DD 18 & Urgent referral, worried sick.

[Allromanticsmeetthesamefate]

DD just started uni in September so living away from home. She has suffered from heavy periods, crippling period pain and mid cycle bleeding for a few months but that this has got worse in the time she has moved to accommodation in a different city and meant that she had to make a GP appointment where they put her on the combined pill to try and regulate her cycle.

As well as making her very anxious and emotional they also didn’t stop the bleeding so she was sent for an internal scan which she had last week.

I got a call from her this morning at work in an absolute state as she opened the NHS app to check if update and it said Emergency gynaecology appointment, cannot rule out malignancy. I reassured as much as I could, it could be a lot of things, the likelihood of it being anything sinister at her age highly unlikely etc but she has since spoke to a GP who has confirmed she has been fast tracked for an emergency scan and biopsy and not now I’m really terrified and actually just quite sad that this is her 1 few months at Uni and she is going through it all this herself.

I wondered if anyone could reassure? The GP she spoke to was factual and kind but did say the results were very unusual for DD’s age and I’m not sure if I’m more or less worried.

As said above it just means it has it's own blood supply and suggests something like fibroids, a cyst etc. Overall it just means 1. it is intrinsic = the blood supply/vessels are built into or or originating inside the cyst/polyp/etc. Vascular supply just means it has its own blood supply, and blood vessels etc.

Often endometriosis on the ovaries can form cysts containing old blood called endometriomas (also known as chocolate cysts) which can be very painful.
So it could be that, or a dermoid cyst etc. It could be fibroids as well.

In adenoymosis, there are cysts called cystic adenomyomas, which are a focal adenomyoma that contains one or more cystic cavities, so filled with something like old blood etc. These can often bleed heavily because they have their own vascular supply.

Oh bless her. I really hope the week flies by and she is able to get on top of the pain x

I have stage 4 endo and also adenomyosis. I was put on an urgent cancer pathway to begin with due to elevated markers and some dodgy looking things on the scan because mine had gone too far. The pain was absolutely unbearable. I would be doubled over in the middle of the night and unable to sleep for night's on end. So many social things and work became impossible. Often not even able to cook or do basic things and the pain would be so bad I thought I'd pass out. It's a good thing she's on these pathways. They are there to rule out the worst case and work back from that but I second that there's a good chance this could be due to endo, adenomyosis or fibroids. There are some brilliant facebook support groups that can guide through the diagnosis process.

I'll just preface this by saying I'm posting from memories of 30+ years ago. (I'm 56). I fainted regularly and embarrassingly in my early twenties, and seemed to be in much more pain than my peer group. GP prescribed Mefemanic acid for the pain and Tranexamic Acid for the bleeding.
I had a biopsy and they were benign polyps or cysts, I cant remember which tbh, which were removed and I had a "scrape" (do they still do these?)
I was really worried at the time, and while my periods have always been heavy (compared to friends) much more manageable after the procedure. I have conceived naturally and have a family. However meno and extreme flooding is now a thing, so heavy periods have always been part of my life.
I'm posting this to give some reassurance from a non medical point of view that its not necessarily all bad news and will be ok.
I hope your DD will be sorted soon, and my experience can give you some reassurance.

I wasn’t diagnosed with endo until my 40s but I had PID and had severe pain and bleeding in my youth… could this be an infection? Is there any chance she’s been pregnant? An infection could cause pain and bleeding like this.
cancer is extremely unlikely and actually the severe pain points away from this but tbh take her to a&e. They will do more bloods and get her scans. Severe pain like that isn’t normal. I’ve had sepsis and 111 tried to tell me to take painkillers. Please just take her to a&e.

Dizziness with so much blood loss and the level of pain is a medical emergency. This is for Scotland but if someone is dizzy with severe abdominal pain, this checker said calls 999. www.nhs24.scot/check-your-symptoms/abdominal-pain/

Regarding the prescription items being out of stock: they can print the prescription off for you and you can ring round pharmacies to find one that has stock. Try pharmacies closest to the nearest hospital first (they are most likely to have things in stock).

Thanks everyone, the replies explaining the medical terms and likely outcomes are so helpful and reassuring. I know the chances are it’s more than likely something benign and easily treatable are high it’s just so hard keeping that forefront when you’re child is in so much pain and there are a lot of serious and big words thrown around.

To clarify DD is definitely not pregnant and she hasn’t had any penetrative sex as she is gay and in a same sex relationship. She was purely prescribed the combined pill to try and regulate her periods and calm them down.

She is in her (1st time) 1st week coming off it to allow for her period which started off as spotting and is now very heavy however the severe pain started before this and just after her scan.

A few calls to make today, one to uni and one one to our local GP to ask if we can transfer care temporarily while she is back at home.

That all sounds like a good plan. I'd look into switching to a pill which she takes every day not one where she takes a week off. As that can cause more heavy bleeding, obviously other meds like tranexamic acid can help a lot with that or northisterone if TXA doesn't work after a while.

But the progesterone only pill or mini pill tends to work better as it things the uterus lining (same system as the mirena but the mirena is localised so has a better impact), and so will reduce cramps, bleeding etc, and because there isn't a break, she can over time get lighter periods. It's often a better option for most people than the combined pill for heavy bleeding etc.

The combined pill did nothing for my daughter except cause depression so after her adenomyosis diagnosis she had a coil inserted. They don't like to do that on someone so young but it has really helped get things under control.

@Allromanticsmeetthesamefate I'm just going through my third round of this within the past 18 months for gynae issues (plus have had two other cancer referrals too - only diagnosis has been 2 types of skin cancer).

Ultrasound is a v blunt instrument, it's useful when they don't find anything but when they do it's not very easy determine benign from malignant.

Along with her symptoms if they find anything the only way to truly know is to have a hysteroscopy and even then it's only after the biopsy results are back that they'll know.

They are pretty sure in my case it's a 4th polyp (benign) to go with the gastric ones I have too (also benign). But it just shows as a mass on the us hence them doing further investigations. Similar for fibroids or any other benign (but horrid) further causes of awful periods. For context I have endometriosis and adenomysis too, which I learnt via the NHS app after my first urgent cancer referral.

I know it does seem very scary but the odds are well on her side, and it sounds like she should get a definite diagnosis out of this too. I can't imagine how different my life would have been had I known the above at her age compared with 49 (3 children and 6 miscarriages later).

Happy to answer any queries or further questions you may have, but honestly they refer everyone whose us shows anything at all - the vast majority of findings are benign.

PS - this will have been my 10+ procedure within the past 18 months so I asked to have it in theatre under sedation and they readily agreed, do let your DD know she can request this if she's concerned. It also means if they then want to do anything like extra biopsies etc you're none the wiser and they don't have to rearrange for a theatre slot

I just wondered how your daughter is OP? Hoping she is ok x