I just wanted to share my issues and see if anyone is going through, been through the same and has any advice.
I am currently struggling with my endo problems with severe pain that is keeping me off work atleast two weeks a month. This month the pain is causing me to be off for three weeks.
My mental health is severely struggling and I am running out of ideas of how to deal with my pain.
I am constantly talking to my gp with meds being prescribed but nothing is helping.
I am really contemplating leaving work to focus on my health as I am struggling to manage my three days a week.
Does anyone have any advice?
I would really appreciate it.
Thank you for reading.
Written by
Rwby_Rose
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Wow its like I've written this myself. Not sure how to advise but feel you.I've cut down to 3 days but am struggling to have the energy to fight the pain and tireness to work. I'm also a single mum so have to do all the home jobs and just can't seem to cope.
I took naproxen (anti inflammatory) for a different problem and found it eased my endometrioma pain and endo pain which I sem to have constantly.
Thank for your reply. I am sorry you are going through the same problem but you for sharing. It's nice to no that someone else is struggling too as there are some days were it feels like I am alone.
I have tried naproxen sadly and this is not really helping either.
I get what you mean about the fatigue, it can be really awful and annoying.
My work is 'trying' to help me but feel they are now finding ways to let me go, I hope your work is more supportive of you 🙂
I completely understand and can relate to how your feeling I have endo, adenomyosis, cysts and waiting for a hysterectomy. I am having prostab injections with hrt and this is helping although I've stopped pain for side effects I can manage my daily life much better.
I tried a cocktail of medication and natural remedies none of which worked. It's getting the right treatment or hormone therapy such as the pill or injections that work for you and that's an individual decision.
Maybe see a gynae someone more senior and or a scan for a more indepth diagnosis and treatment from there.
I am in constant contact with my GP who are changing up my meds all the time. Its frustrating but I am thankfully now being referred back to gyne so hopefully some more answers will be available soon 🙂
Is anything else planned to deal with your endo - Gynae referral, surgery etc? You might be on a long waiting list of course. But it seems if it is so bad you need to give up work then you need more intervention than your GP can supply.
It's worth thinking if there are any adaptations that can be made at your work that would help you - you could probably be classified as disabled at present. It might also be worth asking if you could ask your GP to sign you off on a more extended period on mental health grounds so you can take stock.
Failing that you could ask for a period of unpaid leave for the same reason. There is no requirement on your employer to give you this but if they want to hold on to you they might.
A lot depends on whether your employer is sympathetic and if you actually would like to keep the job if you could.
Sorry to hear you are in this much pain. Since last summer I have suffered daily pain which eventually led to reduced hours, then changing to a remote position while I focused on health.
I have grade 4 endo and adenomyosis . In my case the pain ( refractory to all pain meds tried and limited affect of dienogest, induced menopause) was a warning of the severity and I kept chasing an endo specialist ( nhs wasnt getting far so paid private to get diagnostics and medical options while awaiting surgery). Just had my lap with a MDT team ( severe endo, endometrioma, blocked fallopian tubes, large rectovaginal nodules, nodule on ureters, adenomyosis- I've had my left ovary and fallopian tube removed). The majority of my severe pain was left sided ( the side they removed the ovary/ had a big chocolate cyst and scarring etc - it was 5 hours of surgery total). I know they say that endo pain isn't always directly correlated to stage/ extent but in my case it certainly was.
Ultimately as mentioned above since the pain isn't managed my focus would be seeing an endo specific gynae for management options in the mean time, further investigations. Do you know what stage? Any bowel signs etc too. Also ensuring appropriate imaging could help to rule out an endometrioma, bowel involvement etc and if any surgery may be needed (see lindles post re ultrasound specialist etc). I would always wonder what pain we are masking with medication alone.
Also worth figuring out if you can manage on reduce hours / discussing with your employer or looking into other employment options dependant on your field of work ( in my case finding a remote job part time). You could also try looking into PIP.
I'm hoping my recent op will help alleviate pain to some extent, and allow me to increase hours and go back to my initial job in clinics ( combined with remote). I hope you get some help and get your pain managed.
No worries I understand. Hope you are feeling a bit better.
How frustrating that they didn't discuss anything in depth to help you. May be helpful to request the lap report via the hospital? Also ask if any pictures were taken. I've done this prior via an online system. Your GP will likely also have it ,maybe helpful to ask for them to discuss it and get it printed etc. Explain you are struggling with pain too.
That way for your appointment you may have some specific questions you can ask based on the findings. For example could it be severe stage, deep infiltrative etc. It's also handy to have reports etc if you wanted a 2nd opinion . After my lap I was told no bowel involvement but my signs suggested it so I got an mri and saw an endo specialist private who confirmed D.I.E with rectovaginal nodules. It wasn't until I saw the specialist he also noticed in the pictures it was also on the ureter so he also suggested a urogenital surgeon/ multi disciplinary team. If at the appointment they suspect stage 3 or 4 severe stage etc ask to be sent to an endometresiosis specialist.
Thanks,I defo need to look in to the pics and reports. I didnt think about that at all. I just got used to docs talking and simple letters back from the hospital.
I’m sorry to hear that you’re finding yourself having to make this decision. I can totally relate with this, as I took the decision to leave my full time job in medicine 3 years ago due to having such extreme pain which made my job too hard to manage. I am also a life coach and so moved to focus more on this, which I’m able to do working self employed when I can. I see you’ve had lots of great suggestions and advice which is so good to see.
I agree with a lot that’s been said, and one thing I’d definitely recommend is to try not to make rash decisions. Take your time when deciding and get all the help and advise that you can. You shouldn’t have to feel like you need to leave a job that you’re otherwise able to do because of a health condition. There are lines of support in place, it’s just not so clear to find. Your employer may be able to support in more ways. As previously mentioned, it may be helpful to have a good, open conversation with them about it. Seeing what options you may have. Signed off leave through your GP, unpaid sabbatical. Definitely look into PIP. This is a government benefit for anyone with ongoing health conditions, and you should be eligible for it with endometriosis. Also available is Access to work - this is a scheme to help support an individual with a health issue to be able to continue to work. This award helps support in various ways to help manage working life that’s been made challenging due to having a health issue. They can offer equipment to help make certain tasks easier, support workers to assist, travel help etc. It’s worth looking into and applying for. I have now been awarded with both thankfully, and it’s helping me be able to continue with my business.
I found the access to work application really confusing as the government doesn’t make it easy! So I went through a charity who helped me through the whole process who were amazing! I’m happy to share their details if you think it’d be helpful for you.
I would just say- as much as you can keep a feeling of having a purpose through your day, the better. I realised it affected my mental health big time not working at all. With not being able to get out and do much, always being stuck in the house with nothing much to do each day left me overthinking about everything! I need a sense of purpose, to work towards and i realised that I really missed the daily interactions of being around other people at work. So giving it up totally could add to the low mood and mental health issues.
I have found a way now to manage the pain so I can continue to work at a reduced pace with rest periods. With a combination of pain relief, supplements and self-care practices such as breathing exercises, light yoga and meditation. I’d be happy to share what I do too if that could help.
Main thing is to listen to your body. I hope you find the best resolution!
I went through the exact same thing, literally that was my description to my friends in the year before I left work. I had 15 jobs, in one year, averaging just over one per month. I took the plunge of leaving and focused on my health. It is a difficult decision and one only you can make.
It depends on the individual as well, how much this effects you, what support you have, treatment you have or don't have, how you ultimately feel.
Its not easy leaving work but there is still life when you're unemployed and focusing on your health. I hope you find peace in a decision that suits you best.
My only advice is think about yourself long term and your needs.
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