Private scan for ovarian cysts?

[User415373]

I'm feeling so desperate after days of pain and sickness, I'm considering paying £150 for a private pelvic health exam.
Background, normal periods my whole life (though barely any in my 20s as I had back to back implants). Had a baby in 2021 and one in 2022, finished breastfeeding in 2023. No hormonal contraception since. Periods seemed to get worse but I figured I barely remembered a proper period so thought it was normal. 2 months ago (July) I had awful pain like labour, then sudden and severe abdominal pain during my period. Dr suspected either burst cyst or appendicitis so sent me to a and e. I waited 10 hours for them to send me home with a ultrasound booked in a few days. By the time I had it I was feeling much better but still bleeding (day 5 of cycle). Ultrasound was normal. I also had a CA125 test which was apparently normal but I don't know what the result was. I didn't see the Dr again but got a referral for gynae in the post which has a 7 month wait list.
August period was fine.
September is awful. Last week my breasts were so sore and I felt so sick I thought I must be pregnant (I'm not). Period started and has felt like constant labour, I have also been feeling very nauseous. Bleeding has stopped today after 5 days but pain is still there, cramping, back pain, sickness are the main symptoms. I feel stupid going back to the GP (what can they do now I've been referred?) I am curled up all the time and basic tasks are a struggle.
Is it posible that a cyst was missed, or that one has burst and was therefore not visible? Could another develop in 2 months?
I'm generally not a worrier and have a high tolerance for pain, but the last few days have been like labour (like a 5/10 contraction but constantly).
Should I just wait for the referral?

Personally I would go private. I paid 500 for an ultrasound and consultation with a gynaecologist recently and it was very much worth it.
I think it’s good for your peace of mind.

I have had issues since 2021 and its taken a long time to get any help. I have been suffering with pelvic pain and at first had an ultrasound and was told all was fine, however the pain continued and I had a ct where a cyst was found. They decided to leave it as it was small however it has now grown and im on a wait list for surgery.

However the pain has increased but I now get 2 distinct pains. I can tell what the cyst pain is and the pelvic pain I get is different.

It took until the second time seeing gynae for them to suggest this is most likely endometriosis. No GP nor the first gynae I saw in 2021 had ever suggested it, they even recommended it could be gastro and sent me to them.

But talking to the most recent gynae doctor she is confident its likely endometriosis and they are going to check for it during my surgery.

I had the contraceptive implant until late 2020 and she thinks having that removed could have caused this to flare up. My periods got heavier, less predictable (they used to be very regular and can now swing a week either way). I get pain all through the month but is worse during my period and mid cycle. I also get some bladder and bowel issues that could be related.

The problem is, if its something like endometriosis, this wont necessarily show on a scan. Plus my cyst was missed on the first scan.

So I think its worth getting a GP onside to do further investigations as even another private scan may not be conclusive.

I do hope you get to the bottom of it as I essentially have had to wait 4 years and just have it get worse before I got any help and its been beyond frustrating being sent back and forth between departments and I had over a year where I was just left as no one wanted to take responsibility (gynae said it was a gastro issue and gastro said it was gynae, and the GP didnt know where to send me so I basically had to wait for it to get worse).

@Hysterectomynext thank you, I would love to do that but unfortunately £500 is too much for me. The private scan is £150 and I could at least take the results to the NHS?
@anotheruser124 I'm so sorry you've been through that. It sounds awful. My GP is great but I'm not really sure how referrals work...now I've been referred to gynae can he refer me for a CT scan separately or do I just have to wait for the gynae appointment now? I have had digestive issues too, often have diarrhea all in the lead up and during my period now which never used to happen.
I also had an abnormal smear at the start of the year and am wondering if that could be related.

Absolutely- if you can just pay for the scan alone then do that and yes if it shows up
anything of concern you can be sent to NHS.
it was NHS doctors in A&E who advised me to go private because I wasn’t being seen and I needed investigations. It was very good advice.

the consultation was the most expensive part and the scan was something I had at the same time. So 500 for both.

