Working with endometriosis : Just after... - Endometriosis UK

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Working with endometriosis

Dratini profile image
3 Replies

Just after some help please.. but I will try and explain without writing too much. For about 5 years I’ve always had severe belly pains when I was on/due my period, cramps, heavy bleeding , constipation, clotting , achy thighs, severe acne and overheating.

I have been back and forth the doctors and finally got a gynaecology appointment. I’ve been on the laparoscopy wait list for just over two years. Every time I go the doctors or go up to the hospital they pass me off with constipation everytime. I had more severe pain than normal last week and when I went to hosptial they finally did a ct scan and found abcesses on my ovaries, a swollen fallopian tube and an endometriosa cyst. Everything seems to be moving forward fast now and I have a pre op next week. They also think I may have diverticulitis.

I’ve always struggled and still do to go to work with this condition but I’ve honestly powered through and I’m lucky to work from home so through heavy bleeding I try to be at home and have pain meds. Im do use my holidays when I’m quite bad, as I don’t want to call up sick. I feel honestly deflated because I feel it’s getting worse and worse. I’m quite stubborn mentally and I don’t want the condition to stop me working.

I’m worried that I seriously may have to go part time at some point, and I was wondering if I could claim pip whilst working full time? Part time? Every month for at least 2 weeks I’m in awful pain. I’m just wondering if I would qualify for pip? I’m really bogged down with it all and feel low and just hoping if anyone has any advice :( sorry to message. #endometriosis

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Dratini profile image
Dratini
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3 Replies
Jem33 profile image
Jem33

PIP is awarded based on how someone’s condition affects their ability to carry out daily tasks rather than actually having a condition itself. It’s can be a minefield to apply for and my best advice would be to get independent advice from the likes of Citizens Advice. They can help you complete the form and any subsequent appeals if you’re initially rejected. (Be prepared for that rejection it’s very common)

If you do apply fill in the form as your worst day not just ‘on some days I have pain’ although there are case studies to illustrate how they work out your ability over time if it’s not everyday day ie on day one you walk so many metres and for the following 3 days you are bed bound. Be specific about the pain and how it affects your abilities.

Hope this helps but definitely research about the benefit online (a lot) and get independent advice before making an application.

PIP isn’t means tested so you can get it whilst you are working.

Lindle profile image
Lindle

Endometriomas most often associated with deep endo behind the uterus (rectovaginal endo) and this must only be treated in a specialist endo centre. CT isn't a good scan type for endo, it requires an expert MRI or ultrasound.

I'll put a link below about endo symptoms to see if you identify with those of deep disease.

If this lap is in general gynaecology then it must at least be done by someone with a special interest in the condition (so additional training) but I would say you really do need to have it clarified whether you do have deep endo elsewhere by specialist imaging. The ESHRE guideline requires that you have an ultrasound or MRI prior to a lap. The problem we have with ultrasound is that it needs to be done by an endo specific expert otherwise it is unlikely to show anything other than the endometrioma you already know about. MRI also needs the required protocol used so it is so important when any scan is ordered that the instruction is specific about what needs looking for.

If you have a general gynaecologist go in they can only treat superficial endo but there is a risk they might 'have a go' at anything more severe they might find which would be against regulations and put you at risk.

I think you need to see if you identify with severe disease, and if you do I'd get in touch and say you want an MRI to check for deep endo as you are aware that would require referral to an endo centre and not general gynaecology. If you do go ahead find out who is doing the lap and their endo training and make sure they will just be diagnosing with treatment of just any superficial disease. Have dm'd you.

healthunlocked.com/endometr...

Dratini profile image
Dratini in reply to Lindle

Thanks so much for the reply. I have been on the laparoscopy wait list for nearly 3 years now , I have my pre op next week for this finally. So I’ve had a CT scan and ultrasound so far. I have joined the group so thank you for that.

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