No cause, no cure. My Life With Endometriosis.

No cause, no cure. My Life With Endometriosis.

As it is Endometriosis Awareness Week, I decided to get in an expert to tell you about endometriosis. An expert? I hear you say. Yes, someone who actually suffers from the condition. What better expert is there than someone who deals with the ins and outs of the condition every day of their life? I have asked the lovely Molly to write a piece about her experiences with endo and how she was diagnosed. I want to thank her for doing this on such short notice and being so open with something that has vastly affected her life. By sharing her experiences hopefully people can understand the condition better and learn how women can identify the symptoms so they can get help too.

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Meet Molly! This week’s lovely guest blogger.

Hey, I’m Molly and this is my post about having endometriosis. Being a 13 year old girl who is complaining of painful, heavy periods, my doctor didn’t exactly take me seriously. At this age, I had begun to get horrendous period symptoms with my periods that I’d never experienced before. Tummy pains, back pains, mood swings…the list goes on. Whatever period symptoms there were, I seemed to experience them.My periods were so messed up I was going nearly 7 months without bleeding and when I did I’d be so heavy, I’d bleed through a super plus tampon in an hour and a half (anyone who doesn’t know, that is biggest, fattest tampon you can get!) and it would be this heavy for 7 days straight!  Whenever my period finally came, I would be off school for a least a few days a week, curled over on my side unable to move from my bed. I knew this wasn’t normal. Don’t get me wrong, everyone has different experiences with their periods, but I knew deep down it was something more than that. The only problem was getting my GP to take me seriously and do something about it.

I returned to the doctors every few months, with them telling me the same thing every time: “You’re a teenage girl, you just have heavy and irregular periods.” I saw multiple doctors who prescribed me different forms of the contraceptive pill every time the previous one stopped working. I had been put on four different types of contraceptive pill and none of them worked any better than the last to relief my symptoms. As I got older the doctors began to prescribe me stronger painkillers which worked for a while but weren’t a permanent solution. I didn’t want to be taking painkillers for years on end just because my doctors chose not to investigate the issue any further.

At nearly 18, I was reading Cosmopolitan magazine and came across an article on endometriosis (endo). A condition I had never heard of before. I started to read different women’s experiences and read into what the condition was. Endometriosis is when the lining of your womb appears on the outside of your womb. It can grow anywhere in your body. The most common places tend to be on your fallopian tubes ovaries and stomach. I started to read the symptoms of endo and as I read each one it was clear they mirrored my symptoms. Painful and heavy periods; irregular bleeding; pain during and after sex; tummy, pelvis and back pain; and also risk of infertility (the side effect that still scares me the most.) I also read that there is no known cause for the condition as well as no current cure, just pain control to relief your symptoms. I went on to read that the only way to diagnose endometriosis was by having a laparoscopy (an operation to go in and have a look at your womb and then to laser off any lining that has grown outside of your womb). As I read the article I knew it was possible I had the condition. I explained to my mum that I wanted to see my doctor again to suggest this as a cause for all my problems. And this time, I wanted my mum there for the doctor to take me seriously and not just palm me off again.

After a bitter battle that had been going on for over 4 years, my doctor finally listened and referred me to a gynaecologist. Unfortunately I can only believe it was because I had my mum with me, and not because she was concerned for my health.

The summer of 2015, a few weeks before I was going off to University, I had my operation. I was diagnosed with endometriosis and my laser treatment was a success for a while. However, by the start of 2016, my symptoms had returned. Once again, I felt like a battle I had to start all over again with my GP. I didn’t want to keep having this procedure, and I also didn’t think they’d be so desperate to put me back on the waiting list for it after having it for the first time only a few months before. I wanted to find an easier relief. I was put on a new medication that worked as a painkiller as well as medication to reduce the amount of bleeding. Basically, the less you bleed the less pain you’ll be in.

During my first year at University, my attendance was low and I was constantly absent due to my never-ending pain. I spoke with student support, she suggested joining some form of organisation or chat room etc. Just to speak with women and girls who are going through the same thing as me (as I knew no one who was experiencing what I was). That’s when I came across the Endometriosis UK website ( www.endometriosis-uk.org ). It has helped a lot with understanding my condition as there isn’t that much information available to people. I have heard different people’s stories and have found out different ways to control my pain. Whether that is changing your diet (which I wasn’t too keen on) or getting the coil in order to stop the bleeding.

I have been struggling with my periods for nearly 8 years now and I’ve been diagnosed with endometriosis for nearly two of them. I can only imagine how different things could have been if my GP had taken me seriously earlier on but what’s done is done and I’m just happy that I’ve finally been diagnosed. Although there is currently no cure, there are so many women and girls who are going through this. Having this condition has taught me to have patience with finding different pain relief that works for me and I hope that having the coil fitted will be helpful. Endometriosis is something that you have to just accept and learn to cope with in any way that works for you individually.

It’s awful that just because I was young, my doctor didn’t take me seriously but the only thing I can say is just make sure you inform them with what action you want to take. I suggest researching endometriosis and going to your doctor with the facts and symptoms, if this is what you’re experiencing, that was the only way I managed to get any further. Oh, and don’t forget to take your mum for back up!

Once again, thank you to the beautiful Molly for this amazing piece. It’s great to have a personal post, and I couldn’t have written this with more feeling than she has given it. Be sure to go to the doctors, ladies, if you have any worrying changes in your cycle, flow or period symptoms. Don’t dismiss it, because you could need some treatment.

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