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.

@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.

Sorry to hear youre struggling like this, you shouldnt have to. I had horrendous heavy periods very similar to you due to perimenopause and just ignored them really, until I became very anaemic and suffered terribly with tiredness and it also affected my hearing, awful tinnitus and vertigo, and the amount of clothes (even my car seat) that got ruined was ridiculous, didnt dare go far and was always having to cancel plans last minute, it was just depressing
I was offered a mirena coil in the end, which i wasnt keen on but it worked and stopped my periods within 3 months (and my pmt). I had forgotten what it was like to not feel exhausted, my tinnitus and vertigo disappeared and I never looked back. It took numerous appts to see that my ferritin levels were so low that I couldnt go on without some kind of treatment, and its certainly not normal to be loosing that amount of blood. I hope you can get sorted, good luck, but definitely recommend the Mirena x

I have a follow up with my gynae consultant scheduled next month. He wants me to have the coil, I want a total hysterectomy (I have PCOS and suspected endo) my periods are horrific. I bleed for 2/3 of the month and spend at least 10 days completely bed bound on a plastic sheet.
Keep pushing for a referral. Become a total pain in the arse until they give in. Or on the off chance you can afford it or have private health insurance that would cover it - book in that way!

@PastMyBestBeforeDate yes, when I first saw the GP, I had "no iron stores" (her words). I had a blood test a couple of months ago and was still anaemic despite taking iron.

Hrt worked for me.

I can't afford private. I will call the GP again tomorrow, along with the hospital. I can't go on like this. I have work on Tuesday and am dreading it.

Make sure you emphasise that it is effecting every aspect of your life and stopping you from wanting to / being able to go about every day daily tasks.

@SquirtleSquad that sounds awful. It's just ridiculous that we have to live like this.

Someone mentioned a mooncup. I do have one but in all honesty, don't like using it. It's horrendous to empty, and I get a huge flood/loss of large clots when I remove it.

@SquirtleSquad i have said that to the GP. I called her a couple of months ago and could barely hold myself together talking. That resulted in the scan, but I found her quite dismissive of the results.

Awful isn't it, why are women allowed to suffer like this!? it's been 6 months since my first consultant appointment but 3 years since I started first really pushing hard on my GP about it. Probably 5 years since I first went there to discuss it being so abnormal and painful.
When I had a c section 18 months ago they found severe endo tissue and removed what they could. No follow up or anything after that. Again, I had to push and push them.
I'm praying my follow up next week which is meant to be to book in a laparoscopy and the coil (which I'm planning on convincing him should be a hysterectomy) isn't going to get postponed "due to covid".

My first appointment with the consultant in June got made into a phone appointment and I phoned up and furiously told them I was not prepared to FaceTime my fanny and thought it best if internal examinations and scans were done in person - they were very embarrassed but I got my point across and they saw me

Awful, I have endometriosis anything female health related is dismissed please try to stay strong.

Can I suggest you ask for another GP and sorry if this doesn't apply but take a male partner into the appointment with you, or get them to phone on your behalf to make the appointment and explain the urgency if you don't have a DH any male friend or family.

I know it sounds utterly crazy, but it works every single bloody time.

Infuriated doesn't even describe how I felt on my 5th appointment to my female GP in crippling pelvic pain when my DH came, she sat up straight, spoke to him about the referrals, prescribed me stronger pain relief and within a matter of weeks I had a referral letter, any issues he phoned.

Anyone else reading, honestly try it! You'll be fuming but you get talked to in a whole different way.

I have endometriosis. I take the mini pill back to back with no breaks. All but stopped my periods.

It's wonderful.

If you're not ttc then just stop your periods. You don't need to suffer like this

If men suffered like this a cure would have been found a long time ago

@SquirtleSquad please make sure they don't use ablation surgery on you, you'll be in a worse place in a years time and face multiple surgery's.

You need to read up about excision surgery vs ablation and the rate it comes back. And fight hard for a referral to a specialist Endo centre, don't let a general gynaecologist anywhere near you.

If you can afford private google Peter Barton smith, you'll be in the safest hands in the uk for endo surgery.

Definitely ring again. I found explaining in volume (so the mooncup helped) was taken more seriously
Mine are bad (hence the honour your flow pads!) but not like yours

@MooseFlake I've been on the mini pill for a year, no difference. If only it were as easy as "just stop your periods".

@QueenPaws i was really graphic with my description particularly of the size of the clots. (Larger than my mooncup...) I always remember an embarrassing bodies episode where they said the average blood loss is a few tsp.

I had this. The first month after my second child, I was prescribed Tranexamic acid then had the mirena coil fitted - worked a treat, that was 8 years ago and couldn't be happier!

Thank you @dhisreadingmypostsagain

@AnyFucker yes can you imagine. They'd get paid days off every month too.

@custardbear tranexamic acid is having no effect

[quote ImFree2doasiwant]@PastMyBestBeforeDate yes, when I first saw the GP, I had "no iron stores" (her words). I had a blood test a couple of months ago and was still anaemic despite taking iron.[/quote]
Is it pernicious? If so, then you’ll need injections.

I hope you get it sorted.💐

@MooseFlake I've been on the mini pill for a year, no difference. If only it were as easy as "just stop your periods". 

Then talk to your GP about a different pill, or the coil. There are lots of options to stop your periods. Not sure why the sarky face there, I was just trying to help.

I've had two surgeries, removal of a large cyst, excision of endometriosis from my bowel, frozen pelvis from adhesions, adenomyosis and was left unable to have any children. I suffered horrendously heavy periods post surgery in a last ditch attempt to conceive, but had to give in when my periods were so heavy I was fainting, and the endometriosis started growing on my bowel again risking me needing more bowel surgery. I stopped my periods to save my bowel.

If you have no iron store then you are not only poorly because of that, you would also struggle to clot if you have an injury and, if they needed to do an operation then they would need to give you a transfusion first. My ferritin was 6 when I had my ablation. My nurse friend said 5 was the threshold for transfusion.
I really don't know how you force a gynae appointment. PALS or your MP?

@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.

Hi ImFree2doasiwant,

Sorry to hear this is happening to you ~ same thing happened to me. You need to get your GP to refer you back to the gynaecology department and the reason for the referral needs to stated as heavy bleeding scan shows ‘thickened womb lining’ The thickened womb lining is the key here and this gives you heavy bleeding. This needs to be investigated further. I’m certain when the gynaecologist reads that you have thickened womb lining you will get an appointment very soon. I think sometimes GP’s don’t realise the significance of this. Good luck and let us know how you get on.

I have Endometriosis, suffered years & dismissed by GP's etc. I pushed for a referral and only exploratory laparoscopic surgery discovered it, had it removed during op, (as much as was able) and then I was put on medically induced menopause for the following 6 months.

Endo came back just over a year later, worsening over time. I had been thinking about hysterectomy, but first tried alternatives. Eventually I got the Mirena. Absolutely life changing, lessened the pain and stopped the extreme bleeding, floods and clots completely. Now not bled in years.

I'm so sorry for your suffering, it's heartbreaking that you can't be seen. Hold on in there. Don't give up, and keep being a strong advocate for yourself, don't take any shit.

Is there anyone else within in your GP practice or elsewhere qualified to put in the Mirena? Perhaps just try it in the meantime (if you can) and give it a few months, hopefully it may give you some relief until you are finally able to see the gynaecologist at the hospital.

As for your job, are you able to WFH? Or talk to occupational health to make some allowances for you?

It's all just so unfair. I truly feel for you, and all the ladies that are suffering with this type of thing.