Endometriosis UK
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"Don't be silly, it can't be that bad"

Sorry if its a bit of a rant.

So im a 24 year old single mum to a 4 year old and I am in my last year of studying nursing, because of financial reasons me and my daughter live with my parents so I can afford to get a career. I have had "IBS" since I was 11 but had a lap surgery last month confirming it was endo all along.

During surgery I had the mirena coil fitted and I feel it has made me much worse. I am in pain every single day - some days it feels as bad as labour cramps - I feel sick every day, my boobs hurt terribly most days and my mood has been horrendous! I have always prided myself on being very calm and level headed but since the surgery I am angry at everything and anyone - this is actually very depressing for me to feel anger towards my child who is my whole world. I am currently on codeine, tramadol, paracetamol and cyclizine all day everyday but it is doing nothing for the pain. My doctors say they wont give me stronger and I must just be overly sensitive to pain - I delivered a 8lb baby without pain relief or gas&air so I dont think that is the case. My parents don't understand how I can be in so much pain and are constantly moaning at me about all the painkillers I already take. My mum says I wasnt this bad before so it can't be as bad as I think. My dad says I need to "buck up my ideas and be a real parent" as some days I struggle to get out of bed from pain and sickness.

I just feel like noone understands what I am going through (apart from all you) and its really getting to me.

I have also had what is now my 4th infection in a month on my stiches and the sharp pain and smell is debilitating - I shower every morning and night no matter how bad im feeling so its not a personal hygiene issue. My body is very bad at fighting infections (after my daughter it took me around 10 different antibiotic to help).

I have been treated like a drug addict looking for a fix whenever I ask for my repeat prescription or a stronger medication. I went to A&E as advised and yet again they treated me like an addict asking what drug exactly I had came into get. They sent me home after ineffective oramorph as there was nothing physically wrong with me. I now actually work at the same A&E as a student so don't feel as if I could go in again as they all know me personally now and it would cause me embarrassment as "its only period pain, it can't be that bad!".

Im just physically and mentally exhausted now and I can't cope anymore, I don't know what to do. X

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Also forgot to say I rarely sleep anymore. I will go about 3 days on 2 hours sleep then be so exhausted Ill sleep for about 14 hours solid.

I have alot of difficulty eating food as I feel sick alot and get full after a few bites so have basically been living on cola and crisps as they are the only things I can stomach. I understand sugar is very bad for endometriosis but in the past I have went months with no fizzy juice at all and had no change in symptoms.

Please tell me im not alone in feeling like this as I am struggling to cope and getting depressed. I honestly believe if it wasn't for my daughter I would either be on illegal drugs or 6 ft under. I did actually try cannabis when my child was on holiday with my parents as its used in america and my best friend uses it for pcos pain and it worked wonders, I was able to eat and sleep and be in only mild pain but it is not practical in real life for me with having a child. Has anyone tried anything else? X

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Have u tried legal (in uk)cannabis ie CBD oil? That has helped me alot and it better then taking loads of drugs.

Cbd brothers or love cbd. Both good.

Also mayb pay to see a proper gynae one that is good with endo privately it is 150-250 quid but once they see ur notes and explain ur problem it becomes abit more acceptable when others question it....

I do not have one good thing to say about the mirena coil, i know very few people that try it that it agrees with them? Ask to have it taken out if u think its that. Tell them it giving u bad thoughts there soon take it out.

Sometime u gota do what u gota do.

Also if u are smelling wounds u have a infection?

U must eat well and drink loads of water and not fizzy drinks and crisps

( i know it easier said then done but it wont make u feel better) take it from someone with ibs...

mayb try some supplements( vitamins) a good probiotic to help fight ur bodies problems. Also a good digestive enzyme that will sort the ibs but u need a antibiotic!!

When u go to dr or hosp are u telling them about smell?

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Hi Hun, just wondering if you use cbd because I’ve been considering it but have some questions x

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I did try cbd brothers but i just got a tiny bottle and the least mg u can get as i just wanted to give it a go. It did work but unfortunatley it only last me a week and i needed a higher strain which is really expensive.

It worth getting in touch with them letting them

Know it for pain and what would they recommend there very knowledgable.

I am goin to amsterdam in couple weeks where it all legal and i plan on finding out alot more then and trying some different ways ie vape and things and learn bit more.

