Sorry for a rant: Right now I’m full of... - Endometriosis UK

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Sorry for a rant

princessk09 profile image
34 Replies

Right now I’m full of guilt for having endometriosis and needing a lap. I’m struggling to cope emotionally and my parents aren’t making it better.

They are shouting and screaming at me over needed a lap and the private lap is £3090. They refuse to pay it and that my golf career is over as I’ll keep needing surgery. They just want me to try the endo diet for now but I know I need a lap to get some answers

They are blaming me for everything and I can’t stop crying right now. I feel so shit. This is all my fault!

Worse part is they are paying £4000 for their teeth to be done and won’t pay for my surgery because they’d rather spend the money on themselves.

And im in pain as I’m due on in a few days 😫

Quick update: I’ve had an ultrasound and tried loads of hormone pills and nothing has helped so this is why I need a lap to see what’s going on

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princessk09 profile image
princessk09
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34 Replies
girli1111 profile image
girli1111

I read your message and couldn't not reply. I'm sorry that you're not feeling supported by your parents. There are two issues as far as I'm concerned, financial support and emotional support. It's clear they are not going to support this financially. Take this forward with the NHS, invariably it is the same surgeons, I have had a consultation in an impressive swanky private uk hospital, only to be told by them that my op would be safer on the NHS as my surgery was complicated and nhs would have had other specialised teams on standby. You need to go back to gp and update them following your conversation at the Spire. As far as emotional support goes, obviously I don't have the full picture or info on your age or circumstances. I work with children, I'm a mother and obviously I'm a daughter too. Sadly in my experience lots of parents simply don't support their children emotionally, I count my own parents here sadly. I love them deeply, but cannot, and realise i never could,, rely on them. If this is the case for you then the sooner you acknowledge this and decide to look out for yourself, the better. It IS unfair, but the sooner you acknowledge that and move yourself forward the better. I don't consider this to be about money though. Good luck, and I hope your gp can help you to move things forward. Best wishes, this isn't meant to be harsh, but realistic x

Lulububs profile image
Lulububs

Hey

Im sorry your not getting support you need from your parents. I hope the reason is not that they dont wana spend the money but mayb they dont want u to go through all this before u try other things...

I was 42 before i had my lap, even though id had suspected endo since i was 17 so as you can see it not something u just run into.

Plus i agree with girli as in i would go nhs! I paid private to see gynae first then went nhs for lap, just incase they need other surgeons ie colectoral , if ur endo is on bowel ur need to have a bowel specialist which ur private dr will just leave it... which means ur parents would lose money as nothing would b done.

Then if u do have endo there prob treat it with pill, coil to start anyway aless it was severely bad.

So mayb see your gp first, get a diag lap sorted ... have u had a ultrasound?

Also sorry i was not snooping but i noticed in ur previous posts u mentioned food problems??

This is what mine turned out to be, all the years i thought it was endo it turns out i was gluten and cowsmilk intolerant and it had messed my colon and stomach up as soon as i stopped eating it my pain went including period pain....!!

So i had a lap for nothing

princessk09 profile image
princessk09 in reply to Lulububs

Yeah sorry I forgot to mention I’ve had all the ultrasound done and tried loads of hormone pills and nothing has helped at all not even the strongest painkillers can help my period pain

Lulububs profile image
Lulububs in reply to princessk09

Have u tried transexamic acid? This is what got me through years of period pain

princessk09 profile image
princessk09 in reply to Lulububs

Yeah it doesn’t help at all

Emmyeve profile image
Emmyeve

Ok so there’s a chance you don’t have endo? If you do have endo and you just leave it, that is dangerous, you could have a frozen pelvis and have all your organs stuck together. You could have ruin your fertility. I can’t imagine any parents wanting this. Why aren’t you using nhs? How would it ruin your career? Not everyone has laps all the time. My aunt had a lap and didn’t need another one for 16 years. The endo diet works fantastic if strict on it but if you need surgery at this point then the diet alone won’t fix it. It’s best to have excision of endo (by a BSGE accredited surgeon only) and then continue with endo diet. It doesn’t have to be a life changing disease it really doesnt.

princessk09 profile image
princessk09 in reply to Emmyeve

The nhs could have helped me last year but didn’t so I went private and my gynae wants me to have a lap. He’s going to try and get me on the nhs list quicker with one of his colleagues.

I’m worried if I leave it, things will get worse and affect my fertility. And my career involves a lot of physical work and travelling. Last year I missed a few big tournaments due to painful periods and now my dad is fuming with me and saying it’s all my fault I might have endo.

