I have a very different relationship with my endometriosis than most.

I got my period young (11 eek!!) but never had any period pain. My sex life was normal and pain free. I even had two beautiful kids no problems at all, as well as an unfortunate ectopic pregnancy while I had an IUD, fertility was definitely not a problem.

However when I had my ectopic pregnancy, the surgeons removed my IUD. It had failed, they said, so there is no point keeping it in there. After that surgery I never got my IUD replaced, I was scared that it would cause another ectopic pregnancy. So I was completely off hormonal birth control.

Fast forward to one year after my ectopic surgery. I am lethargic, I have pain constantly, excruciating pain during sex, constant nausea, oh and did I mention the constant pain?! I went to the GP who encouraged me to go back to my gynaecologist (who also performed my surgery).

When I got there I briefly described what was going on, while she looked up the notes from my surgery. Without missing a beat she says “well that would be your endometriosis flaring up.” Excuse me!! I did not know about this. I asked why she didn’t tell me about this when she operated on me, and she just assumed I already knew.

Fast forward another two years now. I have had one surgery to remove my endometriosis, I have an IUD AND have to take the pill daily, and my pain is continuing to get worse. When I ask about what we can do to help reduce the pain, my next step is a hysterectomy. Which I am not ready for. My relationship with my husband, my body, my sensuality is hanging on by a thread because all the hormones are changing me, I have no libido, they affect my ability to remember things, they change my moods. They just suck.

During this process I have felt betrayed by my healthcare practitioners for assuming that I knew things about my body. I have felt angry that people don’t understand that I physically feel so sick, even though I look ok. Frustrated that people don’t realise the effort it takes to get through a days work.

I felt angry that doctors did not have more answers or options for me, they tried two things and now the third option is to remove my organs, I didn’t think that was fair. I was sad (devastated) that my relationship was falling apart because our sex life suffered so much. I felt angry/confused/sad that my body had betrayed me.

Now I still feel a lot of that sadness and anger. However I have learned and am still learning how it is best for me to deal with my pain. I am learning how to take it easy. I am learning not to pressure myself to do things I used to be able to do. I am learning to be forgiving and patient with myself and my body. It’s not an easy thing to do nor do I do it perfectly every time (or most of the time!).

If I would have known the road ahead, I would’ve pushed for more answers earlier on. I would have got an earlier second opinion. But most of all I would tell myself that it’s ok to grieve the life you knew. It’s gone! Of course your going to be sad, and of course your going to be scared or hesitant about the future. It’s not what you had planned. But you are strong and you will get through, even if it is by crawling on your hands and knees!

One of the hardest things is not knowing what to ask when you go to the doctors. And not having people to share your story with that understand. I found that once I was diagnosed and they had done all they could medically, the specialists failed to point me in the direction of support, for the emotional component of Endo (let alone mention that it could be a problem). Maybe this was because they were aware about the lack of support groups for endo sufferers and their families.

I think it helps when you know that you aren’t alone in things. I would have liked to have known that early on.

This story was a contribution to the Storylines: Her Voice Matters project, a collaboration between Women’s Health Goulburn North East, Women’s Health Loddon Mallee and Murray PHN.