Endometriosis, pcos and ultrasound.. been put on a waiting list anywhere from 4 to 6 months?!

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Okay, well I'm a 20 year old female, back in July last year i got diagnosed with pcos whilst back on australia, everything got sorted there and then. Now, i am back home in the UK trying to seek some treatment and seem to be getting no where, I've been push back and forwards for the past 3 months, so finally decided to go to a private doctor for a consult, and he was awesome so helpful and he scedualed me for surgury for a laproscopy and a ultrasound but as a NHS patient under his care. Today I went to my local hospital after recieving my ultrasound from my doctor appointment... but to find my doctor was called on a emergancy and as he wasnt there he couldn't do it and they messed up and filled my slot with someone else... I got told I would be waiting about another 3 months to get a NHS ultrasound appointment and about 6 months for my surgury...

The issue is I am woorking but on and off and strugling to get out of bed in the morning due to the pain and previously had to present my self to A&E due to my pain, I used to consider my self with a good pain tollerence but now i feel like i have non, i barely sleep, it makes me vomit, give me headaches and genuinly feel like im getting stabbed... It is causing issues with family and with my partner as both parties are very very woried about me and i am strugaling to cope mentally and physically as this will have been going on for close to a year by the time this gets sort of somewhere close to sorting!!!

Any help please? 

or personal experiences? 

2 likes, 11 replies

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11 Replies

  • Posted

    Hi Jessica, your story sounds similar to mine.

    I'm 24 and started having a lot of pain during my period last january, I was also in australia at the time, had lots of tests and the doctor suggested that I may have endometriosis. I have had pain every period since, and its not normal period pain, its excruiciating pain where I can't even stand.

    Whilst back in the UK in november I developed constant pain in my left side, around where my ovary is. I too was passed around, I showed no sign of infection yet they wanted to give me antibiotics. I refused and paid for a private consultation with a gynae. He was brilliant, and ordered an urgent CA125 and ultrasound and said he will follow up with me after as an urgent appt on the NHS.

    After all tests were done my GP referred me back to him urgently, however somewhere something has gone wrong and I got a private appt through. I explained I can't afford it and so two weeks later (today) I recieved a letter with my NHS appt...in 5 weeks time. It will have been almost 2 months, for an urgent appt! Unfortunately it seems like this is the norm at the moment.

    I feel for you, I am off work, in so much pain every day that even walking hurts, im dizzy, nauseous and extremely bloated, I can only wear leggings and even my pants cause pain!

    Can you get your GP to refer you urgently? Or can you speak to his secretary to try move things along?

    Hope you feel better soon x

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    • Posted

      Hey there, i'm in a very similar position to you, so similar its crazy just sick of getting passed arround the pains unbearable and I swear my work place don't even understand either making things much much harder and worrry too..

      I've tried to ring my gynie today as i was meant to see him today but he got rushed to emergancy appointment, but ringing back tomorrow to hopefully get this ball rolling, the pain is just so unbearable at the moment esspecially being on my period for at least 3 weeks at a time heavy and painful them of for like 2 days! Plus look close to 6 months pregnant most of the time, as im 5 ft 8 and im 11st up and down don't think thats right...

      Hope you get answers too, keep me posted!x

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    • Posted

      Your gynae sounds very busy! Mine's the same, wonder if it's the same one! Where abouts are you in the UK? I'm in Shropshire. 

      I tri-cycle my pill which keeps the period at bay, but I dread to think what it would be like if I wasn't on it. I'm 5ft2 and look 4-5 months pregnant. I also swell more on my left side where the pain is and have a weird sort of sticky out bit, it's only slightly more swollen than the rest of my belly. I've got burn marks/scars from having a hot water bottle constantly too, it's the only thing that remotely helps the pain. I also have a weird pressure like feeling down low, almost feel like everything is gonna fall out, haha!

      Hopefully they will get the ball rolling for you when you speak to him tomorrow. Keep me posted too, and good luck! x

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    • Posted

      Yeah hes great though but he is the head gynea for the hospitals and surrounding but im blackpool area... and its sooooo bad notoriously for hospital treatment and waiting times..

      Our problems are very much the same, do you get overly emotional or is it just me? my moods fluctuate all the time and its horrible dont know wether im coming or going every day and i have no idea how i will wake up from day to day mentally and physically! 

      x

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    • Posted

      Yeah mine is too, he set up the fertility unit in my area and is all over the place!

      Yep, thought that was just me! I'm so fed up and down, I can't go out or do anything and if I do i'm scared of the pain and being dizzy, it's awful. I feel like it's ruining my life! Even doing something little, like filling up the dishwasher this morning and I was in agony and had to stop! Sex is painful too.

      You're not alone with how you're feeling though x

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    • Posted

      I'm actually so glad i decided to write that huge paragrath no just feel like im not going crazy then, honestly I can get so worked up with my pain ect that i will cry without fail because I can't decide if i want tea or coffee in the morning!!!

      Don't get me started on Sex being painful! How my partner has put up with me I have no clue x

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  • Posted

    So what did A & E say?  My cyst was dermoid, (I'm 57) and I didn't wait long for a vaginal ultrasound, about 2 weeks I thinks.  My GP marked it urgent.

    I don't know much about pcos except what I've read online when I was researching my own cyst.  It seems with younger women and with that condition they wait and see a bit more because you will probably want children at some point.  I think you should insist on getting an explanatin from the doc you saw privately as to what happens next.  You can't go on in pain like this.  I would have thought your GP could get you an urgent referral to see a gynaecologist. What surgery was the private one going to do on the nhs? If he could schedule you on his nhs list surely he can quickly re-slot you in.  Could you mum come with you.  My mum came with me, bless her.  

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    • Posted

      Hello, 

      basically i saw my gp and he reffered me but my family made me go private just to get the ball rolling, as they saw the stress i was under with it all.. basically the private gynea has put me on the list for surgury but they wont look at the pcos (cysts) yet acting like its not a issue as of yet... im trying to push to make its urgent as possible... but its taking its time and they're very reluctent unless paying for it.... just feel like im taking 2 steps forward and one back...

      lucky to have such a supportive family though!

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  • Posted

    You poor little love, have you got some painkillers that work?  Perhaps your GP could give you some stronger ones.  As far as your work goes, just think to yourself that sooner or later someone who doesn't understand your situation now will be in a situation where they don't feel understood. Your family sound great Jessica.  My friends daughter has pcos.  I'm just glad mine was a dermoid cyst and it's gone now.  Hope you get sorted soon.  Try and keep your pecker up.rolleyes
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    • Posted

      Thank you means a lot just wanna get everything sorted and once it is I'd love there to be so much more awerness about it all!! Honestly wouldn't of coped without my family!

      Thank you for your support 

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