At wits end... I won't stop bleeding

[CinnamonSwirl82]

I feel I need to vent. I'm so defeated. I don't know what's wrong with me and the doctors keep telling me nothings wrong and my tests are normal.

I've been bleeding constantly since Oct 2022. Not even light spotting, or here and there. Its just constant. Constant heavy bleeding.

I'm tired. I feel so drained I struggle to get up on a morning. I'm waking 3 times minimum each night to change myself so I don't leak everywhere. I've ruined our new mattress to which I feel awful but DH keeps telling me it's fine and stop stressing. I can't stop though because I'm so tired and cranky and I feel guilty.

I've had scans done and nothing wrong shows so doctors tell me I'm fine. They've tried taking blood but can't get any out of me (I've probably ran out 🙄). I've been prescribed norethisterone which does stop the bleeding after a week, but as soon as I stop taking it, it comes back and it doesn't stop.

I've had problems with my periods & cycle since I was 12; I'm 30 now. I've been in and out of hospital, 3 investigative surgeries, tried every form of contraception and nothing works, I bleed through everything. I tried norethisterone for 3 months and ended up bleeding so heavily through that to the point I was hospitalised and had liver damage.

I'm at the point I can't see any end to this other than taking my life. A hysterectomy is out of the question for doctors because I've not had kids, despite trying for them for 8 years with 4 failed rounds of fertility treatment.

What do I do. I'm so lonely in this and I'm stuck and I love my life but I can't keep living like this.

Look up adenomyosis. My consultant told me that this can only be diagnosed by MRI rather than a scan. I have a mirena and it changed my life but my sister had ablation and that worked for her.

I wish you all the best for Monday. The gynae I saw at my local private hospital actually listened to me on my initial consultation rather than rush me out the door.

Did your mirena help right away? I think 7 months is a long time for me to still be hoping the bleeding will stop? I keep worrying that it’s something sinister xx

Stand firm op. Took me nearly a year to get the coil out after they insisted I try it and I was bleeding daily for the whole time it was in. They also made me try P.O.P for several months which had exactly the same effect so definitely the hormones.
I had a laparoscopy to investigate my constant bleeding and they said I didn’t have endometriosis, just fibroids. However, when I finally managed to get a hysterectomy it turns out I did indeed have endometriosis. Unreal.

Phone the spire get a private referral. You'll get an MRI scan cost in all around 1k

I really feel for you OP, I have been there and had years of being told it’s just part of being a woman and treated quite badly at doctors - asked very abruptly by one practice nurse why I kept coming back.
I changed doctors and actually fainted one day. Had blood tests and iron was very low, got scanned within two weeks and had huge polyps. I had an ablation whilst I got the polyps removed which I was told helps with heavy bleeding? They also fitted a mirena at the same time. I bled heavily for a week and then nothing since. It now needs replacing and bleeding has started again. I do understand your worries though. It’s so hard.
I would maybe look into ablation.
Keep pushing for help - you don’t have to live like this, it’s just awful. Good luck x

Could you afford to go private or take a loan to do so?
I have had gynae issues for years (nowhere near as bad as yours) so went private and I asked if a hysterectomy would be possible and he said, if you want it, I'll do it.
Literally no questions asked. He's an incredible consultant who takes women's rights very seriously.

In the end I decided not to have a hysterectomy and had a coil fitted but it seems if you're willing to pay, you'll be heard.

If you want the name of my consultant I'm happy to send you a private message.

I bled for 6+ months after having my mirena fitted before it stopped.
I now have a monthly period on the mirena coil but it's so light and only lasts 6-7 days.

Previously, my periods were like tsunamis and lasted 2 weeks.

I'd give it a couple more months x

I had the same problem. Constantly bleeding for 3 years. Found it hard to conceive No1 could find the cause but gynea suspected I had pcos or endometriosis die to dark shadows. Ended up having a lapaoscopy. Stopped the bleeding and don't know what they did to stop it.

I would speak with gynea.. hopefully it sorts it self out.

Or aden omyosis-this is chronically under diagnosed as well. Seems to be a correlation between it and c sections. It’s when uterus lining cells end up in the muscle of the uterus.

I know it's a stupid question OP, but have you had a full blood test done and your thyroid checked? I had some episodes of nonstop heavy bleeding when I was a lot younger and it was due to thyroid issues, I had take to take some hormones on top of the thyroid medication that I was already taking (can't remember what was it) and that worked.

So sorry you're going through this, wishing that you get a proper diagnosis soon

I had what you are describing and it was sorted by the mirena. If you won't consider it then you're defeating yourself.

@Mars27 I haven't! I did query with them whether it could be a thyroid issue but they wouldn't entertain checking as I had a blood test that came back fine, but am I correct in thinking it needs to be tested repeatedly across a period of time?

@WilkinsonM I'm happy it worked for you but there's nothing to suggest it would work for me. How I've been bleeding over the last 10 months is not the same as I've been bleeding over the last 19 years and it's getting worse. All of my hair fell out around the same, amongst other symptoms, to suggest there is something medically wrong. They need to find what that is instead of fobbing me off.

