Endometriosis and me

Hello all.

I haven’t written a blog post in a while and now, after weeks of recovering and working, I have the time to write about my recent Endometriosis diagnosis. Many people will not know what Endometriosis is. It sounds like the name of a plant cell, doesn’t it. When I was told what it was that had been causing me problems for just under a decade, I was confused (and not just because I had just come around from anaesthetic). Not only had I never heard of it, but it sounded very much like something that could kill me. I’m slightly over-dramatic, you see. As it turns out, Endometriosis was not something that would kill me. But it was what had caused me gynaecological and sometimes personal problems since I was just 16 years old.

If you are easily grossed out, or you shy away from talk about ‘women’s problems’ then you probably don’t want to read this post. I’m going to talk about what Endometriosis is and what it can do to affect you and your body: it is NOT pleasant, but hopefully it will raise a small bit of awareness.

Illustration of yellow ribbon for Endometriosis
Illustration of yellow ribbon for Endometriosis

My Story.
I have suffered problems with my periods since I was 16 – at the age of 25, I have had less than 15 periods. My Doctors could not tell me why, nor did they seem concerned by my symptoms. This was unnerving and upsetting – it’s their job to help and care for scared and poorly patients, right?
At the age of 21, I suffered a miscarriage. I was unaware that I was pregnant, but it was still heart-breaking. My main worry about lack of periods was that I would never have a baby, so suffering the miscarriage made me think that I was okay and just underweight. I left it and did not go to the doctor’s any more.  Over the next few months, the bleeding became significantly heavier and the pain became so unbearable that I had to have time off work due to being physically unable to get out of bed. It took me collapsing for anything to take off with doctor’s. I was referred by my GP to the Gynaecology ward at St James’s Hospital in Leeds, Yorkshire in September 2014. In December of the same year, I had many ultrasounds and was at first diagnosed with Polycystic Ovary Syndrome. I decided to take the doctor’s word for it and accepted a 12 week wait for a follow up appointment at the hospital. By the time the 12 weeks were up, I had gotten worse and another ultrasound had shown that it was not PCOS after all, but they were unsure as to what it was. I was put on some more tablets and told to come back in 6 months. It was not until November that I had my next appointment and here, I saw a new Doctor. He told me that he was concerned with my lack of periods as well as the pain that I was experiencing and asked me what I thought about having a laparoscopy. He told me what it was and I immediately said yes!! I just wanted the endless A&E trips and countless days off work to end – I wanted to be like every other woman.
So, over the next few weeks I had my pre-assessment blood tests done and just had to await a date for my operation. On March 2nd, I rang the hospital as no appointment date had been given to me. There and then she gave me a date of Monday March 7th 2016 at 11am but I needed another set of blood tests taking, so I went through it all again and that was that.
On Monday March 7th my boyfriend took me to the David Beevers Unit at St James’s Hospital at 11am and I naively thought that I would be in and out within three hours. Instead, it was 4.30pm before my operation and I did not go home that day.
As I came round, I felt extremely groggy, confused and the pain was unbearable. I felt as though my body was not my own. I ate and drank, which you are required to do when you come around from your procedure but I just could not wee. The agony when I tried was too much and so I had to stay overnight. My boyfriend came to see me, bringing me a ham sandwich (the best ham sandwich in the world, I was starving!!) Although I knew I wouldn’t feel on top of the world when I came round, nothing prepared me for the truth. The pain was the first thing that I noticed. The second being that no amount of water would mask the pain in my throat and chest: I mean, I’d had a tube down my throat for around an hour.
When I finally managed to have a wee, the agony was so bad I became hot and dizzy, eventually having to stop and go back to bed. This cause excruciating pain in my stomach. All I could do was cry and wish I had never had the operation – I just could not see any way of getting better.
The next day, my dad picked me up from the hospital and I stayed with him and his partner. I slept all day and drank lots but I could barely eat. Whilst asleep, I had rolled onto my stomach and made one of my ‘wounds’ bleed. I was petrified as well as in pain. I eventually ended up back at the hospital because I had no bandaging and did not know what to do. They re-dressed my stitching and sent me home with painkillers, giving me a good night’s sleep.
For the next two weeks, I was poorly. I developed a bladder and kidney infection as well as a chest infection. I then got tonsillitis over Easter, so I had the equivalent of 2 weeks off work – how I still have a job I do not know. But work were supportive and eventually, after stitches coming out at 3 am and trips to the hospital because they were bleeding, I was better and could finally wear something other than pyjamas, joggers and high-waist leggings.
The incisions are now little scars that you can only see when you look in the mirror. They even look like little smiley faces! 🙂


