After suffering from the age of 13, i was finally diagnosed with endo in 2021. I had a laparoscopy & ablation, then a mirena coil fitted. Honestly it has just been a case of dealing with different and more extreme symptons i wouldnt say any of it has helped.
For the last 8 years my amazing partner has supported me financially when im to poorly to work, 2 months ago she lost her job. I am so stressed my flares are happening more frequently which then results in a vicious cycle of more pain causing me to cancel any shift work i had planned. As it stands, we have £28 incoming at the end of July.
It feels like our lives are crumbling down around us causing my health to come crumbling down quicker than we can manage.
I wonder if anyone knows of any support or knows anyone i can talk to about financial support? Id love to hear your experiences or trials and errors.
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hi. Try the citizens advice burea they can help check what benefits you can get as well as other help available. They are free and you can phone or visit your local branch. They are a good place to start.
If you’re not able to work due to the debilitating affects of your condition (and for so many years since you were so young 😪😪!!) you are highly likely to be entitled to the non-means tested benefit PIP - Personal Independence Payment. The DWP do not make it easy to claim but you can get advice from citizens advice. If you have this service where you live (Islington does) you can also get help with your application from a local “Social Prescriber” - ask your GP if they can put you in touch with one in your borough/area. They’ll also be able to do a benefits calculation with you to work out what else you might be entitled to
On top of PIP you should also apply for Universal Credit as well. This is sometimes be a lot quicker than the PIP process so you can start getting paid sooner. X
Thank you so much. I actually saw your post from 2 years ago about pip and didnt feel strong enough then, but now i see a lot has changed which is amazing! X
I meant to add this earlier but writing from hospital bed - was admitted on Tuesday as been dealing with latest unmanageable flare-up…had no let up from extreme pain for 4 weeks straight …. as well as constant nausea/vomiting, swelling - I am literally a balloon - and the rest. Found out today I have 2 cysts -1 choc, 1 functional… my (second) lap surgery will be this Oct/Nov (would’ve waited 2 yrs by then) - so forgive me for forgetting 😂😭😭!!) … but can’t sleep so distracting myself here! Also, bring very well looked after at UCLH
The other thing I’d suggest is getting in contact with your energy suppliers - they can offer breathing space as well as financial help with bills from their support funds. I’m with EDF and they actually wiped some debt I had on my gas bill.
Thames water offer a 50% discount on bills if you’re in a lower income household.
You can get discounted broadband if you get UC - I need to sort this myself! - I know virgin media offer it and many other suppliers do too. ofcom.org.uk/phones-telecom...
Someone might’ve said all this already but again, I’m on another planet right now… 🙈
oh and if you get the mobility component of PIP, you can apply for a fredom pass which is such a blessing with travel being so expensive!
If I think of anything else, I will share. All the best. Xx
I feel for you both. Anything I say here is going to be and seem inadequate in the face of your current situation.
Am assuming that you’ve done the obvious with various authorities and perhaps already in touch with the food banks . Getting a support network for you both in place doesn’t happen overnight. Talk to your GP . They maybe able to refer you to a local community garden that works both to provide emotional as well as good food support. It might be possible to apply for carers payment for your partner. Even if you are not church or other religious practice reach out to the community there. They are used to this and are there for all the community not just believers. These are often good places for both practical or a consistent quiet listening ear without judgement that we need when we really struggle. Sometimes unburdening ourselves of the stress enables us to carry on to do the essential for a while longer. Not being alone is important or disenfranchised from community when we feel overwhelmed .
If you have family network don’t be shy to be clear you need support for the next year. Folk can’t give unless you ask and some of what you need won’t just be financial. There might be different things for different skills. Make a list of the things you need at a basic practical level and let them know these are the things you need. Asking them for targeted help is better than having sixteen million repeat boxes of cornflakes and no electric or mobile phone access or it can be an introduction to someone for work . ( I asked my family if they felt able to support me kicking off a micro biz that was very flexi when my son was tiny , I was divorcing and had little to nothing coming in whilst being very ill. When I was too unwell I could put it down and picked it up on better days. It is and has been a lifesaver financially and mentally. )
Get in touch with any credit cards etc and make arrangements for a pause in payments move current card debts before defaults to lower rates cards or 0% interest for first year to buy a little breather . Agreements are preferred by lenders and are cheaper to service than debt service. You could see if there is a Debt Advisory Service near you and book an appt. They can often help with the applications and have direct connections to lenders that can be a struggle to find.
Hugs. I used to make a week “hit list” and work out which was the priority list and next in line and aim at x number per day. Keeping a notepad list of who , time numbers emails etc and any directions or actions advice etc. I couldn’t keep it in my head. You can’t do it all at once and need to self care through the process. Xxx
So Sorry to read this, I had similar, I'm now 59, it took until I was 46yrs to actually get the help I needed via an early morning trip to A&E. Personally if I had my time again I would've had a hysterectomy done privately by a good surgeon. The only thing that helped while I was waiting for the laparoscopy/& diathermy treatment, was Vitex Agnus castus drops prescribed by a good herbalist, as the ones on the general market didnt seem to help. I would def. advice to see a good medical herbalist, they can be hard to find too. I only didnt have a hysterectomy & oophorectomy because I was desperate for children, sadly that was never going to happen either. Also you must try to do something relaxing every day as hormones are badly effected by stress, painting,relaxing music, meditation, anything that absorbs your thoughts. Also have you read about the effect of progesterone levels on Endo. have a look at the useful info. on wellsprings-health.com (Progesterone Cream etc) web site, that might be good for you at your stage. Reiki healing also helps ease the pain. Sending good health & luck vibes XX
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