Joanne

With endometriosis, a lot of awareness is around the condition and things you can do with pain management. That’s not where I start when I offer advice, because for me, the biggest thing learnt is from a self-care aspect.

I was very ‘lucky’ in that I was diagnosed when I was 18; I had a very strong mother who insisted that there was a problem and I needed to see a gynaecologist. This was in the late 80’s and back then it was unheard of for a girl of my age to be diagnosed with endometriosis. Twice a month; at ovulation and when I had a period, I would be on the verge of passing out with pain. I would vomit and be in a ball of fire for 2-4 hours, in so much pain I couldn’t even move. The doctors’ attitude was, ‘well let’s just put you on the pill, that will make it better’. I remember skipping down the stairs thinking ‘I’ll be ok this month, I’m better’ only to collapse in the kitchen with the pain. And I mention this because when I share my success with alternative therapies people often say ‘placebo’, but if it was a placebo effect, the pill would have worked back then when I was fully expecting it to take the pain away. But it didn’t.

The average time for diagnosis of endometriosis back then was 11 years, now it’s around 5. Because it’s associated with periods, it is often dismissed as ‘just period pains’. With the condition, the endometrial cells grow outside of the womb, they attach to parts of the body that don’t have that womb ability to shed every month and shift them. With endometriosis, its actually growing inside the wall of the muscle. When we have a period, the body produces hormones to empty the womb, similar to when you go into labour. But with endometriosis it can’t shift them, so the body produces more and more of those labour type feelings. The cells build up over time and it doesn’t have to be a great deal of cells to cause pain; it can be a microcosm of cells that cause a huge amount of pain.

At 18 I was given the laparoscopy, which is where they look with a camera under a general anaesthetic and laser off the endometriosis cells; basically, that’s all they can do. So, I had this surgery and then was offered anti hormone pills and was told ‘it will stop if you get pregnant’. This is a total lie. There are many women who have had babies and then the endometriosis comes back again. So, you end up on this treadmill of trying to stop the periods with hormone tablets and dreading when you are going to be in pain again. I had some success with alternative treatments, with homeopathy I was able to be pain-free for a couple of years but when anything stressful happens you feel it in your body. The endo flares up even worse than before. I got to the point in my late twenties where I was so exhausted by the pain; it was the despair of being in absolute agony every month. I had skills; hypnotherapy for pain management and being able to enter into a trance and hide, just disconnect the body from the pains saved me so many times. And I say save me, because I was planning on taking a kitchen knife and taking it to my bedside table so that when the pain came, I could stop it.

It’s not the pain that gets you, it’s the despair. This condition is relentless and exhausting. It’s not like when it stops you jump up and get back to it because your bodies endocrine system is depleted. And that’s just on day 1. I would have day 1 in excruciating pain and then have day 2 and day 3 kind of like more normal period pain where I would stay at home with a hot water bottle and if I was ovulating, this was happening twice a month. So, it was half my life, just gone. Homeopathy and hypnotherapy were successful for me in my 20’s, the ability to go into trance and distance myself from pain saved my life.

Eventually I made the decision to have a hysterectomy, it wasn’t a hard decision because I was in so much pain. I’m a spiritual woman and I know full well you have to heal yourself first; you have to heal yourself emotionally but when there is a physical condition, you have to heal that physical body too. I’d done a lot of work with myself and with complimentary medicine, but I was in so much pain and on horrible hormone tablets that were messing my mind up completely, it still wasn’t living. There was a strong possibility that I wouldn’t have children naturally with my condition, so I opted for the hysterectomy. They don’t tell you there is about a 50% chance of success in terms of resolving the pain.

So, I’d been married about a month, I had the hysterectomy and I was pretty much ok at that point. But it hit me a lot harder than I thought it would a bit later. Probably because I started to feel a lot better, I started to feel healthy and like I would be able to be a mother for the first time ever. And now I couldn’t. This opened a big wound, and it was about being a ‘real’ woman. I think this is an issue for all women who are unable to have children or have to have a hysterectomy unexpectedly. We don’t realise how connected we are to our wombs in terms of our own identity. About four months later, my husband who was in the RAF at the time was then posted off in Iraq and while he was away my grandfather died, and my brother’s girlfriend fell pregnant. My world just fell apart.

Sadly, my husband came back from Iraq with post-traumatic stress disorder. You can imagine, two people in a whole world of pain. At this point I was doing healing work on myself and I realised he wasn’t getting help and I made a conscious decision to stop this and put my husband first; it was absolutely the right thing for me to do because he needed me. But it broke me, and I knew that it would when I made the decision to put my healing on hold. I helped him and guided him back to who he was but by this time I was an absolute wreck and we needed to separate for a while because we’d become so different. We needed time to heal.

After this separation we came back together as friends, and after time, we came back together as lovers and now we are husband and wife again. There are no black and whites of the story of self-care and self-love, we all have to make these decisions even if they pull us off in another direction. You have to trust in the long-term path. Once our marriage was back and we were together, I was still having tremendous problems with pain. The endometriosis started attacking my ovaries so I was at the point I couldn’t really walk because of the pain, so I had one ovary removed and then soon after the second one too. This meant I was plunged into full-on menopause which is a whole other story! The way that I live my life now is very much every day and I ask, ‘what does my body need, what does my mind need, what do my emotions need?’ The needs are not always met every day, but I absolutely trust in listening to myself.