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.