I'm currently preparing to return to work after being on long term sickness since February. I have stage 4 endo which has also caused damage to my sciatic nerve resulting in me being reliant on walking aids. I had my 5th laparoscopy in June and my endo has been manageable since. However, I'm still feeling really anxious about my return to work. They keep asking me about how I will manage my pain moving forward but I just can't answer that question because I can't predict what the pain will be like moving forward. I am a primary school teacher and understand they need me to be present and give 100% for the children - I beginning to wonder if I am physically able to continue as a teacher. Any advice?
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MsKJC
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Thank you for your suggestion - they have given me a phased return up until Christmas where I will be half-day (7.40 am - 1.30 pm) and then full time from January. (7.40 am - 5.30pm). Occupational health said I could be fit for work as long as my school put some things in place but the head has said she cannot action all that was suggested as I need to be in school full time ("or the parents will be on your back").
I’d agree, if you don’t have a union speak to ACAS.
The GP should give you a fit note for reduced hours and any other advice. That might be a new one for them though given how it’s hard enough to get a diagnosis, but worth a try.
The head she cannot agree to reduced hours after my phased return. So its full time or nothing it sounds like. The OH also suggested I be allowed to work from home if needs be during flare-ups but the head said my role as a class teacher doesn't allow for that (understandably).
I’d get some legal advice, it’s a grey line these days. With the degree you are suffering it’s likely considered a disability and there’s a whole different set of requirements, mainly in your favour. It’s something that they are likely to have to work out. There should be a middle ground for both of you. You can bet if she had it there’d be a way round as she would want to keep working.
Yes yes yes to all the replys so far. You are legally under the disability act you can find this online to read as this is a longterm illness and reasonable adjustments have to be added to your return to work and ongoing working with your current employer.
I too had this issue with my similar conditions and my line manager at the time said I couldnt remain in my role continuing partime as the business couldnt do it. But I knew I couldnt just go back fulltime or loose my job completely as my health issues were still not stable and I still had ongoing assesments. My union got involved and my line manager changed and with occ health, my GP still signing me off as needing to be reduced hours and business worked out I could be partime in my role and do some days from home.
The importance of disability being inclusive in teaching needs to be addressed here there needs to be all reasonable adjustments for someone who has fallen ill while still in your career and role. As your union are no available some contact a disability charity, I know some have helplines too.
Even a free chat with a legal advicer who specializes on disability might help you feel you have more back up woth your rights too. Good luck with it all and take care xx
I have stage 4 endometriosis too and until December 2019 I’d managed (not quite sure how) to work full time for nearly 18 years. Consultant has said treatment options have run out with exception of hysterectomy and colostomy bag which I’m trying to delay as long as poss. He advises I will have some level of pain forever.
In more recent years I was continuously placed on an attendance improvement plan for the time I had to be off due to unimaginable pain, surgery, appointments, scan.
I work in banking and my job involved sitting for 10 hours a day which became impossible due to pain, plus needing to pee 40+ times a day and was often delirious with exhaustion by the afternoon, I shouldn’t have been driving home.
I’ve been considering other options but I frequently get spasms in my lower back when stood or walking for very long so that limits options even further.
It took me a long time and support from my therapist to accept that I probably won’t ever be able to work like that again and for now it is time to look after myself.
I’m certainly not well enough at the moment and if/ when I hopefully am it will be something that works around my health and not be pressuring and not looking after myself as I was for so long before.
Obviously money is a big issue but there is support available, another thing I was very embarrassed and reluctant to claim for feeling and being judged like a scrounger but now I think “I’m ill with a stage 4 disease for which there is no cure, I didn’t choose to be, I’ve worked extremely hard for as long as I possibly could whilst being very unwell and now I’m grateful for whatever help I am entitled to”.
It must be a really big and hard decision as you must have dedicated a lot of your life into training as a teacher.
I would say just look after yourself and put you before anything else as your health is most important!
I too am so sorry to hear of your ongoing pain and you're so right - this isnt a choice and with no cure we have to do whatever we can to make life as comfortable as possible.
Financial help has also been suggested to me and I've struggled with accepting to consider myself as disabled BUT I shouldn't feel ashamed I have worked hard and would love to continue but this condition makes it difficult and paired with employers who cannot or won't be understanding/flexible makes it even harder. I'm hoping a union member will get back to me soon as the more I think about it - the work load, the stress, the long hours, the "parents on my back" the more anxious I become.
When I was in hospital last December I was so uptight and worrying more about hitting my “attendance triggers and disciplinary action” than I was about what the hell was going on inside my body and the damage the disease has caused to create such immense pain. Sadly this time the pain never reduced and hence I’ve never returned to work.
Good luck and feel free to message me anytime you want to chat xxx
P.s. it’s taken me a long time to accept that I this disease has actually made me disabled too. My mum frequently uses the word disabled to describe how I’m affected and i absolutely hate it. But the truth is I can’t do many things without the help of my parents and sadly don’t have a partner anymore so I worry a lot about the future.
