Will I ever stop bleeding?

[ShowOfHands]

I have had a lifetime of predictable periods. 28 day cycle and manageable. Over the last 18 months or so, they've become slowly closer together and I now have a 21 day cycle and bleed for 8 days, often heavy with flooding and clots and it's more painful. I don't think I'm ovulating anymore either as I used to have clear signs.

I'm currently 16 days into bleeding and for the first 13 days it was so heavy. I'm on norethisterone from the GP to try and stop it but after 3 days, it's slowed down massively but still there when wiping.

I'm clearly anaemic and the GP has given me iron tablets and referred me for blood tests for everything she can think of (no appointments for 2 weeks for that), and ultrasound but that will take a few weeks and she's recommended a Mirena but the GP can't do them and the clinics have a 6 month waiting list and will only give them for contraception. So I have to lie given that DH has had a vasectomy and I don't think I'm fertile anyway.

Meanwhile, I swing between thinking this is normal and just the perimenopause and being terrified that it's something sinister.

I am so so so so done with bleeding. I feel grey and lifeless and exhausted and I don't understand what is happening and if it will ever stop.

I don't even know what I want from this thread.

Even A&E isn;t enough sometimes now, though I have found SDEC to be useful. I think if you call 111 OP, any time you have anything similar to today, if they offer you can ambulance take it, rather than coming in yourself. From my experience last week, they just believe you more and honestly I don't know why I said no, because they saw by ability to do so, as a sign it wasn't that bad, but that's not the point right now.

Please complain, I used to feel bad when I did, but honestly things can kick into gear, I have found the ICB and PALS to be useful for inadequate care as well. They cannot always push up appointments, but if you are deteriorating (which you are, and it is more than okay to moan about it, please do), then they can do things or like I said earlier get you on a list so that if another surgeon is available i.e has a cancellation they will call you.
It can be so hard mentally as well so please get support and lean on people around you.

At this stage, OP, I would conmtact the news, the press, a TV program, anything to make this public.

I don't live in the UK anymore, but I am absolutely aghast at your story, and many other stories I am reading about the state of the NHS and its effect on patients like you.

They are literally letting you bleed to death and suffer in agony.

This is horrifying.

I think the irony is that I'm too tired to fight. I have a good RL friend who is going to come to my next appointment with me and fight for me. She's a bloody Pitbull when she wants to be so I feel in good hands.

And because it's gynaecological, I'm too embarrassed to make a proper fuss. I can't even tell my - 29 year old, male - mentor at work precisely why I'm so drawn, haggard and emotional all the bloody time.

I had to push in front of a queue of people at the National Trust a few days ago. They were all waiting patiently while I tearfully apologised and said I really needed to use a toilet NOW. I'm so embarrassed all the time and I shouldn't be. I should be raging.

I'm waiting for my biopsy results and then I'm going to just repeat "I need an urgent hysterectomy" until they listen. They have to listen eventually, right?

You're not whinging OP. The state of women's
Health in this country is bloody scandalous.

I had something similar only the GPs I saw (my surgery is a lottery) were male and very dismissive "some women have heavy periods take some iron".

I bled for the best part of 9 months. It ebbed and flowed. Flooding and huge clots. Heavy. Occasional spotting and then back to flooding. I was bleeding through constantly, carring and sitting on disposable incontinence sheets. I ended up in A&e with palpitations, blue lips, breathless borderline needing transfusion. I was lucky gynae made me an urgent referral to their department and I had a biopsy the next day. It came back with pre-cancerous cells (endo hyperplasia) and adenomyosis.

As you've said first line was mirena coil. My next biopsy was negative. Following an admin screw up (had to chase for a year for my follow up biopsy) my 3rd biopsy result is worse than the first and I than the first and I'm awaiting a date for urgent hysterectomy. I found norethisterone and tranexamic acid helped, but by god I pay for it when I stop - the cramping/pain is contraction level and makes me vomit etc.

It is only now things have escalated (likely next stage endo cancer) that the drs are agreeable to/recommending a total hysterectomy. Prior to this I was told it was only an absolute last resort because it's such major surgery. What you're going to battle against is the NICE guidelines saying that the hysterectomy is an absolute last resort. But you've already had the mirena fail and various medications also not working for you you've tried first line and this is impacting your daily life.

All I can say is keep pushing. Make complaints. Get your friend to help. It's exhausting, but needs to be done. So sorry you're going through this.