What is Endometriosis?
Apart from being utterly shit and causing horrendous pain and problems, it is not life threatening. Endometriosis occurs when part of the lining of the womb – or endometrium – appears outside of your womb as opposed to being attached to your womb. Usually, these pieces of tissue can be found in other parts of your body such as your bowel, bladder or fallopian tubes. It can cause pain in your pelvic area and abdomen during the times outside of your period, which will get worse during your period.

“Who ‘gets’ it?”
Endometriosis affects around 2 million women in the United Kingdom, with most women being diagnosed between the ages of 24 and 40. However, if you have gone through the menopause, you are highly unlikely to be diagnosed with the condition.

What are the symptoms of Endometriosis?
There are a great number of symptoms associated with this condition, the most common of which are:
Pain during and after sex
Heavy and excruciating periods
Exhaustion
Frequent diarrhoea and pain when urinating
Severe pelvic pain.

487xNxsymptoms_info2.jpg.pagespeed.ic.P1QQDj9s6y
Chart of Endometriosis symptoms.

All of these symptoms are just a select few: there are many more. Of course, one person many not experience all these symptoms. Some symptoms are so rare that they are not on the list, such as weight gain. For me, the scariest symptom of all was the lowered chance of me having a baby in the future. It is a symptom, but it does not remove all chances of your conceiving – it just reduces them. One other thing that I have learned is that the amount of tissue found does not determine the pain you experience. One small piece of tissue could be agonising if found in areas such as the lung or ovaries.

“Retrograde Menstruation”
Relatively unheard of, it is this that is considered to be the main cause for Endometriosis, although the exact cause is currently unknown. This kind of mensuration sees some lining of the womb not leave the body properly during a period, causing it to attach itself to organs within the pelvis. However, this theory contradicts itself due to the number (albeit small) of women who suffer from Endometriosis despite having had a hysterectomy. Therefore, there is ultimately no cause for Endometriosis. However, there are small possibilities of the condition being caused by Environmental issues, genetic and immune problems and even ethnicity is said to play a part in the cause. I, however, have no opinion on what causes Endometriosis – they all contradict themselves and leave major loopholes.

How is Endometriosis diagnosed?
The condition is diagnosed through a laparoscopy, also known as keyhole surgery. Small incisions are made into your abdomen whilst you are under a general anaesthetic and a small camera is inserted by the surgeon. Here, they fill your stomach with gas and look at all your lower organs, with particular attention on your womb, pelvis and pelvic organs such as ovaries and fallopian tubes. If a diagnosis of Endometriosis is made, they will remove any pieces of tissue there and then. They will then allow you to come round from your operation and discuss your options and recovery.

Can Endometriosis be cured?
To cut a long story short, Endometriosis CANNOT be cured. It can be managed, but never cured. Hormone treatments such as the contraceptive pill can be used to balance out your hormones and – depending on the pill you choose – they will stop the periods, thus relieving you of pain or you can regulate your periods and give your body experience of natural menstruation and hopefully remove symptoms of the condition.

The reason I have posted this is because I want to raise awareness for the condition nobody appears to know about. When someone tells you that you’re overreacting when you’re in pain, it hurts. The pain is not something to be taken lightly and the long-term effects can be devastating. It is not as serious as cancer, but why should it be ignored and brushed under the carpet?

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Ladies, if you have ANY of these symptoms go and see your GP and tell him you want them to refer you to a gynaecologist. If your GP doesn’t listen, book another appointment with a different doctor until you get referred. It takes a while but it can be done. DO NOT take your symptoms lightly, because no matter what people say, it isn’t ‘just a stomach ache.”

If you have got this far, thank you for reading. It’s a big deal to put this on here, so thank you!! 🙂

Love Lizzy

xx

The reason I have posted this is because I want to raise awareness for the condition nobody appears to know about. When someone tells you that you’re overreacting when you’re in pain, it hurts. The pain is not something to be taken lightly and the long-term effects can be devastating. It is not as serious as cancer, but why should it be ignored and brushed under the carpet?

