1st April 2018

Endometriosis: My Story

I have endometriosis. And it is a pain in the bloody arse.

It impacts my life in all manner of ways and you’ll often hear me refer to it in one form or another. Not many people have heard of it and it can vary in severity, affecting each woman differently. Awareness *is* spreading about the disease, but more still needs to be done. One statistic that gets banded around is that it takes 7 1/2 years to get diagnosed. SEVEN AND A HALF YEARS.

You see, women are the only ones who suffer from endometriosis. And it centres around periods. Now do you see why it takes so long to get a bloody diagnosis?

So, it is only fitting that I share my experience and the impact endometriosis has on me. It may help you understand your body a bit better, but at the very least it will make more people aware of the impact endometriosis can have on someone’s life. And that is the common goal here.

So what is endometriosis? Endometriosis News sums it up perfectly.

In women, monthly hormonal changes cause the lining of the womb (called the endometrial tissue) to thicken in preparation for pregnancy. If the woman does not become pregnant, the cells naturally break down and “bleed” out of the body as part of the menstrual cycle.

Endometriosis occurs when these womb cells develop elsewhere in the body. They go through the same monthly cycle but have no outlet to leave the body once they break down. This causes inflammation (swelling) and potentially the formation of scar tissue in the affected areas.

Affected areas can include pelvis, bladder, stomach, bowel and ovaries, but there are many more organs where endometriosis can grow. The result of which is chronic pain and interference with how these bodily organs function.

But endometriosis effects each woman differently.

My Story My story begins in December 2015 when I originally went to the doctor with bladder issues. At first, it was that I constantly needed to go to the toilet, but it soon progressed into other symptoms such as thrush and IBS. I was in an out of the doctors near enough every single month. I was being treated for a bladder infection, but the antibiotics didn’t seem to be working and come April 2016 I was referred to a specialist.

My appointment didn’t come until June, but I was seen by an incredible women’s health clinic who did just about every single test she could do. She was the first one who mentioned to me that it could be endometriosis, so she referred me to a gynaecologist and ordered an ultrasound scan to see if I had any cysts. I had my scan straight away and it turned out that I did have a cyst, but I had to wait another two months for my appointment with the gynaecologist (Dr E, who we do not like by the way!) and when I did eventually see him, he dismissed me. Dr E completely ignored everything I had to say and he told me that the cyst that appeared on the first scan wasn’t worrying and that he would re-evaluate in 4 months time.

I left that appointment in tears. I was so fed up with not being able to go to the toilet properly and that I was constantly having thrush. With no diagnosis comes no way to treat it, so I was left feeling helpless. I decided I wanted a second opinion so I rang my doctor and asked to be referred to a Urologist. She obliged and a couple of months later I had an appointment.

More tests followed, but, again, nothing was being resolved. By this time it was April 2017 when I had a follow up with Dr E, but by a stroke of luck he was on annual leave and another doctor was covering his patients. Dr A was a lot more understanding, sympathetic and listened to what I had to say. He agreed that something more needed to be done, so he offered laparoscopic surgery to uncover what was going on. But, as with most surgeries, there was a waiting list and my appointment wasn’t scheduled until the end of July.

Even though I had to wait another few months with my symptoms, there was a light at the end of the tunnel. Come July, I went in, apprehensive but relieved knowing something was going to be discovered. Once out of surgery, Dr E came around and explained that I had endometriosis. The same person who just discovered I had the disease was the same one that told me 11 months before that there was nothing for me to worry about. I was completely shocked.

I was told that they had found endometriosis on my pelvis, bladder, stomach and bowel. It had also grown on my right ovary, so he moved that and burned away the endometriosis tissue. The stomach problems, bladder problems and thrush had all been because I had endometriosis tissue growing in these places and it was wreaking havoc on my insides. It all made perfect sense and I couldn’t believe I had been dismissed for so long.

