This is no life

[Pojji]

Suffering with horrendous periods. I'm not over exaggerating when I say I think I've probably lost a pint of blood in the last 3-4 days..... maybe more. The blood is pouring out of me.
Yesterday I bled onto my chair at work. I felt completely humiliated.
My iron and iron store numbers are in my boots. I've absolutely nothing left. My Gp did a test before Christmas and my levels were 7. I'd guess they're significantly worse after this bleed.

My gp has recomended the mirena coil so I'm trying to get one fitted but my surgery only has one clinic a month so I'm waiting....Feb is full.

Asked for an iron infusion because I'm on the floor but that was met with maybe.....its apparently not standard procedure. I can't tolerate most oral forms of iron due to another health condition which I manage really well through diet (no red meat, dairy and other things) so I've avoided a flare up for over 2 years now.

Woken up in pain for day 5 of my period once again in a pool of blood despite nappy sized pads. I feel like absolute shit and need to summon up the energy to shower away the grossness of it all and go to work. I feel dirty. I am shattered despite 9 hours sleep.

I came home from work last night, fed my kids and went to bed with the baby.

I'm not sure what I want.....I am just so totally and utterly done with feeling like this. Trying to function, parent my kids, run a house, work.....I've nothing left in me to even get out of bed this morning. I'm so tired. I'm depressed. I have no quality of life what so ever. Tuesday the bleeding was so bad I couldn't leave the house. I just had to sit on a towel and try and get through the day.

I honestly don't know how I'm going to make it through the day and I have a schedule of meetings that I can't miss at work.

Not sure what the point of my post is, I'm just completely fed up.....beyond fed up. Just needed to get it out.

@CoffeeBeansGalore I am not sure about the endometriosis. I have a problem with my gut and my period/hormones definitely make it react- not to a full blown flair up but I can feel the inflammation every month in my gut when I am on my period.
I've also had an ectopic in the past and someone said it could have been the cause of that as they said I had a lot of scarring in my tube when they removed it but I have never had an STD.

OP I could have written you post a year ago. Went through several years with all the same problems. Push for Gynaecology referral. It took a lot of waiting and some messing about along the way with a few less complex treatments but eventually a hysterectomy fixed it all and has totally changed my life. I feel like the young me again at 46 and my life is not controlled by heavy bleeding and its side effects. I had adenomyosis, endometriosis, swollen tubes, and scar tissues all over my insides, including my spine. Don't put up with it.

I feel for you OP. I've experienced the same. I asked for a female Dr and have her a very graphic description. I was due back at work after mat leave and was worrying about it I took flooded at work, down my legs, on to the floor.

I was passing fist sized clots, as you say just pouring out

Anyway, it took a long time (thankscovid) but last year I had an endometrial ablation. I did NOT try the coil, didnt want to. The ablation was in October, I still get periods (some people dont) but they are normal . A few days of normal. Its bliss.

I did use ttranexsmic acid while I was waiting, total life saver. Ask your GP for it. It was like switching a tap off after 2 doses.

I'm going to start my own thread about low iron levels. I would be grateful if you wise women would take a look at it.

@tothelefttotheleft theres been a thread about iron running for a few months you could jump onto that.

@helleborus do you mind me asking how much they cost you? I looked online and one place charged £500 which is out of reach for me.

Sorry OP, only just seen that you tagged me earlier. I think I paid about £500 for the infusion last time but there was also a consultation first which was an additional £200. It's incredibly expensive.

I'm really glad to see your GP has referred you now. I hope you successfully get one on the NHS as it is clear that you really need it.

I could have been you 8 + years ago. Terrible periods and awful PMT too. Years of it. Had cysts removed, coils, ablation you name it but when I FINALLY got to see a doctor who UNDERSTOOD, I was referred to a gynaecologist and it was life changing. He was the most amazing guy and as soon as I started to explain things to him in the consultation, he said I most likely had PNDD on top of blood loss each month and very low iron.

I had a full hysterectomy a few months and it changed my life. That was 8 years ago when I was 42.

It's so hard- and I imagine these days even harder with the NHS as it is.

I hope you manage to find a doctor that takes you seriously.

It is very helpful to use a menstrual cup because you can estate the volume of blood and clots you have lost
The average period is about 50ml.
When I saw a gynaecologist and said the average is 50ml and mine were 130-150 ml I was offered an ablation as my family was complete. If this hadnt worked I would have been given a hysterectomy.

My periods are now light, less painful and far easier to handle

@Pojji this was me 4 years ago. Had a womb ablation, CHANGED MY LIFE!! I now barely have a period, I have loads of energy again and now feel my age (35)
No more soaking through trousers and spending weekends declining plans in case I bled. Please tell your doctor this is what you want and need.

Your GP is bullshitting you. You absolutely do not need to have tried the mirena before a referral. If it’s something like fibroids then that wouldn’t solve the problem anyway! You need to go in and demand that referral.
Im currently awaiting a hysterectomy as I have adenomyosis and endometriosis, I’m basically housebound a few days every month. It’s horrendous, and so many of us are suffering this way. I hope you get your infusion soon OP x

@Dogsgottabone

I can't find it. Which board is it on?

