Endo and time off work.

[Marshkat]

I’ve been off work sick with excruciating pain for 9 weeks and as many of us on here I’m on a waiting list for surgery with no date yet.

I had a laparoscopy 6 years ago and was at stage 1, after having a scan 2 weeks ago my Ovaries are stuck with adhesions so assuming it’s got a lot worse.

Pain is in back, legs, under ribs and lower pelvic area. On lots of pain relief and GP been amazing and despite GP expediting me to gynaecologist still no appointment

My question is how long have people had off work before surgery, I feel extremely guilty but can’t walk far or sit for too long let alone work (I work with teenagers that have disabilities in a school) I am struggling to be a mum to my 9 year old and spend 70% of my day resting. I am a lone parent and have very minimal help but feel going back to work would be impossible.

what are others experiences?

[Hidden]

I swapped work from hospital pharmacy to an office job it is less intense on my body it's still not great but i cant afford to give up work and also the fact they are supportive which helps. There are a few temp working from home jobs or I used to do note taking in a university it was very part time and flexible. Only if you feel up to it though.

[Awwy]

Hi

I totally understand your situation. No need to feel guilty at all. I was off for 3 months I had a highly stressful demanding job at the time. As I worked for an organisation that was large I was able to take up a secondment opportunity to a different type of work and then I was offered a permanent transfer there.

I asked for and have been given reasonable adjustments.

Like you I'm a single mum with very little support and was spending majority of my time in bed. There are a few things I could suggest that might speed up you getting seen:

1. If you know the consultant name can you speak to the secretary and ask to be seen due to the fact you are in severe pain and its impacting your quality of life?

2. Have you been referred to a BGSE specialist? If not you can find one close to you via this link. BSGE endometriosis centre register.

3. You can asked to be referred to the pain clinic by your GP. There is a waiting time but it might be helpful whilst you wait.

The main thing I learnt through this journey so far is to listen to my body. When you have good days dont over do it because it just sets you back. Dont feel guilty you are a human.

Wish you all the best.

Take care

[Marshkat in reply to Awwy]

Things have got far worse this week and I have an emergency appointment with Dr this morning so I will ask for these things. I spoke to a Dr at 111 late last night (who was amazing) I said I didn’t want to go into A&E to be even more uncomfortable for hours on a Friday night when I have no childcare to just be give morphine and sent on my way. So she arranged appointment for today and said I should be able to get oramorph prescribed, She mentioned my Diaphragm as well and said that I’m referred to the best gyno in the area Mr Carpenter. So hoping for a bit more support if not pain relief.

[Awwy in reply to Marshkat]

That is reassuring to hear about the consultant. Sorry to hear you are feeling meh. Totally get not wanting to go A&E to be given morphine. Hope you are ok as you can be Lots of hugs

[CARBUCK]

Hi Marshkat,

I've been off 9 months. I have a supportive boss and a good sickness policy in work. I was on the nhs waiting list 18 months for my op. I've finally decided to go private. I have my hysterectomy and bowel resection on Monday.

It's really difficult because if I wasn't waiting so long for my op I definitely would've been back to work by now.

Also the financial implications of being off sick and so many of us having to pay for private treatment is awful. Im now on half pay and have needed to ask family for help with paying for private treatment.

Never mind all the pain, stress and menopause symptoms 🥺

I know how you feel. I have felt guilty too. Never been on long term sick ever. I couldn't imagine going through all this and having to look after a child aswell.

All I can say is you are more important than work. Work will carry on regardless. If you don't feel well do not go into work. If you make a mistake in work due to not feeling 100% your employer would say you shouldn't have gone in. Take this time to prep for surgery, rest and relax.

I hope you get sorted soon. Good Luck xx

[Marshkat in reply to CARBUCK]

Thank you, I’m really trying to stay positive and remind myself that at 36 I still have 30 years of working left and this is just temporary but I needed to hear other people have been through similar as it’s very isolating

[Tropic]

I feel very guilty when I take time off because of endo. Because it is an ‘invisible’ illness I find people don’t understand or take me seriously. It’s so awful.

I’m so sorry for your experience. That is absolutely horrendous.

[Hidden]

I have chosen mischief with this if anyone asks I will explain in detail what happens and what causes pain until they look horrified. At least they believe me now.

[Tipps]

Hi, I am waiting for my appointment with the BSGE clinic, as I have recent had a bad flare up causing a lot of pain in my lower back and pelvis. I have been treated before and the symptoms were being suppressed by Noriday but a recent stressful sutuation has caused things to change..Whilst waiting and after taking a couple of days off work, I work in a primary school 1:1 so needed for continuity. I forced myself to go in in the hope that that pain would ease, heat pads helped but pain killers don’t touch it. I then thought I'd try a back specialist, looked at chiropractor or osteopath. Went to the latter last week and she examined me. Although she can't treat the endo directly, she worked on my lower back and pelvis and she said I have limited mobility due to tensing up because of the pain. She worked on relaxing the muscles and it has helped tremendously. Going back next week and will keep it up as definitely seen an improvement, not cheap but I have some health insurance I can claim back. She also suggested pilates to stretch the muscles out. Hope you get sorted soon, it's a horrible disease, hoping for miracles with the BSGE referral too..