Endometriosis: My diagnosis story.

One vivid memory from my childhood, I must have been 9 years old, was nervously asking my mum: ”Do periods hurt?” My mum was always brilliant at handling all questions birds and bees, and she gave me a characteristically diplomatic answer along the lines that most people find it OK, and manage with a hot-water bottle or some paracetamol if needed. I was comforted, but secretly felt that I would be one of the unlucky few at the severe end of the spectrum- I am a natural pessimist. ”But what will that feel like?” I wondered.

Fast forward 15 years and it’s definitely been a case of worst case scenario confirmed.When I have a period I stay awake for days, in agony, lying in the fetal position or pacing my living room. Painkillers do nothing. A hot water bottle helps a bit, enough to stop me from passing out at least. On the plus side, all the nights awake have given me a lot of extra time to watch documentaries and read things, so my general knowledge is pretty good now.  I was on the pill for seven years (I had emphatically insisted to my GP that I would fail my GCSEs if I didn’t have it) and found that had helped to mask my symptoms and make life bearable again.  However, I experiencing a bout of chronic and debilitating  migraines in 2010, my doctor suggested I stopped taking it. No substitute or alternative medications were discussed, I was just left to get on with things. When I raised the problem again and again I was always given a prescription for Mefenamic Acid and sent on my way, despite my protestations that the drug has little effect on me.

So, I was back to square one. To make things worse I had started to experience some additional symptoms over the past year- severe stomach upsets, exhaustion that would not go away no matter how much I slept, headaches, and pains in my abdomen, chest, and shoulders. Fed up and very anxious, I went to see my new GP (I had moved house), who referred me for some blood tests. They revealed an elevated ESR score- which is an unspecific marker for inflammation somewhere in the body. I had a number of scans, but they all came back clear, so I was sent on my way again.

A year passed by where I just struggled on with no help, and struggling to make sense of what was happening to me.  It got the the point where I really wasn’t functioning on a daily basis, so I went to see my GP again. This time I insisted on being referred to a specialist- and was promptly sent on my way to gastroenterology. Over the next 12 months I had an array of tests (blood cultures, CT, ultrasounds, colonoscopy, endoscopy etc) and many potential diagnoses were banded around (Chron’s disease, IBS, coeliac, CFS, pancreatitis to name a few), but it mainly seemed to be lots of stabbing in the dark and little concrete progress. On one occasion shortly after this, my stomach upsets became so bad that I was unable to eat or drink for five days, and was hospitalised over a bank holiday weekend attached to a potassium drip. Again, I had an array of slightly odd test results (elevated ESR, blood in my urine etc), but since it was a bank holiday nobody was really about to look into things, so I was sent on my way again.

As a last ditch attempt to investigate the elevated inflammation markers in my blood work, my gastroenterologist agreed to me having an MRI scan of my small bowel- as Chron’s disease runs in my family. The test was slightly more dramatic than I planned (as is my general style) as I had to drink a litre of what I can only describe as ‘death juice’ before the scan could go ahead- and I struggled (read: mainly failed) to keep it down. Slightly hilariously, as I was projectile vomiting it across the room for the 10th time, a nurse commented: ”Do you just not like drinking it? Is that the problem?”Anyway, once that particular ordeal was over with, I didn’t hear anything for about two months, so I presumed that, as usual, the test had come back clear- no news is usually good news in these circumstances I find.

Out of the blue one Tuesday morning I received a letter from my consultant, saying that my intestines look OK, but I have a 5cm by 5cm ovarian cyst, and as a result she is referring me to gynecology. On a side note, I found this news very disturbing to receive by post. It naturally prompted ALOT of questions to come up, but I had nobody to direct them too. Dr Google wasn’t much help either as there are so many types of ovarian cyst, that I couldn’t guess which type I may have.

After waiting a few weeks I had an ultrasound scan to see if this cyst was still there, as many just reabsorb on their own accord. Sadly, it was still there, and the ultrasound lady kept giving me her ‘pity’ face. This can’t be good I thought- which was confirmed the next day when my GP called and asked to see me. She explained that my cyst was the solid, sinister kind and that as a result she was giving me an emergency referral to an oncologist for three days time. I cannot describe how stressful those three days were. Time almost stood still, but my heart was beating at what felt like a thousand beats a minute for the entire time. When I was sat in the waiting room on the morning of my appointment I just kept thinking: How has this happened? How have I ended up here? It was not a good time for me. After looking through my notes he quickly put my mind at rest, as he suggested that I have endometriosis, and was sending me for a laparoscopy and cystectomy to confirm this.