We live in a time where women are supposed to have rights over their body and forcing someone to physically alter their body; guilt tripping and gaslighting them when they don't is not how we move forward as a species. No means no.

A hysterectomy done privately is what I would be looking for now. Is that an option?

This is what I've had to do. After five years of jumping through hoops to get on the waiting list for a hysterectomy on the NHS, I was recently told there'd be another wait of 18 months for the op. Meanwhile, I've ended up in Resus, hospitalised for days while they've tried to stop the bleeding and massive clots, and am close to exhausting my sick pay at work. When you're at the point of losing pay or having to give up work, you're basically forced to go private. As a pp says, they offer payment plans. And they offered a date for the op within a month.

I had a few years of bleedibg for months on end and eventually had a Mirena fitted it was my saviour.

Last year I had a return of seriously heavy bleeding post menopause (or so I thought). Hysteroscopy showed polyps which were removed, and a fresh Mirena was fitted.
.
Have you had a recent Hysteroscopy? If you gave had polyps before, could they not have returned? I

@GCAcademic it's a sad state of affairs when you are not being heard or are suffering greatly, only to be told there's over a year waiting list for surgery or even just an appointment. I don't know what women are mean to do if private isn't an option.

Hope you doing okay now?

Hi, sorry I couldn't come before.
Yes, thyroid needs to be checked periodically. I'm no doctor but I could stack my house that your bleeding is thoroughly hormonal, especially because they didn't find anything physical in your previous examinations.
I would insist on seeing the gynaecologist and discussing a full hormonal profile. Don't even waste your time discussing that with GPs as they don't know their arse from their elbow. Wishing you all the best

I have PCOS and went from practically no periods to monthly periods where most were menorrhagic (super heavy bleeding lasting weeks) and the GP's I saw were useless. It's like they don't know how to diagnose and treat woman's issues! The only thing was they ruled out endometriosis.

I started taking 2000-4000mg Naproxen on day 1 and again on day 2 of my period and it worked miracles for me. I still do get a heavy or menorrhagic period a couple times a year but overall my periods are lighter, shorter and regular for the most part since.

This dose worked for me. I did not take anymore on day 3 onwards.

Always check with your GP if you can take Naproxen and its worth a go.

It's taken me eight years and a very similar experience to be diagnosed with severe adenomyosis (endometriosis but inside the muscles of the uterus)

I was fobbed off repeatedly, I saw a lady gynae who wasn't even going to examine me until I basically had a tantrum and sobbed at her. She agreed to do an MRI (it was private), I think to prove me wrong, but it showed that my uterus is the size of a 32 week pregnancy. She referred me to her colleague who has been absolutely amazing, and he is taking the bastard thing out next week. He was the 9th gynaecologist I saw, all the others told me to stop moaning as periods hurt

I really hope you get some answers soon op, the state of women's healthcare in this country is shocking and what makes it worse is that many of the people who make a career out of it are the most dismissive 🤬

@CinnamonSwirl82 i’m sorry you’re going through this. mirena did not help me at all, I bled it straight out within weeks. I’m so sorry you’re being fobbed off. What I would do is: make a timeline list, bullet points of what has been tried and when, so you can show them when they suggest x that that hasn’t worked. And take a friend or someone who will advocate for you rationally - I know what it’s like when they don’t listen, and you can then get frustrated or upset and immediately you’re labelled hysterical and ignored. Someone not connected to it, just calmly stating facts, might help. Not that I think that’s what you should need! But it might help…??

How is it possible that women are still being treated so badly? I am appalled by some of these stories.

I had a mirena fitted in Jan and it has saved me.

my periods were debilitating. I was passing clots the size of my hand and just couldn’t contain the flow at all. I was dreadfully anaemic too.

Could you reconsider getting one? I didn’t even notice it being fitted. I now haven’t had any bleeding for months and I feel so much better.

I have another wait till November to be seen and my GP is useless. The cramps with mirena are awful, never had them much before I’ve had it fitted. I stopped bleeding yesterday! And woke today to be bleeding again! I really don’t think it’s going to help me if this is the state of things after almost 7 months. My husband and child must be fed up of me moaning now! X

I would definitely be wary of the Mirena coil. Mine caused me to bleed daily for a year until I finally had it removed. They kept telling me to wait for it to settle down but I think a year is enough time and it didn't.
Not to mention the labour like cramps that having it inserted gave me, which in turn gave me PTSD flashbacks to giving birth.
Stick to your guns.

I hope your investigations shed some light. It sounds like you are at the end of your tether, and I don't blame you.

However - another vote for a Mirena here. If it doesn't stop your bleeding then you won't be any worse off. And it's not complicated to have it put in.

It's not a quick 5 min job to get it out and it's so invasive

It is, actually, a quick 5 min job to have it removed. I didn't even realise the doctor had done it, though he was just checking things inside.