Introduction
I actually wrote this three years ago. I'm not sure about you, but when I'm down or stressed I write everything down... no one is EVER meant to see it, but I feel tonnes better for doing it. You'll also notice it was actually written as a blog post and I did get close to posting it, but then I thought...why am I actually doing that? Who cares? And also it's a bit too personal...
The reason I'm now sharing this is because I've been giving some advice to a friends sister lately about the same topic, it made me search for what I had written three years before, and it made me realise that it might be helpful for other people to read, especially women. If it helps anyone, then I've done my bit!
The post
Before you read on, I have to warn you that this isn’t one of my normal types of blog posts. In fact, this one might make some of you want to vom, but I wanted to share it with you anyway because I’m nice like that. I wanted to give you an honest insight into something I’ve been struggling with for a long time now…
I'm here to talk about my uterus. Yes, that's right.
For thirteen years I have lived without the education and truth I needed about my uterus (I know this sounds weird, but bear with me). I wanted to share my story to encourage people, not just women, to keep pushing for what's right. When you know something isn't the way it should be, don't ignore it, especially when it comes to your health. I hear more and more stories of people getting diagnosed with things too late because their doctor didn’t take the symptoms seriously and this needs to stop.
I think that’s enough of an introduction so please enjoy the below rants and period stories…
I remember when I got my first period at 14; it was a rather big celebration as I was the last one out of my friendship group to get it. I remember walking around Safeway (remember Safeway?!?) with my Dad with a skip in my step thinking, I'M FINALLY A WOMAN - he was completely oblivious to this because of course I was far too embarrassed to tell him that I just ‘came on’…
After the initial excitement it soon dawned on me that ‘being a woman’ was actually horrible, well for me it was anyway. However, I didn’t realise that what I was experiencing wasn’t the norm; I thought that all women suffered like I did.
I remember the countless times I would come home from school and underneath my trousers were blood-covered legs - I stupidly thought this happened to everyone. I thought I was being dramatic when I never wore a skirt or took part in P.E during my period, but I just couldn't because there would be blood EVERYWHERE if I did. To give you an idea of how extreme this was, and I’m sorry for any men reading this, I'd have to change a super plus tampon and a night pad (worn together) every half an hour. For every guy out there...a super plus tampon should be worn up to 7 hours, and a night pad...well...all night. However for me, after half an hour I’d risk blood coming through and onto the seat I was sitting on, which actually happened to me more times than I can remember. Not exactly what you want when you’re leaving your science lesson…
Being in hour long lessons meant I couldn't change every half an hour, so under my trousers would be lots and lots of blood. As a teenager you can imagine how disgusting and paranoid I was.
I finally told my mum about it when I was 15, so we went to the doctors and I was put on the pill to try and calm this horrible ‘being a woman’ thing down. However, the pill made it worse. My period had gone from lasting one week to lasting up to four months.
I went to the doctors again, but this time on my own because I thought I was a big, brave girl. He changed the pill to another type, which was hopefully going to help. However, when I was in his office I started crying, he then asked me how often I cried, which I replied “a lot” but that I wasn't really sure why I did cry as I had nothing to cry about. Looking back, it was quite obvious why I was crying, but aged 15/16 you don’t know that losing that much blood continuously would cause you to become seriously anaemic. However, for some reason the doctor didn’t seem to think this either so he offered me antidepressants and made me go to see a psychiatrist. He also phoned the school to tell them I needed extra support, so the school phoned my mum to tell her I was depressed, which we both knew I wasn’t. They were then worried we were both lying so they phoned quite often.
This was all quite annoying and traumatising to be quite honest. The psychiatrist pretty much laughed in my face when I first saw her as she knew I wasn’t the slightest bit depressed and it was all just a massive waste of time. The reality was that I was just perioding everywhere.
(I will note here that I think it's brilliant the doctor and school took action on mental health in this way. It was just frustrating because I genuinely did not have any mental health problems at the time).
My periods still didn’t get any better and it wasn't until two years later when I first arrived at university that my severe anaemia came to light. For a start, I used to sleep constantly, but of course people just thought I was a lazy teenager who was always hung-over...which I was of course…but it was a lot worse than that, my feet had swelled up so much I went to my lectures wearing just socks – no shoes. I look back at this now and cannot believe I carried on with life; my symptoms just became who I was. I WENT TO UNI WITH NO SHOES ON AND THOUGHT THAT WAS OK?? But, when a doctor doesn’t seem bothered you just believe that things must be OK. Unfortunately, it had to become more serious in order for me to realise something so simple.
One night I went up to my housemate’s bedroom (my room was on the ground floor, his was the first floor), he was smoking weed as he always did. I sat in his room for only a few minutes chatting when the fumes really hit me. I left to go down to my bedroom as I didn't feel right, but I passed out at the top of the stairs and fell all of the way down. I don’t remember any of this, but I remember waking up at the bottom of stairs, I was hallucinating; weirdly I could see lots of cockroaches which was both terrifying and DISGUSTING. I thought I was dying. I decided dying in bed was the best thing to do so I crawled myself into bed and passed out.
