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The Endo Trojan- Getting the Diagnosis of Endometriosis

*trigger warning about health issues.

This blog is not really about flowers, but it is about how I have got to this point and flowers are now a big part of my life and my work. However, this blog is mainly about my journey getting diagnosed with Endometriosis. I hope that this blog helps someone who is as lost as I sometimes feel with this condition. I feel that it's important to reach out, share and connect with other's going through something similar, and if I can help at least one person then I will know that this blog was worth me writing it.

In regards to symptoms etc, it's difficult to know where to start. There have been so many clues along the way that something wasn't right. I have read that on average it takes women approximately 8 years to get a diagnosis, but I find it difficult to know where the start of my Endometriosis journey began from, I will explain...

I started my periods at 13, not particularly young, in fact probably pretty average. I would always get pain for the first 2 days of my period- cramps that sometimes left me in bed. However, once I began to start taking the pill at 16, the cramps reduced greatly and any cramps I did get I managed to take paracetamol and this would mostly resolve any pain. Therefore, I managed to get on with things and didn't feel that my periods were particularly bad, besides what did I have to compare it to, and women were supposed to have cramps with periods, right, so I never thought anything of this.

Roll on time and by adolescence and early adulthood and I was often diagnosed with anaemia. The level of fatigue was so bad at times (and still is) that I was often speaking to GPs about this. I was able to easily sleep 15 hours a day and still feel tired, but not like just sleep tired my body would throb and feel exhausted (like I'd been carrying heavy bags around me the day before and I was now experiencing the after impact). In my mid 30's I was diagnosed with ME or Chronic Fatigue Syndrome as they now like to call it.

I also would get a lot of bloating. I was tested for Gluten intolerance but this came back clear.

I was also referred to neurology a few times due to nerve pain. Because I had Optic Neuritis when I was 5 and 8 there was always some under current that there may be a development of MS. Therefore I have had a number of MRI's and referrals. I was not given a diagnosis of MS and I felt that professionals thought I was making up symptoms, so I went away again with no answers.

In my 20s and 30's I would have numerous issues with UTI's, with a few of the infections getting into my kidneys. In my 30's I was made aware that there was microscopic blood in my urine, but most GP's did not see this as an issue and it went by as normal. It wasn't until I saw one Doctor at a walk in centre where I suspected I had another UTI, where he told me that I had blood in my wee. "oh yea I know." I said dismissively. "I've had it there for years." He turned and faced me and told me that it's not normal to keep having blood in my wee. He wrote to my GP and a cystoscopy (a camera in the bladder), was booked. However nothing was found and a few months later when I fell pregnant I was then discharged by urology.

I did not have a straightforward labour with my little boy and it makes sense to me now that Endometriosis made the delivery much harder.

So after I had my little boy was when things got bad. Shortly after I had my little boy I was convinced I had a UTI, I was put on antibiotics and had a further 3 episodes from when I was 33-35 years. After having my little boy I returned to the strong contraceptive pill that I was on, however when we moved house my new GP surgery would not put me on the same contraceptive pill, saying the hormones were too strong (I had been on the same brand for many years).

3 months later in May 2022 I started to get a really horrible stabbing pain in my pelvis. At first I thought I was pregnant again, as the pain was very similar, but after getting an all clear pregnancy test I assumed it was another UTI. So I went to the Dr's and they found I have 135 white blood cells in my urine. I was given antibiotics for a UTI, however the pain never went away. I remember being so excited about Eurovision and having my mum and step dad round but watching it lying on the floor in pain, trying to put a semi-brave face on things. My urine was sent off to the lab, but they could never find a bacteria, but I was put on further antibiotics. I was screened and was told by a nurse and a Dr that my cervix was red and looked really irritated. I was given 3 separate STI tests during this time, even though I knew that they would come back negative. A female GP almost tried to plant the seed that maybe my husband was cheating on me- I knew this wasn't true. I was sent to the sexual health clinic and a lovely Dr there told me that he believed I had kidney stones. At this point I was on my 5th round of antibiotics and at this point something definitely did not feel right. I was struggling to pass urine, I couldn't eat, my tummy was swollen and I couldn't pass gas. Thankfully I went to the Dr's and the Dr sent me down to the hospital. I was in the hospital for 10 days. During this time I had more antibiotics, an ultrasound and an MRI as well as physical checks to see what the issue was. I wasn't able to pass a stool and eventually after all the laxative drinks failed I was given a suppository and on my 9th day in hospital they found I had C.Diff- a really nasty gut infection that I had got due to the antibiotics killing my good gut bacteria. After being sent to my own hospital room after being told I was highly infectious and probably shouldn't have any visitors, the next day the hospital sent me home to be with my husband and 2 year old! I know, I have some not very nice stories about my time in hospital, but that is maybe for another blog.

After being sent home I was on more antibiotics to kill the C.Diff, but the stabbing pain in my pelvis and now my gut would not go away, during this time I couldn't really eat and I lost 3 stone over about 2-3 months. In fact my diet was crackers, I started with 1 and managed to eventually build up again.

