Anyone else having to take repeated time off due to pain?

[kaydee1292]

I haven't been officially diagnosed my gp strongly suspects that I have Endo. First symptoms back in 2019 left pelvic pain, pain during sex, pain when trying to stand, felt like something was being torn inside when coughing or sneezing and painful contraction like pain when needing a bowel movement. Have had multiple scans which have shown cysts on both ovaries (not big enough for removel) and trips to A@e due to the pain but back in January this year it got a lot worse. Pain in left pelvic area and back, left thigh went completely numb and heart rate went through the roof with a high fever. Was rushed into hospital for observation and was told it was ovulation pain. The pain has been constant since then with repeated trips to gp for medication as nothing seems to help the pain except codeine which then sends me to sleep. I was signed off work (nursery assistant for 1-2 year olds) on 10th January and returned Monday 21st so only 2 days ago. Today I've had to leave work early as the pain was excruciating and I was struggling to put weight on my left leg. I'm still in agony and dreading that it's likely I'm going to have to call into work again tomorrow sick. Am waiting to start contraceptive patch to see if this helps with symptoms but period is always irregular. I'm really stressed as I've not had a diagnosis and my gynaecologist appointment isn't until the end of June, work are not understanding of the issue, my partner is not understanding and on top of the pain I'm worrying about the financial aspect and whether I'm going to lose my job. Sorry for such a long post, I have no one else that I can talk to as they don't understand what it's like to live like this.

[jaspreetkaur]

Hi I went through the same thing. It put me under so much stress. My advice to you is do agency work. I’m currently working for the NHS doing bank roles which means when I’m off work it doesn’t effect my sickness or anything. The best decision I’ve ever made. Also keep a hot water bottle and pain killers at work so if you do have a flare up you can try help yourself before leaving work.

Hope you feel better.

Jas x

[Dee_EndoUK Moderator Endometriosis UK]

Hi kaydee1292

It sounds like you're having a really tough time of it at the moment - really sorry to hear that you're not getting the support you feel you need from your workplace or your partner. Aside from our forum, we do also have face-to-face support groups all over the UK, where you an talk about endometriosis and the issues you are facing with other sufferers. I know you haven't had a diagnosis yet, but your symptoms certainly reflect those experienced by those with endometriosis. You can find out if there's a group in your area at endometriosis-uk.org/find-a.... If not, there's also an online support group.

With regards to the issues you are facing at work, we do have a couple of informative resources on our website that could be of some help. Firstly, we have a document outlining hints and tips for employees on dealing with employers, and secondly we have some information on your rights as an employee. Both of these can be downloaded at endometriosis-uk.org/resources.

Waiting for a diagnosis, while experiencing such awful pain, can affect every part of your life and is incredibly stressful (which in itself can make pain worse). We do have a comprehensive document on treatment for endometriosis, which contains information on a range of pain relief options, including some complementary therapies, which may also help you to manage/reduce stress. You can find this at endometriosis-uk.org/endome...

Look after yourself and please go back to your GP if you're struggling to manage the pain.

All the best x