Ladies, if you have ANY of these symptoms go and see your GP and tell them you want them to refer you to a gynaecologist. If your GP doesn’t listen then book another appointment with a different doctor until you get referred. It takes a while but it can be done. DO NOT take your symptoms lightly.

If you have got this far, thank you for reading. It’s a big deal to put this on here, so thank you!! 🙂

There is a contact form for any queries that you may have!!

Love, Lizzy

xx

It is not taboo.

This post is extremely personal and something I’m doing for someone very important to me. I will not be naming names but they know who they are anyway: I just feel that this is a subject in need of discussing.


For reasons that no sane person can comprehend, the term ‘depression’ is seen as a taboo subject. Why? Nobody knows, but people just don’t like to talk about it. Whether it’s because they have been through it and are embarrassed, they have witnessed it happening to a loved one and they feel uncomfortable or sad talking about it or they simply just do not understand, people cannot bare to bring it up.  In my opinion it is time this changed and people became more aware of it.



What is it?

Nobody knows what depression is and I do not think anybody ever will know for sure what it is that affects around 5 out of 100 adults each year. We all have shit days where we are down in the dumps and just want a cuddle but for someone who is depressed it is far worse. I have never suffered from any form of depression but what I have seen of it and how it has affected that person’s life gives me a small idea of how drastically effecting it is upon the sufferer. For a person with depression, everything that seems like nothing to another person will feel like the end of the world to them. Whether it is a change of plan, the tea burning or not getting the payslip you originally thought you would, one second everything can be fine and the next, that person is on the floor crying and confused.

Seeing this first hand is horrific but not something the person suffering should ever feel embarrassed about. I am not a person who deals well with unknown situations and when one of these ‘attacks’ hits my friend, I have no fucking idea what to do. It’s so scary and so upsetting so imagine how the person suffering feels? I can imagine that it is 100000000% worse and then some. 

Why do people not like to talk about it?

This is something I will never understand and something I feel is extremely ignorant and old-fashioned. It is as though people do not trust the term and so look at it as a ‘taboo’ subject. When people say the word ‘depressed’ have you noticed the reaction of people around them? Some roll their eyes, some change the subject and some just cannot believe the word has been uttered so bluntly. It is not as if it is Harry Potter and someone mentioned ‘Voldemort’. It is a serious situation because when someone says they’re depressed, how do you know that they aren’t? How do you know that they aren’t trying to reach out to you and are asking for your help? You don’t know that and unless you try to understand, you never will. At least that’s what I thought but after a conversation with another friend, the only person who should understand is the sufferer: but even they don’t grasp why they react and act the way that they do when confronted with certain situations. Why can’t people be open about such things? Maybe it is because they just don’t understand what the hell is going on. 


As I have said I have never been affected personally other than by a close friend suffering with it. Her family are affected in ways I never realised could happen and it is devastating to see. But when my friend has someone who is there for her 24/7 and who keeps her up even when he feels like shit himself, it makes it that tiny little bit easier for her and that is something amazing. It is just proof that if things like this are spoke about more often, more can be done and people can go through it without feeling completely alone and overwhelmed.

I’ve been that shit friend where I’ve cancelled last minute and sometimes I feel as though I am walking on egg shells and I feel isolated and why? Because I have been ignorant and haven’t tried to understand what my friend is going though. It took me cancelling plans to realise just how shit it is for her and how if she doesn’t understand, nobody else will. But even though I feel like this, it doesn’t make her any less my friend and why would it? It just means that she’s a lot more emotional.

Things like this should not be kept quiet: if you are depressed or feel someone is then speak out. It will make things worse if you keep it to yourself. 

The more people talk about it and the less people feel it is a taboo subject, the better chance there is of beating the most common ‘mental health problem’.

It took a lot to write this and I just hope that people do not get offended or upset: that is so not my intention. I just feel that such an important and life-changing subject should be discussed more. People talk so much about nights out, sex and EastEnders so why not talk about depression as much? Why not make more people aware of what affects many people around you?

Your comments would be so appreciated, as always.

Lizzie

Xxx