I have a friend who broke his back in car accident he been on tramadol years got so fed up of the side effects he went to amsterdam and had a injection in his back of cannabis and he said best thing he ever did now he goes out there twice year and has it done and learnt how to make his own oil( he keeps asking me if i want his but i know he has his Strong and i worry as someone that has never taken hardly anything it may have a weird effect.

The cbd brother one didnt though

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Thank you, enjoy Amsterdam, I’m for sure going to look into this a bit more x

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I just recently started using cbd oil today! Hoping it helps me as I’ve been having a horrible time lately

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Hey. I’ve been accused of seeking drugs when I actually had appendicitis and cholecystitis all along so I definitely sympathize with that. A lot of women have horrible experiences with the coil so you may want to get that removed and get on another form of hormone therapy. It took me a few different birth control pills to get myself squared away. But that is completely up to you.

Also, since you’re fighting an infection that can increase your pain horribly. I am so sorry you’re going through this. Are you currently on antibiotics? Sometimes that can irritate your bowels and since you’ve gone through all of this it may be aggravating it even more.

I’ve been prescribed medical marijuana and that has helped me a lot too. But for some reason right now it is too much for me, perhaps because of having 3 surgeries within 4 months. I am hoping that ends soon as it has helped me with a lot of my ailments.

It is not normal to be in so much pain. You know your body better than anyone else. I’ve been in and out of the hospital multiple times these past 4 months with no one listening to me. Brushing my symptoms off as Ibs and endo when my organs (gallbladder and appendix) were failing me. Keep pushing to get proper treatment. It isn’t easy but it is worth it. You are your own best advocate when it comes to health problems.

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I just wanted to say how much respect and admiration I have for you... bringing up your daughter, and studying to qualify as a nurse.

Completely understand your financial need for staying at home, and eventually the time will come for you to do your own thing when you feel you can. Regarding how much medication and what others think etc. I was diagnosed with stage 4 Endo maybe 5-6 years ago. Lost both my tubes, had 5 failed ivfs and another round halted as my thyroid test came back saying I had high antibodies and hashimotos. I seem to have constant pain, that I've forgotten it would be like to be pain free. The truth is, others (who have had no experience of any of this) would understand or even get to close. The compare it to a 'period pain' and expect us to 'carry on' and think it's in our heads. I used to tell my other half I wished he experienced my pain for just half an hour and then he'd understand. The truth is, I don't tell him I'm on Tramadol most days and how much I take etc. Aside from leaving paracetamol out I keep any pain meds just for me and keep him in the dark as deep down, I know he would strongly disapprove or call me an addict. I figure best to keep him in the dark. Besides, I would also be worried he would tell my GP he thought I was an addict and I'd be cut off completely. I'm sorry you haven't found anything that works for your pain/ conditions daily. I have so much respect for you doing all you do, and doubt that I could manage 2-3 days at work now without feeling completely run down and struggling. The truth is, it doesn't matter what others think about you. Don't bother telling them, if you don't get any empathy. support etc. Keep any pain killers hidden lol and look after yourself. I too drink far too much sugar - Lucozade by the gallon and redbull, plus crisps. I don't drink coffee any more and these keep me going. I love them, although I'm not sure physically in myself they are a good thing. They certainly give me a mental pick up and make me feel good. I don't drink much else aside from water which is no fun for anyone. I did spend a week at my inlaws with no 'redbull or lucozade' ... as they'd disapprove etc. Funny enough, I do feel better for it, but I'm still tempted to jump in the car, head to the shops and stock up again lol. Anyhow, just wanted to say, I can in many ways understand and empathize with you, and I have so much respect for what you are doing and how you are managing.

Wishing you all the very best xx

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You are doing the best you can 💪🏻 I bet when your daughter grows up and understand she knows you have done your best 😮 I know you said you can only stomach crisps and fizzy drinks but thats not good at all not just because of sugar you wont be getting anough vitamins which will be making you even weaker 😮 Try taking vitamins and probiotics also try peppermint oil tablets and turmeric tablets 😮 Drink water and good healthy foods in small doses remove gluten and avoid dairy and soy 😮 Also get the coil removed if your body is having a bad reaction to it 😮

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I agree abi, i am able to come of all my pain meds and so just cbd oil as i totally changed my diet... no sugar, no gluten, no dairy.

