Endometriosis UK

Waiting to be diagnosed!


This is my story so far...

I started my periods when I was 11 and I suffered excruciating pains. They lasted 7 days and I had to have time off school for at least 3 days.

I kept visiting my GP and they were not interested, they just kept saying they will ease. I can remember learning about periods in science and the teacher saying that you should only bleed about a tea spoon, well I flooded for the first 4 days of my period. I was sick with them and no tablet helped. The pain was unbearable.

By the age I was 14 I was put on the Contraceptive Injection to deal with the pain (I was not sexually active at this point). My periods stopped and I was able to cope.

Between 18 and 24, I switched between the Implant and Cerazette (I cant have estrogen), and my periods returned again with sharp pains, flooding, clots. I went back to the Dr and again was told I was too young to have Endo!!!

I have had the Implant in since Feb 2013 and for the past 8 months I have experienced more pain again. Sex was never particularly painful but for the last 2.5 years, it has been horrendous, sharp shooting pains that cause me to burn up, go dizzy and be sick!

I went to the Drs again 3 weeks ago and demanded that something is done. I was referred to have a Scan (Internal and External) and they found a 4cm chocolate Cyst on my left Ovary! They have referred me to the Gyno at the Hospital as an urgent.

I have been having tight pains in my lower abdomen area and a dull achy weird feeling, so i went back to the Drs and he did an internal and said my bowel is extemely swelled, I am constipated and I have a water infection. I asked if it is related and he shot me straight down with a definite NO!

My mum has Endo and was diagnosed at 25 with severe Endo. I am now 27 and I am scared to death, it has took so long and we don't have children yet.

Can anyone please help?

Lisa xxx

3 Replies

Hi Lisa - I sent you a brief reply in someone else's post. I feel so sad that women are still being treated like you have, being told that you are too young to have endo and being given medication to mask it for years. Please can you click on my name and read my first post on endo and its many possible symptoms, the one on Pouch of Douglas endo and on how to find a specialist centre.

You are not waiting to be diagnosed as the chocolate cyst confirms you have endo. You are likely to have a laparoscopy now to find the extent of your endo. They may treat the more superficial disease but if you have it involving your bowel you must be referred on to a specialist centre for thorough treatment. x


Hi Lindle

Thank you for your response. I have read your article and it is amazing to see I have almost all the symptoms on there!

From the Dr telling me I got stage 1 contractions when I was 13 to the excrutiating back and leg pain I suffer every month.

Especially, the bowel problems, which my dr has told is unrelated!

I was prescribed Northosterone and mefanamic acid, which since reading on here are used for endo sufferers.

I just don't understand how they can leave it this long. I am petrified it will affect my fertility. We werent planning on children yet, as I am going back to university to be a teacher. This is why I feel I need to know what stage etc I'm at.

Lisa xxx



I have come on my period this morning, however I'm not due until 4th July. I woke up feeling sick and with stomach cramps and leg pain.

I feel so annoyed at the Dr, surely if my body was getting ready for the early period then that's why my bowels were inflamed.

I just feel like screaming

Lisa xxx


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