Bleeding for 6 months and at my wits end. - Endometriosis UK

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Bleeding for 6 months and at my wits end.

Dellym profile image
8 Replies

Hi, I have just joined this tonight looking for answers? Today I can not hold in my tears. I had an operation end of March to have endo tissue removed and also cysts on my ovaries. At the time of operation I had the coil fitted, Which I have had twice before. I bled for 3 months without a break thereafter. My gynaecologist said that it could be normal for the 1st 3 months so wasn't overly concerned. 3 months on (6months later) still bleeding. He put me on the pill as well as having the coil to stop the bleeding which it hasn't. The pill has only made me moody and an angry person which I ain't. It's finally affecting my mental health and I go on holiday in 9 days time to not be able to go into the water with my young children.

How do I get the bleeding to stop and has anyone else experiencing the same problems?

I have my gynaecologist tomorrow night at the hospital and want to tell him that I want a hysterectomy but don't know if I'm being hasty because it's affecting my head? I don't even know if they would give me one as I am 34 with two very beautiful kids and do not want anymore.

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Dellym profile image
Dellym
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8 Replies
Impatient profile image
Impatient

Regards the bleeds, how heavy are they? - can you use tampons to catch the flow while you have short swim with the kids on holiday? I've been known to insert two before now, One behind the other. just make sure you hold on to the strings of the 1st securely so they don't get shoved up inside.

Lill lets expand width ways making a tighter more secure fit than tampax that expand by elongation.

Even the mooncup can be used swimming. You could try that out in the bath for a trial run.

Have you tried GnRH drugs or Depo-Provera injections yet?

I don't recommend GnRH but if you alredy had a 6 month session or more it would make it less likely that you could have Depo-Provera.

But if you hadn't had GnRH, the Depo-Provera injections every 3 months is a stonger dose method than mirena of trying to stop the bleeding.

which tablets has the doc put you on with the mirena?

Mirena usually does take 4-6 months on average to stop periods completely so it should be round about now, some ladies do take a bit longer. some will unfortunately still continue with spotting and won't have an outright stop.

You might want to consider MEA or microwave endometrial ablation as the next step.

It involves cooking the lining of the uterus so it scars over and no longer is capable of growing a menstrual lining and stops periods that way.

It is done by a variety of methods some use, heat some freeze the cells, but it is a lot safer than having a hysterectomy and only became available on the NHS couple of years ago.

It's a much less radical method than removing the uterus.

It takes less than 30 minutes. rcog.org.uk/en/patients/pat... gives you the run down on after care.

serendipity6954 profile image
serendipity6954

I would get the coil removed I haven't the patience for it. I had excision surgery in may and mirena fitted. My periods are definitely lighter but more irregular anything from 5-10 days late and lasting 7-14 days whereas before they were 3-4 days and pretty much bang on the same day each month. X

I know exactly how you feel! When my Endo flares up, I bleed constantly until I have the Endo removed (great). My GP has tried several tablets for me to stop the bleeding until I get can a laproscopy, but the only one I find that works is Norethisterone - it might be worth asking your Gyne/GP to try these? I find that they take a 2 or 3 days to stop the bleeding, but once they've started working they do keep you bleed free (although you do get a bit of tummy bloat after a while). I know it's not a permanent solution, but at least you'll be able to enjoy your holiday and give you some time to think about treatment options :)

fudgecake21 profile image
fudgecake21

I'm afraid I can't offer a solution or fix, just comfort that you aren't alone. I bled for 7 months with the coil until I got it removed.

It was like a week long period with spotting for up to another week (on rare days, nothing!) then back to bleeding for another week and this went on for 7 months. My iron stores are completely depleted and my haemoglobin is low.

My symptoms resolved when the coil was removed, my gynae removed it saying I clearly wasn't getting on with it.

I wish you well and hope you find relief from it :)

dabba76 profile image
dabba76

Hi Dellym

I too am on my 3rd coil. I am only 3 months in but I have been bleeding/spotting not constantly but most days - 10 days last month and 14 days this month. Never had this issue with the first 2 coils just had a 3 day really light bleed every month. I'm at a loss as to what to do. My partner wants me to go to the doctor but I know they will just say it's just normal, it's just settling in, you need to give it 6 months etc. I cant and wont take the pill.

The consultant refused to give me a hysterectomy. I really want to try the MEA treatment but my consultant says I'm too young (38 and no kids) it may not work.

How did you get on at your appointment?

Kx

MiriamGrazier profile image
MiriamGrazier

Hi there,

I can completely sympathise as I am in the same position. It has been worse since I had my laparoscopy. I have been given endless courses of Tranexamic Acid and then hormone tablets - and still nothing. I know completely how you feel and hope you get a resolution soon.

Dellym profile image
Dellym

Well I went to my consultant and he said next step would be a procedure called endometrial abrasion. He also gave me tablets to stop the bleeding whilst on holiday however he doesn't know what the outcome will be once I stop taking them however I will cross that bridge when I come to it. A I also told him the pill has turned me into a mad woman moody angry and short tempered and he told me to stop taking them ASAP. He said that if the abrasion fails them next step would be a hysterectomy however he would prefer the 1st and hopes that it will work as a hysterectomy is a big procedure for my body. Thanks everyone for you messages x

Dellym profile image
Dellym

Oh and the tablets to stop my bleed is called Norethisterone. X

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