To my surprise I woke up! My housemate drove me to the doctors the next day and I had an emergency blood test, which revealed I had half the amount of red blood cells I should have had in my body. All this time I could have just taken some iron tablets, but it took me falling down the stairs unconscious to find out something so simple. So I had to take tablets that people have after a big operation to help restore the blood loss, it made my poo SO BLACK.
My anaemia improved due to the tablets, but my periods on the other hand got worse. The cream sofa in my lounge was continuously washed with a damp cloth; my two girl housemates soon became very close friends. The amount of times they had to dive on a bloodstain to hide it from the guys in the house when I'd got up and not seen it. I cannot tell you how much it affected my life and my confidence. I was now wearing nappy style pads for four months at a time during freshers year of uni.
I went back to the doctors and begged them to help control my periods. I was constantly weak and I started to get blood clots the size of potatoes. I KNOW THAT THIS IS VILE. I remember the first time it happened I called my friend crying because I thought I'd had a miscarriage. The doctors didn’t seem too bothered so blood clots also became ‘normal’, I just lived with them.
Let me just remind you here...they were the size of potatoes.
Every time I went to the doctors they did the usual and tested me for an STI. I've honestly had more STI tests than the whole of Geordie Shore. Nothing was of course found so they would just change my pill again.
When I was 19 I'd been on five different pills, things were getting worse and I was getting seriously down so I pushed for help again. My pill was changed again and the doctor just casually exclaimed "to be honest, you'll probably find it extremely hard to have children when you’re older". However, there was no explanation to why so at 19 I naively just left the surgery and I believed I was never going to have kids.
When I moved to London two years later at 21 I told the doctor my history and she suggested I get the coil, so I did. Things improved dramatically. Yet, there was no explanation to why I should have the coil and I just went along with it. Looking back, this is so frustrating because the doctors knew what my symptoms were suggesting, but never bothered to explain and I stupidly never thought to ask anything because I thought they’d tell me if there’s something I should know.
Although things had improved with my periods I started to suffer with a lot of pain, sometimes so bad I’d spend hours curled up in a ball crying on my bed. This was around the time I met my boyfriend and when we started getting serious I started to worry more about my future. I remember when we went to Edinburgh for the weekend and we were staying with his family. One night we got to our room and I just burst out crying because I knew he 'was the one' and I knew I had to tell him that I might not be able to have kids. I was so scared he's run a mile, but I knew I had to be honest, so I told him. He was so supportive and understanding, but at the same time I was 25 and he was 23...did he even care about kids then? Would it be a problem in the future? I still didn't really know.
Even though I know nothing for sure, it’s hard to explain, but you feel a bit of a failure of a woman knowing that your organs to help you have children are not in good order. At this point I didn't even have answers to why, I had just been told by a doctor that it would be very difficult, so I was very confused.
When I was 26 the pain got a lot worse. I went to the doctors and they gave me a tablet for thrush and said it’s probably also constipation. Every time I got the pain I would therefore buy thrush tablets thinking that I just kept getting thrush. The pain got worse and worse and I couldn’t have sex with my boyfriend anymore. I would try and ignore it because I didn’t want to ruin the moment, but I’d end up just bursting into tears because the paid was too much, which wasn't ideal to say the least... This is when it really started to affect my mental health. Not only was I scared I couldn’t have kids, I now couldn’t have sex at all. Why would anyone want to be with me?
Even though I was suffering in pain I’d given up trying to get any answers, as I’d always feel the doctors didn’t take me seriously. However, my manager at the time encouraged me to go and push for help again, so I did. Yet as usual the doctor asked me to do an STI test and a pregnancy test, supplied me with a thrush tablet and that was it.
Of course once again the STI test was clear and so was the pregnancy test. My manager pushed me to go back, but I’d given up. However, she wouldn’t let me give me up, so I did go back and this time I burst out crying in front of the doctor and he finally understood that for 12 years I’d been given no answers, I was scared and I was becoming depressed. That week I had a pelvic scan, which revealed I had Polycystic Ovaries. He then referred me to a Gynaecologist for further tests.
My first appointment was great; I was seen by a wonderful lady who booked me in for every test possible. I finally felt I was going to get to the bottom of all of this pain. However, when I went back to get my results and to be internally examined I had a different Gynaecologist who did not give me the same respect. He told me the blood tests had been lost, he said my scan was clear and so I didn’t have Polycystic Ovaries after all, he told me there was no point in having an internal examination and in fact all I needed to do was lose weight as I was, in his words “pretty obese”. I was a UK size 12. He encouraged me to exercise more and even waved at me as I left his office and said “see you at the swimming pool”. It was like a joke to him.
