My life is being ruined by heavy periods

[ImFree2doasiwant]

Sounds dramatic I know. But I am t the end of my tether with it. I have lived with it for well over 2 years now. Saw the GP when my maternity leave was finishing as wasn't sure how I would cope at work.

There have been times when it's not quite as bad. And indeed in general it's improved. But, I am bleeding for weeks at a time. Months in fact. Heavily. Losing large clots. Having to waddle to the loo. Have to use the accessible toilet at work so I can properly clean up. Been to the loo 3 times in the last 10 minutes to change a fucking massive pad that was full.

I'm severely anaemic. Exhausted. I do have underactive thyroid which I think may be the cause but who on earth knows? I know the bleeding us even worse if I run out of thyroxine for a few days.

I've had a scan, showing nothing small ovarian cysts and thickened womb lining, GP seemed unconcerned but has referred me to a Gynaecologist. I've had a letter back saying "No appointments available ".

I've had tranexamic acid. Which doesn't work (as predicted by the GP)
My sleep is disturbed as the feeling of losing the blood wakes me. I've done 3 extra loads of washing today - bedding, pjs and bath mat and washable pads.

Has anyone had this and what did you do? I'm desperate. I even said receny that at least I had no real pain and bingo, now I'm getting pains. I have no idea how I can go on like it.

I have endo so mine are always like this.

I have a mattress protector with a plastic back, maternity bed pads on the sofa, work chair and bed and wear super heavy flow reusable pads with period pants. I have a hot water bottle that straps around my waist and a prescription for codeine for the pain. I was on decapeptyl for ages to to stop them completely but the hot flushes were dreadful.

I'd advise keeping on at the doctors or seeing a private gyno if you can afford it or have insurance and think about some of the practical steps above for managing the heavy flow. I do sympathise OP its shit.

Sorry I should of said! Don’t get the GP to put the mirena coil in before you see the gynaecologist. You need to have investigations into the thickened womb lining before you have the coil fitted. This is exactly what happened to me. Phone the GP tomorrow and ask them to make the referral due to the ‘thickened womb lining’ Once this has been done you will be seen quickly.

[quote ImFree2doasiwant]@quickkimchi no, I don't tbh. I had a blood test when I first went about the periods, and was diagnosed then. Ive just been increased to 75mg but that we after a year of being "borderline". I will have a look at that group , I joined a few on Facebook but left very quickly as didn't find them helpful.[/quote]
I don't want to derail and maybe I've misunderstood but if you're on meds I'm not sure what 'borderline' means, if you've been diagnosed and the GP is prescribing thyroxine they shouldn't keep you at the very edge of the lab range. Hope the HU group can help, hypothyroidism can make lots of stuff go haywire.

@MrsT777

Sorry I should of said! Don’t get the GP to put the mirena coil in before you see the gynaecologist. You need to have investigations into the thickened womb lining before you have the coil fitted. This is exactly what happened to me. Phone the GP tomorrow and ask them to make the referral due to the ‘thickened womb lining’ Once this has been done you will be seen quickly.

I got an urgent referral in June due to thickened womb lining and wasn't able to get an appointment until August, by which time I was away. I was told they were only making appointments for more obvious cancer symptoms due to covid.

I’m sorry to hear that quickkimchi. I was referred to a gynaecologist with uterine thickness and was seen within the week. This was in July. I am unsure as to why they said that to you as they need to take a biopsy of the thickened uterine (womb) lining for diagnosis purposes.

@AcornAutumn no, not pernicious.

@MooseFlake I first saw the GP over 2 years ago. Closer to 3 actually. I have tried everything offered so far, 2 x mini pill, injection, tranezamic acid. Nothing is working. Its realky not that easy to just stop my periods. Sarky face, because if it were that easy I wouldn't be posting here. I'm on my knees with it.

@mrst777 I have always worried about the options, particularly tranezamic acid and the coil, being a bit of a sticking plaster. I want to know WHY it's happening, a d have it stopped rather than just stopping if that makes sense. GP Has said though that I need to see the gynae before any further decision such as coil or ablation.

When I had the scan, they mentioned the thickened womb lining as being the concern. Also have some small ovarian cysts. He seemed surprised that I dont suffer a lot of pain. I have been having sone pain recently but only what I'd call normal period pain with occasional very painful short cramps.

Hello, I was the same until I had the Mirena, its amazing!! Just a bit of spotting each month, no weight gain, no side effects

@BensonStabler thank you. Im glad the mirena helped you . I have a real treat of it and would rather have the ablation if I can. I do WFH some days although if it's a bad day it doesn't really matter where I am , I'm in the loo a lot. But home is definitely easier to manage.

Thanks for all of the suggestions (and sympathy) . I have tried most, and do many of the things mentioned to try and manage it, large washable pads, period pants just don't help as they are harder to change and eyewateringly expensive. I use dry nites bed pads on the bed and sofa. I carry a towel around the house as often need it to stem a flood. Its miserable.

What about the coil puts you off of it OP? Sometimes it can be a little painful having it fitted but I haven’t had any pain since mine was fitted 2 years ago.

I'm having similar issues with fibroids. I did get a gyne appt but they just seem to want to push the coil which I'm not willing to do. I know it won't stop my periods- one of the side effects is constant bleeding and mentally I can't cope with it.

Can you insist on a referral and try a different hospital?

I hate it how women are just fobbed off all the time.

Get the Mirena. Why are you afraid of it?

I really struggle with the idea of having the coil , I can't get past the idea if it being there all the time. I know 1 person who got on really well with it, and lots who didn't, including one having surgery to remove it, 2 removing due to pain and bleeding. General daily discomfort, having to wait months to have it removed. Irrespective, I can't have it til I've seen the gynaecologist.

