Jo Greenbank's story

Until 24th April 2008, I had never heard of endometriosis.

For the past 13 years, I have visited the GP on a number of occasions with painful periods. I have been prescribed painkillers and have tried different contraceptive pills. I just thought the pain was ‘normal’ and that it was something I had to put up with.

In the year leading up to April 2008, I had been having more persistent pain for about 2-3 weeks of every month. I visited the GP and it was suggested that I had thrush or urine infections.

However, at the beginning of 2008, I had a couple of episodes of vomiting and acute pain. I was also due to have a smear done, but was in so much pain when I visited the GP, that she referred me for an ultrasound scan. The scan revealed an ovarian cyst, which I was told had been the cause of the acute pain.

I was referred to a gynaecologist, but by the time I had my appointment and examination, the cyst had gone. In tears, I described to him the pain and problems I was having and he advised a diagnostic laparoscopy.

There, my ‘endo journey’ begins.

Waking up from the operation, and whilst in a morphine-induced state, my gynae told that me that I had endometriosis and he had used diathermy to treat it. To be honest, I don’t actually remember much of the detail of what he said or what it meant.

I remember a couple of hours later asking the nurse what endometriosis was and if she had a leaflet about the condition. The hospital didn’t have any written information, but the nurse kindly explained a bit more about it to me. Most of what I subsequently learnt about the condition was picked up over the internet – I found this both helpful but at times depressing – you can sometimes get too much information.

I had time off work to recover, but didn’t ever feel pain-free. I had my post-op consultation with the gynae and was put on the pill to control the symptoms.

I went back to work and felt that everyone expected me to be fine because I’d had the operation. I felt isolated but at the same time was uncomfortable talking about it, because I didn’t understand it much myself and talking to male colleagues about it was a little embarrassing.

I had been advised to take three packets of the pill in a row, with the aim of stopping my periods. This didn’t happen, and at one point I was bleeding continually and having what I now describe as ‘endo-type’ pain all the time. I felt as if I was ‘eating’ painkillers. Therefore, after a referral back to the gynae, I went back into hospital for my second laparoscopy on 5th August 2008.

The endometriosis had reoccurred - I had laser treatment and was fitted with a Mirena Coil, again to stop my periods and manage the symptoms. In March 2009, however, I was still having pain for two - three weeks of every month as well as bleeding. I started Provera, and for the first time in a long while, I had a couple of months of relatively little or no pain. That’s a strange sensation when you have been used to the pain for so long. However, after a couple of months, the pain returned and in August 2009, I have just had my third laparoscopy.

Since the second laparoscopy I have tried to channel my energy into something more positive and look for alternative ways to manage the pain and related symptoms.

Aside from the pain, what frustrates me most about the condition is that not many people know about it; and the information provided is sometimes limited and often confusing.

Group Leader, Jo Greenbank

Meanwhile, Endometriosis UK is battling away, doing good work, raising awareness, providing support and information and I would like to help others in my position to find some support locally. Meeting the existing volunteers on the training was a breath of fresh air – all of the volunteers have knowledge of endo, either through their own suffering or by helping family members, and they give their own time and energy to provide support, encouragement and raise awareness.

I have also looked for other ways to cope with the pain. I felt very low after my second operation – I was scared that the endo had returned so soon and I was worried what would happen next. I spoke with my GP about getting counselling and found a fantastic NLP counsellor and hypnotherapist who is helping me cope - not just with the endo but also with other aspects of my life. By talking with others who have endo, I have also learnt more about the best way to use painkillers or alternatives to manage the symptoms.  I have also started practicing yoga, which helps with relaxation and gives myself time to switch off from everything else around me.

I have been continuing to struggle with managing my work, life, and the condition, and I am scared about what the future holds – I am 32, still looking for Mr Right, and I would at some stage like to have children. I am hopeful, however, that things will get better and am glad I can give something back through my work with the local support groups.

"I have tried to

channel my energy

into something

more positive"

The first step for me was joining Endometriosis UK as a member. I found the website a great source of information. I attended the Information Day & AGM in October 2008 and for the first time met other women suffering with the same condition – women who know what it is and how it affects all aspects of your life, and who know what the pain feels like.

Following on from the Information Day, I attended a training weekend to become a group leader and I set up the St Albans Local Support Group earlier this year, with the full support of my own gynaecologist. We had our first meeting in March 2009 and have now had four meetings, featuring specialist speakers on endometriosis, fertility and hypnotherapy. I have over 40 women listed as group members, all seeking support, information, and to share experiences with women in the same position. Partners and other family members also attend the group. I also help to run the Central London Support Group, which has over 150 women listed as group members.