I'm on high dose norethisterone and they've recommended a 7 day break from it soon to "give my body chance to bleed." Oh how I fucking laughed.

I'm too scared to stop it as the last two times I did that, I had the same experience as you with pain and eventually, haemorrhage.

I'm so sorry you've been through similar. I cannot believe that women's health is dismissed so easily. My GP is fantastic and was/is aghast that they aren't acting. I can see from my notes that she's contacted the hospital twice urging them to expedite surgery.

Precisely how many women are out there struggling in the same way and not being heard? It's desperate and I'm angry and sad that so many of us are at the mercy of a broken system.

I wouldn't do that, as you said, don't stop the northisterone for the pain and cramping which isn't worth it. If that does happen though you can go to A&E, and push for them to do the MRI there, try and go to one with an SDEC as they are good at calling gyne as well.

If you can get that MRI then once it comes on your records both you and your GP can send an email to the consultant’s secretary amd they should be able to use that, to decide next steps as well. It can work in my experience, and it's so hard with this and the way you've been treated which is horrible but complaints, and also trying to work around the system are sometimes the only way. I hope you can have this removed as soon as, it's so hard, I have also had similar with heavy bleeding, flooding through 7 layers etc (not fibroids other issues). I will say incontinence pads helped a lot, and thick period pants, sometimes using both together.

I might look at incontinence pads. The hospital gave me a short supply of heavy duty pads which were amazing but not sure what they were. They actually worked though were distinctly nappy-like. Luckily, I have no dignity left.

I've just had a letter through for an MRI in 3.5 weeks and instead of being relieved, I'm now convinced that they've found something sinister in my biopsy and they're fast-tracking. The gynae said the MRI waiting list was quite long at the moment so was expecting to wait for months on end. Regardless, if they have a biopsy, an MRI and previous ultrasound results, surely that's going to be enough to make an actual plan some time before 2026?

They always say the max waiting time because that way patients aren't more frustrated, and don't contact them earlier. It can be up to 4/5 months normally where I know of more max 4, but if it's earlier, great. It also depends it could be a private diagnostic centre so the NHS outsources, they often have cabins, etc, so they aren’t in a hospital, sometimes dotted outside.

Also, they will tell you biposy results if they were bad, or they'll be on the app, etc. It's likely the letter was dictated and typed before the buposy results came back anyway. Even if I'm wrong it's okay, they'll explain it all, and if you are right then they clearly are unsure and need the MRI to be definitive, so it can still be nothing.

Also that's good it's in 3 weeks, a plus of them telling patients the max, is patients are happier when it's less than expected (even if it's still been quite long for an urgent one) but this distracts from that. They should definitely have enough to make a plan by late November and then get on with it. Definitely ask your consultant and the secretary to put you on the list for anyone, so be on that consultants list but if any other consultant is free, has a cancellation, comes back from leave etc or whatever you could potentially have it earlier. Not sure if everywhere allows this but some places I know do, and it's happened for people I know.

I have found incontinence pads very thick and useful for years, also they have incontinence type pants which you may be taking about. Also period pants are great and get good thick ones, I've heard the Wuka ones are good, and others as well.
Honestly safety and not leeking is sexy as the chronic illness slogan goes, there's no need to feel shame either, I did for this, other symptoms, using a mobility aid, grab rails etc but now I don't care and I shouldn't. Neither should you, it's self care and that's important.

Also when you go back to the hospital, ask them what pads they are, they likely could give you some as well, even when you go for the MRI if you go to the ward inquires desk or the outpatient gyne ward, they should give you some. Our at the very least tell you the brand. Hopefully this is the last hurdle and then you can be booked for surgery and other treatments. How has today and the last few days been symptom wise? I hope your half-term break has been good.

Thank you for your long, kind and helpful messages. I never even thought of asking at the hospital if they can at least tell me what pads they use. They're definitely pads but huge, thick and the only thing I've reliably not leaked through. I've tried period pants but don't get on with the ones I have. I will try more but I'm flat broke from spending all my money on prescriptions so it will have to wait.

I've googled and diagnostic MRIs have shorter waiting lists than I thought. The gynae just said a vague "months" when I asked but 3-6 weeks seems quite normal for where I am. The referral was submitted 2 weeks ago so it sounds about right.

