What’s not normal…

[WhatTheEndo]

Hi all,

Okay my first post… always suffered from painful periods remember being sent to the medical room at school for belly aches.

Yet after having my daughter at 24 I became anaemic from months of bleeding and have suffered since.

Been on iron supplements for the past 20 years. The odd internal scan over the years but always made to feel I was making something out of nothing. So I stopped complaining.

Until 3 years ago when I could no longer contain the flow… The loss of blood and clots of 10cm would cover the floors that lead to my bathroom.

I dialled 111 and was then treated as urgent.

All my other calls crying in pain were fobbed off as ‘oh maybe you had a cyst that’s burst’ or ‘it’s ovulation pains’

I was examined and a growth was felt on my left ovary… My journey began. An MRI showed severe endometriosis and endometrioma on left ovary.

I had my first laperoscopy, where adenomyosis was also diagnosed.

In the past 18 months I’ve had 3 hysteroscopies. 5 iron infusions. And hospital admissions n stay for loss of blood.

Despite having mirena coil in situ, taking provera, tranexamic acid and mefenamic acid the bleeding controlled my life. Nothing stops it! Unable to leave the house I was lucky if got the odd week break.

I then had the GnRH injection lasting 3 months… I’m awaiting my second surgery within this time 🤞 Taking tibolone to help with side affects.

I no longer really know what’s good or bad care… What’s normal with this disease.

From the pains in back to all the way down the legs. I now get intense pains in my chest too if that’s related I don’t know… Low mood and anxiety. They’ve given me anti depressants n codeine to add to the list of medications and omeprazole incase the pains heartburn

I haven’t been told my stage other than it’s caused infertility. I was never able to conceive after my daughter. But now found the endo has blocked my ovaries and fertility has advised that the adenomyosis gives me 3% chance of being able to carry a baby…

I’m not sure if there’s a question in here somewhere… Maybe just on the bleeding. Is it normal that with endo your bathroom can look like a crime scene 🩸

[Moon_maiden]

Hi

It’s a rotten disease and we don’t get the recognition for what we have to deal with. Sorry you’re having a really rough time, you’re entitled to feel the injustice of this disease, there is nothing to do with lifestyle choices that caused it. Please don’t let anyone make you feel the pain is nothing, it’s so very real.

I never tried for children but I hope you manage to get help. There is a drug being tested with positive results so hopefully it won’t be too many years before something is available

[WhatTheEndo in reply to Moon_maiden]

Thank you for your kind words…

[Bakewey]

To answer your question, unfortunately a crime scene it’s common with me too! I often use the term shark attack…

Pain in legs, chest low mood all felt as well.

Fingers crossed that now you are on a pathway, you will soon get the help/ guidance you need.

Wishing you all the best with your forthcoming surgery.

[WhatTheEndo in reply to Bakewey]

It’s horrendous! Thank you for your reply… Wish you well too

[AllthatGlitters]

Hello yeah the blood situation is normal for me too, I have adenomyosis, I just drip blood and clots, I spend time cleaning up or changing my knickers for the 3rd time in a day because I have soaked my pad 🤮

[WhatTheEndo in reply to AllthatGlitters]

A living nightmare. On a bad day there’s no pad to contain. I leak through my clothes, runs down my legs and the only thing I can do is stand in the bath until it passes… Then pick up the pieces… & mop the mess…

Thank you for your reply, I wish you well… Pleased I found this site to know I’m not alone