Endometriosis: My story & What has helped me

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Please note, I am not a healthcare professional. I'm just someone who lives with endometriosis, and the information I'm sharing here comes from my experience, from knowledge that has been shared with me by healthcare professionals, and also from studies, articles, films, and podcasts that I've come across. This shouldn’t be taken as medical advice. Please consult your doctor before beginning new treatments or making lifestyle changes.


Getting a Diagnosis

In February of this year I had my first ever laparoscopy, and was subsequently diagnosed with endometriosis. Getting a diagnosis was not as simple as it sounds though. Actually, it took 19 years for me to get that all important diagnosis. My experience seems to be a common one, so here's how it happened...

My doctor took many years to refer me to a gynaecologist, and when they finally did refer me, the gynaecologist examined my tummy and said everything was "fine" and "normal", but to "help with the pain and heavy bleeding" they prescribed me the Microgynon (combined) pill, and discharged me.

My debilitating periods continued, and so, I too continued to go to my doctor with my symptoms. This back and forth went on for many more years, until eventually I was referred to a gynaecologist again. The gynaecologist this time examined my tummy and vagina, did some blood tests & an internal ultrasound scan. After seeing various doctors and waiting for results, one gynaecologist finally decided that I should have a laparoscopy, as my symptoms and results suggested endometriosis.

A few weeks after my laparoscopy, I was officially diagnosed. It's always a bit tricky getting diagnosed with new conditions (obvs!); I usually get a feeling like "Ah shit, for fuck's sake, not another one!" which is shortly followed by "Ah finally, I know what's wrong now so I can start to treat and deal with it!". And this is exactly how finding out I have endometriosis went too. It's not the best news (hah!) but I've been trying to find out what's going on with me and my debilitating periods since the age of 11; when I first got my period. I'm now 30. I actually ended up in hospital with severe nausea and pain the day before my period even started for the first time, and since then I always made doctors aware of my symptoms. Meaning, healthcare professionals have been aware of my debilitating periods since the beginning, but did they care? Not a fucking chance. 

Diagnostic delay seems to be a common experience amongst those with endometriosis. This is something I've decided I'm going to make noise about, as the fact that in this day and age, someone can live with such a debilitating condition with no knowledge of it and without treatment is beyond unacceptable; it's cruel. 

There needs to be more research and education when it comes to endometriosis, and periods in general. This could reduce diagnostic delay, thus reducing delay in treating the condition. I also believe that raising awareness is key; we need to talk about it and raise as much awareness as possible. In addition, doctors and gynaecologists need to be made aware of how this condition affects their patients and how much getting a dianosis earlier can help. I'm not saying that all doctors dismiss or belittle how much endometriosis affects people's lives, but this has definitely been my experience. In 19 years of asking doctors for help, I've only had 4 doctors who showed genuine interest in my situation - and I only met these doctors recently, hence finally getting a diagnosis and treatment.


Classification System 

I've come across many people with endometriosis talking about what stage of endometriosis they have, but it seems that this classification system is not used as often as it once was. I, for example, was not given a stage. After asking what stage of endometriosis I have, I was told by the gynaecologist that it is "mild to moderate". It seems that gynaecologists are trying to stay away from this classification system. If you would like to learn more about this classification system, I've written about it here



Managing Endometriosis Symptoms


Since getting a diagnosis, I've completely thrown myself into embracing endometriosis by learning about it as much as possible, by talking about it, and by ackowledging how I'm feeling rather than trying to suppress my emotions and pain. I've asked questions and carried out extensive research. And I've discovered and tried a few things, such as the below, that have reduced the severity of my symptoms.

