Sioban Brennan's story

I began menstruating aged 11 and can remember banging my head against my bedroom wall just to detract from the pain in my stomach. I always had to wear thick towels, sometimes two at a time, as my loss was so heavy. I first went to my GP when I was 15 as I had had a period lasting five weeks and was at the end of my tether. The doctor put me on the contraceptive pill and sent me away.

I had a baby at 18 and was relatively pain-free until after the birth of my second son when I was 20. The pain returned with a vengeance. I was told I was constipated or had pelvic inflammatory disease (PID) and sent home. It was only when I returned to my GP a few months later that I was given pain relief and a leaflet. I went on to have another son when I was 23 and following complications, retained placenta, the pain became unbearable. The blood loss and clots from then on made going out during a period impossible. I was in constant pain all month and becoming very depressed. I finally saw a different gynaecologist who immediately suggested a laparoscopy when I was diagnosed with endometriosis. Eight years after first going to my GP I finally knew what was wrong.

"I think the NHS

should have these

support groups

on prescription!"

After being told it was normal to have painful periods and feeling like a faker and a fraud for years, at last I knew what was wrong. When the doctor came to see me after I came round from surgery to tell me what they had found I could have hugged her! I think she thought I was mad! However, prior to going in to hospital I had told my husband that if they told me there was nothing wrong I didn’t know how I could go on. I was virtually suicidal and not just from the pain.

I kept a diary during that time and one entry read: “I am constantly talking about how much pain I am in. I am bored talking about it, how must everyone else feel listening to me?” I was very depressed and felt no one understood. How come my periods affected my life to such a degree? Did I just have a low pain threshold? Was I an attention seeker? These were the thoughts going through my head. I suffered from post-natal depression after two of my sons and believe endo was a contributing factor.

It broke my heart on one occasion when my five year old son told his younger brother not to climb on mummy’s lap because mummy had a sore tummy. I didn’t want my children growing up as my carers. Although friends and family were sympathetic I knew they didn’t fully understand. One friend who suffered badly from PMS told me that she wished she could swap places with me as she’d rather have the pain than the mood swings she suffered!

Although I had been diagnosed I was given no advice other than pain relief. I had to research endo myself. I wasn’t given any leaflets or told of any support groups. Little did I know then that the hospital where I had my laparoscopy housed a wonderful group!

I finally found out about the group and decided to go along. I had previously attended a support group for post-natal depression and decided it wasn't for me so was a bit cynical about going to another support group. However, I was overwhelmed by the difference of this group; I actually cried on the way home, but this time with relief rather than pain or upset. It felt so good to finally talk to other women who knew exactly what I was going through!

Anna, who runs the group, is fantastic at putting people in touch with others who have had similar experiences, in the same age group and situation. For example, when I was preparing for my hysterectomy she gave me the number of a girl who had recently had the ‘big op’, a mother also and in her twenties (I had my op at age 26). It was great to talk to someone who knew exactly what I was going through and who could give advice on how to cope with the everyday things as well. Since then Anna has put me in touch with other women experiencing the same issues I did.

The group is a place where people can share their experiences with different procedures and drugs. A surgeon sometimes doesn’t have the time to explain everything, but at the group there may be many women who are happy to discuss in detail what may happen. Many useful pieces of advice are shared that a doctor wouldn’t even think of! Like don’t put your HRT patch on your bum when wearing cream trousers!

Mentally and emotionally the Belfast support group have done more for me than any pill ever could have. To finally be able to talk openly and honestly about how I felt saw me through many dark times. I knew there was always someone on the end of the phone when I was feeling very low.

Although there have been very sad times at the Belfast Endo group, many tears have been shed, it can be a happy place. Some months we have themes; reflexology and shiatsu, salsa and Irish dancing, flower arranging and crafts. We have speakers along and invite health professionals to come and learn more about what it is like to live with endo.

I would highly recommend, and have to many girls, that they find a group near them. The support and empathy makes living with endo bearable. In fact I think the NHS should have these support groups on prescription!