I was given a leaflet and not much else. After having surgery you feel a bit groggy, a bit emotional and a bit torn apart. My throat was sore from the breathing tube and the gas that gets pumped into your stomach during a laparoscopy gets trapped in your shoulder that makes it unbearable to move. So the first couple of weeks were tough but I  had a diagnosis and I could begin to recover.

Fortunately for me, I caught a post-operation infection. Which doesn’t sound very fortunate but it is what lead me to the GP that I have now and she is fantastic. She was the emergency doctor on call that day and after explaining that I had just been diagnosed with endometriosis she gave me an action plan on how to prevent it from getting worse, something that should have happened at the hospital. I was put on the contraceptive pill and told to take it for 3 months and then have a week off before taking it for another three months again. It was a short-term solution, but the aim is to prevent your cycle, as endometriosis grows when you have a period.

My life returned to normal as soon as I started taking the pill, so after three months when I had to stop taking the pill for a week, I forgot that I even had endometriosis. I came on my period and the first few days were fine but on the fourth day I woke up with the worst cramps I had ever experienced.

I did what I usually do; take some painkillers and sat with a hot water bottle on the sofa. The pain wasn’t easing so four hours later I took some more, but they were still having no effect. Me and David had to do our weekly food shop that day, so I was walking around Asda bent over in pain. I couldn’t work out why it hurt so much. After coming home I went to lie down, but within a few hours, I was vomiting from the pain. I rang 111 who ordered me to go to A&E, advice which I ignored, but then my mum asked me to go cause she was so worried. Who can say no to their mum?

We turned up at 8 pm and I wasn’t seen until 10. By this point I was in so much pain, I knew that there was something seriously wrong. I had tests taken and was put on a drip but I didn’t get admitted until past midnight. It was a long nightAt first, they were worried it could be my appendix, but knowing my history they knew it was more likely to be a problem with my endometriosis. Two days later I had a scan to confirm this; I had free-flowing liquid around my right ovary. Endometriosis tissue that had grown back, shed and nowhere to go.

I was discharged from hospital rather abruptly and give no medication or plan. I went home, still in pain (but less so than I was) and completely exhausted. Lucky me had also caught a nasty cold in hospital, so my poor body was just completely shot to pieces.

Now the trouble is when you have free-flowing blood, it has to come out somewhere. And it did. A lot of it ended up coming out – to the point where it made me anaemic. Another trip to the hospital happened three weeks later with the same problem, but this time I made sure they weren’t going to send me home without an explanation.

I had to fight to be heard on my second visit to hospital and it was exhausting. Luckily a female doctor took pity on me (no male doctor did, isn’t that strange?!) and she agreed that I couldn’t end up in hospital every single time I had a period. They performed another ultrasound, gave me some drugs to stop the bleeding and a pretty heavy mixture of different pain medications and told me when and how often to take them. They also recommended that I carry on taking the pill, to prevent a period, but also the Mirena coil which in time will also stop my periods. I had to have another hospital appointment to have the Mirena coil put in, but that was only a quick 10 minute procedure.

Since having a plan, I haven’t been in hopsital again. I do have daily pain, some days worse than others so I am reliant on painkillers a lot. I also get flare ups that are so bad I can’t leave the house. These are a lot rarer but debilitating when they do happen.

All and all, I am able to live a normal life. I do have pain most days, most of which can be managed with appropriate medication but most of the time it doesn’t stop me from going to work, exercising, going for long walks or pottering about. I just have my limits. I can’t do as much as I would like to do and sometimes my mind hasn’t quite caught up to my bodies limitations. But I am getting there.

Now At this moment in time, I’m getting flare-ups more regularly and my bladder problems have come back, which can only mean that the endometriosis has grown and is affecting other parts of my body. I am currently waiting to hear back from the gynaecologist where we will come up with a plan, whether that be more surgery or another treatment other than the Mirena coil to prevent it growing.

Unfortunately, there is no magic wand, nor a quick fix but having more awareness around the disease can mean many women who are suffering won’t have to fight as hard, be silenced or dismissed.

It’s been a long slog, but I’m getting there. I’m getting there.