doing some dodgy dance moves or pacing around, hip circling type stuff or all on fours rocking

I also had to be very clear this was NOT period pain and not the pop a painkiller and carry on. My adjustments were temporary as I had an 8.5hr surgery to get rid of the worst of it and fix my bowel that was folded over

GinnyMcAllisterEatsPie · 31/12/2025 12:39

Are you paying for childcare in the school holidays? Is there any way at all you can stop working altogether? Look at what you bring home salary wise and how much of that goes on any childcare over the year to look at the true cost of your lost salary.

Then look at ways you can reduce your outgoings. That could mean remortgaging and extending the term as long as possible. Or you just being at home responsible for all the child related stuff frees up your Dh to further his career.

I was like you in terms of how ill I was pushing through work with endo. I fall into the doesn't fully respond to meds category (including chemical menopause) and my endo was described as aggressive. It meant I would just have to have surgery any time i became horrific.

I stopped working which meant I could listen to my body and didn't have to power through work. On bad days I can literally sit on my arse and when I need to sleep I generally could. My overall health improved a lot because of the slower pace of life.

We had no outside help, I was a sahm with two children and an incredible Dh. I use a TENs machine as like you period pain is just like labour pain. I am now in my early 50s and still have periods so there is no let up yet. Also a plug in heat pad which is lightweight and doesn't lose heat.

If you do need to continue to work then your employer needs to know this isn't period pain it is a whole body condition.

Mathsbabe · 31/12/2025 12:40

I found a TENS machine really helpful, until my ovary got stuck to my back passage.
Then I got injections in my stomach to stop my periods which were fantastic.

suburberphobe · 31/12/2025 12:45

When I had endometriosis I took the pills prescribed but also looked into alternative healing, homeopathy, Bach Remedies, acupuncture etc.

Not sure what worked but the end result is I no longer have it and have an adult son.

My heart goes out to all of you, it's an awful disease to have.

BananagramBadger · 31/12/2025 12:46

I had endo that killed off one ovary and affected other internal organs, fortunately surgery did help eventually. But before that I found that cutting gluten for a week a month had a big effect on pain levels, as did hydration levels - I don’t drink a lot of water typically but it seemed to help.

None of that made it pain free - but certainly helped enough to get by at work.

LiteraryBambi · 31/12/2025 12:50

I think you have to have a conversation with your employer and say that for a few days each month, you may need to wfh, do few hours but that you will make it up over the rest of the month.

Would you be open to having a hysterectomy? Might not cure, but likely to relieve symptoms.

GinnyMcAllisterEatsPie · 31/12/2025 14:20

@LiteraryBambi hysterectomy does not cure it unless you remove all other deposits by excision from elsewhere in the body. Laser treatment is nowhere near as good as excision but you have to be able to see it to remove it and it can be inside not visible on the surface. There is a fantastic endo surgeon on social media who does several operations every day.

Endometriosis is self sufficient can make its own hormones and its own blood supply. It is a whole body condition causing fatigue and brain fog. That was part of the reason I quit work, I couldn't think properly at times.

It happens because the immune system attempts to combat endo, inflammatory cytokines are produced causing chronic inflammation. This sustained immune response leads to systemic effects (whole body) an alters brain function. Inflammatory cytokines cross the blood-brain barrier causing brain fog and fatigue.

Disruption of the autonomic nervous system - chronic pain and inflammation can affect our ability to regulate heart rate, blood pressure and circlations (I can see this on my Fitbit for the HRV readings)

Chronic activation of the stress response, ongoing cortisol release causes exhaustion. All this info and more of it comes from DITTO Menstrual Research on Tiktok.

I also did a diet overhaul, yoga, meditation, acupuncture, reflexology, supplements, everything I could personally do plus all the meds, surgery, etc that the gynae recommended too. The best thing I ever did to improve it was stop working. It actually meant I was better and then able to do more things. I was diagnosed 25 years ago.

Now I just have the pain and chronic fatigue. Like you OP I have experienced crash out for hours at a time if I push myself, that can be doing certain housework tasks or just socialising because the mental load of it also impacts my energy levels.

If you want to talk to work about it then you will need to disclose your medical condition, what impacts it has on you and how you propose to work around it. Use the above stuff to backup the symptoms you feel. They can say no. Sadly although you can get PIP for endo (very difficult to prove unless your lungs are collapsing from it, yes you can get thoracic endo) I don't believe it is classed as a disability so there is no disability discrimination at play.

