24 Mar

endometriosis – an invisible illness

endometriosis

I’d like to introduce a guest post by Jess, on an oft overlooked illness affecting women all over the world.

I’m not a doctor, I’m not a specialist and I’m definitely not an expert but when one of my favourite bloggers, sub of subsmissives, asked if I’d like to write an article for his blog about endometriosis, I had to say yes. No I’m not an expert but I am a sufferer and endo has changed my life.

Despite affecting somewhere between 10 and 15% of people with wombs of reproductive age,
before my diagnosis, endo is something I’d vaguely heard of but knew next to nothing about. The more I talked about it with friends, family and even the sex positive blogging/tester community, I realised neither did they.

Endometriosis is a condition where cells similar to the ones in the uterine lining grow outside the womb; these cells attach themselves to other organs in the pelvis instead – usually the ovaries, fallopian tubes, bladder or bowels.

endometriosis

The cells act just like the ones inside your womb so they thicken and bleed with your monthly cycle but as the blood can’t leave through your vagina, it’s trapped in your pelvis causing pain and scarring.

The main/most common symptoms of endo are painful periods and pelvic pain outside of your monthly cycle but other symptoms may include pain during sex, painful bowel movements and infertility. Perversely the level of pain suffered doesn’t indicate the severity of the condition and some people have no symptoms at all.

I’d always had painful, irregular periods so when at 16 my doctor recommended the pill I was happy to give it a go. He never suggested there might be anything wrong or the cause might need investigation; I was happy to go along with his suggestion and didn’t really think about it for the next 8 or 9 years. On the pill things settled down, I still had a lot of pain but I just assumed this was normal and I was just glad I could finally predict my cycles.

When I started trying to conceive in my mid 20’s and finally came off the pill my problems really started.

After a year I was diagnosed with PCOS (poly-cystic ovary syndrome) and to help me ovulate, and hopefully become pregnant, I was prescribed clomifene. My cycles on the drugs were horrendous, I was in agony most of the month, woke in a pool of blood several times, became anaemic, suffered horrendous mood swings and worse of all, did not conceive.

Fast-forward another year of endless scans, blood tests and heartache before I was sent for an exploratory laparoscopy. Two small incisions would be made along my bikini line to insert tools with a further incision inside my belly button where a small tube with a camera attached would be inserted so my consultant gynaecologist could get a better look at my reproductive system.

Groggy from the drugs, sore as hell and bleeding heavily I was given the news that changed everything. I had endometriosis and the damage was extensive. I had heavy scarring on my cervix, ovaries and outer womb which had been lasered off during the surgery but also both fallopian tubes were completely blocked and damaged beyond repair.

Whether the clomifene prescribed for the PCOS aggravated my endo or whether the damage was already done I’ll never know but as the nurse held my hand and cried, I knew my chances of becoming a parent were disappearing.

IVF or adoption are now my only options and neither of them is quite right for me at the moment. This may change in the future, who knows.

endometriosis

There has been very little investigation into the causes of endometriosis and treatment seems to revolve more around managing the symptoms, assisted fertility or attempting to remove the problem altogether via hysterectomy.

The laser treatment I had was only temporary and I still suffer with pelvic pain most days; whether I have a hysterectomy in the future will depend on how well I can cope with the pain and some people have been known to continue to suffer symptoms even after their womb has been removed.

So why am I writing about this on subsmissives? Because endometriosis isn’t understood, or talked about or known.

1 in 10 women of reproductive age suffer from endometriosis, that’s an estimated 176 million worldwide. It’s the second most common gynaecological condition in the UK. How can a condition affecting so many people have such little awareness?

March is endometriosis awareness month, myself and many other sufferers worldwide are trying to give a little more insight into endometriosis and want it means to us. Thank you Sub for giving me a platform to speak about something so close to my heart.

For further advice and support, try these reources:

endometriosis UK

NHS choices

Thank you Jess for sharing your story.

2 thoughts on “endometriosis – an invisible illness

  1. That is so sad 🙁 But it has motivated me to get some mystery symptoms checked out. Thank you for sharing your experience and I hope your symptoms are somehow relieved in the future!
    Aurora x

  2. Ive worked in health care for a while, and Ive seen so many women dealing with this. It is so frustrating, and it can be so painful. I just hope research progresses treatment and prevention in the future.

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