I eat anti imaflamatory foods.

Loadsa greens, good food.

I take probiotic, gluco, msm, coq10, tumeric, peppermint oil, vit d and c....

Which has all literally made my pain bearable enough to go cbd!

Healthy eating is a must!! It hard but it wont get better if u dont

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I can't eat any fruit or veg without getting diarrhoea and dairy products make me sick. Going lactose free and gluten free or even sugar free did nothing to help my symptoms unfortunately.

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Hey lovely.

Wow, you poor poor thing. all I can say is “I hear ya sister!’ I already have so much admiration for the fact that you are a single mum, let alone that you’ve also been juggling a career along side that. You are a warrior!

I too have grade 4 endo. I have a 14 month old too. No help from anyone, other than my husband who I am so thankful for. I’m currently awaiting my third lap in 3 weeks time and absolutely dreading it. Since my MRI in November my symptoms have taken a nasty turn and I am now vomiting throughout the month as well as dealing with the hideous pain and toilet issues that endo brings too (I am having some of my bowel removed)

I am a very positive person, I am also a police officer so not one to take sick leave unnecessarily and have quite a ‘get on with it’ attitude.

I am feeling very low atm. I feel like I’m constantly throwing up and if I’m not then I’m crying in pain on the toilet. I’m struggling with so many emotions right now. I’m a terrible mother, a useless wife, just everything.

I’m so sick of having to explain that I feel so ill and im sure people look at me half the time like I have a cold?!

Just fed up. There is simply not enough knowledge about endo and it is so unfair. I’m currently living Day by day having to call in sick because I spend most nights vomiting my guts up.

Can’t eat big meals. Spend Christmas Day crying without my boys because once again I was spontaneously sick all bloody day.

When will it end?!!!!

All I can say is that sometimes it helps when your not the only one going though it. I can absolutely relate to how pants you feel, although being a single parent you have even bigger struggles than I do.

There has to be an end in sight.

Things often get a whole lot worse before they get better.

Sending you lots of recovery wishes xx

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One thing I have to add is...Cannabis in my opinion and experience is really not the answer. Please don’t think I’m judging because I am absolutely not. If I thought it may be a magic cure I would give it a whirl myself.

Having seen how the effects of cannabis take hold months and years after usage the rate of drug induced psychosis is incredibly high. If you are having bad thoughts then cannabis in the long term will certainly add to that. I’m my 11 years of Policing, cannabis induced psychosis is one of the saddest things I have dealt with time and time again. It can destroy families and relationships long term and a lot of very normal and lovely people often end up with acute mental health conditions some years later.

Please discuss this with your doctor. There must be another option.

I would personally opt for a total hysterectomy before I ever resorted to something as dangerous as cannabis. I know that a hysterectomy comes with other issues...infertility/menopause but pain wise from the research I’ve done it looks very positive. Xx

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Cannabis Oil that most people take is just the CBD extract of the plant. This is not the pschoactive element of the plant. It does not produce any 'high' or psychosis. This element of cannabis is called THC - this is what makes cannabis illegal. CBD Oil, Hemp Oil..lor any other of the names is legal in the UK and has evidence based strong anti-inflammatory properties.

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CBD oil is sold legally here in the UK and many other countries. It does not contain THC and does not get you 'high', but it does have many medicinal benefits which can help endo sufferers.

It definitely would not cause psychosis. Increasing levels of psychosis in cannabis users is caused by some modern varieties of cannabis plants that have been bred to contain much higher levels of THC than normal.

The plants bred for medicinal use contain negligible levels of THC and the oil is refined and tested to remove it. Otherwise the oil would be illegal.

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Sorry i do have to say cbd oil is not cannabis! Thats why it legal in england. U have the cbd leaf and the thc leaf of the marijuana plant and the thc is the part that makes u high and can result in hallucination and later on in mental health.

The cbd oil is the part that is used as medical marijuana ie for people with MS, parkinson desease and many many others.

So please do not get the two muddled up.

I know this as i work in science research and used to work on a medical marijuana farm where this is being looked into and will soon be a way of life as it could help so many people....

Taking cbd oil is better then taking tramadol or codeine for life....

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