My journey to a diagnosis.(part 2)

This is still probably one of the scariest things I’ve ever done. I feel incredibly vulnerable being this open about my body, my health and my relationships. I have found a lot of comfort in other blogs, vlogs and other social media, created by those who also suffer from endo and although i would never be conceited enough to assume it would, i really hope mine might do the same for someone.

I want to stop a second and try (to the best of my ability), to explain what endometriosis actually is. It certainly has been more present in the media over the last few years, with news programmes, lifestyle shows and people on social media discussing it and educating the public. This can only be a good thing, however I still speak to a lot of people who have never heard of it, or people who have, but who have misunderstood the reality of the disease.

Endometriosis is a condition where cells similar to those found within the lining of the uterus grow in other areas in the body. This is often within the pelvic cavity and its organs, however it can be found almost anywhere. These cells behave like those within the uterus, which includes bleeding and breaking down during your period. This blood has nowhere to escape, and this can cause scar tissue, pain and general inflammation. The symptoms of endo are so varied and personal to each woman that diagnosing it is challenging. Symptoms can include; heavy/painful periods, chronic pelvic pain, urinary symptoms, bowel symptoms, pain during sex and infertility to name but a few.

 A woman may have what would be considered mild or superficial disease but still have severe pain and or other symptoms. Similarly a person with deep infiltrating endometriosis may only discover they have it when they experience infertility, whether that is due to lack of symptoms or an awareness that those symptoms are not normal. I recommend anyone that wants more information, whether that’s for yourself or someone else to visit https://www.endometriosis-uk.org/ which is where I have found a lot of information and advice, about diagnosis, treatment, surgery and living with this disease.

So… back to where I left off, I finished my last post with myself still lacking any real answers for my pain and twenty two year old me deciding to ignore (as best I could) as much of what was happening to me as possible.

Things continued in this way for another two and a half years. Those close to me knew there was something wrong, but were unable to name it. Life carried on, I moved in with my boyfriend, qualified as a veterinary nurse and was about to celebrate my twenty fifth birthday when things began to change. The pain I had been experiencing and had been managing with over the counter painkillers and occasional days off work, developed into something far more. In December 2017 my chronic pain became so severe I was signed off from work and prescribed opioid painkillers.

I was incredibly fortunate to have private health insurance through my employer, meaning instead of waiting several months for an appointment with a specialist, I was able to schedule one in for less than a week later.

My first experience of private health care in Britain showed me two things. There is an awful lot of money to be made in healthcare and, I genuinely found that you would get the same standard of care and treatment as you would on the NHS. You may be seen faster in a newer hospital but the care and treatment felt almost the same. This isn’t a criticism of private healthcare but a complement to our NHS.  I really want to write about my experiences of being treated for a chronic condition on the NHS, so we’ll put a bookmark in this for now.

At this point I had very little knowledge of endometriosis, and assumed that any gynecologist would be able to help me. My consultant was lovely, understanding but not a specialist in the disease. I was offered the mirena coil yet again and again deterred from further surgery. As I’ve mentioned previously I was desperate for a definitive diagnosis. So I pushed for surgery a second time. In my mind it was madness to treat the symptoms of a disease we didn’t know i definitely had and to not attempt at least to treat the cause if it was endometriosis.

I was scheduled for my second diagnostic laparoscopy two weeks later, and this time the surgeon was to fit the mirena coil to control some of my symptoms. I awoke to my consultant informing me surgery had gone well and she could confirm I had endometriosis . She had found a small amount of superficial disease and had removed it via ablation. I was on a high after that (morphine can do that to you), I had finally been given the diagnosis I had wanted for so long. My doctor advised that it could be six months or so before the benefits from the surgery and the mirena coil were felt but otherwise I was fine.

My recovery from surgery although a little tougher than last time was uneventful. I was back at work within ten days and although taking it easy felt like I was doing fine. I didn’t quite know how to feel about it all though. Now my diagnosis was confirmed, I spent my recovery reading up on endometriosis. The relief I had felt when told there was actually something wrong with me, was replaced with the realisation that this illness could stick around for a while.

Weeks turned into months and the pain I had felt before my surgery was not going away. When returning to the consultant who performed my surgery I was told if I was still experiencing pain then endometriosis wasn’t the cause as she had removed it all. This is when I decided to spend some time reading about other women’s experiences of failed surgeries or when their outcome wasn’t what they expected. I learnt that there were multiple techniques for removing endometriosis. Ablation, where the disease is “burned away” with either a cautery or laser was what had been performed during my surgery. Excision is another technique, where the endometriosis is cut away and removed. I also learnt that the success rate following ablation surgery was considerably lower than that of excision surgery. This is due to the strong likelihood disease is missed during ablation surgery if the surgeon simply burns away any visible disease, potentially leaving deeper less obvious disease behind.

So it’s the summer of 2018 and I feel as if I’m no better off than a year before, but what I did have was knowledge. The next few months were hard but I got busy equipping myself with as much information as possible for the next part of the journey.

I’m going to leave it here for now. I’m getting so much out of recording my diagnosis story, although it’s taking me longer  than I expected! So I’ll definitely be continuing it in the future!

3 Comments »

  1. Thank you for sharing your experience! I am much older than you were when you were diagnosed (I’m 40), but I’ve been suspecting that I have endometriosis and am planning to talk to my gynecologist next week at my appointment. I really appeciate being able to read your story.

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