Bleeding had been much, much better the last few days as I've been taking max TXA and norethisterone but the pressure is pretty constant and I can feel the fibroids when I twist and bend. I've stopped taking the TXA and am expecting things to ramp up again as a result. Having a date for the MRI helps though. I feel like I know what I'm waiting for iyswim.

Thank you again for being so kind. Knowing somebody is out there and listening makes such a difference. And you're so right about no shame. I cared for my Grandma when she was in end of life care and my Dad has dementia and all of those supports and aids make life easier. They're a source of celebration, not shame. I'm really pleased you embrace that ethos and have the wisdom and kindness to share your insight as well. Thank you.

Thank you for your kind words, I think it's so hard what your going through, it's so lonely (my experiences of heavy bleeding are definitely not as bad as yours and are now managed well), but it's so undermined and I hate that. As in seen as not that hard etc and very much like you're exaggerating. But you aren't, unfortunately lots of things outside your control, and some medics have led to this ridiculous wait and lack of concern even at A&E etc. I was there last week and you can honestly feel it, especially at women.

If you've tried a lot of period pants, then ignore me and don't spend your money needlessly, they can be great but your obviously having way more bleeding than you would on a period so they aren't designed for the task. I often used to double up so a pad (thick or incontinence) and period pants, due to vaginismus tampons are way too painful so couldn't have the 3. That's good the list isn't too long, I a big believer in the NHS (or the idea, and it's potential) but I do think done well using private can work, those companies already buy the machines etc, are staffed by NHS staff who work in thar hospital already being paid and so it works well, where I know this model is applied near me. Might be different in different areas. Thank you for your comment on the ethos, it's hard I'm younger so always was scared of the judgement and yp just know less about it so even when they aren't being rude made me feel odd. Also lots on stuff on it will make you dependant for me scared me and the classic gaslight yourself that you're not that sick. But it's given me more independence actually.

See if you can apply for HC3 or HC2, it's the NHS Low Income Scheme for prescriptions however there's loads of other eligibility requirements not just low income. HC2 means they cover some of it, and HC2 they'd cover all of it, so higher eligibility is needed for that. Obviously it depends on your personal circumstances but I know how much prescriptions cost, part of the disability tax really. I was even looking at OTC stuff and I'm stunned by how expensive they are.

Do you have a pre-payment certificate as that should save some money at least?

I hope it continues to be okay-ish, it's not but hopefully the date helps. You can focus on it, rather than not knowing if its in 3 weeks or 3 months which causes more stress. Are your work given you good accommodations to take stress out of that. Sending support and love, hoping the week continues as best it can.

I've used this brand for inco pads as I flood even when I'm not moving. Have saved my furniture so many times! https://www.incontinencechoice.co.uk/shop-by-brand/vivactive/vivactive-disposable-bed-pads.html?gadsource=1&gadd_campaignid=21172420721&gbraid=0AAAAADxOc4aKYjCObjg9LA6583zrrb-ny

Or you could look up "puppy pads" on amazon which should also do the job. These are more like the thinner ones in hospital.

Glad you've an MRI booked in. Hopefully people are starting to listen. Keep pushing though.

Frankly, I’d bag the pads and take them with you. Look!!! This is the reality!!!!

Or weigh them at least, with photos.

This! I was passing clots size of my palm every 60 mins when on my period, thankfully only for a week, not like you, but wouldnt get taken seriously

I took photos every 60 mins for a week and when I finally got appointments I let them see every single one

just check where they save to on your phone and you’ve not got family sharing turned on!

Just catching up in my watched threads OP. So sorry that you are having such an awful time, it’s honestly outrageous that they have left you like this. I hope things have improved for you in the last month

Thank you. It's very kind of you to remember me.

I'm still on a triple dose of norethisterone and this mostly controls the bleeding but doesn't stop the pain, bloating, reflux, constipation, bladder urgency etc. The gynaecologist is adamant that I have to stop it every 28 days to "see if my periods have regulated yet" and I then haemorrhage again, need meds to stop it and go back on the norethisterone. And rinse and repeat.

They still won't put me on the list for actual surgery. I had an MRI 3 weeks ago and they've said I need results from that before they'll "make a plan."

It seems pretty interminable as a situation and they're in no hurry to act but at least the meds mostly work when I'm on them. If I'm remotely late taking them, they stop working so I have to be pretty regimented.

I think I'd be ignoring the stupid doctors request to stop taking them. It's YOUR body and you know what's happening with it.

