Possible ovarian cyst- age 21 - NHS pelvic ultrasound waiting times

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I've been suffering pain in the womb/ovary area for a few months, it's a general aching pain/soreness with stabs of sharp pain, although the sharp pain has been getting more frequent, along with pain at the top of my thighs, to the point where I was in excruciating pain the other day and literally couldn't move because even leaning forward was causing me pure agony. I'd been putting off going to the GP for a while but this made me realise I had to get an appointment.

The GP did a quick pelvic examination and said he would refer me for a pelvic ultrasound. I asked him how long I would have to wait for the appointment, and he said 'two weeks, three at the most'.

Received my referral letter in the post this morning, asking me to call up to arrange the appointment. The receptionist immediately told me they had a very long waiting list and asked if I'd be willing to travel to a clinic a bit further away to get an appointment sooner, to which I said yes, as I'm obviously in pain and worried about what is causing the pain. Anyway, my appointment isn't till nearly the end of JUNE, so in 3 months time as opposed to the maximum 3 weeks time my GP told me.

I've been researching my symptoms, which I know isn't always the wisest, and 'ovarian cyst' seems to be coming up a lot, along with a few other womb/ovary problems. I'm very concerned that whatever might be causing the problem could get more severe within the 3 months I have to wait for an ultrasound. I've looked it up and I understand that sometimes ovarian cysts can be cancerous, although it is rare among my age group (I'm 21), but I'm still very worried that if it is cancerous, surely it could get a lot worse within 3 months?

I'm honestly surprised the waiting times are so long for a diagnostic examination, I knew the waiting times were bad for operations, but I wasn't expecting this. Surely if the waiting times are so long this could be very detrimental to the health of some patients, for example those who turn out to have cancer, when early treatment is very important?

Can anyone tell me if they have experienced similar, in terms of waiting times, or of symptoms? Those of you who have been for ultrasounds, is 3 months a normal waiting time, or am I right to be surprised? Has anyone ended up going for a private scan instead?

Also, in the 3 months that I have to wait, if there anything that will help to control my pain? My GP advised me paracetamol, hot water bottle, and drinking lots of water, all of which I've been doing anyway, but have you got any other tips? For someone who is used to leading a very active life, this pain is really interfering with it, plus it's also having a bit of a detrimental effect on my sex life, as I'm sometimes in too much pain to have sex, or after I have sex the pain will get worse, which is very frustrating for me and my boyfriend.

Any advice, information, similar experiences, or reassurance would be appreciated smile

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9 Replies

  • Posted

    I've got the same symptoms as you -went to my GP at beginning of February when the pain started & was variously misdiagnosed with a UTI, gallstones,IBS & was asked if it was psychological! I finally got sent for an ultrasound which confirmed a dermoid cyst. My surgery managed to not send the ultrasound form to the right place for a couple of weeks, but I then got my appointment in a weeks time (I'm in Sussex). I had a gynae appointment yesterday where little happened apart from bloods being taken & told to return in a month for a further appointment when hopefully they might put me on the waiting list for surgery.

    I kind of wish I'd gone to a&e when I first had the severe pain, rather than wasting time going back & forth to my GP as I feel it might have fast tracked things a bit. I've been taking codydramol for pain as paracetamol wasn't touching it.

    I hope you get your appointment soon x

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  • Posted

    Wow, I felt the need to join this forum after seeing this post as I completely understand. I am also 21 and I have found that we are dismissed for our age as ovarian cysts rarely turn out to be anything. I will share my story although I plan to post my story as its own thread later on.

    I currently have a cyst measuring 4,6cm on my left ovary and it contains a solid focal lesion just under 1cm. The NHS have really been quite silly with it all. They got my address incorrect (even though the one my GP sent was correct) for my first ultrasound referral so I missed that appointment. I waited about a month or so for it and that was in Southampton. You can view waiting times online usually or ring - I work in private health care (aside from uni) and i spend alot of my time ringing up NHS hospitals about waiting times! Also, try to look and see where is best and ask your GP for a referral for the closest and quickest one.

