MANAGING A FLARE UP???

[Ginge2001]

Hi guys I have stage 4 endo,I have been taken off everything as zoladex, the mini pill and combined pill didnt work and now have got my period and fair to say I have never been in so much pain as I have the past few days, i have pains down my legs in my hips, back and ovaries. I keep saying to people that i wish they would just put a numbing needle in my ovaries to help with the pain for like a few hours. I can’t stay off work because I have now been given a disciplinary. And I’m wondering if anybody can help me with a way to manage this pain. I have been told of doc not to use my heat pad anymore as It’s very bad burns of it. I’m exhausted and slept all weekend. I have not seen my girlfriend this weekend because I’m just in too much pain to move. So any advice on how people manage the pain would be appreciated

Sorry for the rant everyone but I really don’t know what else to do

[SeedsandNuts]

Hi, I am sorry to hear how difficult things have become. No need to apologise for the rant.First, given a disciplinary?! Please get Occupational Health support because they will give recommendations to work on how to support you. They will advise work to consider The Equality Act .

In terms of pain management, I find mindful nutrition helps me ( I still allow myself some treats, though ), some gentle exercise when I have the energy, rest if unwell or exhausted. I am learning to listen to my body too. I am currently on 3 hormone treatments and they drain the energy out of me.

Socially, it impacts time spent (or not) with others. I just tell them what I am going through so they understand.

It is a lot, having to think of what to eat, how to travel if you need to, time off work, appointments, mental wellbeing, etc - they can be draining!!!

You are not alone, be kind to yourself, keep speaking to your doctor / gynae🙏🏽 💛

I hope you get some seasons of respite .

[Ginge2001 in reply to SeedsandNuts]

Hiya occ health have said that I’m doing everything I can and there’s nothing g they can do x

[TwoTurtles]

I am so sorry to hear you are suffering so badly. Has the gp given you any pain medication? If not you can take paracetamol and then ibuprofen every two hours. I also use a tens machines, which really helps me. The best advice I can give is to go and see your gp as they may be able to refer you to a pain management clinic which should be able to help you.

Good luck.

[Ginge2001 in reply to TwoTurtles]

Thank you I will look into to this and I have a tens machine too it worked miracles but now I get the pain down my leg and bottom of my back too and a tens machine only seems to help one part of the pain x

[Cailleach]

Late reply but anyway-

Do you have a treatment plan going forward? It is no good just to say that didn’t work and leave you worse off! Are you scheduled to see a Gynae again or can you get referred back? We’re you being seen at a specialist (BSGE) centre? If not, with stage 4 you might meet the criteria for that, if you are under a gynae, worth trying to get an appointment sooner, if not, get your GP to refer you explaining the level of pain you are having.

If you have been on hormone treatments and stopped, you will probably find things particularly bad initially. When you say they didn’t work, presumably you were better when you were on them than you are now, so could you restart them, while considering the way forward, which is probably surgery?

I agree with the suggestion of referral to a pain clinic, if you are under a BSGE they probably have a pain specialist attached, but if not your GP should be able to refer you. Your GP though has a lot of options for pain relief they can prescribe so do make sure they prescribe the max possible and don’t just fob you off. Having a treatment plan which will hopefully improve things can help when talking to your employer -you do not have to give details, but can say you are on a waiting list to see a specialist/ trying new medication whatever.

OK, work, you already had good advice re Occupational Health. Most employers should have access to an Occupational Health Service, and they can be helpful in confirming that you have a serious medical condition and also discussing with you whether there are any reasonable adjustments that can be made at work to help you. These could be hours worked/ breaks/ change to duties/ working from home -really depends what type of work you do.

If you have already had a warning about sick time, I would advise you to seek the advice of a trade union/ACAS or the Citizens’ Advice to make sure your employer is treating you fairly.

If you have the funds, you might consider seeing a specialist consultant privately for advice -usually costs a few hundred pounds, If you want to do that let me know I will suggest where you could get recommendations as that’s not allowed here,

Best of luck, there are so many people in you position sadly xx

[Ginge2001]

hiya I don’t think I have a treatment plan in place, I have a appointment with gyni in a few weeks to review my MRI and I have been put on the depo injection but again that’s causing me to be in so much pain still. It’s like all hormonal medicines just don’t sit right in my body, I was on zoladex for 3 months and 2 weeks after my 1st injection bled for the following 3 months everyday. I think the gyni is going to refuse me to a different specialist because she said she doesn’t know what else to do x