I’ve tried everything and nothing works so I really need this lap

Emmyeve profile image
Emmyeve in reply to princessk09

How can endo be your fault. Not that anyone should be focusing on who caused it but it’s normally passed down from one of your parents! The lap helped me with my periods. The diet makes them light and almost pain free for me cutting out sugar, dairy and wheat but if the endo has already grown patches or your have cysts then best the get them out. It’s not a long recovery so not sure what the big deal is. The lap would only help you and would be over in no time and can get back to work. Codeine & para will help with periods in the meantime. My periods were crippling but lap would help. Explain you’re in pain & nhs will move you up the list. Perhaps your parents could speak to gyny & they can explain why endo can’t be left.

princessk09 profile image
princessk09 in reply to Emmyeve

I’ve explained to them that it can get worse if left. Diet is hard for me as my parents don’t help and buy junk food so it’s hard for me to cut things out. And they refuse to pay a fortune for food. Yet will pay for their teeth and my dad’s tattoo. My mum said to me, she will pay for my next tattoo instead like wtf.

They know how much pain I’m in during my periods as I’m bed bound for 4 days and a couple days before I start feeling the pains

Emmyeve profile image
Emmyeve in reply to princessk09

Clean food doesn’t cost the earth. I saved money when changed my diet. Vegetables are so much cheaper than processed crap. How old are you? You don’t need their permission after the age of 16 you can consent to your own nhs treatment. If you earn then you can purchase your own food. Perhaps start being a little more independent. I didn’t have the most understanding parents either with my periods and suffered for years. Had I known how to fix it though (now you know) then I would have taken control of the situation myself.

princessk09 profile image
princessk09 in reply to Emmyeve

Yeah I’m 18

Lulububs profile image
Lulububs in reply to Emmyeve

Hi

Im with you on this one emmyeve.

Im 43 now and i wished id known at 18 what i know now, ive suffered all my life with periods and gynae problems, crippling pain, where id b laid on floor crying and spend 2-3 days in bed. Then about 2-3 days getting over the period.

It awful.

I eventually had a lap ,no endo at all.....

So i went to see a gastro who told me about the period diet, no imflammtory foods, no processed foods, no gluten and no dairy and it changed my life.... literally with 2 months my periods had gone from a 10out of 10 painwise to a 5 , a year down line it way of life to me now, not only has my periods gone down to 3out of 10 in pain i have also lost 2 stone. My nails hair and skin look amazing it has got rid of my ibs problems... what more can i say.

U put bad stuff in body ,bad stuff happens!

Emmyeve profile image
Emmyeve in reply to Lulububs

Couldn’t agree more!! I feel diet is “cure” for a lot of health problems. X

Lulububs profile image
Lulububs in reply to Emmyeve

Yes so do i.

I didnt realise how much so until obviously i started down this road of watching my food and how and what i ate.

Not only has it healed alot of body issues it has also healed my skin problems.

Id had ibs for years to and thats cleared up.

princessk09 profile image
princessk09 in reply to Lulububs

I just want a lap as well just to make sure what’s going on and then change my diet etc

Lulububs profile image
Lulububs in reply to princessk09

I can understand that, i would go to ur gp tell them

U seen private gynae and he said u need a lap but u cant go private... or even ring ur gynae and ask to b put on his nhs list.

my private gynae gave me my nhs lap, didnt cost me a thing then he sent me to see a nhs gastro to.

Whereas u go private u wont get any other help plus if anything need to be done that not gynae related ie bowel endo they wont touch it and ur then have to pay to see a colectoral surgeon to.

Paying private is fantastic if u are having a knee op or hip op but anything diagnostic can start goin into the thousands especially if they cant find anything!

I can see that u are desperate to have it done and i understand why.

princessk09 profile image
princessk09 in reply to Lulububs

Yeah my gynae is going to put me on one of his colleagues nhs list as he doesn’t work with them anymore

Lulububs profile image
Lulububs in reply to princessk09

Yeh it best thing, i only had to wait 9 weeks to so wasnt bad at all.

Whereas the private women i saw said id have to wait 4 months as she was so busy then she had 3 weeks holiday!!!

I was like hmmm so il pay u 4k and i have to wait longer then nhs!!

Then when i turned up to nhs gynae it was man id seen before anyway privately so it cost me absolutely nothing and in 9 weeks for same private gynae.

Strange!!!

princessk09 profile image
princessk09 in reply to Lulububs

Yeah I’m just scared nhs won’t fully look around during the surgery as I don’t want anything being missed. Plus I go on holiday in 8 weeks right when my period is due 🙄

Lulububs profile image
Lulububs in reply to princessk09

Have u tried transexamic acid before?

princessk09 profile image
princessk09 in reply to Lulububs

Yeah

Lulububs profile image
Lulububs in reply to princessk09

Im just trying to think of things to get u through pain wise till u get a referal.

What do u take painkiller wise?

