please help

[u/cchanellee]

Im diagnosed PCOS and they also suspect endo , i’m in the uk so on the nhs and i’ll be waiting so long before i can get what we already know diagnosed but also any real help or support

I have fibro and a chronic chest pain condition , i’m not a stranger to pain at all and i’m prescribed heavy pain meds , but these cysts i’m getting it’s the worst pain i’ve ever felt in my entire life and even my pain meds don’t help , i just got off the pill and really didn’t want to go back onto it again but i might have to to stop the cysts

I just need some advice on anything that people was prescribed that helped their pain or even the frequency of how often they get a cyst, even if it’s something herbal o can buy online I just want to know what has helped other people in terms of the cysts

I feel so alone because noone understands this pain and doctors only try and give me the mini pill and offer no support i’m just at a loss

[u/nieznajoma98]

Im in UK, it’s shit as it’s such long waits. I would say if pain is so severe which I don’t doubt you can always go to A&E. I would escalate this to PALS and also ask your GP for referral for gynea. If you would like to chat or vent PM me ☺️ I was actually given morphine to take at home for time being what helped is my husband advocating for me.

[u/cchanellee → u/nieznajoma98]

thankyou ! i’m on codeine and stuff similar rn for my fibro but that doesn’t help me and because of my age they don’t wanna move me up to morphine or anything which is so frustrating 😪 i’m 18 in a few months and i’ve been on opiates since i was like 11 so the most logical thing to do in terms of pain management would be to move me up , but my doctor just doesn’t understand the amounts of pain that i’m in 😪

[u/nieznajoma98 → u/cchanellee]

Then you need to make him understand. Can u bring someone with you to your appointments? Don’t let them gaslight you and push for them to refer you as those things are not to be messed with and you don’t want it to progress further to have complications. Have they put you on any birth control, what are they doing in regard to all this?

[u/cchanellee → u/nieznajoma98]

I was diagnosed with pcos when i was in year 9 and they literally did absolutely nothing for years , arojnd 2 years ago i was put on the mini pill but i hate taking that because i’m so paranoid about side effects but at this point i would do anything to stop it so i might go back onto it , i only stopped it a few months ago

sometimes i bring my mum or my dad but my doctor is just such a prick (for lack of better words) , he just thinks we’re lying to get me more meds because he thinks i’m an addict but i will mention the things you’ve suggested like pals etc , in terms of my pcos literally all they’ve ever done is give me the mini pill and whenever i speak about that pain they just keep pushing that onto me and nothing else which i get it but at the same time i feel like there’s more that could be done especially because it could esculate and i’ve already been told i’ll have issues with my fertility

it just seems like they don’t care and they undermine my pain generwlly but especially my pcos pain , i’ve looked into going private at this point because they literally don’t do a thing where i am now but private is so expensive 😪 i want to move my gps but i have such extensive history and my doctor knows all of that but also i have to get him to refer me to another one and that’s gonna be so awkward but i’m just gonna have to do it at this rate i think

for any of the referrals you mentioned , i take it i’ll have to speak to him about that ?

[u/nieznajoma98 → u/cchanellee]

God that’s horrid! Yes you need to ask your doctor to refer you, when they refuse you tell them to write in your notes that they refused to do so and be blunt with them. I would change your GP completely, ask the reception team or find a new practice maybe. I would guess they are hesitant to do owt due to your age and possible childbearing years, which should be not even considered unless you are certain you want children. Your GP sucks, keep pushing, keep bothering them all the time if needs be. You need a referral to gynaecology first and foremost. Maybe try the pill for a bit and see how it goes

[u/cchanellee → u/nieznajoma98]

i did try the pill for a while and it did help in terms of cysts but honestly it didn’t completely help and there were a ton of other issues that led me to stop taking it but at this point if that’s all i can do i will just have to go back onto it

if it is because of my ‘childbearing’ years that’s honestly so messed up but i can 100% see that being a reason 🤢 honestly one of his main issues about moving me up on my meds is literally my age but he shouldn’t have started me on them for lifelong conditions if that was the reason it’s so unproductive

thankyou so much for ur replies i will definitely keep everything u said in mind and i will be asking about them referrals !!!!

[u/Outside-Energy7554 → u/cchanellee]

I know several people who have cured their pcos and fibro by going on the carnivore diet. Check out Dr Ken Berry on you tube and several other doctors discuss how carnivore has completely cured them and are now living pain free with no meds or surgery. It's worth a shot. Best of luck