What was the follow up for your smear? Did you have a colposcopy? I'd be asking about treatment options so look into getting pain meds, temporarily during your period something like Co-codamol perhaps antiemetics if the sickness is persistent. Also ask your GP for mefenamic acid and/or naproxen (NSAIDs which help a lot) and tranexamic acid (helps reduce heavy bleeding) - you need to start taking it days before your period starts so that it can work at best capacity.

It sounds more like adenomyosis where the lining of the womb grows into the muscle of it, but
is localised to the uterus only, it can be picked up on an MRI. It could also be fibroids or an ovarian cyst. I'd be getting an MRI with contrast if you can and perhaps a transvaginal ultrasound as well. Then take the results back to the NHS.
https://www.nhs.uk/conditions/adenomyosis/

@TheLivelyViper , sorry I shouldn't have said abnormal I meant they detected HPV so I have another smear in a year.
I've been taking Ibuprofen and codeine/cocodomal. I wouldn't say the periods are very heavy but it's hard to know what's normal. The ultrasound I had in July was TV and showed nothing. Though I don't know how it normally works but the sonographer told the SDEC (same day emergency care) Dr that it was fine, he then discharged me. I presumed a specialist would review the results but maybe that's not how it works when you go in via A&E (not that I don't think the sonographer is an expert I just thought someone else would look).
It it worth me trying to find out what the CA125 result was, can that be a marker for cysts and other conditions?
Thanks for that link @TheLivelyViper I don't have bleeding at any other time of the month or pain during sex but the intense period pain is definitely a symptom. I'm guessing I'll have to wait for my referral to get an MRI, the Dr can't refer me for one separately?
I'm going to the GP again today as the pain and sickness has been awful overnight and this morning.

Oh right that makes sense, at least the smear is all sorted.

Yes for A&E, it is emergency care, if the ultrasound is clear it isn't checked by anyone else as sonographera are trained in reading those scans. They also won't do a referral unless there's a needs on the day.

CA125 can be helpful, but I'm assuming those results have already been read and if they were higher would have been flagged but do have a look yourself to double check. Though CA125 doesn't rule anything out on its own. If you see the GP definitely ask for antiemetics and some stronger NSAIDs, so instead of ibuprofen ask for naproxen or mefenamic acid to try.

If you want the MRI on the NHS, you'd have to ask the GP to refer. But if you could private I think you can just ask for the scan immediately.

@TheLivelyViper that's all so helpful, thank you. I can't see the ca125 result, it just says 'normal' on the NHS app. I might ask the GP about that today.
I can't afford an MRI unfortunately. I could stretch to an ultrasound but not sure it will be worth it. Obviously if it's clear that's great but then I'm no closer to finding out what's wrong.
If I can get some better pain relief today that would help enormously.

Perhaps ask the GP about either a CT with contrast or an MRI with contrast. See what they say, if they aren't a fan ask them to explain why they don't think it will be useful. Then instead ask for another transvaginal ultrasound instead, they're cheap and the GP is likely happy to refer you for one, so honestly I wouldn't pay.

Definitely bring up getting antiemetics (they help with vomiting and nauesa) and pain relief - NSAIDs are pain relief, they are anti-inflammatories and pain relief, definitely ask for either mefenamic acid or naproxen. Then anything else you want to discuss, be clear, have a list on your phone in advance, perhaps go through this thread, also make sure you ask about their thoughts on diagnosis and the next steps for treatment and investigations they want to take as well.

I agree with @TheLivelyViperthat asking the GP about a CT or MRI is a good option.
The issue is you could pay for an ultrasound, that shows nothing and gives you no further answers because there are a number of things that wont necessarily show on an ultrasound.

I think if you are going to pay for anything privately what could be an option is a private gynaecology appointment. They can then potentially refer you back to the NHS for further tests etc but it skips the wait. I believe depending on area they can be around £200-£250ish.

