Adenomyosis help!

[Healthpcos]

Hi, im new here so please bare with me.

I feel like I don’t know where to turn. Background, I’m 30 years old and was diagnosed with PCOS when I was 24/25. I’ve since had two children. After my first was born, I started having some irregular bleeding, went to the GP and they sent me for a scan which picked up Adenomyosis. I didn’t really have any other symptoms and never even heard of adenomyosis before so just carried on with life.

After my second was born, I started having really prolonged periods around 2 weeks (usually for me it’s 5 days). Anyway, I’m currently on day 18 of bleeding and it’s showing no signs of letting up. I went to the GP where they done an examination of cervix (grandmother died aged 43 from cervical cancer) and then some general swabs. And they’re sending me for another ultrasound scan. They don’t seem bothered about my prolonged bleeding but it’s worrying me. At what point do they/can they intervene if it just continues?

To say the least, my periods are wiping me out! I’m exhausted, feeling so drained. I have two kids ages 2 and 10 months and I’m struggling. They don’t want to iron test me or supplement me. I don’t really have much of a history with iron deficiency apart from in pregnancy but I just don’t know where to turn. There is such little information online and I keep being told there isn’t much research into it.

How do you handle this? I can’t bare going through this all the time. I’m trying to stay off hormonal contraception because I’ve struggled to find a good fit.

Any help/advice/directions would be hugely appreciated.

[Rainbow2468]

Hi hopefully they will help more after your ultrasound, I have the issues you're having, but they found cysts, adenomyosis, fibroids and endometriosis at my ultrasound, all I had back in twenty eighteen was adenomyosis. But I was 48 when I had my first scan again in twenty twenty two. I'm currently on prostrap injections which are working well. I was on noresterone but they took me off it put me in the mini pill but that was horrible, just bleed all of the time. Please ask any questions and I'll get back to you. So sorry you're suffering sending you a big hug x. Ooh I'd ask for a test for anemia as you're bleeding a lot too x

[Healthpcos in reply to Rainbow2468]

Thank you for getting back to me. I’m hoping I will get my appointment soon and I think I will feel a lot better once I’ve had that. The thing that’s effecting me the most is the prolonged/heavy periods. I’ve always had quite strong PMS but now it’s being drawn out and I’m exhausted.

I do have a very basic private healthcare package so I might contact them to see if they’ll cover anything but I’ve just been made redundant while on maternity leave so money is tight to say the least.

I’m going to push for a blood test for anaemia I think. Thanks again!

[Rainbow2468 in reply to Healthpcos]

Hi your most welcome, what a lot to be dealing with at the moment. And I totally understand, the bleeding is so stressful and debilitating too. I can cope with all of the other things I have but the bleeding is so stressful. I really hope you get things sorted out soon. Have a lovely weekend xx

[DarkStar85]

Sorry you're suffering. I have adeno and endo. Hysterectomy cures the adeno but not endo. But you are really young. Ive refused hysto at 38. My endo is severe so im having surgery soon. I would be demanding proper investigations to see what's going on. You need a transvaginal ultrasound and and Mri for a detailed picture. Tell the gp you are constantly bloated and needing to pee more, loss of appetite. Those are red flag symptoms and they will send you for tests. Those symptoms speeding things up for me. And definitely need iron test, ridiculous they have refused. Best of luck ❤️

[Healthpcos in reply to DarkStar85]

Thanks for that advice! I’m going to give it a go. I’m always very concious that I don’t want to take the p*ss with the NHS but I also have PCOS and I had to push to get that investigated long enough and I just don’t want it dragging on again. I’m on day 19 of bleeding and it doesn’t look like it’s tailing off at all.

It just feels like my PCOS is less of a problem now but adenomyosis has taken over and it’s more debilitating.

I hope your surgery goes well!

[DarkStar85 in reply to Healthpcos]

Don't feel like you are burdening nhs. You've got chronic health issues and should be taken seriously. Have you tried transemic acid for bleeding? Works well for me.

[Rainbow2468 in reply to DarkStar85]

I totally agree with you, I forget to suggest transemetic acid, it did not work for me but I've heard others say it really helped them. 😊

[Healthpcos in reply to Rainbow2468]

Thank you.

[Moon_maiden]

Hi

See if your insurance will cover a Gynae appointment and scan, you’ll get it quicker. Chances are you’ve got Endo outside of the uterus.

I noticed you mentioned being made redundant on maternity leave, was that just you or was it justified across the company? That can be illegal in some circumstances

[Healthpcos in reply to Moon_maiden]

I paid for a private scan in the end as the clinic is just down the road and private medical want me to drive about an hour.

Yes, they got rid of about 10 of us.

[Moon_maiden in reply to Healthpcos]

That’s great you got it sorted. You’ll get results quickly as well.

Sorry about the redundancy, it’s always a pity when it happens.

[MangoStickyRice]

To answer the ‘how long’ part - The people I’ve spoken to weren’t particularly worried that I bled for 5 months straight - I took myself to A&E for that one in the end - I had fever like symptoms (it was the height of Summer and I was freezing), so weak, dizzy and felt sick. They just wrote a prescription and sent me on my merry way. I hate the ‘masking culture’ in the medical industry - most seem to just want to sort the symptoms on the surface and not explore what the cause is.

‘Don’t worry about the water leak. Here, have a row boat.’

[Healthpcos in reply to MangoStickyRice]

Gosh, 5 months. That sounds awful, I’m so sorry you had to go through that. Yes, I agree there is very much as masking culture and I’m really starting to experience it! I’m sure I’m anaemic, although feeling a lot better since stopping bleeding. The GP don’t seem to care that I’m anaemic at all. It’s annoying because I have an appointment booked for 2 weeks time, to which the doctor won’t actually take the blood, they’ll say I have to book another appointment with a HCA for the blood draw, which will take another few weeks, by which time, I’m going to probably be bleeding again and feeling horrendous.

[Healthpcos]

So, I went for a private scan which has left me more confused. They have sited the PCOS and mild andenomyosis. They also found a fluid filled sac in the endometrium lining. They said it could be a very early pregnancy/ectopic pregnancy due to its location and the fact that my endometrium lining is still very thick considering I finished bleeding 6 days ago. They suggested I did a pregnancy test and thankfully it was negative (I have a 2 year old and 10 month old both via c/s so now really isn’t the time to have another baby and I think I’m done at 2 kids).

They suggested I send the report to my GP and get them to refer to gynaecology. Does this also mean it could be endometriosis? I’m praying my GP accept the private scan report and just do the referal because I haven’t had my NHS scan through yet. I’ve heard endometriosis is painful but I don’t have any pain with the periods, they just last about 3 weeks. My GP appointment is another two weeks away. Any tips on what I need to say to them? I can’t continue to bleed for 23 days straight when I’m on my period, I feel so drained. I’m going to ask about the medication. I’ve also seen the pill can help. I wanted to stay off the pill because it always affects my skin and migraines (tried lots of different types).

[Moon_maiden in reply to Healthpcos]

They should accept the private scan, mine have in the past and other tests. Tell them (nicely, it works better 😂) you want a referral to Gynae, don’t give them a chance to say no to anything, although absolutely no reason they shouldn’t with what’s shown up. You could have Endo, mine didn’t show on any scan.

Keep a list of symptoms and pain, the Endo UK site has a diary to keep a record of those and tips when you see your GP.