    However you may be met with resistance - I attend a hosp in Southampton and they have been useless. Although the ultrasound department are lovely (my last sonographer let me see the screen and explained everything!) my registrar has been useless. I had a follow up scan two weeks ago and he initially said he didnt need to see me until June. I made a fuss and nothing changed. Then suddenly yesterday I got a letter 'apologising' for cancelling my appointment...but it's now been brought forwards to next week so no complaints.

    What I am saying is due to our age and the nature of ovarian cysts, the NHS tends to just try to 'monitor'. They don't like to rush to surgery with cysts and we often have to fight through pain and repeated diagnosis of IBS before they accept the pain these cysts can often cause.

    3 months is unfortunately the usual with the NHS. Private scans tend to cost around £200-£300 if that's something you'd look at, but understandable very pricey. However, I did read that there are some clinincs in the UK which perform them for cheaper. It's worth looking if you are concerned.

    My symptons include quite awful bowel stuff - painful bloating, gassy, changes in my BM so my registrar at the hospital said 'most likely IBS, take this medication'. It hasn't been beneficial and he was very dismissive. My other symtons are pain in the area, back pain and irritibility which may or may not be linked haha.

    I am sorry for the ramble - perhaps message me and I will share my experiences so far. I've been active on a US board as of late so it's nice to come to a board who understands who the NHS are!

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  • Posted

    Hello,

    I've been in pain for about three weeks now. I visited my GP after a week of feeling nauseous, tired, very down and generally unwell. He diagnosed me with a Kidney Infection and gave me some antibiotics. 3 days into them, I had to call 111 as I was in so much pain from this sharp stabbing pain in my abdomen that I couldn't move. My flatmates found me on the floor outside my room crying. I got an emergency appointment with a GP that night and he took me off the antibiotics in case it was a side effect.

    Long story short, 6 pregnancy tests, 8 urine samples, 2 blood tests,7 doctors appointments and 2 trips to A&E later, only did the latest doctors I saw agree its not a kidney infection. Despite none of my urine samples showing it to be a kidney infection expect the first one (which has been lost by their lab might I add).

    They have finally agreed it is likely to be Ovarian cysts - which run in my family. I've missed 2 weeks of university, including a week of observations and may be facingrepeating my entire first year of university. I am also facing losing my job as I cannot stay awake for more than 8 hours in the day (due to pain - I also have a chronic pain condition so with this pain on top o cant managae anymore) and am constantly getting stabbing pains.

    Still haven't heard about the urgent scan that a doctor sent me for 2 weeks ago.

    I don't think the NHS take young women seriously at all. I spent the last 5 years of my life in hospitals being told that I had growing pains which turned out to be a serious disability. Just annoys me that I'm wasting more time in doctors, only to be told that my pain is nothing again.

    Hope all three of you get treated soon and that you aren't in pain much longer!

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  • Posted

    Hi,

    I am also 21 and have been and still am going through similar situation to you all! I have similar pains and symptoms, but to cut a long story short, went for ultrasound after waiting for 2 months and saw a consultant, found nothing, then sent for mri scan after waiting yet another month and now waiting for results! It's such a joke how young girls are treated within the nhs, not taken seriously and how long you have to wait for everything! I've just noticed that you posted over a year ago, so was just wondering how you all got on in the end, and what the outcome was/is, as I am in a similar situation?

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  • Posted

    I have the same symptoms. Did you find out what was wrong?
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  • Posted

    Im exactly where you are right now. Im 22. Dr has referred me to get a ultrasound as he suspected an ovarian cyst, my doctor said a few weeks.

    Its so painful. He didnt even give me any painkillers.

    Into my first week of waiting and im already getting impatient!

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  • Posted

    I know this is a slightly older post but I still feel like adding my own story as I'm also 21 and anything I can find is about woman who are 40+. I’m yet to be diagnosed but still have had near six months of joy with some of the NHS’s finest. - I’d like to apologise for the length before I begin, I tend to ramble!

    So this all begins in December 2015 I went to my GP with unusual bleeding (constant for a month) and general cramping and bloating symptoms. Personally I have to search symptoms before anything so I had gone in with a fair understanding it was either PCOS or a cyst/growth of some sort that I was dealing with. Both of which can be controlled by going on birth control so that was my main goal, getting something to help! The GP was lovely, (despite being completely clueless on the matter, he had to use two medical dictionaries and an online search to keep up with talking with me) but he listened to my concerns and agreed that it was most likely PCOS. He took blood to test for hormonal issues and sent a referral to the local hospital for a scan (transvaginal ultrasound). 

