I'm new here.. Advice on irregular chroni... - Endometriosis UK

Endometriosis UK

70,120 members51,937 posts

I'm new here.. Advice on irregular chronic bleeding and useless medication

MC97 profile image
MC97
1 Reply

Hi all,

I am a somewhat healthy 20 year old, emphasis on the somewhat. I have been suffering with bad periods since they began. Being put on tranexamic acid on my third period due to bleeding through tampons and pads together after around two hours. At 13 I got put on the combined pill to control this more as periods were painful and heavy (very heavy) which made school life difficult as I wouldn't go two lessons without changing sanitary products.

This was the beginning. I continued to use the combined pill for 21 days with a week break containing tranexamic acid. Around the age of 16 I had an 'episode' of heavy continuous bleeding which eventually ended after four months. During this period I became severely anaemic, had my pill changed, took tranexamic acid daily do no avail. A few weeks before it finally stopped doctors felt they had no other resort than to refer me to gynaecology and put me on norethisterone short-term. Norethisterone is basically my bleeding saviour.

I eventually saw the gynaecologist who insisted I was having bleeding issues and pain related to IBS, hormonal changes etc. After a year of persistent pushing, I had an ultrasound (which was relatively clear) but then insisted on a laparoscopy to investigate symptoms. Prior to this they changed my combined pill a few times, tried taking me off norethisterone but every time they did bleeding would resume within a week. In July 2015 the laparoscopy found found stage 1 (the nurse said stage 2) endometriosis which was removed and treated. Following this I was told the bleeding and pain would now be gone due to the removal of the endo.

On holiday two weeks later I realised this wasn't the case, I'd been discharged from gynae without a checkup at this point. Two months later I moved to university and asked to be re-referred to gynae there to investigate and again find the cause of the bleeding. After 3 months, a full STI check including one trip to the STD clinic because although I insisted I had a long term partner they assumed it was related to sexual health.

Nine months later I saw gynae at university, the whole time taking cilest and 3-4 norethisterone daily to keep bleeding at bay, however no longer anaemic. Gynae suggested depo-provera might be useful in treating the bleeding, therefore took me off cilest and norethisterone. Following a three month check up gynae discharged me despite me saying I had pretty much constant (though be it lighter) bleeding because it was a symptom of depo-injection use.

After my second injection, and four months of bleeding my GP gave in and gave me norethisterone again because constant medium-ish bleeding is not easy to manage. Again referring me to gynae as this hasn't solved anything, this time it took ten months for them to see me. Every few weeks my doctor would insist on a two week break of norethisterone to see if the bleeding ceased, but of course it didn't. When I eventually saw gynae they cold me my ultrasound and swabs were clear and they would monitor me.

It's gotten to the point where I no longer remember what it's like not to take norethisterone, or forget for more than a day at the peril of agonising cramps and bleeding. Alongside this I've developed constipation, which doctors suggest could be to do with the norethisterone or a new symptom courtesy of endo. I've also had bleeding after sex occasionally, sometimes every time for a month or so then sometimes once in a month.

I no longer feel like a normal twenty year old, I take tablets to stop bleeding and no one has ever given me a reason why. I can't imagine a future where I deal with side-effects or bleeding constantly, and I just feel helpless.

Has anyone got any advice? On and off (mostly on) I've been on norethisterone for three years, is this even safe? Has anyone had anything similar? I have had ultrasounds and examinations but more than an occasional inflamed cervix nothing is found. I'd just like someone to tell me why me, and why I have to medically control my bleeding and why my body suddenly stopped being capable of doing it.

Written by
MC97 profile image
MC97
To view profiles and participate in discussions please or .
Read more about...
1 Reply
Stresshead24 profile image
Stresshead24

Hi This sounds awful... I don't have a real answer but I have been recently diagnosed with quite severe endo (within the last yr) aged 36... however I was like you ... got my periods aged 10... really really heavy periods as you described. Around 17 I went on the pill and stayed on it until married and trying for a baby aged 29. I did have to swop to various pills in this time as I always got break through bleeding. I also remember friends could also take pill pack's back to back to stop a period and I could never do this. If i did i would still bleed. My periods have also always been long 7-10 days.

For other reasons I have been off any contraception for 6 yrs (I'm not allowed ant hormone) and my periods have gradually got worst ... hence my trip to the doctors and the finding of the endo.

I guess all I'm wanting to say is persist in getting some treatment as for all these years I just put it down to that was me and accepted I was someone with heavy periods.

You could ask to be referred to a BSGE centre who have specialists in endometriosis and get their opinion.

Good luck and sorry I don't have a better answer xx

You may also like...

Probable endometriosis, symptoms but no proof - I'm new here, any advice?

20s, had ongoing symptoms of: fatigue affecting everyday tasks and work, erratic heavy periods,...

Bleeding irregularly

of my months pill pack so I would expect to probably have a period again within this next week. Has

Advice on pelvic/bladder pain and irregular bleeding

on my second lot of Zoladex. After my first injection I bled for two weeks i was also sick! In...

I'm new here and all in a tiz

I was referred to gynae last year because of my heavy periods, pain and bleeding during/after sex. I

Here i attached the heavy bleeding photo. Sorry for that.

15th May I had heavy period so I took 2 pills per day and tranexamic acid tablet 2 per day. 17th...