Endometriosis and Me: 2

Hello again.

So for a long time now, I have been suffering from a chronic condition called Endometriosis. However, I was not diagnosed officially until March 2016. It took lots of begging before anything would be done, and finally there was an answer. But in the 1 year and 9 months that has passed since my diagnosis via laparoscopic surgery, my symptoms had not got better. The hospital I was referred to was appalling, making nothing better or easier. So, I asked to be referred to a different hospital, where the doctors seemed much better. Again, after a couple of appointments, it was agreed that I would have another laparoscopy. I was nervous and absolutely bloody petrified, but I felt that this time, I would have an answer.

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So on 04.12.2017, I had my second operation in just under two years. This was to ‘treat’ my severe Endometriosis. I saw the anesthetist and the Doctor who would be performing the operation, who went though my consent form and the possible side effects that could occur during and after the procedure. I asked if she would check my Fallopian tubes, as infertility was something that had worried me. Well, that and the poor information I had received from the first hospital I had been referred to. I then spent four lonely hours in a waiting room, downright scared.

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Then they came to take me to theatre, where I was given the anaesthetic and knew no more. Around two hours later, I came around from anaesthetic and I am not gonna lie, I felt like utter shite. My head hurt, my tummy was agony and I could have brought up my whole body weight in vomit. I didn’t know what was going on, I had this hideous blood pressure band thing going off every 15 minutes and I was laying on my cannula tube, too scared to move in case I ripped it out. After what seemed like an hour in recovery – I think it was that long, but as groggy as I was, it could have been fifteen minutes or 2 hours – I was wheeled around to another ward (and just in time, cos the man across from me overreacting to a colonoscopy was making me fuming.) I was given toast and what I would like to call holy water, because thank God I was given it: it made me physically sick. I no longer felt groggy and spaced out; I felt slightly better and able to walk to the bathroom, have a wee and change into clean clothing that weren’t bloodstained and knickers that weren’t made from the same material as hair nets. I then felt like eating, managing a slice of toast and jam. I had not eaten for 12 hours and as anyone who has ever been poorly will know, eating makes you feel slightly more human and less lethargic.


A little while later, the doctor who had performed the operation came to see me. Although I was fully dressed, she pulled the curtains around my bed and my heart sank. I had a feeling that there was something bad about to be said; like she was going to give me bad news. She sat on my bed and told me that they had lasered away the active Endometriosis, inserted the Mirena coil that would hopefully make my bad periods and chronic pain manageable and easier to live with and that they had done what I had requested and had a look at my Fallopian tubes. I knew that there would be an issue with my ovaries and general fertility, because Endometriosis does that to those with a severe form of the condition, and in the past I had suffered from Polycystic Ovary Syndrome, which can also affect fertility. The Doctor then told me that one of my Fallopian tubes was damaged, the ovary connected not carrying enough eggs to have children in the future. The other tube and ovary was already damaged, so I now knew what it was causing many issues that I was suffering from, alongside my Endometriosis symptoms. I nodded and accepted this information, finally glad to know what was wrong and what could be done. The doctor was happy with what had been done and said that being discharged and allowing the Mirena coil chance to work was the best option now, with regular check ups in the future. I was far too tired and groggy to properly understand what was going on and so just nodded and continued eating my now-cold toast. The nurse then rang my partner and he came to pick me up from Gate 40.

After being picked up by my lovely (and very patient) boyfriend, I went home with codeine and a stroppy attitude. We got back to his house and we ordered a Chinese but I just could not eat the food. So I just  had an early night and went to sleep, hoping that I would feel miles better the next day.


On Tuesday, 05.12.2017, I felt even worse. My tummy was utter agony, I had to force myself to have a wee and my throat feels like I’ve swallowed glass, making coughing painful and causing a build up of mucus on my chest. My temperature was very high, i was exhausted and completely fed up and bored. I tried to get university work done, but I just could not get myself motivated and it hurts to even think. However, I managed to keep some food down and had chilli for tea; it was literally the best meal I had ever had, I was that hungry. I could also finally have a shower, which made me feel loads better and less-scruffy. A better nights sleep helped massively, too.

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Today was better, with much less pain and I don’t need painkillers as much anymore. However, my throat is worse and I am pretty sure I am getting a chest infection. I am also going completely out of my mind with boredom. University work is completed and I have watched Only Fools and Horse over and over again, going barmy trying to find something different worth watching. I also just want to be cuddled properly but it hurts if I get squeezed. But, compared to my last operation, I feel loads better and I can wear normal clothes, not just pyjamas and joggers; fingers crossed it stays that way.

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I will never understand why this condition is one that is not well-known. It affects millions of women, is a chronic condition and can heighten your risk of ovarian cancer: the latter being the worst gynecological cancer with the most dire prognosis.

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So guys, the whole point to this post is to make more people aware of what Endometriosis does to you. It makes you need hideous laser treatment called diathermy. It makes you hurt all over and makes you want to vomit whenever you eat. It makes you cry and it makes you stroppy. It makes you not want food and it makes you sleepy. This condition is something Doctors don’t like to tell you about, because they have to go to such lengths to diagnose it.

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So ladies, push and fib and beg for a diagnosis, even though it’s hell! Because once you know what it is causing agonising pain, painful urination and bowel movements, heavier and less-frequent periods, infertility and a large number of other symptoms, you can work out how to manage it all and make your life easier and more bearable. Because speaking from experience, anything that makes it bearable is worth trying.

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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.

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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

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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

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