Endometriosis, TTC, effect on work

[Pleasestopjumpingonthesofa]

I have endometriosis (and adenomyosis) and have had surgery twice with good results. My pain is mostly controlled when on hormonal medication and I can manage life with painkillers in that situation.

However, we are now trying for a child. Obviously for this to be possible I've had to come off the hormonal contraception and now have periods again. Thankfully my bad pain is centred around my period so by the time I need painkillers I know I'm not pregnant, meaning I can take them.

My worry is that it could take a while to conceive and in the meantime, I'm in serious pain a few days a month. Work is aware and reasonably supportive (male dominated field so I have disclosed specifics to Occupational Health but not my manager, he just knows what adjustments I need access to i.e. more frequent toilet breaks, WFH during bad days).

It feels like I'm almost "choosing" to be in more pain (and impact work) because I've decided to stop the hormonal medication which worked - but it's the only way I can try to conceive.

I guess my questions are:
A) has anyone had similar with having to come off helpful medication to try to conceive (or for other reasons) and how did you deal with the guilt?
B) I think I'm lucky at work and won't need it, but is there any protection similar to pregnancy illness protection for this sort of situation? I'm assuming not...
C) have people found that managers knowing specifics has helped over generalities (he knows I have a chronic condition that flares up and makes me tired, in lots of pain, better WFH etc)? I mentioned to Occupational Health months ago that if I changed medication it might be worse for a while but I feel incredibly awkward telling anybody that it's worse because we're trying for a child - I'm not expecting it to be an easy journey (potential fertility issues both sides) and we're not even telling family as I don't want that pressure.

Thank you - I know that was long. Also very happy to hear from non-endo sufferers as I know a lot of the above could apply to e.g. migraine sufferers too!

I was in a similar in situation but it was different for me because I was told by my consultant to go straight to IVF. I stayed on my medication until I had my first appointment for IVF and things moved fairly swiftly to the first cycle. There were delays between cycles but the pain wasn’t as bad for me as it was pre-operations.

I wish you all the best and hope it works out.

Mine was a slightly different situation to you but what I will suggest is how to cope without the hormones controlling the pain. Get stronger pain meds if you need them, don't suffer if you don't have to. Try a TENs machine which I lived on during my periods and a plug in heat pad which won't go cold and is lightweight.

I wouldn't tell them you are ttc just that you are having flare ups of your health condition. I had to come off the combined pill due to migraines with auras and high blood pressure. So the it was meds, chemical menopause, surgery then told ttc now due to damage internally. So work knew I was going through all of that but not the ttc at the end. I became pregnant immediately naturally. It was a shock but a very welcome one.

You already know this but get your body in the best condition it can be in re diet. Chronic fatigue makes exercise difficult. Take time to chill, relax and look after yourself.

Sadly I don't think there are any protections but the BBC news team seem be doing everything they can to shine a spotlight on endo and work, there was an article this morning on their website about lack of understanding. https://www.bbc.co.uk/news/articles/c9vmn2gn4zpo

It quotes 1 in 6 leave the workplace due to endo, I am that 1. It is also the best thing I ever did because my endo pain massively improved because I was able to listen to my body each day and stopped pushing through it all. I am very aware that is not an option for everyone.

Thanks both of you. Interesting to hear that you were advised to go straight to IVF @vincettenoir - do you mind if I ask why? Was it the progression of the disease, age, both? I'm 30 and during previous surgeries the endo hasn't been too bad around the reproductive areas (in a relative sense. My ovaries were stuck, but no deep endo and nothing on tubes!) so they advised trying naturally first.

@PenMeInForSunday unfortunately I've had lots of time to try all the different pain meds/coping strategies etc - I've been symptomatic more than half my life and was diagnosed at 21 - and I'm pretty solid on all of those! The pain is a lot better than pre surgery and it's manageable for all but a couple of days of the month. It's just that the only thing that makes those days bearable is them not existing i.e. hormonal meds that mean I don't have periods. I agree on not telling them I'm TTC, but it worries me that telling them I'm having a flare I can't control fully might appear even worse to them than acknowledging I know exactly why it's not controlled. I guess if it takes a while I can always change my mind and give them more info.

I'm glad you could leave work and it's improved your life. I'm lucky that I'm not in a situation where that's necessary for me (only an issue a couple of days a month if off hormones, like I said, plus a flexible job).

My tubes were too damaged. If I managed to conceive hopefully you will too. Good luck.

I'm incredibly open with my work over it because I have a lot of sickness
Mine does sort of have an end date though as they know I'll be having surgery in the next couple of months
I'm using everything from a tens to a heat pad to morphine

@vincettenoir thank you!

@fivebyfivebuffy I'm sorry you're struggling. I've found it easier to be open in the past, partially due to the team members at the time and partially due to not having a choice like you, and also having surgery as an "end date" to offer them.

This is why I'm struggling now - the "end date" is pregnancy but I'm not comfortable telling them that. So from their point of view I've had surgery, everything's been mostly okay since summer last year, and all of a sudden it's getting worse and I've got nothing to offer them on why or how I could mitigate it.

I've requested tranexamic acid from my GP as I think reducing flow might help although historically it's never done anything for me. Otherwise there is nothing else medicine wise to request as I had a horrible time pre surgery last year and went through all those discussions. I've got everything I can have, mirena was the temporary solution at that time but obviously not appropriate now.

I do think I'm probably overthinking it as nobody seems to care much if I'm off, but I worry it will affect promotion opportunities in the future. It's been useful to hear people agree with a) telling work something is happening but b) not telling them about TTC though.

Thank you!