You can also ask your GP if they can expedite your referral on the basis of worsening pain, although when I had mine expedited it only sped it up by a few weeks but any faster appointment may be worth it.

As far as I'm aware OP, if you have a private gyne consultation it won't skip any queues in the NHS. Even if they recommend x scan, you will still need to see NHS gynecologist to get that scan referred. So it may give you some ideas, but I'd wait to see NHS gynecologist and then if you think they are missing things, the appointment isn't good, then perhaps get a private one. Otherwise if you have it now you won't have anything to compare it to, and the NHS won't sped you up for any tests. It would only be if you had x scan and it found something that it could do that.

If your pain is worsening sometimes they can expedite the appointment but that depends on the conditions of others and they do triage them. I'd still ask the GP though as its worth asking to see. Even a few weeks earlier is something.

So I saw the GP just now. He is so kind and caring.
He reviewed the scan I'd had and said he was sure that if there was any evidence of a cyst, they would be able to see it even if it had burst so he's almost certain it's not that. Therefore he wasn't sure another TV ultrasound was the way forward. He suspects endometriosis and thinks I need a laparoscopy. He has made another referral through a different service which has a 6 week turnaround. My hospital referral is still open incase that comes sooner. He's also ordered bloods again including CA125 (the hospital told me they did this but he can't see the results anywhere) and also asked me to drop off a stool sample to rule out a digestive/bowl cause.
He's prescribed some naproxen and more codeine and told me to go straight back or to hospital if it gets worse.

What service has he referred you to? Normal you'd need an MRI before the laparoscopy, it may find something but also may not. That's good he's prescribed more higher pain meds as well and a stool sample. If the stool sample finds something then perhaps push for a colonoscopy as well. I'm glad he was very kind and seems to be very useful as well so that's good.

Medication depending on how severe your pain and symptoms are (can be opioids, NSAIDs) and contraception and hormonal treatments (gonadotrophin releasing hormones). The stages of endometriosis are actually about how it impact your fertility - so a higher stage more impact on fertility but not pain. So a person with stage 1 endo could be disabled by it and have severe complications but a person with stage 4 may not.

I recommend asking the GP to try the pill and/ or mirena coil can be amazing with heavy bleeding and pain. It thins the uterus lining so then there's less bleeding and also cramps. It took a while for me to settle but overall it has helped my bleeding quite a bit. I will sayinf having endometriosis and adenomyosis and other thinfs myself, endometriosis is a chronic illness and cannot be cured, after surgery it will grow back, it cannot be excised from everywhere to leave organ functioning intact The main symptom of endometriosis
is not actually period pain because endo is not a period condition - it's a whole body inflammatory condition where the endometriosis tissue even produces its own oestrogen and the pain is felt throughout the month, so does explain your persistent pain.

I have endometriosis, adenomyosis and other unrelated conditions, I am disabled by it. Cannot walk or stand lots. I live on high dose opiods (I wouldn't if I didn't have to but it means I'm not completely bed bound and allows me to live my life). Definitely try and stay on a low-dose if you can but if the pain is worse, then look into stornger opioids then Co-codamol, personally a mix of that tramadol and sometimes some morphine as well. Again I've maxed out NSAID doses and have chronic cycles of constipation and diarrhoea (going through both gastrology and colorectal surgery) and severe bladder issues including incontinence and an overactive bladder (I see urology as well). Make sure you push for a diagnostic laparoscopy but an MRI with contrast wouldn't hurt to push your case. Also look into adenomyosis which is more easily spotted on an MRI as it could be that as well. I will say from my consultant’s they have said 50% of people even with an endo specialist have a laparoscopy and find nothing but it means they can go down other routes with pain management, gastro etc. So definitely consider a few things at a time.

The links below have much more detailed and useful information.
https://www.leedsth.nhs.uk/patients/resources/endometriosis-2/
https://www.nhs.uk/conditions/adenomyosis/

That sounds really positive and sounds like you have a great Doctor. It does sound endometriosis like so hopefully if gynae agrees with that, they will arrange a laparoscopy. Its worth asking what the surgery wait times are, they may suggest trying something hormonal to see if it helps if the surgery waits are long.

