I’m not one to piggyback off every awareness day, week or month, but I feel this one needs a special mention.
3-11th March is Endometriosis Awareness Week. I never really talk about this, so this isn’t easy for me, but I wanted to share my story.
Firstly let me now tell you a little about what endometriosis is. It is a debilitating condition where tissue that behaves like the lining of the womb (endometrium) is found in other parts of the body. It can appear in many different places, including the ovaries, fallopian tubes, inside the tummy, and in or around the bladder or bowel. Endometriosis mainly affects girls and women of childbearing age. It’s less common in women who have been through the menopause. The thing about endo (as I call it) is that many women don’t even know they have it. Often it goes undiagnosed for years. Women and girls often get told that they just have painful periods and should deal with it or the pain is put down to a stomach issue (usually IBS or something similar).
For as long as I remember I have struggled with painful periods and unexplained stomach pains. I have been in and out of hospital with suspected diagnoses ranging from crone’s disease to IBS to appendicitis. It was only when I was taken in for an appendectomy (for a grumbling appendix) about 10 years ago that I was diagnosed with endometriosis. When I came round from the operation I didn’t even know what endometriosis was, but after some careful Googling I started to understand the condition a little more and many things started to make more sense (i.e. why I had been in so much pain for so long). But then life got in the way. My 20’s took hold… I focused on my career, went on dates, met new people and had a lot of fun… I subsequently put it to the back of my mind and took the pill (which is said to help due to the hormones).
It was only when I had settled down with my husband, and started thinking about a family, that my pain got really bad. This is because I came off the hormones. I went through a spate of hospital trips, time off work and doctors’ appointments before I realised that something had to be done. I finally managed to see a specialist after months of pushing my doctor to refer me and multiple trips to A&E. After almost a year of really pushing the doctors and specialists, I managed to get myself in for a laparoscopy (that’s keyhole surgery for those not in the know) to see what was going on in there.
I was hoping it would be a simple procedure, keyhole surgery to remove the bad bits and then I would feel better. Not to mention the underlying hope I had that this operation would help me conceive (by this stage we had been trying for a while). Unfortunately when I came round from the anesthetic the doctor told me that it was far worse than he had expected. I had endo everywhere. I fact I was riddled with it. In my uterus, bladder, ovaries, bowel, fallopian tubes, diaphragm and so forth. I would need a further operation with bladder and bowel specialists present to try and remove it, but this operation wouldn’t be without its risks and they weren’t keen on doing it unless absolutely necessary. They did have some more positive news for me though in that they had run some dye through my tubes, which were fortunately clear. This was good. I also had a number of cysts on my ovaries which they removed too. Whilst I felt slightly reassured by this piece of good news, overall I felt completely and utterly dejected. Gutted that it wasn’t an easy fix, sad I would have to continue to live in pain and devastated that I may not be able to conceive.
A few months later however my life changed forever, I found out I was pregnant. I couldn’t believe it. Despite the extensive endometriosis and ovarian cysts I was actually able to have a baby. My miracle baby.
Five and a half months into being a mum to baby Amelia, I am certain it was the operation which helped me conceive. And I cannot thank my surgeons enough for putting a big focus on my fertility during the op, even if they couldn’t remove all of the endometriosis at the time. People tend not to suffer during pregnancy due to the hormones, so I have been pain free for over a year now. But I dread it coming back and pray that it doesn’t – at least not with the same force.
But I have to say I am lucky, really lucky… and I know not everyone is as lucky as me. Many have to wait years and years to see a doctor or get taken seriously, let alone get on a waiting list for an operation. And whilst my pain is enough to occasionally put me in hospital, I only had it once a month or thereabouts.. Some poor ladies have constant pain and have no idea what is causing it.
So I share my story with you today in the hopes that I can help raise awareness of this silent and debilitating condition. If just one person who reads this has similar symptoms or is worried about endometriosis gets themselves to the doctor then hopefully my blog has done some good. Because if it is #1in10, then someone who reads this will be a fellow sufferer, so let’s stand together and fight this.