Might be worth trying a different mini pill. I take cerezette after years of heavy periods and its fantastic, my periods stoped.

The two occasions I have been prescribed the generic version by different GPS I have started bleeding within days.

Good luck getting sorted.

I was sterilised 10 years ago and my periods were fine until a few years ago. Shorter cycle, longer heavy bleeding. Not Menopausal, low iron and B12. Saw the nurse I asked for the minipill (it was like asking for sweets!) and I’m ending month 3 now.

No periods but every toilet visit there is a smear of blood on the tissue. Every day. More of an inconvenience than a period.

Then yesterday i had a heavy bleed like a period with clots. No cramping, nothing.

I’ll see how the next 3 months go then ask for a doctor. During this virus it appears that i have to be at deaths door to see the gp. Its always a nurse.
I was also given B-2 pills and iron and when i called to say I needed more minipill there was no mention of more B12 and a bloOd test was not necessary 😡

Im always feeling fobbed off by a nurse for some reason

The big issue with the coil is that if it works it's amazing..

if it doesn't having it removed involves literally begging for removal to be told "keep trying" if they removed it as fast as they put them in nobody would have as much as an issue with them.

I can't stand the idea of it, so have refused more times than I can count.

@ImFree2doasiwant re mini pill different ones can have different results. Doctors might deny it as they say they have the same chemical but on Cerele I had 18 day bleeds. On Cerazette I had none. I know other people who have had it the opposite way around.

I would insist on trying a different brand, especially if you can’t get a gyna appointment anytime soon.

I also recommend an endometrial ablation once you can get a gynaecologist appointment. It changed my life

I've had cerazette, it did nothing. I've just started pack 3 of desomono which is never heard of before and which was just given to me with my repeat prescription. I have had an actual bleed free period of 3.5 weeks ish on it. Whether it's as a result, I dobt know. I'm on week 3 of heavy bleeding again now though.

@dhisreadingmypostsagain exactly that . If I knew I could have it straight out of be more inclined to try it

[quote ImFree2doasiwant]@mrst777 I have always worried about the options, particularly tranezamic acid and the coil, being a bit of a sticking plaster. I want to know WHY it's happening, a d have it stopped rather than just stopping if that makes sense. GP Has said though that I need to see the gynae before any further decision such as coil or ablation.

When I had the scan, they mentioned the thickened womb lining as being the concern. Also have some small ovarian cysts. He seemed surprised that I dont suffer a lot of pain. I have been having sone pain recently but only what I'd call normal period pain with occasional very painful short cramps.[/quote]
@ImFree2doasiwant

When I started to read your post I knew that ‘thickened womb lining’ would be mentioned. Your situation is the same as mine. You are right you need to find out the reason for it happening before you have any treatment. As you know you need to be seen by a gynaecologist for this. Phone your GP today to get the referral sent over ~ mentioning the thickening as the reason for the referral. This should get you an appointment soon. They need to take a biopsy of this thickened area. The treatment for this is not ablation. Hormone therapy is the treatment. You mentioned you are on the pill. My gynaecologist said that sometimes if the pill is not taken in the correct dose then it can cause this. There are other causes for this which need to be investigated. Like you I was reluctant to have the mirena coil. Once they explain everything to you I think you will feel more comfortable with it. Good luck and keep us posted.

@mrst777 the GP sounded very dismissive of the thickened lining and said it varies dependant on time of the cycle etc. She didn't seem overly concerned Tbh.

I'm almost used to it now I think, which is awful as it affects me more days than it doesnt. Even on the break I had receny, I didn't trust it so was wearing pads , taking them and changes of clothes out with me.

I had the same problem, was referred under NHS choices to a gynacologist at my local private hospital, had a laparoscopy & hysteroscopy within a month, was diagnosed with endometriosis & an ovarian cyst. I was prescribed norethisterone to stop my periods, had the cyst, one ovary & my tubes removed, then after suffering horrific depression due to the norethisterone had a laparoscopic hysterectomy a few months later, it was the best thing I ever did. I was like you changing tampons & pads every 15 minutes, was crippled with pain, my periods were never ending, the longest break I got was a week, got to the stage I daren't leave the house for fear of leaking through my clothes, ruined the mattress on my bed, the bathroom looked like something in a horror film if I took a bath or shower. I had to resort to wearing incontinence underwear with a maternity towel & a super plus tampon as well. I was so bad I had to be signed off work & eventually lost my job. Ask for an NHS chose & book appointment or pay for the initial appointment privately, my consultant only charges £155 now & then they can refer you back to the NHS for any treatment. Don't put up with this, in the meantime get a good iron supplement like Floradix as anemia can cause a vicous circle of even heavier periods.

@ImFree2doasiwant Mine weren't quite as heavy as yours sound but for three days I couldn't be far from a toilet and would quite often have to use 2 super plus tampons plus pads which needed changing every couple of hours. Then I started using a mooncup and whilst they were still heavy, it was SO much easier - less painful too. Then I had a coil fitted (post divorce, new relationship, 47 years old) and my periods suddenly became those that I had only ever read about! I wish I'd had a coil fitted years ago.

So my suggestions would be 1. use a menstrual cup 2. get a coil.

Mirena, I m on my third. Life changing.
I was unsure and our practice nurse said to me ‘I have one, and so do all my friends’ which was v v reassuring.

@Blobby10 I've got a mooncup, it's totally impractical for general use. I use it on "lighter" days for an hour to take the DC swimming. Its not manageable for when it's heavy, I get an avalanche of blood/clots when I remove it. It's very messy.