Hiya Folks!
Newbie here, sitting at home feeling sorry for myself!! :-)
20 years ago I had a large ovarian cyst removed, was 10lb in weight as the GP at the time kept telling me I had IBS... When it was sent to the lab I was told that it contained cancer cells. I was offered chemo, but they could find no trace of it around the rest of my body, so it would be a 'just in case' situation. Having just watched my brother go through chemo, I refused it and I was kept on the books for CA125 tests and scans 4 times a year for a couple of years, then every 6 months etc etc. Was probably a bad move on my part but I was also self-employed and already had 3 months off work and I had run out of money. I kept the one remaining ovary that wasn't destroyed by the cyst, as I was young and no children.
Fast forward to now. I've had very painful abdominal bloating in the upper region, under the breast for the last 6 months though it's not been good for a few years, on and off. No appetite at all plus food seems to make it a bit worse. Was referred without any tests at all, and have waited 3 months to talk to a gastro consultant via phone but the appointment was cancelled due to 'covid' a couple of weeks ago though not sure why.
Having a struggle to get help from the docs again and refused to send me for an x-ray. After my nagging, was sent for an ultrasound scan fast tracked 6 weeks ago. Found my womb lining was 19.6mm thick, several golf-ball sized polyps and worryingly (which nobody told me) there are large cysts on my remaining ovary which I found out when the endoscopy consultant was looking at my scan.. After the GP initially dismissing the findings as anything worth investigating, I was sent for an endoscopy 8 days ago for biopsies under GA and I am still waiting for the results. After 6 weeks of asking for a CT scan to look at stomach and bowels I finally have one this Friday. I just don't get my GP, they know my history, know that both my parents died of cancer, my brother has fought it twice that they refused to send me for a scan, it's been frustrating. I don't think the pain is linked to my womb as it's too high up and I think it's a different issue.
Thing is, I have bled stupid amounts after the endoscopy. I phoned my GP who told me this was normal. 8 days on and it's showing no signs of slowing down. I have a supply of tranexamic acid which I have taken to help so I can leave the house, but I can't take anymore as not supposed to take it for longer than 4 days. I don't have a fever or discharge, just large amounts of blood which isn't slowing at all. I've had no period for the last 8-9 months and am 49 years old.
Anyone else experienced this? Is this normal after an endoscopy? Online it's conflicting advice, but am just worried that my GP is making yet another mistake.
Anyway, thanks for reading my essay! Any experiences that people have had regarding endoscopies would be good to hear about.
X
Hi ,
firstly so very sorry for all the things you have had to go through, and welcome. Although my experience is not the same, one thing that has me concerned at this time is the blood loss if it’s heavy and is lasting all this time after the procedure I would definitely advise you go to A&E what your experiencing sounds pretty much something that needs to be investigated if nothing else for your reassurance.
I totally get you feeling like your Gp has missed something there is definitely a catalogue of things you have experienced, but like you also said being self employed which I have family history of it’s difficult to take time off when no money is coming in, but also at the same time your health has to come first snd believe me I know how hard that is to do especially when your struggling to pay for things. I would also recommend you give our (Missing Group) a message as they will know what support you can ask for. I certainly believe some financial support will be hugely helpful for you to have one less worry.
I would recommend highly that you do seek the medical attention and hopefully the bleeding will ease and I hope you get your results back as soon as possible and fingers crossed for you that its clear.
Please let us know how you get on and i just wanted to send you a gentle bear hug .
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Hi HappyJoe,
Sorry you are here. I once had a bad experience with a GP who said I was pregnant (no water tests in those days), then having a miscarriage, then when I really was pregnant he told me to go away and forget about it!!!! I changed doctors and it was the best thing I ever did.
I agree with Gbear. You shouldn't be bleeding like that. If the doctor still won't listen go to A&E. xxxx
Hi . I'd also like to welcome you to the Online Community. I find it hard to believe that, given your history and you're family's history your GP hasn't fast-tracked you for more tests. Like the other ladies have said I would go immediately to A&E. Jot down all your symptoms, dates of bleeds what medication you've been taking. My own experiences with the NHS have been truly amazing, I can't praise them enough but you do hear of other Hospital trusts acting totally different.
