Endo is ruining my life : I am so sorry if... - Endometriosis UK

Endometriosis UK

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Endo is ruining my life

princessk09
princessk09

I am so sorry if this turns into a rant, I am just very close to having a breakdown.

I'm back struggling with pains I experienced before having a lap 5 months ago. My parents don't understand and think I should be cured and don't understand this condition is for life. I started crying before and they told me off and said "Stop being a girl" I'm so alone in this journey as no one in my life understands or listens to me. And they basically call me fat and tell me not to eat. Like I’m not even overweight or anything but I just have a little bit of a belly from bloating etc

I can't be like a normal 19 year old, drinking makes me bloated even more, I get tired easily or some days the pain is so bad I don't want to leave the house. It hurts that this could be my life from now on and endometriosis is something I'm just going to have to live with.

I'm due my period when I go on holiday next month so my GP has given me some tablets to delay it, however I don't know if they will work etc. My parents are stressing me out over it as they don't want me to take them and should just be in pain on holiday and basically be stuck in bed all week. Atm, I'm not looking forward to this holiday.

Sorry, I just need to get some stuff off my chest xxxx

22 Replies
oldestnewest

I just want you to know that we all get down days - from my experience with stage III it’s only about 10% of the time where I have pain. You will have days where you can handle it and feel normal again.

Stay off the drink, maybe just have it once a month or something as it causes inflammation. I changed my diet for a few months and it did the trick xx

princessk09
princessk09 in reply to AJJ123

I don’t drink apart from special occasions which is like 3 times year, my diet is already quite good apart from the odd cheat days when I’m very stressed etc xx

Hi, I remember being your age, undiagnosed and similarly frustrated at how endo was affecting my life.

Try and look at the positive as hard as it may feel right now - you have a diagnosis which gives you access to a toolbox of strategies to improve your quality of life.

You're still probably recovering, I know you said in another post you went back to the gym within a week and you could be paying for this now - for my first surgery I decided to move house a week or so after rather than resting and six months later I still felt awful, longest recovery out of everything I've had done.

I'm also really concerned your parents are telling you not to eat considering you have a history there, please seek help from gp and don't listen to them if you are feeling stressed about body image or food.

Back to that toolbox; have a look on endo-resolved.com for various medical and alternative strategies and lifestyle changes you can make. As you've noticed alcohol very severely impacts endo, it flatlines your immune system and all hell breaks loose - stress can have the same effect too so be good to yourself, do things you enjoy (even gentle things like sitting with a friend watching Netflix), spend time with positive people and avoid negativity.

Every parent of a teenager gives out about them lying in bed all day, unfortunately your folks don't seem to have taken into account that for you it isn't a choice but a necessity when you're unwell. If they are stressing you that much say look I'm worried I will be unwell and don't want to spoil your enjoyment so go and have a lovely time and I will see you when you're back.

- there will be other holidays in future that will cause you less stress.

Over time you will learn how to manage endo better, it may take time but you will find the treatments and changes that work for you. x

I’m definitely fully recovered but my gp thinks endo could be returning as I haven’t started treatment yet.

My parents are being a lot nicer and understanding today. My mum even offered to pay the extra £50 for cover in case I need medical attention whilst on holiday. Xx

Your gp is probably right, to get the most out of your treatment the best thing you can do is get on the pill/coil/have hormone injectables, anything to stop new deposits of endo growing - especially when you are so young - as it will lower the amount of surgery you may need in future. (not everyone needs repeated surgery by the way but it is best to do whatever you can to manage the condition - otherwise it is like a type 1 diabetic trying to cope without insulin or an asthmatic without an inhaler - not a good look!) Seriously, get your hol over and then start something to help you.

That's great news that she'll pay the insurance for you. You will be fine, I'm always a bit anxious about going away too, plan a list you need to bring of all your general stuff and whatever meds you need to bring, take it easy on yourself and try and enjoy it if you can cope with the folks x

Yeah I still have to wait till January to see my gynae who will give me treatment so I’m kinda stuck till then.

She’s not paying for extra insurance so I’m basically just gonna wing it and hope Norethisterone delays my period.

My parents are forcing me to go gym during my holiday so atm I’m not looking forward to it even more xx

Ok to be honest, you're an adult and you can do what you want - nobody has the right to force you to make you go anywhere or do anything that you don't want to do.

re. treatment I meant get on the pill/coil/or potentially something like prostap (see endo-resolved.com for options) Your gp can sort all that out - it would be far too soon to consider surgery until Jan anyway.

You can get to see a consultant for £150-200 privately if you need help quicker.

Re. paying for a private consultation/your own medical insurance. Get a credit card - Pay it off yourself from work, or via uni/college loan, or if you are too unwell to work/study you can apply for PIP or a crisis loan etc. There are ways around things and you at this stage in life shouldn't have to feel subservient to anyone. x

My doctor can’t sort anything out and won’t give me the injection or pill as they have to wait till I see my gynae.

I already paid £200 to see a consultant last year to get a lap sorted so I can’t afford to spend that kind of money as a student.

