Heavy bleeding : Hello everyone, hope you... - Endometriosis UK

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Heavy bleeding

Alicelily profile image
14 Replies

Hello everyone, hope you’re all safe and well.

Back on New Year’s Eve I had my laparoscopy where they reported finding nothing. Mentally it messed me up and I’ve been struggling to come to terms with it ever since.

Unfortunately my situation hasn’t changed but now I’m started to get Increasingly long periods that are really heavy for around 3-4 weeks. My last cycle Lasted 57 days.

I’ve been on again for 14 days and bleeding is not slowing and I’m Extremely Exhausted I just wanted to hear if anybody else has Experienced this.

I haven’t gone to my Gp yet because I don’t want to bother him with no emergency stuff right now.

Thanks in Advance 💓

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Alicelily profile image
Alicelily
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14 Replies
Moon_maiden profile image
Moon_maiden

Speak to GP, they are still working and you will be able to book an appointment, it's likely over the phone though. If you fill in the oneline form for an appointment, it gives you the opportunity to write everything down first. GP's are dealing with the normal everyday that they'd see.

Did they say there was anything else when you had the lap?

Alicelily profile image
Alicelily in reply to Moon_maiden

No, was just told that they didn’t find anything. She Asked whether I wanted to see her again and I said yes.. but when I received my Discharge papers from the Day unit it said discharged from services so I don’t think I will. Xx

Linley profile image
Linley

Moon_maiden is right get a phone consultation with GP, he or she can look at the op notes and prescribe a suitable tab to ease/stop the bleeding.

Jude07- profile image
Jude07-

Hi Alicelily, im so sorry to hear your not very well. I too had a laporoscopy 9 weeks ago they found nothing but i have got Adenomyosis! I phoned my consultant on Friday explained i haven't stopped bleeding since my operation and my pelvis is so painful, she has put me on the emergency list for a full hysterectomy in 3/4 weeks. Im absolutely devasted because i am physically and mentally exhausted and every reluctant to go into hospital.

Have they offered you any medication or an injection to try and slow blood flow and ease the pain? I've been on every thing so im at the end of treatment, i hope you get sorted, please ring your consultant secretary direct as i find the doctors are not specialised in this area.

Good luck.. Stay safe x

Alicelily profile image
Alicelily in reply to Jude07-

Thank you so much for your Reply, I’m so sorry to hear your news. I imagine this wasn’t the outcome you was hoping for. Sending a big hug your way.

I was given menfanic acid and Transamic acid ( sorry about the spelling lol) to help with blood flow but they don’t Seem to work. I’ve been anaemic in the past because of my Periods, but nobody seems to be bothered about that. I’m just tired of Feeling pushed aside and told that my mental health is the root cause to my issues.. it makes me feel crazy and I feel like nobody is taking me Seriously! Xxxxx

Anastasia17 profile image
Anastasia17 in reply to Alicelily

Hi. If you are losing that much blood, your body is depleted and it's very likely that you are anaemic and the GPs should have prescribed you iron tablets. Alternatively, you can buy them yourself. I currently take ferrous sulfate iron tablets (2/3a day) because the previous ones made me constipated, or you could also buy Spatone. Taking magnesium glycenate (gentler on the stomach and best absorption by the body), vitamin D and B12 to help with fatigue and immune system. It won't solve everything but it will make you stronger. Stay safe.

Alicelily profile image
Alicelily in reply to Anastasia17

Thank you for your help. I started a little while ago taking feroglobin as I was recommend that by a friend. I suffered terribly with the ones I was prescribed by the doctors. Hope you’re safe and well xx

IndigoMoon1234 profile image
IndigoMoon1234

Same thing happened to me. Thè doctor in question made me feel like I was making it all up.

Saw a different doctor. Was sent for a CT an it showed a 6cm endometrioma on my ovary.

Was sent for an MRI two years after lap and it show 6 different types of cyst plus adenomyosis.

Problems can come and go and doctors can miss things during laps.

