Continually bleeding...

[MyjourneyMystory]

I keep putting off writing this post because honestly I've given up all hope and I'm banging my head against a wall. I've been bleeding on and off more on the last six weeks, at the start it was changing from brown to bright red then changed to bright red with clots, pain was worse then usual and a constant pain in my back on right hand side...i went to a+e last Monday after a really bad bleed on the Sunday soaked through my jeans, they did a blood test to check my iron and did an internal no scan, they just told me I was having a bad flare up, I quote "stage 4 endometriosis is very bad" ... Tell me something I don't know..gave me another prescription for cyklokapron as the first one didn't work, by Thursday the bleeding had stopped but today it started all over again,my back is killing I soaked through my jeans, tampons lasting 2 hours if even and big clots are coming out...is this normal, I know my normal, I live with this condition, this doesn't feel right...what do I do? I'm at my wits end, I'm sick of being dismissed because I have a condition and that's what they put everything down to...surely there can't be much more blood inside me, where is coming from...will it ever end...any advice or words of support, similar stories would be welcome 😟

[Apollo_blue]

I’m sorry to hear this . I wish I could give you advice . I would go to the g.p ASAP and hopefully they’ll listen . My thoughts are with you . I hope they can help you . 💛💛

[MyjourneyMystory in reply to Apollo_blue]

Thank you...i know I should go but I've had enough of listening to the same reasons and coming away feeling worse. I can deal with it(hanging on by a thread) I just wish I knew what was going on inside my body. Thank you so much for the reply and your kind words means a lot ♥♥

[AllthatGlitters]

Hello I could have written this. I know exactly how you feel, it’s horrendous and embarrassing as well as being debilitating. I went back to my GP and they are sending a note to the hospital to say my symptoms are getting worse and they have asked that I get seen sooner for my lap.

Go to your GP, tell them exactly what is going on, how it’s making you feel as well as letting them know you can lead a normal life because of the bleeding. Ask them to send you to gynaecology to discuss treatments such as laparoscopy (not sure what meds or operation you have been referred for if any). Remember it’s your body, it’s you who has to live with this condition. PM me if you would like to chat x

[MyjourneyMystory in reply to AllthatGlitters]

Thanks Mill...as horrible as it sounds it's nice to know I'm not on my own, the funny thing is my gp did send an urgent letter for an appointment to my gynecology and when I went to a+e the nurse tried to ring but no answer she said she left them a stern reply I still haven't heard anything so got my doctor to do me up another referral for another hospital but who knows when I'll get an appointment... Long story regarding my diagnosis but long story short during my lap I flatlined and was clinically dead foe a minute so therefore they are less willing to do another or any sort of surgery ..i got diagnosed through MRI and I'm with a pain management clinic but all they do is give me painkillers without any understanding of what end is...its so frustrating...im a positive person, I get on with it, ive learnt to live with but it's starting to get in on me...sorry for the rant, thanks for replying and reading and your kind words ♥

[Sherna21]

Sometimes it’s good to go elsewhere. Research where else specialise in endometriosis and ask for a referral. I was bleeding for no reason go about 2 years. They wanted me to have the coil and I refused each time. My point was, until you find out the problem you will not cover the symptoms. Because I may take out the coil one day and the problem will still be there.

Anyway I went to the new place and the did an internal scan. They found 8, EIGHT, fibroids and the one that they assumed was causing the problem along with a kidney stone. At the previous hospital I had numerous scans and no one ever said anything about the amount of fibroids I had.

Last November I had the operation to remove the fibroid and *touch wood* I haven’t bleed since then. No medications or contraception.

I’ve learnt to control my symptoms from the endometriosis. I try to stay as warm as possible and use my hot water bottle when I have a flare up, I’ve had it since I was 9 so I’m use to it now. Some may think I’m not in pain because I’m not crying or going to A&E often but what can I do or can be done? 20+ years just gotta deal, until they approve my request for a hysterectomy. I’m 33, no kids so they always tell me no lol

[MyjourneyMystory in reply to Sherna21]

Sounds like you've been through the mill..i totally agree and understand, I feel the same about the coil it's just a cover up, I ended up in A+E last night long story short I had a really bad bleed and two massive clots..im still none the wiser, they said because it's the weekend I'll have to wait till Monday till they can pull my chart then they will revise a plan... I'm not going to hold my breath..im the same just got to live with it unfortunately but the better it's managed the better quality of life we'll have..thanks for the reply and hope your well ☺