I hope you get some answers soon.

@thelivelyviperI never had to have an MRI and am having a laparoscopy, no one has suggested an MRI at all, I also had a friend who had endometriosis investigations and they went straight to laparoscopy after ultrasound. It may be area dependent.

The same with NHS vs private in terms of skipping queues as I saw an NHS gynae who also operates privately and she confirmed that a private appointment could be used to refer for tests, as did my GP. I have also seen another specialist privately who was able to give test advice and these were triggered. So may be area or Doctor dependent but it certainly helped me in the past.

We shouldn't have to do this to get help faster but it does sometimes seem the only way and is possible. It is always worth asking the question first though and it sounds like the OP has a great GP who would likely answer those questions before paying out for anything.

@TheLivelyViper that sounds so awful for you, I'm so sorry you've had to go through all of that.
He's referred me to a service called harmony/harmonie which is new in my area apparently. He didn't mention anything about an MRI but maybe whoever I get referred to will suggest that?
What's strange to me is how suddenly this has come on, it seems to have come on in 6 months. Is it possible that pregnancy/years of contraception have hidden the symptoms?
I just have a horrible feeling they won't find anything (not that I want an endo diagnosis of course).
I'm open to trying contraception to control symptoms but I came off it for various reasons as well so it's weighing that up. I also want to monitor my symptoms while I wait for an appointment so I have more evidence.

It can be so different I know from 11/12, it started and just got worse as it is a progressive disease and thats my experience. I haven't had any kids, so not sure on that side of it. I've heard for a few people who are asymptomatic till your age, not much is known about it tbh. But sometimes if you have been asymptomatic to a point less meds etc are needed as your disease hasn't progressed as much. Though it depends. Push for the diagnostic laparoscopy and excision of endometriosis tissue if they find it, as soon as you can.

I haven't heard of that service before, are you not in England as it may be something specific to your area. But 6 week turnaround is great, do you know the qualifications of who you'll be seeing? As in consultant gynaecologist etc? Yes monitor your symtpoms well, maybe use a pain diary as that can be very useful diagnostic evidence. Hopefully you hear from them soon and the ball gets rolling.

I'm in the UK, in the midlands (although a very rural area with normally a lack of services). Google has taken me here : https://www.healthharmonie.com/gp-referrals
I have no idea about who I'll see or what their qualifications are. Hopefully I'll get more info when they send the appointment through.

@TheLivelyViperit sounds like you have been through a lot with this, sorry to hear you have struggled so much. Do you mind me asking if you find anything consistently helping? I cant take NSAIDs and at the moment ive been given cocodamol but my GP doesnt seem to know what else to do. I tried the mini pill but my moods got really bad and I felt lousy. The gynae has said after my surgery she will put in the mirena coil to try and help but I likely have 6 months still to wait for surgery.

@User415373my gynaecologist that I saw said it follows a familiar pattern for things to worsen when stopping hormone contraception and thinks thats why I got symptoms start in 2021, as I had been on contraception since 14 to help with bad periods but wanted to have a break from hormones, but she thinks the hormones could have been controlling things and stopping them made things worse. So it could well be the same for you. I think mine started getting worse about 4-5 months after my implant was removed, not sure if yours was a similar timeline. This last year and a half has got significantly worse though.

The pill can indeed mask the symptoms of any underlying gynaecological
issues like endometriosis or PCOS.

I would also suggest keeping a daily pain and symptom diary particularly if you don’t already do this.

