Endometriosis UK
36,836 members32,543 posts

Tell me im not alone in this

I have suffered heavy bleeding for 12 months everyday most days not able to leave the house its that bad 😶 i had surgery in june to remove a cyst and endo which has not worked and made the bleeding alot worse i cannot have hormone treatments no children i have no money coming in at all was getting esa which stopped in august awaiting an appeal partner only brings in a small amount i was the main earner.ANd to kick me further the appointment i had on the 26th of sept has been cancelled the reason being given has been given to someone who has waited longer i really understand that but i explained that was an urgent appointment so they checked the system and the gp has said it was a routine new referal!! Which means im waiting up to 18 weeks i have so much pain and have been on serious meds which dont touch me i feel so lost now and at my wits end i have suffered for 15 years now im 34 and my family are not supportive at all sorry for the rant ladies 💜xx

4 Replies

Hi don't apologize for the rant that's why we are here to listen so no one is on their own and to help each other through. I haven't bled that long my longest was about 4 months none stop and then 6 months nothing at all. That appointment been cancelled is bad and having to wait for up to 18 weeks is horrendous.

Why can't you have hormone treatment?

Do you want children?

Take care xxx


Because my body reacts badly to them coil pill all very badly i had my 8th loss in october and things got worse after that hun xx


Oh no I'm so sorry for your loss. There is nothing that I can suggest to you unfortunately but 18 weeks is a hell of a long time to be suffering could you not call and ask for an emergency appointment if I was in your shoes I would want it sorting out and not just to be pushed to the side like it doesn't matter. Its all well understanding that the other person needed an emergency appointment but so did you. I would call and try hum xx


Hello I am so sorry for you're pain and having no one around to talk to

You have come to the right place here

Never ever apologise ok.... this is what we're all here for there are lots of us all in the same boat and one problem leads to others amd we're all here to help ok.....

Firstly I have had horrendous periods all my life from 10! They got worse about 3 yrs ago I always had full 10 days from age 10 had numberous hospital visits stays and ops and needles and scans amd x rays all down to puberty and when I was 20 down to womanhood !!! Only stopped during pregnant to return with a vengeance 😧 Ok I had 2 years flooding ... clots ... endo pain crying ready to go jump of a bridge I thought I was going mad my hubby couldn't understand how I could be showered all ready to go out and I'd be screaming in agony 5 mins later flooded everywere fru clothes to the floor amd on the toilet till clots passed them shower and re start it all 5 times in totoal in 2 hours in the end we stayed in to flood the sofa amd the bed and the floor this happens 3-4 times a week for 12 months solid I was in tranemic acid amd mefananic acid but none worked longer than a week

I tryed the coup wouldn't fit couldn't even have a smear test as I have a dropped tilted womb and can not get inside! Awful I was about to give up and asked about the depo the prostrap injection omg!!! I had it last November for the first time after bleeding for 12 months solid being rushed in hospital totoaly anemic amd in 6 iron tabs a day so they gave me it

For the first 2 days nothing

Then I stopped for 4 days bleeding then it was horrendous I sat on the toilet crying wondering what I had done as pain was worse amd bleeding horrendous well hey ..... 2 days after that I stopped bleeding stopped pain stopped everything did I dare hope..... yes I did I still

Took tampons out with me as usually was using 25-30 a day and towels every day 🤦‍♀️But I can 100% say since 15 November last year I've not had 1 pain 1 period 1 issue ...... and it's fantastic everyone should try it

It takes 2-3 months to really work they say after the 2 one it works you do get a itchy red lump in tummy or bottom we're it's injection goes but that goes after about 6 weeks

It's fantastic they say you can only have it for 3 times well I've had it longer amd my daughter in law been on it 10 yrs plus only stopped to have the children

So I urge you to ask

The go for it ok it will help it will

Change you're life you're daily life will get better days out nights out not worrying about will I come on

Will I flood etc it will work I am sure

Everyone body acts differently but failing an hysterectomy this is a god send

I hope that's helped you and I really wish you all the best keep us all informed Hun and as I say never be sorry to ask anything that's what we all here for take care and relax go get you're life back on track

Also take some acadopholis from the health shop amd some iron tabs they will all boost you're immune system

And if you have no money send me you're address I will buy them and post them to

You ok

Please take a deep breath and let today be the start of getting better the road to recovery ok.... make that docters appointment you won't. Need the hospital one as you will stop the bleeding

Take care xxxx


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