This post is about Endometriosis but I wanted to show that the diagnosis journey has not been easy and there have been some curve balls along the way. After hospital I saw the same female GP who thought my husband must have been cheating on me. She told me I was just very anxious and needed to breathe more slowly and follow the breathing guy on Youtube. I was given information about psychosomatic pain and that there must be a psychological component to the pain as all my tests were clear. At this point I truly thought I was 'crazy'. I started to experience panic attacks and my anxiety levels increased. The pain was there in my pelvis, the same stabbing pain from the beginning. Urinating was still painful and I was experiencing voiding as well as frequency. The fatigue was unreal and I knew that something wasn't right, but I felt no-one believed me. To say at this point my mental health was effected is an understatement - the medical gaslighting, the general feeling of not being believed and the constant stabbing pain made me question my existence at times.

I asked for my medical notes from when I was in hospital and my friend who is a GP looked at them for me and said the MRI showed fluid in the pelvis and a cyst on an ovary. The person who read the MRI dismissed the cyst as a normal corpus luteum cyst. I was sent for an Ultrasound a few months later but they were not worried by anything they found. In August 2022 I was sent to Gynaecology as as Outpatient who said they were going to do a Laparoscopy to just check things. She said I wouldn't be priority but I would be above the 'average' weight time. 19 months later I had the Laparoscopy (more on that to come).

Back around August 2022 I did some research and I found out about Chronic UTI'S. I believed all my issues were bladder related; the pain in my pelvis, the blood in my wee, the voiding, the frequency, the tiredness, etc. I managed to find a private specialist that when I did a urine test found that surprise surprise I had a very high white blood cell count and blood in my wee. So I began more antibiotics, the first two I did not get on well with, eventually settling on Amoxicillin ( a drug that I have now been on for 19 months). With a diagnosis of a Chronic UTI I finally felt believed and that I knew what the issues were. However unfortunately this condition is not well known about on the NHS and I battled with some NHS urologists (not all though).

In June 2023 it was decided that I was not well enough to return to my job in the Emergency Services. I was unable to get out of bed a lot of the time and was still finding my feet with quantities of pain relief and different types. Not wanting to just give up and live a life with just pain as my only focus I started The Floral Trojan (and I'm so glad that I did).

Fast forward to March this year (2024) I was finally given a date for the Laparoscopy. I ummed about going as I assumed I had my diagnosis and did I need to put my body through it. However I remembered the cyst on my ovary and just thought it would be good to get it double checked. I went in for the surgery not telling anyone apart from my husband. Prior to going into theatre the Surgeon asked me to sign documents and he said to me "just because we don't find anything, it doesn't mean there isn't pain). I at that point felt safe in the knowledge that it was probably my bladder and that I was getting treated for it anyway. I had the surgery and when I woke up, the area where I get the most pain, felt incredibly painful, like it had been cut. I thought to myself they must have disturbed the bladder and it's got 'angry'.

About an hour later the Surgeon came in and said "So, you've got Endometriosis." He gave me some photos and told me a little about the surgery (I have no idea what this information was as still a bit out of it from the general anaesthetic). And that was it basically. When I spoke to the surgical team a few days later they told me there were four stages of endometriosis (4 being the most severe) and that I had level 3. The cyst on my ovary was Endometriosis the whole time and the pain in my pelvis was where all the endometriosis legions were/are.

My Endometriosis diagnosis was only 6 weeks ago, but has there been any information given to me - none at this stage! Anything I have found out is from books and social media pages from others who have the condition or strongly suspect they have. Therefore, even though I am only at the start of my diagnosis journey I wanted to write a blog to hopefully help others who may be going through something similar.

So what were my main symptoms:

Mainly pain- It fells like someone is constantly stabbing me in the pelvis but to different degrees, whether this is worse during my menstrual cycle, I am not sure, my pain is pretty constant (which is why I didn't initially relate to the painful period criteria of Endometriosis, as I didn't feel that this related to me).

Nerve pain - mainly down my legs and sometimes it feels like burning, other times it feels like weakness.

Endo belly- extreme tummy bloating.

Tiredness - this is not normal, 'I've worked a long day and i'm tired.' It feels like you've almost ran a marathon or been in a fight the day before. That's the only way I think I can describe it.

Bladder issues - (This could also be related to the chronic uti), blood in wee, voiding and frequency. Painful passing urination.

Lower back pain - It feels like a gremlin is trying to claw themselves out of my back.


Myth 1 - It isn't showing on scans so can't be Endometriosis. Endometriosis does not always show on ultrasounds or MRI's (there may be clues), but these tests depend on the people reading the scans. A Laparoscopy is the gold standard for diagnosing Endometriosis.

Myth 2 - Endometriosis is just 'painful periods'. It's crippling pain, whether it's monthly pain or like me it's chronic pain all the time. It's not just something women should just have to get on with and should just be able to get on with. It's severe and debilitating pain.

Myth 3 - Endometriosis isn't serious. Endometriosis causes lesions which if it develops and is not treated can cause organs to stick together, leading to severe damage.

Myth 4 - You can't get pregnant with Endometriosis. It may be harder, however I fell pregnant with my little boy very quickly - he's my lil warrior! I also know other women with Endometriosis who do have children.

This blog has been a summary of my journey to this point. If others feel comfortable sharing their own experiences or commenting then please do so. If you are reading this and have Endometriosis, have been recently diagnosed, awaiting a diagnosis or experiencing symptoms I am sorry that you are going through this!

I don't know what is next in my journey with this condition, but for now I am an Endo Trojan and to all you other Endo Warriors keep fighting!

Thanks for reading!

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