Get yourself off to A&E and let us know what happens.
Sending you gentle hugs, Bxx
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Hi Happy Joe. After my biopsy I was bleeding a moderate amount but three days after the biopsy I coughed and had a huge gush of blood, literally pouring down my legs. I rang the ward to ask for advice. They told me to put my feet up, but if I was soaking through the pads I needed to go to A and E. Luckily it didn't happen again although the moderate bleeding went on for over two weeks.
I suggest you go to A and E soon. Take care, Deb
Thankyou so very much GBear, for the hug and the advice :-) I really appreciate the time you and everyone else took to write back, thankyou!
Happy to say the bleeding stopped suddenly in the night, just a bit of blotting. I think I would've had to go to A&E if it hadn't and pulled my better half away from his fishing holiday, 3 hrs drive away, uh-oh! :-)
Thankyou again and sending a hug back x
Thankyou so much for your reply and sharing your experience - sounds awfully scary. I was similar, not too much for the first couple of days then wham, a lot lot lot. Sharing your experience has put my mind at rest, so thankyou so very much for that. x
Thankyou MrsBJH, I am pleased you've been treated well by the NHS :-). Sadly that's not been the case with me throughout my problems - I've moved quite a few times as an adult and I often wonder if that's why, because I've changed GP's a few times and they've not got to 'know me'.
I'm not one for going to the docs if I can help it so I rarely go, I only go when I can't solve things myself so I like to think it's not a case of the doc thinking 'Oh no, not her again'!
My first doc, who misdiagnosed the ovarian cyst when I was 29/30 drove around to my house unannounced and in a bit of a panic to apologise when he saw what was actually wrong.. I just hope he never did it again to another lady in the same boat.
NannyAnny, that's insane.. he/she shouldn't be a doc! Am sorry that you went through a miscarriage, horrible thing to happen. x
Your very welcome , i am pleased to hear that the bleeding has subsided , a bit of blotting can happen after and that’s hopefully will ease off all together very soon. I hope they are getting some nice weather during their fishing trip it's certainly been mixed just recently. It’s been very muggy around here, I don’t mind the hot and sunny weather if i just try to do things carefully but when it’s muggy it drains you. You have certainly had a bad experience with Doctors, I have had some similar experiences sadly but also some great experiences too. My cancer was misdiagnosed as just fibroids and i knew deep down it was something else so it took the better part of around 10 months to get a biopsy done which showed womb cancer, I know in my age as i was 37 at diagnosis its rarer but still possible and so lucky that it was slow growth and a hysterectomy was all i needed. I don’t have children which was a choice but its surprised me how disappointed I felt that my choices of carrying a child was taken from me. I lost all trust in Doctors and it’s taken a fabulous gynaecologist oncologist I have as my consultant to gain some trust back and my GPs its a rocky experience with them, had some great and bad too. I do believe those that trust in your medical team is an absolutely important thing and i do hope after all the mistakes that everything will be solved as quickly as possible. Do you know when you get your results back? I waited about 6/7 days I know it can vary from place to place I suppose it depends on the lab thats used or how busy they are but having a guide to when you get the results is important.
sending a gentle bear hug
What is a Community Champion? Womb cancer forum
Call the helpline for free on 08088080000, 8am to 8pm everyday.
“let hope be your lighthouse beckoning you though stormy seas" - Jessica de la Davies
GBear, no, I wasn't told when to expect the results. It's been 10 days now - I don't even know if I get told, or it's just the GP. I'll give it two weeks then start making some noises I guess.
I hear you over children, I don't have any either but when I found out I couldn't it smarted.. It turned out the remaining ovary they left behind was covered in scar tissue so I couldn't conceive. Luckily I could deal with that - if it's not meant to be I told myself, then no point in getting upset/down/depressed about it as I can't change it and it helped having a partner who isn't really into the idea of kids :-)
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