Guest post: More than 'just period pain' - the agony of endometriosis

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Crippling pain which often made me pass out or vomit became a regular part of life when I was about 13. But it was period pain, apparently, and just something I should learn to live with.

The first time I sought help was when, at about that age, I woke up with abdominal pain so bad that my mother rang the doctor. They suspected appendicitis, so my mother drove to the surgery straight away, which sticks in my mind as unusual, as we would usually walk. Vomiting from the pain in the surgery, I was given medication to stop me from being sick. It wasn't appendicitis. It was period pain. I was given painkillers and sent away. And felt embarrassed. Who vomits with period pain?

It took me years to learn that I have endometriosis. And much like people don't talk enough about mental health, or miscarriage - endometriosis isn't spoken about enough either. Yet it is a condition which affects one in 10 women, and a condition it is time we talked about.

On that day when I first sought help for my symptoms, the opinion seemed to be that all girls had periods, which were painful, so you just got on with it. I took painkillers, didn't go to school on the worst day and, living near the school, could run home at lunchtime to deal with the upset tummy I had every month. This just became part of life.

When I moved away from home and went to university, coping became harder. By my second year, I was regularly passing out with pain in the bathroom of my shared house. I met my boyfriend, now husband, who for a 19-year-old was surprisingly understanding when sometimes we had to stop in the middle of having sex, me doubled over in pain and trying to assuage his confusion that it wasn't anything he'd done.

Although I did go to the GP, the overriding message was that periods were painful for everyone. Take painkillers. Get over it.

It was about 10 years after my first appendicitis scare that I had another. I was living in London by now and in a shared flat with that same understanding boyfriend. I called him from the bathroom floor whilst he was at a party and he took me to A&E. Whilst they couldn't do anything for me aside from more anti-vomiting tablets, that doctor was the first to make any kind of connection with the crippling pain always occurring mid-cycle. He suggested for the first time that there could be an explanation other than 'period pain'.

Finally, in 2009, 14 years after my symptoms appeared, I had a diagnostic laparoscopy. Finally, it gave me a label for the problem: endometriosis.

The pain didn't stop though; month in, month out, I'd have to have days off work, or work from home, or go and seek assistance in public places. Transport for London staff are particularly understanding when you need somewhere to lie down. I spent hours in the toilets of shops, or cafés, waiting for the pain to pass so I could carry on, spending a small fortune on sanitary items, ibuprofen and those disposable heat patches which are so much more discrete than a hot water bottle. Although I had one of those too, in my desk.

I was lucky - I had an extremely understanding secretary who knew that drinking hot water helped, that the pain would pass, and that if she could just keep staff and clients away from me for an hour, all would be okay again. Thankfully there was also a loo two doors away from my office.

Despite my diagnosis, the follow-up support I received was almost non-existent. I was told to come back if the pain 'got worse' or if I got pain or bleeding after sex. So, I duly reported the incidents and often got sent back for a scan to look at my ovarian cysts, but, so far, none have been large enough to require treatment.

I had a baby four years after the laparoscopy. It only took just over a year to conceive - we were lucky. I know many people with endometriosis who took far longer, had IVF, or weren't able to conceive at all. Those nine pregnant months were a welcome respite. My periods returned after three months though, despite breastfeeding, and gradually the pain started to come back, but perhaps not quite as bad as before. So far.

And so this is what it is like to live with this so-called 'women's disease'. The label, used because it affects women, whilst being strictly accurate, is misleading. My husband's life is also affected by my endometriosis. For many men - they are also dealing with potential consequences of infertility or at least difficulties with conceiving.

Men are often embarrassed and or dismissive of the gamut of 'women's issues', in part because they don't understand, want to pry or, in fairness to them, treat women differently. But if we can talk about endometriosis more, if we can make men and women more aware of what it is and what it does to its sufferers, I think we could go a long way to helping reduce the stigma and embarrassment that surrounds it.

[mumof3boys33]

Gosh. Some of you seem to have really suffered. I only suffered a fairly mild tummy ache each month from my teens onwards.
Age 28 I started getting a pain low in my tummy, to one side. It gradually got worse. Just a nagging pain. I got checked for appendicitis, it wasn't that. A scan revealed 3 small (1.5cm) ovarian cysts. I got taken in for day surgery to remove them by laperoscopy. When I came round I was told they hadn't been removed as I had severe endometriosis and I needed a much bigger op. My womb was tucked behind my bowel, my ovaries and tubes were all twisted and knotted up. Strangely this hadn't caused any pain, it was just the small cysts causing the pain.
Several months later, after 6 months of hormone injections, to shrink my womb and simulate menopause, I had a 4 hour long op to unknot everything. I was told I may not be able to have children. At that time, age 28 I thought I didn't want children. Being told I may not made me decide I would like them after all. I was told that after my wounds had healed I should try for children for the best chance of conceiving. A year later I was expecting my first son. (I have 3 now)
I have never had a lot of pain each month. I'm obviously very lucky. But I often get pains in my bladder, I also get a sore feeling in my womb area, just randomly. Deep sex has always hurt too. But if I go to my gp with any pain I get told it's probably endometriosis causing the problems. So they don't take any notice.
Reading other people's stories I realise how lucky I've been.

[Helpmybrainsmelting]

I was told all sorts of things including being told I was hysterical. Before being referred to gynae I think I had three STD tests despite being with the same boyfriend and several smears. Even once diagnosed I was still getting fobbed off by professionals, being told it could not grow back after laser. It took me 7 years or so to be diagnosed, before that it was agony every month, vomiting, passing out and seriously effecting my job and social life. Plenty of times I went out to turn around once I'd realised that my period/Endometriosis was warming up for an attack.

I was diagnosed 10 years ago, I actually count myself lucky to have finally got them to do something at a stage of my life when I wasn't trying to conceive. It seems that many people only get the help they need when the struggle to conceive. For me this would have meant another 8 years of pain and the endorsement building up to a point where it could of serious effected my fertility.

I am thrilled that there is so much being done to make people more aware now x