It’s so horrible and mis understood. Just earlier this week I heard my urologist say to a nurse “oh she’s healthy and ready for surgery she ONLY has endometriosis”. I was furious inside and said “my pelvis definitely isn’t healthy” and she replied “oh yeah your pelvis is shot at”. Wish I’d said a lot more now haha. Xx
Omg!!!! That doctor was rude! I've been in that situation when I wish I said more. We have to stand up for ourselves. Unfortunately this condition, regardless of the fact it's excruciating, debilitating and affects our quality of life with no cure just isnt recognised as being serious. It's so frustrating and upsetting. Being able to speak to others who understand is so refreshing. Thank you so much. This is the first time I've been in an endo circle and its great to have the advice and share stories. I'll keep in touch for sure x
I had 6 opps. A career. Took drugs to maintain working, Danol, Zoladex, painkillers, Tens Machine etc. etc. Have spine issues with 4,5,6. Walking issues sometimes, sciatic issues. In menopause. Did IVF, no children.
My employer said due to my pain, I was not always able to be available at all times to complete tasks. They felt that other members of the office would fret on my daily ablites or missing from the room or falling asleep at my desk through exhaustion, at home due to illness. They felt their company insurance for staff would not cover me. I retired with disability, on ESA. I live on painkillers, some days still very ill. There are no more drugs that I can take. No more opps unless I want to lose, bowel or bladder. Chest, pelvic and back pain most days. Since my periods gone, menopause I do get a few days or hrs free of pain but you can't say when. Provided I do little walking or physical things I can cope much better, I have learnt to pace myself. I do floor excercise, exercise large ball and have a vibro plate. The vibration I have to use in short amounts or it can cause inflammation. At the moment I have 2 cysts on my spine, waiting for MRI to see what they are?
I'm so sorry to hear of your pain. I always thought that things would improve after menopause- goes to show its sometimes better to speak to someone living it than a doctor.
I'm definitely going to seek advuce from my union, speaking to other sufferers has been more helpful than speaking to my doctor!
Thank you for sharing. I truly hope the scan results can lead to a resolution, at least for a more comfortable quality of life. x
It depends where you have the Endo. What staging your at. Whether at 55+ a hysto. is viable without further damage to other organs or like me losing some and whether a huge and complex op. would only make pain and living with the outcome.
As for the DWP Endometriosis and their lack of knowledge with women that can have this so serious having on their list of Disabled normal reasons! It was a case of a lot of paperwork and years of my case info, documented times off work, then meetings, physical examination and tribunal for them to reconsider their findings.
The one thing that has helped me with my bowel pain has been to go Lactose and gluten free and staying away from soya which has reduced some of the swelling.
I wish you all the best. I have not been able to work due to Adenomyosis & Endo for about a decade. I finally had a hysterectomy last year & this entire year has been about healing & Covid. I myself am unsure about how to proceed with a job search in my country as the economy is not in the best state.
I do hope that your union gets back to you & you can resume your teaching career. What about online teaching? Would that be a good option for you.
Ladies, I have a suggestion for pain management. I don't know if it will be available to you all. Traditional Chinese Medicine TCM). I was diagnosed with Adenomyosis in 2005, via myomectomy & subsequent biopsy. I decided on the treatment after I had a seizure while on hormonal meds & the docs did not want to recommend any hormonal meds for me. That was in 2010 years ago & even post hysterectomy, my doctor is not willing to prescribe hormonal meds. I had the hysterectomy in Oct 2019. My treatment included acupuncture, herbal treatments, heat lamp therapy, cupping, moxibustion. At home I used a hot water bottle and some massage (light) to help with the pain.
I have to tell you that the TCM treatments helped me tremendously with the following, reduction in Migraine days, for example I would have a headache almost every single day, headache days were reduced to 5-7 days a month after about 5 sessions. Herbal treatment, heat therapy, cupping, acupuncture, helped with the reduction in occurrence of clotting & passing clots & ofc the pain before you pass said clot(s).
Acupuncture, cupping, herbal treatment & heat therapy helped to reduce the sciatica pain/inflammation, less irritable bowel symptoms, less bloating, less pain during ovulation, less bleeding days. I would bleed sometimes for months, during my 8 years of TCM treatment, the period cycle was regularized, meaning, I would have 7-10 days of bleeding, instead of 2 weeks to months on end. Painful sex was also a symptom & that was also less after treatment. Lots of patience and foreplay helps with that too. But other than that, there was no sex on the very painful and bloody/ibs days. It is just something we have to deal with.
This is just a suggestion. I still had to take more pain killers than I wanted to, but it was still less than pre acupuncture, also the treatments are ongoing and are not an overnight miracle, you have to stick with the treatment plan & change your diet as recommended. Also please only take treatment from someone who is qualified. My practitioner, is also a GP and trained with a school in the US to do TCM. Her medicine education was done in Canada & Cuba. I am in the Caribbean.
Please note that the TCM did not get rid of the Endo or Adeno deposits, they were still present & were identified post surgery when the uterus was examined for the histology report. Scarring was found on my bladder, Pouch of Douglas and there were adhesions- part of the intestine was stuck to the front of the uterus & the left ovary was encased in inflammation & stuck to the front of the uterus as well. I have the right ovary & cervix remaining. I am 43 years old, no children.
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