What did it for me was what quality of life I had and the version Dh and my children saw of me when I worked, part time pushing myself to exhaustion compared to the non-working, have more energy to play, help with homework etc person.

manysausages · 31/12/2025 14:26

Hysterectomy did work for me. It’s a drastic step but it has changed my life.

LiteraryBambi · 31/12/2025 17:03

GinnyMcAllisterEatsPie · 31/12/2025 14:20

@LiteraryBambi hysterectomy does not cure it unless you remove all other deposits by excision from elsewhere in the body. Laser treatment is nowhere near as good as excision but you have to be able to see it to remove it and it can be inside not visible on the surface. There is a fantastic endo surgeon on social media who does several operations every day.

Endometriosis is self sufficient can make its own hormones and its own blood supply. It is a whole body condition causing fatigue and brain fog. That was part of the reason I quit work, I couldn't think properly at times.

It happens because the immune system attempts to combat endo, inflammatory cytokines are produced causing chronic inflammation. This sustained immune response leads to systemic effects (whole body) an alters brain function. Inflammatory cytokines cross the blood-brain barrier causing brain fog and fatigue.

Disruption of the autonomic nervous system - chronic pain and inflammation can affect our ability to regulate heart rate, blood pressure and circlations (I can see this on my Fitbit for the HRV readings)

Chronic activation of the stress response, ongoing cortisol release causes exhaustion. All this info and more of it comes from DITTO Menstrual Research on Tiktok.

I also did a diet overhaul, yoga, meditation, acupuncture, reflexology, supplements, everything I could personally do plus all the meds, surgery, etc that the gynae recommended too. The best thing I ever did to improve it was stop working. It actually meant I was better and then able to do more things. I was diagnosed 25 years ago.

Now I just have the pain and chronic fatigue. Like you OP I have experienced crash out for hours at a time if I push myself, that can be doing certain housework tasks or just socialising because the mental load of it also impacts my energy levels.

If you want to talk to work about it then you will need to disclose your medical condition, what impacts it has on you and how you propose to work around it. Use the above stuff to backup the symptoms you feel. They can say no. Sadly although you can get PIP for endo (very difficult to prove unless your lungs are collapsing from it, yes you can get thoracic endo) I don't believe it is classed as a disability so there is no disability discrimination at play.

What did it for me was what quality of life I had and the version Dh and my children saw of me when I worked, part time pushing myself to exhaustion compared to the non-working, have more energy to play, help with homework etc person.

I literally said it wasn't a cure.

Greenqueen40 · 31/12/2025 17:13

Have you tried everything on offer to manage it? Pills, mirena, decapeptyl, adhesiolysis?

Amore03 · 31/12/2025 18:23

I had endo from 17 to 40 when it was agreed by myself and my amazing gynae to have a full hysterectomy. I suffered years and years of pain , heavy bleeding , bloating , not being able to get out of bed , or go to work . I had so many days of work . They knew about my endo but back then when I was in my 20’s , I am 56 now it wasn’t as publicised as it is now.

Doctors put it down to a heavy period . I was Being sick on the first two days prior to my period and during . I met my now husband around 17/18 yeas old and he was amazing .

The doctors on the NHS refused to see it other than heavy periods, we had to pay privately to get laser treatment. The consultant told us this was the only thing that would help to keep me from becoming infertile . We paid to have laser treatment as we were told this would help with the pain , to eradicate the lining that has become detached. Yes , it helped but it came back . I must of had 4-5 rounds of laser , I wanted to be a mum . I was told if it got worse , and I didn’t get laser treatment I wouldn’t conceive . I did , I had 2 healthy boys , 2 1/2 years between them .

I was told after having them that endo would go . It did not . I have to say , I had a few gynaes. NHS & private , some nice , some rude . My last one who said to have the hysterectomy really saved me . He said , have a full hysterectomy with your ovaries removed . Your endo will be gone , pain free . He was right . After I recovered I couldn’t believe I had no more pain . I had to decide when the right time for me was to have the hysterectomy, and I chose correctly for me , I was 40. That was 16 years ago.

Nottodaty · 31/12/2025 18:29

Tens machine and eventually after operation to remove again had mirena coil fitted, that was 10 years ago. Life changing for me. Coil took around 6 months to settle but I have a normal life - after nearly 20 years suffering at least 4 operations for removal it’s changed my life.

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