Maeve’s Story
I didn’t get my period until I was 14 and symptoms started pretty quickly so I thought that is what periods were like. I remember them being really painful and walking bent double around school when I had my period, with cramps, back pain and a packet of paracetamol always in my schoolbag. I thought it was normal and that I just had worse ones than most people or that I was a bit too sensitive to them. I also struggled with pretty severe PMT which again I thought was what most girls had and I wasn’t able to handle mine as well so also felt a bit ashamed. I went on the pill at 17 and that seemed to settle things down somewhat although my moods were still definitely affected and I still had a lot of symptoms, pelvic cramps, lower back pain, diarrhoea, fatigue and bloating along with occasional severe attacks which I put down to digestive issues.
It was only when I came off the pill at 27 to try for a baby that I started to realise that there may be something else wrong. I began to have severe pain that would wake me at night at times. We had moved to London and I went to the doctor after one such attack and he insisted it was a kidney infection even though I told him I had had kidney infections in the past and that it wasn’t. A few months later I moved GPs and was sent for a pelvic scan where they saw two large chocolate cysts which I had never heard of on my right ovary. After a laparoscopy several months later, I got a diagnosis of stage 4 endometriosis, this was over 15 years ago so considering it was not well known then, I think I was very lucky to get diagnosed quickly. It seems to depend on the right doctor not just dismissing it as routine period pain or putting it down to stress or anxiety.
“I did three rounds of IVF and what seemed
like endless drugs and injections before we
got lucky”
The next year was spent trying to remove the cysts and the adhesions. The first attempt at surgery had to be abandoned after they went in and saw that the cysts, adhesions and scarring meant everything was stuck together and so too risky to try and remove. I went on a course of drugs to induce menopause for 3 months making it easier for the surgeon to remove the cysts. This is what happened but within a few months a cyst had grown back. I was referred for IUI and did 3 rounds of this before I went for IVF. The doctor said they would just leave the cyst and work around it. I did three rounds of IVF and what seemed like endless drugs and injections before we got lucky and I got pregnant. That was 13 years ago and now I have a daughter of my own and I do worry about whether as a hereditary condition I will have passed it on to her.
In recent years I have noticed a return of pretty severe PMT this could be my age but I think it is so familiar that it is also endo related. I consider myself very lucky to have gotten diagnosed early on and to have had successful IVF outcomes.
I would have found a service like Frendo invaluable to not feel on my own or that I was making it all up somehow. A supportive community is an incredible asset to have to hear from others that the symptoms are real, painful and exhausting but you are not alone.
