Donna's Story "More education is needed"

My periods have been extremely painful and heavy from the start. I can’t exactly remember which age I got my first period. However, by the age of 14, they were 10 times worse. For the first three days, I would stay in bed, even throwing up because of the pain. I tried everything to relieve the pain: warm baths, hot water bottles, pain relief. Nothing seemed to help. Then, one night, I ended up in the hospital in extreme pain. I was in and out for a week when they decided to perform a laparoscopy. They discovered I had a total of 20 cysts on my ovaries. At this stage they did not officially diagnose me with endometriosis - they diagnosed me with polycystic ovaries.

As the cysts were drained, I thought I would be OK after the surgery. I was mistaken. After that surgery, my periods were even worse - extremely painful and heavy. It affected me at my Polytech course - I constantly had to take time off, and I failed the course, leaving with no qualifications.

For years I carried on with painful and heavy periods. The doctors put me on the Depo Provera injection claiming that it may help. I was on it for six months until I had to be taken off it. I got extremely ill. I lost so much weight I dropped to 48kgs. I was majorly depressed and had mood swings like you wouldn’t believe. My mother actually thought I was on drugs. I don’t blame her either, because it looked exactly like that. She then realised the injection was doing this to me. I lost numerous jobs because every month I had to take time off work. Because of the pain, I couldn’t stand up. Employers thought I was just another teenager who complained and didn’t want to work.

We tried every single contraceptive pill on the market and none worked. They either played havoc with my depression and I was just a basket-case, a mess - or they made my periods worse, to the point I would bleed for most of the month. They tried me on Depo Provera tablets which also didn’t help. In the end, I gave up and had to put up with it. I stayed off all contraceptives as they made me worse, and just tried to push through it.

I didn’t really know about endometriosis. I went to get a smear one day and saw a flyer on the wall saying "Do you have any of these symptoms?" - it listed them and at the bottom said "you could be suffering from endometriosis". I ticked pretty much every symptom on the list. This is when I started to investigate further. I was suffering from abnormal smears pretty much every smear test I had. I had to have Lettz Treatment in the end (which is a surgery to remove cells that are close to being cancerous) and they also did another laparoscopy to check for endometriosis. They told me I DID NOT have it.

A few weeks after the surgery, I was having bad cramping and slight bleeding (though it was due to the surgery). After having blood tests, they advised I was in fact pregnant. A scan showed I was 8 weeks pregnant, so all further investigations for endometriosis had to be put on hold. I ended up having a healthy baby boy who is now four years old. After my son was born, I spoke to them further about endometriosis. They told me that now I have given birth I may find things would settle down with my periods and pain. Well, they were 100% wrong. My periods were yet again horrible, heavy and painful. I spoke to my doctor yet again and they kept telling me that it was most likely scar tissue causing the pain from the Lettz treatment and other surgeries. Once again I gave up. They put me on the mini pill, and when my son was six months I fell pregnant again; yes, while I was on the mini pill.

I unfortunately miscarried the baby. I remained very ill and bleeding a lot heavier and ended up battling with anaemia (low iron) and every time I had my period my iron levels would drop from losing so much blood. I kept going backwards and forwards to doctors, family planning, specialists you name it. STILL, I did not have endometriosis even though I had every symptom (so they said).

Between having my son four years ago and having another live birth in 2011, I suffered five miscarriages. I found out there was nothing wrong with the babies; it was my body making me miscarrying (the foetus’ were tested after having a D&C).

Finally, at the end of 2012, I had a follow-up appointment with a specialist as bleeding and pain were bringing me down yet again. I had an internal done and straight away the specialist said to me: “You definitely have endometriosis and a tilted uterus”. You have no idea how much of a relief it was to hear that diagnosis. Only because I now knew it wasn’t all in my head. I am on the waiting list as we speak to have ANOTHER laparoscopy to get rid of the endometriosis and to have a Mirena inserted. I should be close to having it done soon.

Endometriosis has effectively ruined my life. It caused me to have severe depression, it affected relationships as I was constantly ill, and my partners couldn’t cope. It affected working as employers couldn’t deal with it. It made it hard to cope with my sons when I was laid up in pain.

I am hoping this surgery helps and the insertion of the Mirena too. I was getting to the point I was begging the doctors to perform a hysterectomy or have my tubes tied. They wouldn't perform either as I was only going on 25. If people don’t fully understand what endometriosis does to someone, they put it down to you being a drama queen. I got that A LOT. Unfortunately I am battling other health problems at the moment, but getting at least this one sorted will be a huge relief. I am sick of living my life on pain-killers and bed rest during a period. Lucky for me at the moment I have a partner who is understanding and supportive and does not bring me down when I am laid up with period pain. Trust me, having someone that understands and supports you helps a lot.

I hope that people become more educated on this as they really need to be. It’s not just oh damn painful periods and heavy bleeding for a few days; it really does affect your whole life.

Note: the only definitive diagnosis for endometriosis is via a laparoscopy. There can be other causes of period pain and heavy bleeding – Annette, Insight Endometriosis.