I use a mix of lots of medication, I use opioids, sometimes Co-codamol but mainly tramdol and morphine, I use it as needed so it can range but it's up 8 a day. I also am on the highest NSIAD dose but also use antispasmodics meds like mebeverine as well, and then antiemetics, I use two at the same time as I have lots of vomiting and nauesa. It's probably just up to a dozen meds, it may not be everyones cup of tea but it helps me manage my life, it is not perfect and I often have to use very high doses or more pills. I also have Amitriptyline which is for sleep when hvaing lots of pain etc and it helps with nerve pain as well.
I'm trying to get a sacral pain stimulater as well, likely through urology but pain medicine/paative care are great on that so maybe ask for a referral to them. I also have issues with my bladder and incontinence so I see urology for that, and will likely start some meds for that as well.

Why do you have to wait so long for the mirena coil? Is it because you asked for specific pain relief, I would say get Co-codamol 1h before, every GP surgery should be able to get a licodaine injection into the cervix and also numbing gel. Why can't use NSAIDs? Are you allergic?

The mirena has helped me a lot with heavy bleeding it thins the uterus lining so there's less bleeding and cramps. So during a menstrual cycle, progesterone is released later on (luteal phase) - it basically tells the hypothalamus and pituitary glands, stop now you've done your job ( which is thinking the uterus lining), let's not go overboard and progesterone maintains the uterus lining (whereas after your period, estrogen stimulates it to grow more). Essentially the hypothalamus, or pituitary glands at that point stop producing FSH, LH - that means that less estrogen is produced. Because when LH and FSH is released it triggers a follow-up of estrogen. So more progesterone means that we can suppress estrogen secretion and hopefully stop more growth of endo lesions and the uterus lining (helpful for periods, as it can thin it so less bleeding and cramps). So mirena/contraception pill mimics the luteal phase. As it exerts a negative feedback loop to the hypothalamus and pituitary glands, which means that the progesterone can counteract estrogen effect on endometriosis tissue across the body and then uterus lining. That's why it helps with symptoms.

I have been hospitalised with a burst ovarian cyst before. The hospital could tell that the cyst had burst because my bloods etc came back as abnormal- they thought I might have developed sepsis. It was visible where the cyst had been when they did an ultrasound.
I would ask your GP to refer you for an urgent gynae appointment to hopefully find out if it’s endo/cysts/something else. If your area is anything like mine, getting treatment will take ages. I waited a few months after initial gynae consultation to see one who gave me pain meds for endometriosis have had to go private for surgery to remove the remaining cysts as wait would be up to six months.

So with the mirena coil they wanted to wait until after surgery but they said they can insert it at the end of the surgery so its all done at the same time. I dont know if they just prefer to not have it in during the surgery.

With NSAIDs I have barretts esophagus so any NSAIDs can worsen the risks of it worsening and increase cancer risk, so they tell me to avoid it. I very very rarely will take some but only when I am massively struggling.

I just need a pain plan until this surgery. The cyst causes intermittent pain but its the day to day pain is getting too much. I have chronic pain anyway but this is just really affecting me. My energy levels have also been awful the last year or so. Until gynae recently no one had suggested endometriosis at all but she felt confident that they would likely find it during surgery but didn't say much about what to do until then for the pain.

Yes that could work, getting in surgery means it will be easier, so that makes sense if you don't want to have it earlier. Oh that makes sense with NSAIDs, I'd avoid them then as you've been doing. You can go and see your GP as they do regular repeat prescriptions for everything, even if gyne gave you something it would have been a temporary one for a few weeks.

Ask about getting some Co-codamol and antispasmodics in place of NSAIDs. You can have that in the lead up to surgery and after as depending on the severity of your condition you may still use them after surgery. It's around 50% of people who even with an endo specialist find Endometriosis tissue some people don't and then will get further investigations perhaps its a gastro issue, perhaps its just adenomyosis on its own which is true for many people, or perhaps you'll then see pain medicine as well for a plan and move away from gyne. But it's the best way to know and then get a plan.

@anotheruser124 BTW antispasmodics are technically bowel meds to stop bowel cramping and relieve urges to go to the toliet and relax the bowel muscle. So not the exact same as NSIADs but will help across the body with cramps etc. If you can't have NSAIDs it's a good replacement to use with Co-codamol.