I found the six week wait for the surgery quite difficult. I’d never had an operation before, and worried about what it would be like. The big day rolled around quickly however, and by 1pm I was awake and in recovery. The procedure and immediate aftermath were nowhere near as bad as I feared, but I am planning to talk more about that in a later blog post. By 2pm my surgeon came to talk to me.  She told me that I have severe and widespread endometriosis that is attached and scarring my uterus, ovaries, stomach, diaphragm, bladder and bowel. She said the surgical team were amazed at how bad it is inside me ”considering I have been so asymptomatic” (I’m going to need years of therapy to fully get over that comment I think). After this, I was then informed that my main problem over the coming years is likely to be fertility, and that I should have the Mirena coil fitted to help preserve this and to manage my symptoms. And with that, I was swiftly discharged from hospital to the care of my GP.

On reflection, I am pretty angry that it took so long for me receive a diagnosis, and some proper medical input. I think that if I had been listened to properly over the years, and my symptoms considered in unison rather than isolation, it needn’t have got to this point.

So, that’s my endometriosis diagnosis story. Sorry its so long! Although, considering it takes over 7.5 years (on average) to receive a diagnosis in the UK, its perhaps not too surprising that this is a complicated tale. How does it chime with your own experiences, or those of somebody you know? I’d be really interesting to hear your thoughts!…


8 thoughts on “Endometriosis: My diagnosis story.

  1. Thank you so much for sharing your personal story. I read over your blog today and enjoyed your descriptive posts quite a bit — I’m sorry for all that you have been through though! I have also included your blog on my list of endometriosis sites in case anyone would like to read more personal experiences with endo.

    You’ll find your site listed at the end of my post UBIQUITOUS ENDOMETRIOSIS: https://hysterectomy4dysmenorrhea.wordpress.com/2014/12/15/ubiquitous-endometriosis/

    I wish you continued health on this journey! 🙂


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  4. Thanks so much for sharing your story. I was admitted to hospital with suspected appendicitis and it turned out it was a 5cm endometrioma (same size as yours… snap!). I was also very frustrated that it took so long to be diagnosed with endometriosis, and I feel I was the one that had to make this suggestion to my GP’s and not the other way round. I have some abnormal test results so am seeing an oncology gyno on Monday which is very anxiety provoking but most likely means that I have more of an advanced stage of endo, being somewhat reassured by your own experiences and those of other women I have read about on the internet (not that advanced endo is reassuring at all but better than cancer), so thanks for helping to ease some of my anxiety. I think my situation has so many parallels to what you went through. I have my lap on 16th Feb. I hope in the future that young women are better educated on gyno issues and that painful periods are not normal and should be taken more seriously! Best wishes, Janet


  5. I am going through the same thing and I am going in for surgery In a week. I have high white blood cell count, high sed rate 4 times the normal. I hope this helps. I hope you are feeling better.


  6. Thank you so much for sharing this. I am living in Egypt for the last 4 years. I have suffered for over 10 years and every doctor in the Uk misdiagonsed me. “Oh you are too fat” ” you have IBS” etc… I know my body and found it highly frustrating. 3 years ago I started to really suffer and ended up in hospital here in Hurghada, where I must say, they were very good and found a cyst. So treated that and it was absorbed.
    Suffered on and off since.
    Then 2 months started to get the signs back again. ( Pain in the right side ovary, consistent relentless pain in my lower back that radiates to my legs and the usual stomach pain) Went to the same hospital and was told to take a X-ray of my back as it sounds like back problems. Doh! so then he diagonsed arthritis in my back and gave me 6 medicines to take. Took them… nothing…
    Finally found a woman gynae who has her private clinic here and went to her… She has found 2 6c,m cysts and says that I am showing a very bad case of endo. 😦 Finally after 10 years someone gets me.
    Went for bloods and my white blood count was high… went for the ESR and CRP tests and both came back high… But the ESR one was crazy.. So ref range is up to 12 … I am at 98!!! So I am now on 2 different antibiotics and some hormones.
    What should be the next step??? I am in the dark with all of this.
    I hope this is the start of the end as I am shattered and never felt so low or deep down tired in my life.


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