Living with Suspected Endometriosis: Coralle’s Story

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Guest post: What It’s like Living with Suspected Endometriosis by Coralle.

My name is Coralle and I have chronic pelvic pain due to suspected endometriosis. If you’re not sure what this is, it’s a condition in which the lining of the womb starts to grow outside of the womb. Although I am yet to be diagnosed, I will be having a diagnostic laparoscopy soon to hopefully get some answers.

I can’t exactly pinpoint the exact moment when the condition took over my life. You see, I’ve been having painful and heavy periods from the age of 12. So it could be that I’ve had endometriosis from my very first period but I was unaware of it at the time. I knew there was something wrong because my periods were so crippling that I would often lay on the bathroom floor in agony, unable to even stand up. I would vomit, become dizzy, and I could eat nothing. I’d often miss time off school because of it. Yet I didn’t go to the doctors because I was made to believe that the pain I was experiencing was “normal” and that it would soon pass, maybe in a few years.

Fast forward a few years and my symptoms did seem to improve somewhat. I found I wasn’t often vomiting with my periods, and the pain didn’t seem as crippling as it used to be. I don’t know what changed but all I know is my periods got worse again. And not just that, but I started noticing other symptoms again. Some of these were chronic pelvic pain, chronic fatigue, bloating, blood clots with my period, painful sex, pain after a bowel movement, pain during or after urinating, and the list goes on.

I went to the doctors as soon as these symptoms appeared. I was worried. I thought I might have Crohn’s disease or coeliac disease as there’s a family history and I wanted to get tested as soon as possible. I had all the tests: ultrasound, MRI, colonoscopy, blood tests. To my relief, they told me they couldn’t find anything wrong. It was a strange feeling as I wanted to be happy about the news but I also felt so deflated that there wasn’t a problem. I wanted to fix whatever was wrong with me and I couldn’t do that without a diagnosis.

Eventually, I started to connect the dots. I have pelvic pain all month round. Most days it’s mild and I can manage it but it gets worse the closer I get to my period. I started to read more and more about endometriosis and as there’s also a family history, I thought it was worth mentioning all of this to my doctor. Since then I have seen a gynaecologist who has agreed to put me on the list for a laparoscopy so now it’s just a case of waiting.

I should mention at this point that I was working up until the middle of January but due to taking too much time off sick, I was told they couldn’t hold my position. I was upset but at the same time, I did understand their decision. I now realise it was the best decision to make as it’s hard to balance work and appointments and getting much-needed rest. And the job I had was very physical which made it that much harder to manage.

Some days just standing up for a few minutes is too much, so it makes going out more of a one-off occasion than a regular thing. My partner is really understanding of this so we always make sure that we plan something on the days when I’m more likely to feel okay (not around the time of my period). In a way, I think it has made our relationship stronger because I don’t think anyone has ever supported me in the way that he has. I’m also so lucky to have spoken to some very supportive women online who are going through exactly the same thing that I am. It can be difficult getting a correct diagnosis and it’s something that takes a long time, so during that time, it’s a relief talking to others who know what it’s like.

In truth, I am scared about receiving a diagnosis. Endometriosis is a chronic condition and there is no cure. Surgery can be helpful and so can hormonal treatments. If that doesn’t work I can also look into supplements, diet, exercise and other natural remedies. There has to be something that will help, and I’m determined to get to a better and healthier place no matter what it takes.

I’d encourage anyone who has painful periods or other symptoms of endometriosis to go to the doctors and get referred to a gynaecologist. These symptoms rarely go away on their own so it’s best to seek support if you have any concerns.

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