I walked out of the hospital at 3pm and I stopped crying at 11.30pm. It wasn’t just normal tears, I was a hysterical mess. All of those years of not knowing what was wrong with me, I thought that day I’d finally get an answer and I ended up walking out feeling ashamed of myself and feeling fat and ugly. I stayed inside all of that weekend and cancelled every plan, I didn’t want to see anyone and I felt ashamed of how fat I was. I didn't even talk to my boyfriend. I remember feeling embarrassed that people were even friends with me and I couldn’t work out why my boyfriend would like me.
I went to work on Monday and immediately burst out crying as soon as I got to my desk, my colleagues urged me to send an email of complaint to the hospital, so I did. If I hadn’t have done this, I honestly don't think I'd still have an answer to this day. I was so lucky I had amazing people around me that encouraged me to keep trying and supported me when I was at a very low point.
Although the complaint didn’t really get me anywhere - the gynaecologist was given a warning and it’s on his records, but because no one had complained about him before they couldn’t do anything else. However, what it did mean is that I had another appointment with a more senior gynaecologist who was LOVELY. She found my blood test results straight away (funny that), she explained that my scan reconfirmed I DID have Polycystic Ovary Syndrome and when she examined my stomach area she could feel something wasn’t quite right around my uterus.
It was suggested I had a Laparoscopy and a Hysteroscopy – keyhole surgery with a camera going into my stomach and into my uterus to find out what’s going on. I jumped at the chance because I just wanted answers.
At 27, after twelve years of living with awful pain, horrendous periods, blood clots, anaemia, bad skin, low confidence and being told I couldn’t have kids, I was finally going to find out what was wrong.
Last Tuesday I had my operation. I won’t go into detail about the operation itself, but topline – I had to stay overnight because I couldn’t wee, so awkward. I was also violently sick three times in the paper bowl thing that my boyfriend was holding so had to deal with that...and he had to help check when I went to the toilet that it was wee coming out and not just blood. He saw everything...
In the operation the surgeon found that not only do I have pretty endometriosis, but I also had a lot of scar tissue in my uterus. They’re not sure what caused the scar tissue, but they presume I had an infection for a long time. They don’t what it was, but it would explain why I kept being given thrust tablets! It wasn’t an STI before you think it either...I had enough of those tests!
The endometriosis and scar tissue were lasered off during the operation, however the results of the scar tissue unfortunately mean that I’m now at a high risk of an ectopic pregnancy. If I was to get pregnant I would need to have a scan within three weeks to check it’s not ectopic.
It’s actually really crap news because I have three things diagnosed that can cause infertility.
I probably should be more down about it than I am, but to be honest I’m just happy I know what’s wrong with me. Although, I do worry about the stress it may cause my relationship if I don’t become pregnant in the future. However, if my operation taught me anything, it’s that my boyfriend definitely loves me a lot.
I know this was a long post and I’m sorry it wasn’t my usual humour, but I just wanted to share my story and hopefully encourage everyone to never give up. If it wasn’t for other people’s support and encouragement I probably would have never had an answer, I would have carried on living in an unknown pain for years, which could have had worse consequences, like getting an ovary removed or even a hysterectomy. Unfortunately a lot of women with endometriosis get to this stage before they're diagnosed. It takes an average of seven years to get diagnosed in the UK and it's just not good enough, especially as 1 in 10 women have it!
I really hope this post encouraged people to get checked out if they suffer with any of the same symptoms. Knowing the truth about your body is so important. If you think something is not right, don’t stop until you get an answer.
Also, I didn't have all the symptoms that NHS have on their site, but even if you have one or two it could mean you have PCOS or endometriosis. Doctors have said to me "oh you don't have PCOS your skin is fine and you're not hairy". THAT DOESN'T MEAN I DON'T HAVE PCOS, AND I DO!!
Three years after that operation:
My pains have improved dramatically, I do still get endometriosis pains now and again, and to be honest I do still get a bit nervous having sex, but most of the time I’m OK. I really urge anyone with endometriosis to have the operation because it has genuinely changed my life.
The mirena coil has been amazing too and I hardly even have periods anymore. I feel normal and I haven't leaked down my leg for 9 years!
I do still worry about whether I can have kids, but you just don’t know until you try. At the moment I’m not trying so there’s no point really thinking about it until I do.
I don’t really talk to anyone about what I went through or how I feel about it, but I am open with people that I have PCOS and endometriosis. It’s funny the reactions are always the same ‘oh my friend has that and they have kids’, or ‘I have PCOS and have kids’, which is great and very encouraging…but I can’t help but think they’re throw away comments, like ‘oh having that is no big deal’. It is a big deal, I really really struggled with my symptoms, I’ve felt SO LOW, and I do feel scared for the future.
Oh and I’m marrying my boyfriend in August.
Here's some links that might be helpful to anyone with symptoms:
https://www.endometriosis-uk.org/information
https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/
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