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.

Have you tried a Mirena among all the things you’ve done? They can be a game changer.

It is shocking that they can’t give you any real solution. Any other kind of bleeding would be taken far more seriously.

I absolutely refuse to have the coil. Under no circumstances will I entertain it. I had a doctor try to fit it against my will when I was 17 and it's left me traumatised. It's also extremely invasive and I've heard horror stories so I really don't want to go there.

They just tell me it's a period and I'm obviously being dramatic.

I wasn’t quite as bad, but did bleed loads and was extremely anaemic. I had the coil fitted, and it was ok. I know you had a traumatic experience but explain this and you’ll be looked after. I spotted for 7 weeks and then nothing and it’s crazy I can go out and not worry about bleeding through, or constantly buying huge pads. It did take 3 years of thinking about getting the coil, I’ll admit. I only read the horror stories but then my friends and close relatives said they’d had the coil and it was life changing. Never even knew! It took 3 but I’m so glad I made the decision.

Took 3 years..

I bled daily for over a year. Had the mire a fitted and within 3 weeks it stopped. Haven't bled since.

It sounds like you had a traumatic experience but it could change the quality of your life.

What were the problems with your cycle prior to Oct '22?
Were the investigative surgeries due to the current constant bleeding or your prior cycle?
And have they been able to take blood from you whatsoever since this began?

Whilst Mirena would likely help, if it was me I'd want to be certain of the cause before treating the symptoms

I really don't want the coil. There's no guarantee it would work and I've been told it could make things worse so it's not something I want to risk. It's an absolute no and I won't entertain it.

They've not been able to get blood out of me at all. They're trying one more time on Monday then they'll be sending me to hospital.

Pre oct-22 they've been horrifically heavy, irregular, extremely painful. I've never had any quality of life. I've tried every kind of contraception (bar that one) and absolutely nothing works. The implant made it worse and I bled every day for 10 months until they finally agreed to take it out. I bleed through everything. I've had to take days off school, college, work, avoid social events or leave early because I've leaked everywhere.

I had a laproscopy when I was 16, one when I was 23 and a hysteroscopy at 23 too. The last one the only thing they said was 'they think it was full of polyps but everything was such a mess in there they gave it a good clean out'.

I know youve said no coil but it was the only thing that stopped this for me.... I was completely exhausted due to the constant bleeding as well ....but seriously felt better in days... my life was given back to me as I dreaded going anywhere ....

I had it under sedation..is that an option for you if it is the insertion thats an issue..

i know some people have had some side effects ... but most dont.... please don't exclude treatment because of some horror stories. .

there aren't many options i know but maybe talk it through with someone who knows about it...it was the sexual health clinic in my area...that look after all contraception options....thry were great to talk though as i was concerned too..

I am not getting a coil fitted.

So sorry to hear this OP; it’s the pits. I don’t have much to recommend except make sure you keep your iron levels topped up. Low iron/anaemia perversely can manifest in heavier periods.

I really feel for you @CinnamonSwirl82

You say you've had scans done, what scans were those? Have you had trans vag ultrasounds done?
You mentioned you had a hysterscopy when you were 23 and they found loads of polyps which they cleared out. They can grow back, and you can also get fibroids. I've had two procedures to have them removed, the first time almost 10 years ago and then again last year. I am a older than you, early 50s, and will be having a hysterectomy this year.
My bleeding has been so heavy my ferritin went from 17 to 9 last month and I am about to have an iron infusion. I feel so wiped, but can't sleep through itchy skin. Walking upstairs I sound like I've run a marathon and am so out of breath.
I always said I wouldn't have a coil fitted, but in desperation I did (it wasn't too bad, but I didn't have the traumatic time you did) but because I have fibroids it got pushed out.
I do have the depo provera injection which for me hasn't stopped my bleeding but my dd, who also has really heavy periods, has it and it has stopped hers. Maybe worth a try?
I hope you find a solution for this, but you need to keep pushing your gp to get referred to gynae and get this sorted. It is not normal, you do not need to put up with it, and it will make you ill. Make a diary of your bleeding, when it's heavy, when it's not so bad, when it's stopped, the times you have to get up in the night, clotting etc (I did a graph chart for a year at the start which I think really showed my gp and gynae just what my life was like)

@longtompot ultrasound both external and vaginally. They said it all looked completely normal.

They couldn't say for definite whether there was any, just that they thought there was but couldn't see clear enough to confirm.

I've had the injection, worked for 3 months until I started bleeding through that too. 3 months seems to be the maximum anything will work for before my body finds a way to break through it.

I've been in and out of gynae referrals but they don't seem interested. Once they've run their tests to prove I'm normal they then just tell me to take contraception. If I tell them I've tried it and nothings working then I get brushed aside and my appointments become every 1.5years and they just talk about my feelings. They event went through a phase of saying I must be sleeping around and be riddled with STDs which was soul destroying. Constantly having to open my legs for different people to take swabs just to prove them wrong. If I didn't then they'd tell me I was clearly hiding something.