Transexamic helped me as i had HUGE(tmi) blood clots and it made my periods less clotty which helped painwise but i also used to take naproxen a couple days before it started and then whilst on and also cocodamol 30/500mg....

princessk09 profile image
princessk09 in reply to Lulububs

I take codeine but it has no effect on the pain. I’m going to email my gynaes secretary later to see if she has spoken to him about the referral into the nhs with his colleague

Lulububs profile image
Lulububs in reply to princessk09

Hot water bottle!!! Thats my best friend. I am laying here at mo with one

princessk09 profile image
princessk09 in reply to Lulububs

Yeah once my dad leaves for work, I’m going to get it as I’m getting a sharp shooting pain and a dull ache all at once

Lulububs profile image
Lulububs in reply to princessk09

I was woken with sharp pain in left hand side but it goin now ... just took naproxen and cocodamol and got hottie... i got flu though to so i think i just feel worse coz of that

princessk09 profile image
princessk09 in reply to Lulububs

Yeah I’ll try the hot water bottle later on

I’m sorry you’re having such a difficult time and I know what it’s like to be in constant pain. I had a lap last June but since my miscarriage my pain has returned worse than ever. My fertility doctor has referred me to his colleague who is a general gynae as he only now works in fertility.

When I had a ultrasound scan last November which was ordered by my fertility doctor the scan was much more through than ones I’ve had done via GP and was only 3 weeks from referral to scan appointment much quicker too!

I guess what I’m saying is this referral coming from a gynaecologist will hold much more whack than one from a gp- if a gynae has identified an issue the other gynae is far more likely to take notice. This is the best outcome you could’ve had- I’m sure the referral will pushed through quicker especially as he knows you’re in so much pain.

My referral from my fertility doctor to a general gynaecologist - 2 months- I’m seeing her this Monday. I can’t believe how quick it took- when my gp referred me to my fertility doctor = 4 months!

In between now and the appointment see your gp- try to get this pain managed. I know it’s not resolving the issue but just to make you feel more comfortable. There is a painkiller you can take for period pain- a one that a gp can prescribe. As others have suggested look at your diet- I have cut out gluten and lactose and it has eased the amount of pain attack’s that I am getting. My fertility doctor advised going gluten free and lactose free as that will ease some symptoms. Those two tend to make endo worse.

Good luck and I hope you get an appointment soon xoxo

cmbxm profile image
cmbxm

Personally I’d see if the NHS can do your lap as you’re only 18 and even if you did convince your parents into spending all that money on a lap, I saw someone on here say that they only find visible endo on 24% of women under the age of 25 or something stupid like that. Just seems like it would make your situation at home worse if it comes back clear, and you can’t force your parents to pay as it is not your money, have you tried asking your GP for stronger pain killers like tramadol? If you did chose to go private do it with an endo specialist not a general gynae as they can miss something and there’s not a lot you can do about it if they clear you of having it, you’re back to square 1, trust me I speak from personal experience, don’t make the same mistake i did!

Sorry you feel so awful but just remember it isn’t your fault you’ve got this disease! xx

princessk09 profile image
princessk09 in reply to cmbxm

I’ve tried everything to help the pain, but nothing does

Yeah I’m refusing the surgery if it’s not an Endo specialist as I can’t have anything missed

cmbxm profile image
cmbxm in reply to princessk09

Good! Can’t bare the thought of some gynaecologist sweet talking you and promising you everything you want to hear just for him to say there’s nothing there and take your money! x

princessk09 profile image
princessk09 in reply to cmbxm

My gynae at spire is an endo specialist so I’m gutted I can’t see him for the lap.

I’ve just got a referral to North Manchester and i don’t know how long the wait is or if they are endo specialist xx

cmbxm profile image
cmbxm in reply to princessk09

Fingers crossed they are! Should be pretty quick considering it’s a referral coming from a private hospital x

Lots of people go private for their second or third + laps as there's not a lot of point for the first one unless the consultant is sure it's endo as it's a waste of their time and money. I had an NHS lap and they found nothing so I've requested the pictures, which can always be shown to a specialist if I want to go down that route, and in the mean time I'm working on a better diet and pelvic floor exercises to minimise my pain, then if I feel that that's still not enough, I might consider paying for a lap privately.

A lot of gynaeos will treat you for endo if they suspect it, I was told they didn't want me to go for a lap until I was at least 25 or considering starting a family because if there was any there, it would increase my chances. Also some people only have the one surgery and if it's not as bad as first thought/not there at all/manageable, they don't have to have any more.

I'd get on the NHS waiting list asap and maybe contribute some of your own money to it to ease the strain on your parents if you really want to go private.

Gluten and lactose free helped me loads and I'd suffered pain constantly til I ditched those, fatty food and high sugar content is a really big one for me I'm working on. Places like Aldi or other budget supermarkets sell a lot of good quality veg very cheaply and there are plenty of meal ideas for things that take under half an hour, they've really been life changing! x

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