I’m not getting in more student debt for medical insurance when I don’t have any money atm.

That's fair enough. I'm a student too so I understand where you're coming from, was just saying if you are really struggling there are options. Hope the month flies in for you until you get some help. x

Lulububs
Lulububs in reply to princessk09

Sorry i know i just posted above but u can get a pill or norethesitone ( cant remember how to spell) from ur local chemist, superdrug, boots u buy it and it about 20 quid.

It stops periods for 2-3 months until u go to gynae.

Thats what i would do. Ive used them when gone away or on holiday so im not in bed all week. As i had a terrible experience of goin to spain and come on the very next day and spent 3 says seeing back of my eyelids. My poor husband musta been bored stiff.

U can even buy it online from lloyds or boots or superdrug

princessk09
princessk09 in reply to Lulububs

I can’t afford to pay for it atm, I’ve spent all my student loans 🙄 I’m just praying that I’m okay for holiday haha

Superdrug want £40.00 for a 20 day course 😫

Lulububs
Lulububs in reply to princessk09

Boots uvolan is £27 for 20 days. It still northusterone

princessk09
princessk09 in reply to Lulububs

I don’t even have £1 in my bank atm 😂

Lulububs
Lulububs in reply to princessk09

😂 u sound like me ... i have 5.67 whoop whoop and i work full time

princessk09
princessk09 in reply to Lulububs

I spent all my student loan haha in like the first week 😂

Lulububs
Lulububs in reply to princessk09

On good stuff i hope!! Like clothes and shoes obviously

Lulububs
Lulububs in reply to princessk09

Have u not thought of taking a pill permanently till january so basically ur stop ur periods until then?

Also gluten and things that inflame belly will help u.. my periods were horrific but since i cut gluten and breads and alcohol out i seem to b much better.

I

princessk09
princessk09 in reply to Lulububs

I’d only be stopping one till January and then I see my gynae/surgeon who will hopefully give me the injection x

There are websites belonging to other ' Endo Groups', maybe in other countries, that have some recordings of pretty detailed and graphic films, talks and speeches about Endo. Maybe your parents could be encouraged to see some of these. Lots of successful women - in the public gaze - have suffered incredibly because of Endo. The actress, Susan Sarandon, is a great supporter in the US, and the author Hilary Mantel has talked and written about her awful 'Endo' experiences … and there are lots of others.

I'm in my 60s now, and the pill always worked for me and later I had a mirena coil fitted, which was brilliant, and saw me through and past the menopause. However, it was very hard, as a teenager in the late 60s, early 70s, as Endo wasn't really heard of and I thought it was just normal. My Mum was incredibly supportive of me and my pain … while my father was a total insulting *!**!?* when it came to my Endo. It's hard to realise that the situation has not changed much.

See if you can find a local 'Endo Support Group' group, there should be a list on the 'Endo UK' site - see link at top of page - they run this site. Also, go back to your GP and insist on being re-referred about your Endo. Read around on here, and on the 'Endo UK' site, first, and try to learn the ins and outs of having Endo. It may be that you need a second lap: as the Endo came back so quickly, it may be that they missed some, or that you have a more difficult type. You may need referring to a specialist Endo Centre (BSGE Centre) , although you may have to have another ordinary lap first - but insist on this being a diagnostic lap, first, as if it's difficult Endo, then you should be dealt with by an NHS 'Endo BSGE Centre. Your GP should help, they know the 'official protocol' for dealing with Endo, and for referring difficult case to the BSGE Clinics.

You are not alone, read on here, and on other Endo sites, and try to learn as much as you can about Endo. Sadly we do - still - have to be our own best helpers and advisors [NB: there is an 'Endo for Dummies' book, which is very good]. Also, see if there is a counsellor at your GPs, or talk to a nurse - they may be more aware, tho' try to educate yourself about the Endo, and make friends with your GP: eg: ask what your Endo lap said, ask to read the reports. It may even say there was some that could not be removed, which would need removal in the future.

Hope this helps. DLTBGYD!

Hey, thank you for your reply. Yeah some days my parents are totally pain in the arses and aren’t supportive etc but then after they are okay and allow me to rest etc.

My mum never listens to me but as soon as she knows a celebrity has endo, all of a sudden she is nicer to me about it 🙄 and realises it’s a life condition and not something that just goes away xx

Don’t worry, I’m not gonna get into any debt for this. I’ve tried the pill etc so I think I’m going to try the injection.

My consultant and surgeon are the same person and I’ve seen so many gps in my clinic and they all say the same.

I’m just praying that I don’t get my period whilst on holiday and hope the month goes quick xx

Hidden
Hidden

You are not alone gurl ❤️

What helps me is drinking strong af peppermint, taking a supplement - magnesium biglycinate, chamomile or lemon balm tea for anxiety/stress, juicing when you can't eat and need nutrients/digestive relief (it's a pain but with it haha)

This illness is very consuming, I have been struggling with acceptance of it as well.

Go on that holiday and have fun!! X

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