Sometimes you just have to tell them no, sorry.

I've seen a different gynae today as mine wasn't available and they've transferred my care to him which I'm pretty pleased about as he was lovely and listened very carefully to me. He went through my MRI results and explained that I have the intramural fibroids I'm already aware of but also have subserosal fibroids and a single submucosal which is quite big and likely causing the problems with bleeding. He examined me and said my uterus is enlarged and bulky, with the top of it sitting above my belly button and likely causing the pain, pressure, constipation, reflux etc etc. He gave me three options:

• Hysteroscopy and removal of the submucosal fibroid which should stop the bleeding but won't deal with the bulkiness, pressure, pain etc.

• Uterine ablation and insertion of another Mirena.

• Hysterectomy with removal of cervix and fallopian tubes.

I really don't know if I've made the right decision but asked for hysterectomy. He said I'll be put down as urgent and it will be done within 6 months, sooner if there's a cancellation as I'm still symptomatic. Vaginal surgery isn't an option due to the number of fibroids and bulk of the uterus and currently, I would have to have an open hysterectomy. However, he suggested Zoladex to induce temporary menopause, hopefully shrink the fibroids and allow for laparoscopic surgery instead. He said he'd start laparoscopically and open up it necessary.

I really don't know what to think. I've read up about Zoladex and it sounds brutal and I'm now panicking that I've "chosen" major surgery and I should try a milder procedure first.

My head is spinning a little bit tbh.

I had an ablation, after 18 months of heavy bleeding - it did nothing.

so I then had a hysterectomy in 2017 as I too had a very bulky uterus with a great many fibroids. It was the best thing I could have done. I had key hole surgery and recovered really well and was back at work teaching after 6 weeks.

Id do it again in a heart beat.

That's really helpful. Thank you. I can't imagine an ablation will improve the multiple fibroids which are left behind.

I dream of this all being over and going back to teaching without the pain, fear, worry. I've just read the leaflets about laparoscopic Vs open hysterectomy. All very sobering. But might be the solution to all of the associated issues. I really hope so.

I had a hysterectomy 2 years ago (aged 42) for similar issues, I was bleeding more often than not. I had already tried ablation which had made it worse. I was sent for biopsy but they were unable to get past my cervix so I was sent for an urgent hysterectomy (I kept my ovaries). Because of the bleeding and my uterus feeling large after examination and the fact they couldn’t get a biopsy ,I was treated as a possible cancer patient. It was scary, and the wait for pathology after was long but I got the all clear and the hysterectomy was the best thing, I felt better straight after surgery. my recovery was pretty easy.

What sort of hysterectomy did you have eg vaginal, open, laparoscopic? And did they leave your ovaries?

I had laparoscopic vaginal assist leaving ovaries. I was originally having open surgery as they thought my uterus was very enlarged, I didn’t feel it was correct so I paid for a quick ultrasound to prove I was right and managed to change it to laparoscopic. I was in hospital less than 24 hours (stayed over night), my recovery was pretty easy. I was showing signs of being peri before surgery and now I am on HRT, though my ovaries are still working. I don’t regret surgery at all, it’s so much easier not bleeding all the time and I feel much healthier.

Thank you for replying. I'm hoping they'll manage laparoscopic but at the moment, even I can feel the top of my uterus and know it's too big and distorted for that to be an option. I really don't want an artificial - albeit temporary - menopause but if it means I can have keyhole rather than open, I'm sure it's worth it. I went home the day after my emcs X2 and am hoping I can have a similar, straightforward experience.

I also didn't want to have my cervix removed but the consultant seemed pretty sure it was necessary to prevent any fibroids regrowth. I keep reading horror stories about prolapses after cervix removal and I don't want to get rid of one problem just to create another.

I've just had an appointment through for a pre-op with the anaesthetists. It's in early April. I'm not sure if that implies the surgery will be soon afterwards. Early April coincidentally will be a year since I started bleeding.

I started Zoladex last week and so far I've had no side effects but it might be too early. I've tried reducing the Norethisterone this week as they said the Zoladex might control the bleeding on its own. No such luck. I'm back on the triple dose for the time being. They've also agreed to me keeping my cervix after all.

The pain is becoming pretty unmanageable and I'm counting down the days. If you could all keep thinking fibroid/uterus shrinking thoughts, I'd be very grateful. I'd like a laparoscopic op so that I can get back to work asap and resume my normal life.