It is not normal for you to bleed so heavily and for such a long time.

It is possible you have adenomyosis. You could be anemic as well.

You really need to contact your GP again. Perhaps you could had a telephone appointment? They will hopefully then request a referral back to gynae.

Very best of luck!

Alicelily profile image
Alicelily in reply to IndigoMoon1234

Thank you for your reply. Scary how much goes unnoticed! I’m terrified of Pushing for more incase nothing is wrong. I don’t like to feel as though I’m wasting peoples time or money.. but at the same time what I’m dealing with clearly isn’t normal. I think I need to book an Appointment. Thank you for your Help xxxx

IndigoMoon1234 profile image
IndigoMoon1234 in reply to Alicelily

Endo is a strange one. I have read on here many times that women want to get a diagnosis of endometriosis just so that someone actually believes them. I have felt that myself. That wouldn't happen with any other condition.

What you are going through is not normal. You must feel drained all the time. You really need a blood test to check your iron and haemoglobin levels plus either a CT scan or MRI to find out what is causing the excessive bleeding.

Years ago my mum was hospitalised and needed a blood transfusion for excessive bleeding. The doctor said that if she waited much longer she could have died.

You are not putting people out. There is help out there once they find out the cause of the problem.

I hope you will get the help you need.

Good luck xx

geekybird profile image
geekybird

Please persevere. I am so angry on your behalf that you have been fobbed off with medication that does not work. If you are not averse to taking the pill, you could take one continuously and avoid bleeding at all. The GP could at least give you progesterone for a few months to give you a break from all the bleeding and a chance to recover for a bit. I had very heavy bleeding due to two separate bouts of fibroids with a break of a few years in between. The first time I had a large fibroid treated by embolisation, after a failed myomectomy, but the second time with a 5cm fibroid another embolisation failed. My iron stores were constantly depleted despite taking iron. Eventually the bleeding escalated into repeated slow hemorrhages that could only be stopped with intravenous TX acid and I had to have a hysterectomy. An ultrasound scan a few days prior concluded that it was actually a tiny, barely noticeable fibroid causing the heavy bleeding, not the 5cm one. Having been through years of heavy bleeding I think doctors (even Gynaes bizarrely) are in denial as to how bad it can be - with the TX acid I once passed a clot the size of a placenta. I'm guessing you're not beyond childbearing years or I presume you would have at least been offered an ablation?

Alicelily profile image
Alicelily in reply to geekybird

Thank you for your reply! Oh my goodness me, you’ve been through so much. Sending you lots of love. I am on a pill called ‘cerazette’ which I think is progesterone. My Gyne consultant put me on it. It’s quite common that in your first 6-12 months your periods Tend to be a bit crazy in terms of Spotting or possible Longer periods and will then eventually stop... but I’ve been on it for over a year and My symptoms aren’t getting easier nor does anyone seem bothered! I’m feeling very let down and it sucks that everyone has to fight and push really hard for anything to get done. I’m by no means Suffering to the extent as some people on here and I’m not suggesting that at all.. but it’s effecting me Both mentally and physically and I don’t think anyone’s listening. Xxxx

geekybird profile image
geekybird in reply to Alicelily

Don't worry about me, I'm sorted. Not bleeding is flipping marvellous. I only wish I'd had the hysterectomy years ago and saved myself all that suffering. It really does suck that everyone has to fight and push really hard for anything to get done, especially when the blood loss leaves you feeling exhausted so much of the time. I found it helped to take an advocate to appointments with me, preferably male. It always feels as though others have it worse than us and that somehow means we should soldier on. However, we shouldn't have to be chronically ill before we get proper treatment. None of us should have to live with the debilitating effects of bleeding for months or years. That pill is not working. Ask your gynae, or another doctor if necessary, for a different pill to try or if they can suggest other alternatives. I hope someone listens to you soon and you get some relief.

Alicelily profile image
Alicelily in reply to geekybird

Thank you very much, means a lot xxxx

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