Excessive continual bleeding - does anybody else heavily bleed for up to nine weeks? What reasons have you been given?

[ShortStuff88]

I have never had the standard 28day cycles. More recently the time I'm bleeding for is getting longer. I bled for nine weeks heavily with clots, then five weeks I had nothing and now I've been bleeding for 2.5weeks. I wonder - how long I can continue this for, why I just cant seem to turn the tap off,why its so heavy and when will it end. I had the mirena fitted four weeks ago which isn't causing any problems,I was warned about spotting but this is a continual period literally flooding at times.

If you have had abnormal length of continual bleeding Has a gynae or gp given you any cause? To me and my body this is normal but I know its not natural. I've tried tranaxeamic acid with no luck at all. Scans show nothing and I was diagnosed 2.5years ago with severe endo. The pain is unbelievable but I'm putting that to one side for now.

Any suggestions or experiences would be greatly received.

Thanks ladies

[Andi1975]

Oh Hun, I had exactly the same, only after having my little miracle twin daughters though (as diagnosed with Endo 20 years ago).

Everything I tried, including the Mirena coil, implant etc just made my bleeding worse and it was already bad enough seeing as I would get through a pack of sanitary towels a day and it would just go on for weeks at a time! My advice would be that you need to contact your doctor every time you have been bleeding like that for 2 weeks or more.....I didn't, even though it was draining me more and more until 1 day I pretty much collapsed and then ended up in hospital having a major blood transfusion because my haemoglobin was so low!

As a result of that the consultant arranged for me to have an emergency TCRE (where they remove your womb lining and so most people never bleed again) but this is only suitable if you have completed your family. Unfortunately I started bleeding again 28 days later and 9 months later they repeated the op to find 50% of my womb lining had regrown itself which is pretty rare but assured me it couldn't happen again.....alas it did and by this time the pain had become so bad with the bleeding that I would be curled up in bed unable to move for 3/4 days despite being a mum and feeling terribly guilty. So eventually I was told they had no other choice and last October I had a sub total hysterectomy! Apparently my uterus was swollen to the size as if I was 16 weeks pregnant which when analyzed confirmed it was because I had Adenomyosis.

I can't tell you how much better I feel for that having gone but everyone's circumstances are different so might not be suitable for you but I wanted you to know there are other options and your not alone. I hope this helps X

[Diagnosis21]

Hi Hun iv found any pill the implant and the injection all made my periods worse by miles because when i was 16first time on the injection i bled for pretty much 9months constantly no breaks and so heavy it was ridiculous. I came of it and it took like 6months for my body and periods go back to my normal as like you I never have a 28day cycle and then months later i had my son about 6-8weeks after he was born I started to have my periods back but then i need some form of contraception as I'm severly allergic to condoms or the lube they use on them and that has messed me about until i came off it at the beginning of this year to try for another but then became in sever pain with sex and just general moving about then had a lap and they removed all Endo found as they didn't know i had it. And I'm still in sever pain and periods exabate it. Also like you i feel guilty because of my son hes only two so doesn't understand to well and it does sometimes affect him when the pain and periods are that bad that I'm bed ridden. Iv not been given any reason for any of this just being referred to somewhere else so basically been fobbed off. I hope you find out though Hun.

[ShortStuff88]

Hey both

Your replies have been invaluable, thank you.

I have now had the four days of tranaxeamic acid and I'm still losing clots and bleeding heavily. I have reached the end of my tether and have now booked an earlier appt with my consultant. Unfortunately its not until January but is earlier than April.

Like you, Diagnosis21, any pill, implant or injection just sends my bleeding off the radar, off any hormones and I go longer between bleeds but they last just as long.....weeks and weeks, months even. The pain that comes with it just adds to the frustration.

I take most things in my stride, since diagnosis I have tried to make many adjustments to my life and more recently I'm learning to accept the whole endo 'thing'. The bleeding though is now becoming a nuisance and coupled with the pain is affecting my quality of life. In one day this weekend I slept for 15hours. The time I was awake I popped to the shops, I had to make a number of trips to the toilet thinking that everyone could see I'd flooded time after time. My other half is great, he knows I will put myself out as much as I can as long as he allows me to rest inbetween. At no age should illness prevent you from living but at 25 I'm being laughed at for being asleep by 9pm on a friday and 8pm on a saturday.

*sigh*

My concerns are mixed - if I'm continually bleeding with clear scans then its a pretty much cert that its Endo, but its not right. I prefer to give things time to see if they settle, I'm so used to being told 'come back in 3-6months' but in that time could the disease spread and become worse. I used to feel a hypochondriac but now I just want to get things sorted again.

Anyway, hopefully I will get answers in a month, in the mean time I just hope I stop bleeding over christmas, new year and my other halfs birthday so I can at least enjoy the holidays without paying as much of a price.

Thanks to you both again xx