Surgery 

I had a laparoscopy (my first and only so far) in February. I was told by the surgeon that they burned the endometriosis tissue in my abdomen. However, after doing more research and speaking to others with endometriosis, I have find out that an excision surgery is the best option when it comes to treating endo, but unfortunately as I didn't know this before my surgery, I did not request it, but I will definitely be asking for an excision when it comes to future surgeries. I've written more about different surgeries to treat endometriosis here

The main thing I noticed after my surgery is a drastic improvement in my mental health. It's definitely not the only reason my mental health has improved - I have been doing therapy for over two years, I take medication, see a psychiatrist regularly, and I've lived a recovery focused life for a few years now - but I do think the surgery has contributted. However, in terms of pain, I don't feel the surgery made any difference to my pain levels at all.


Hormone Treatment

In terms of treatment, the pill seems to be best option for me. Doctors were keen for me to get a Mirena coil fitted during my laparoscopy, but I said no way. I've tried the Mirena coil before and it increased the severity of my symptoms; I bled non-stop for months and I ended up with an additional pain on top of my endometriosis pain. I gave it six months, which I think is a good shot, and then begged for the thing to be removed.

Since my diagnosis, I have tried two combined pills - I firts tried taking Marvelon combined pill, back-to-back so that I don't have periods. However, this didn't work too well for me - it could be different for you though - it helped me with the pain, but I ended up bleeding heavily non-stop. So, with my gynaecologist, we decided to try a new pill. 

Before starting the new pill, I took a five day break to allow my body to have a "normal" period with no pill in my system. This was advised by my gynaecologist, and even though it was a horrific period; quite painful and very heavy bleeding, it does seem to have helped my body stop bleeding.

The new pill is the Cilest combined pill, and so far it's going really well (knocks on wood). I've been on it for a month now and it's stopped my periods completely (so far); I've not bled for just over three weeks, which feels incredible after 6 months of  non-stop bleeding. And as I'm not having my periods, my pain is not as severe at the moment ~ so far, the Cilest is looking good for me. 


Pain Relief & Tranexamic Acid

I want to add here that I take Tranexamic Acid, Mefenamic Acid and Codeine when necessary - Tranexamic Acid is a medication used to prevent excessive blood loss, it does this by slowing the breakdown of blood clots. Mefenamic Acid is an anti-inflammatory pain killer, it's basically Ibuprofen but a tad stronger. I also take Codeine when the pain is very bad. Codeine is also a pain killer and when combined with Paracetamol, it can be more beneficial in treating pain. I only take Codeine when it's really necessary though, as it slows down digestion and so can cause constipation. If you have this problem, taking a laxative such as Movicol may help, but please do speak to your doctor before trying anything new. 

As I'm not having my period, my endometriosis symptoms are not as severe at the moment, but I still need to take pain killers. However, the pain is definitely more bearable. I have also been trying some natural ways to help with pain relief - I've found the Castor oil pack helpful, and I recently started using a Magnesium spray that's proved effective. And I couldn't live without my hot water bottle! But what I have found to be most effective, is following an endometriosis diet.

Unfortunately, none of the above takes away the pain completely (wouldn't that be wonderful?!) but it does take the edge off and makes the pain more manageable.


The Endometriosis Diet

The endometriosis diet works for me; it's helped reduce severity of my symptoms, as well as increased my energy levels. And when I don't follow the diet for a few days, I feel that my symptoms deteriorate. You can read my post 'The Endometriosis Diet' for more on this. 


Lifestyle Changes

I've also made a few lifestyle changes which have helped me manage my mental health and have also reduced the severity of my endo symptoms ~ I'm shared everything I know and have tried with regards to lifestyle in '10 Lifestyle changes that help me manage my Endometriosis.'

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Final Word

If you're thinking of trying any of the methods I have mentioned above, please do consult your doctor and/or gynaecologist. This is my experience with these treatment options and lifestyle changes, but we're all different and your body may not agree with these methods as well as mine does.

Lastly, to raise awareness of endometriosis and share what I've learned from my experience of living with this condition, I've decided that over this coming week, I'll be sharing everything I know about endometriosis, including common treatment options, the endo diet and lifestyle changes that can help. I know that Endo Awareness Week in in March, but well...welcome to my personal Endo Awareness Week! Huzzah! 



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