It is absolutely shocking how womens health is treated and how many have been through the same thing.

I have found a private consultant local to me who is meant to be one of the best in the country. He also heads up the gynae dept at our local hospital so I think I am just going to pay to see him privately and get a diagnosis then if he recommends any treatment I will ask him to write to my GP and refer me onto his NHS waiting list. I will have to get a credit card to pay for it but it seems to be the best solution and gives me control to see someone who I think would be interested in helping me.

Can you go on the pill ? I’m on desogestrol it’s been life changing . No periods at all

Hi OP I have endo and struggle to get any support whatsoever from my GP for heavy bleeding and low iron. I am symptomatic as well, very fatigued, dizziness when standing up or climbing stairs, brain fog. I hate the iron tablets. Hate them they cause so side effects many of which exacerbate my endo. It's a vicious cycle and it makes me so angry to not get infusion treatment that would improve my quality of live greatly.

Basically you need to go private for iron infusions because no chance you'll get one on the NHS. In the interim have you tried the pediatric iron liquid?! It's much more tolerable gastro wise but does still constipate.

My Dr didn't mention the pill. I am not sure why but I think I will send him an email tomorrow outlining a few questions as peoples comments on here have been very helpful and eye opening.

I am taking spatone which is an oral iron supplement but I don't think it is strong enough. I had to have an iron infusion whilst I was pregnant as my levels dropped so low. It helped a lot but only for a few months and then I was back to square one again.

Tranexemic acid worked for me when I bled clots for a month and became aneamic. But I would advise a hysterectomy if you don't want more children, I'd also suggest getting a private appointment and scan if you can. I had a private scan via the NHS, my surgery uses a private provider, so it only took 3 weeks to get the appointment

You have my sympathy OP.
For years I was having what I called tsunami periods.
Constant flooding and clotting. I'd sleep in the 'heavy night' period pants with a giant pad on inside of it, on top of a towel. My periods lasted up to 14 days and it was just horrendous.

I went private and had investigative surgery and they found polyps, fibroids, a cyst etc and removed it all but the periods were still horrendous.
In the end (after being pressured by GP) I went for the mirena coil and it has changed my life.
It took about 6 months for the bleeding to get lighter but I've had it for 18 months now and my periods are so so light and only last 7 days (rather than the previous 14).
My moods are a lot more unpredictable and I find that I'm more irritable but I'd take that over the periods any day.

The private surgeon said that if a coil didn't work, the next steps would be endometrial ablation on hysterectomy.
I'm glad I've not had to have either yet but predict a hysterectomy will be needed in the future.

*endometrial ablation OR hysterectomy

www.mumsnet.com/talk/style_and_beauty/4388784-Need-to-hear-success-stories-of-hair-regrowth-after-low-ferritin-Am-so-worried?reply=123063003

My periods got really heavy too OP, I was sent to hospital for tests camera in the womb just to check for fibroids etc, all clear. Had Mirena coil fitted, I am now on my third Mirena this one will take me through the menopause. I won’t lie I found the fitting painful every time, but so worth it once it is done, I don’t have periods now, I had a bit of spotting for the first few months. Been life changing for me, you could try your local sexual health clinic as they often offer coil fitting, perhaps they could fit it sooner than your GP practice. Good luck.

@Pojji the spatone keeps you alive basically. But doesn't give you what you need.

I had an iron infusion too while pregnant and felt amazing afterwards.

Women's health is definitely not taken seriously enough in this country.

@Roselilly36 my local clinic require a referral from your GP unless you are under 20.
I am very nervous about the pain. I have a tilted cervix and womb so smear tests are always very awkward so I imagine this will be just as fiddly! I just keep saying to my brain "it's just pain" but when you're there in the moment in agony that all goes out the window.

I am going to phone the surgery back up and ask if they have a cancellation list. If they do then I'd like to be put on the list. I just need some thread of hope.

@mizu I can not imagine men having to put up with this. I remember when I was giving birth to my son- I was induced via the hideous drip. It was like torture. I was in absolute agony with back to back contractions and felt like I was trapped inside my head. I couldn't move or talk. All I could do it scream. (I had 2 kids previously with no pain relief so this was a bit of a shock!) I remember thinking in my head how barbaric it was what they were doing and that if men had to go through this they would have found some alternative by now. I genuinely thought I was going to die and wouldn't see my older kids ever again. It completely ruined my birth experience and was hugely traumatising but just got glossed over by all the health professionals I spoke to as "one of those things"

I've not RTFT because this post shocked me.

You've been iron deficient for 20 years?

I'd be losing my shit at the GP for that reason alone. And my guess is that it's a gynae issue which is as per usual minimised by GPs.

I'm so sorry this is your reality.

@AttilaTheMeerkat I (and my lovely GP) thought exactly the same reTranexamic acid. I had horrendous periods, cobfibed to the house/bathroom . One lasted 7 weeks. I was severely anaemic, with no iron stores, hideous

Eventually the GP said just try it, I don't think it will help but you never know . I had the tablets about 4 months before trying, and it was astonishingly effective. I still had the ablation as I suffered more pain and bloating with the TA, but they definitely helped.