When I got married they told me 'we might take you more seriously now you're married'

I've had a doctor tell me I've no right to complain because 'at least I've not got cancer'.

I've been left curled up in a pool of blood, screaming in agony, on a&e floor whilst all the other patients around begged them to help me. They gave me paracetamol and told me to get over it because its just a period.

I don't feel like there's any help and no one will take me seriously or try and find out what's going wrong.

What a god awful situation OP, so sorry 🌺

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

I won't talk about the mirena, but just to quickly say, I had bleeding whilst on HRT. Nothing sorted it. Reluctantly I had a coil fitted by a lovely skilled nurse. Bleeding no more.

❤️

is endometrial ablation an option?

@BritInAus good thinking.. it could work.

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 sort of draconian nonsense is this. I can't believe in 2023 this is still the opinion of medical professionals.

It's easier for people to become another sex than it is for a woman to take control of their bodies.

I refused to have one for literally a decade. Then I had one and my bleeding utterly stopped.

I didn’t have side effects. Possibly one pound of water weight and that was it. My doctor daughter and many of her friends have mirenas. Possibly worth considering having one inserted under GA?

If all this has been done in a NHS hospital I would go to PALS and get them to investigate your case further. You have been both fobbed off and let down here by this particular hospital and at the very least you must not go back there again. You need to find a gynae that will actually listen and knows their stuff rather than being preached at unnecessarily.

I cannot understand why they performed an external ultrasound in particular; that was a complete waste of time. Scans like ultrasounds will not pick up endo if it is present either. It seems they really do not have a clue what is wrong and it appears you're still without a firm diagnosis even now. Endometriosis and fibroids to name but two can cause heavy bleeding to arise.

I am quite a lot older and in my case this constant heavy bleeding was caused by both PCOS and endometriosis. The constant fluctuations of both estrogen and progesterone caused the constant bleeding. I refused the coil too because it would not address the root causes. I also had similar problems with northisterone in that once I stopped taking it (I was not given quite enough prior to ablation surgery) the bleeding started again and this time further northisterone did not stop it. Only endometrical ablation stopped the bleeding entirely. I can only assume they have not suggested this partly due to your current age.

If finances allow I would now telephone your local private hospital and ask to see a gynae there for an initial consultation, taking any and all test results if you are in receipt of those along with you. I suggest private as well as NHS waiting lists for gynaecology are miles long in many areas and you've suffered far more than long enough.

There's no guarantee it would work and I've been told it could make things worse so it's not something I want to risk

I don’t blame you. It made me worse and I bled every single day I had it in. I had to beg and beg to get it taken out. My bleeding was bad enough before I had it fitted.

Sorry you are having to deal with this, it sounds miserable for you. I was taking tranexamic acid regularly prior to my hysterectomy, is that an option to give you a break? I hope you find some answers soon

I agreed to try the Mirena and like TwitTwont it made it worse. Instead of just very heavy and long periods I just bled constantly for 8 months.

I've had several investigations, the last was two years ago where I was told "oh wow, how old are you, this is the healthiest reproductive system I've seen" Apparently I have "lots of eggs" well lucky me! I'm 50 now and fed up with two week long heavy periods every 28days. And I'm anaemic and have been for 23 years.

I've begged for a hysterectomy. And even after two children they have still declined because "there is nothing wrong" with me.

I do though have an underlying condition which I believe is the actual cause of why I bleed so heavily.

I wish I had some advice, but you are not alone.

I too think maybe private is the best option if you can afford it.

I can totally sympathise, similar bleeding situation. I agreed to the coil after two years of them saying it would end all my problems and here I am almost 7 months later constantly bleeding and cramping each day and not being able to get an appointment with gynae for another 3 months! It’s not
always this amazing thing Consultants say it is! And people are very lucky who don’t bleed with it but for some of us it’s not a magic cure! I’d say it’s making my symptoms worse right now x

Have they actually excluded endometriosis? It's massively under diagnosed.

My mate had adhesions which were horrific for her and took years for them to diagnose.

https://www.endometriosis-uk.org/getting-diagnosed-0

@PinkFootstool I believe that's what they were looking for with the surgeries. Both my mum and sister have/had it and I'm sure it's hereditary?

They didn't find anything but my last surgery was about 7 years ago so I'm guessing there's a possibility

@AttilaTheMeerkat it's been across several NHS hospitals & GPs (I've moved around the country).

I don't know why I didn't think of going private. I contacted a hospital and I'm booked in for Monday. Praying they take me seriously and actually look in to what's going on

@TwitTwont that's my biggest worry. It's not a quick 5 min job to get it out and it's so invasive. I really didn't get along with the implant and I've had a nurse advise if I don't get along with that then I wouldn't with the coil (something to do with similar hormones?). I got the implant based on a recommendation of it being amazing and stopping periods completely... allegedly!

@Mrsworried1 I'm so sorry 😞 any chance you could pay private to get it removed? I don't think they understand how life destroying it is to bleed every day, especially when it's so heavy.