    Blood came back clear, ruling out PCOS, and two days before Christmas (roughly 2 weeks later the GP appointment) I got a letter from the hospital telling me that my scan was rejected and I had to contact my GP. Festivities, my birthday and university work caused me to put this on the backburner for a month or so (aka the head in sand approach). 

    Anyway, I contacted my GP office and got an appointment with a second doctor. This time the doctor seemed more knowledgeable, but was much less willing to send me for a scan. I pushed on the matter and she said she'd send the form away for the 'correct scan' this time which was apparently an external ultrasound. She'd claimed that the pervious GP had filled out the type of scan wrong which caused it to bounce back. 

    She also advised to schedule me for a pap smear and another blood test with her (not a nurse as to ‘make sure the nurse doesn't miss anything that a doctor wouldn't’ - I didn't really think that's a thing, but I went with it) while I waited for the scan. I left feeling like I was in better care now as this seemed like a good idea. 

    A week of stressing goes by and I arrive at the appointment. The doctor clearly doesn't remember me, which is fine, they're busy people. I do start getting annoyed when I need to remind her why I was there and she didn't have any memory or record of advising for another blood test. Clearly she had written no notes on my record which further annoyed me but I gritted my teeth, at least I remembered, right?

    As I was leaving she told me once the results come in for the smear (which I was advised would most likely be inconclusive due to the amount of blood in the sample (sorry if tmi)) she'd review the results and see if I needed to be sent to a gyno - not what we'd discussed in the pervious appointment at all. I asked if she'd sent the form away last week for my scan and she said no, she was waiting for the results.

    I was just completely fed up at this point and left. I hadn't told anyone about any of this as everyone I'm close to is already dealing with enough with final uni year stress (including me) however I couldn't handle it. I called my friend walking home and told her a sugar coated version. I felt so helpless and like I wasn't being taken seriously at all.

    Fast forward to last week, mid-April, over five months since my first GP appointment and I finally saw a gynaecologist. I was in the appointment for less than 3 minutes. She ran through my history and I explained my symptoms which have gotten worse over the past 5 months, spreading to thigh pain as well which is a real concern.

    She said it was most likely a polyp in my uterus or on my ovaries. 

    I was prescribed the pill to help with symptoms (FINALLY!) and told that I would need a transvaginal scan to check what's going on. I complained informally to her that that's what I've been wanting for 5 months, her response: 

    'Yeah, GPs are big scaredy cats about doing things themselves.' 

    That was it. The only explanation I was given for the last five months of pain was that GP’s are big scaredy cats’. I left the hospital in a daze. I was so emotionally and physically stressed from the whole situation I went home and cried. I've been put through 5 months of waiting in pain all for 3 minutes with a doctor who finally agreed to help me. She didn’t even run a test! I was just given the pill! I can’t express how overjoyed and angry I am at this whole thing, mainly angry. 

    I was speaking to my friend and she remarked how it would have been easier for me to get a prescription for methadone if I’d said I was a recovering heroin addict than it was for me to get put on the pill to help with this pain which sums up the situation perfectly.

    If I want on the pill for contraception it’s completely fine, if I want on it to help supress pain, suddenly everyone recoils and refuses. I just don’t get it.

    I’m approaching the six month mark of my first doctor appointment, almost 7 months since my symptoms started and finally I’m being helped. Still no answer as to why this is happening, but at least there’s hope I might someday find out… rolleyes

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  • Posted

    I am 55 years old and was diagnosed with a dermoid cyst over 20 yrs ago. Granted mine didn't cause any pain except during my periods.  My doctor suggest i have it removed and scheduled my surgery right away. I cancelled the surbgery and never looked back.  I had a virtual scan a few months ago and its still there and without my permission my doctor scheduled me for surgery. Again i cancelled. Mine has never bothered me. Menopause didn't even cause any change or discomfort

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  • Posted

    Hi I also was put on a waiting list with a very long wait, it is frustrating. It was only when I attended A&E for a second time and unfortunately had to really push them, despite being in agony, I was very reluctantly offered an emergency ultrasound the next day. I hope all is well. Keep pushing.

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