#13 Lets talk about endometriosis

The first time I was told it looks like I have endometriosis was when I was hospitalised for a kidney infection. It was then that it was picked up via an ultrasound scan. The radiologist at the time wanted to get a further look at what was going on but I was keen to leave the hospital as I was due out that day after being in for 4 days. Looking back I wish I had stayed for him to do the necessary checks there and then.

WHAT IS ENDOMETRIOSIS?

So what is endometriosis? Endometriosis is a painful disorder where tissue like the womb lining (the endometrium) are found outside of the womb. This tissue can grow on your ovaries, your Fallopian tubes, the bowel and other places, with some outside of the pelvic area. When you have your period, blood becomes trapped and is unable to be released normally and can form complex cysts known as endometriomas which is what I later found to have.

During your period, these cells break down and bleed. However this internal bleeding has no way of exiting the body. This then leads to inflammation, intense pain and a build up of scar tissue.

SIMPLE CYSTS VS COMPLEX CYSTS

What is are complex cysts? So you have two types of cysts, they are either simple or complex. Simple cysts are normal to have but complex ones aren’t. Simple cysts are not cancerous where as complex solid cysts raise the risk of a chance of malignancy. There are various different types of complex cysts that you may come across such as dermoid cyst and an endometrioma. Dermoid cysts are often benign but a small percentage can be cancerous.

WHAT IS AN ENDOMETRIOMA?

If you have an endometrioma then you definitely have endometriosis whereas if you have endometriosis this doesn’t mean that you will have an endometrioma. Endometriomas are also referred to as ‘chocolate cysts’ which don’t go away on their own and often involve surgery known as ‘laparoscopy’ which is what I had for the removal. Endometriomas aren’t cancerous however they can be misdiagnosed and what doctors thought was an endometrioma sometimes are in fact cancerous and known as Ovarian Cancer. Both endometriosis and ovarian cancer mimic symptoms as well as IBS which I will also cover. Endometriomas are also one of the biggest reasons for infertility with women who have endometriosis because they kill off the ovarian tissue and in some cases require the removal of the ovary during surgery which means you will have less eggs and in some cases no eggs at all if you have had both ovaries removed.

It can be an incredibly emotional journey for women especially with relation to infertility, with endometriosis being one of the main causes for it. Having said that there are many women out there who have had endometriosis and are able to get pregnant. So if you have been diagnosed with endometriosis this doesn’t mean you definitely won’t be able to have children. It all depends on what stage it is at and how much damage has been caused by it. This is why detecting it early is key and pushing for doctors to investigate if you have any of the following symptoms (that are persistent).

ENDOMETRIOSIS SYMPTOMS

. Very painful and heavy periods. Can cause some women to pass out from the pain.
. Pelvic pain
. Large clots during your period
. Painful bowel movements
. Irregular bleeding
. persistent bloating

These symptoms can be passed for endometriosis, IBS and Ovarian cancer. This is why it’s important to see your doctor if you are experiencing any of these frequently and it doesn’t go away. The doctor should arrange a scan to be able to determine what is going on and the cause of your symptoms.

It’s important to note that people in their 40s, 50s, 60s etc are very unlikely to suddenly develop IBS.

HOW ARE YOU DIAGNOSED WITH ENDOMETRIOSIS?

The simple answer to this is through a laparoscopy, the only way to officially diagnose the condition. A laparoscopy is surgery, usually a day case surgery though sometimes you may need to be in hospital for a few days, for me (3 days). This all depends on what they are doing and what they find. It will also depend on the pain management as you are likely to experience very painful shoulder and sometimes chest pain afterwards due to the gas they pump inside of your stomach during the surgery. Although they release the majority of the gas out again some remains trapped inside your body and travels upwards to your chest and shoulder area. This is why you experience this pain after surgery and will need pain management for it.

I’m going to write a future post about surgery as there is a lot to cover and explain.

MISCONCEPTIONS

Many people think because their ultrasound is clear this means they don’t have endometriosis. This isn’t the case at all and endometriosis can only really be seen if you have findings such as an endometrioma on your ovary. So if you have all the symptoms and your scan is clear and the GP says no further investigation is needed, you need to push for things such as a CT scan. Having a diagnostic laparoscopy isn’t the same as having a laparoscopy for treatment of endometriosis such as excision of endometriosis/removal of an endometrioma etc. Diagnostic laparoscopy will only involve small procedures/removal of endometriosis and used as a way to diagnose that you do actually have the disorder.

The main important thing is to get to the bottom of what is causing your symptoms and to enter the gp appointment or gynae appointment with that knowledge beforehand is very useful and I hope this blog post will help you in doing so.

Another misconception of endometriosis is that you definitely won’t be able to have children. This isn’t the case and whilst it does cause a lot of complications with many women with fertility, it doesn’t mean you won’t get pregnant. It all depends on what stage your endometriosis is at or how much damage it has caused.

Finally, the last misconception is that endometriosis is endometrial cancer. Most definitely not! Endometriosis is not cancerous it is a benign condition. Endometrial cancer is completely different.

Let me know if you have heard of endometriosis before and whether you found this post useful. Also interested to hear anybody else’s experience with it.

x

7 Comments Add yours

  1. Thank you for sharing. I have suffered with endometriosis officially since I was 28 but it took 10 years to officially get my diagnosis which has led to endometrial cancer. Thank you for sharing your experience and bringing light on subject society needs to learn about. Hope your coping okay. X

    Liked by 1 person

    1. I am 28 now and only just had my first laparoscopy. Can’t imagine what those 10 years must have been like for you. It’s so wrong how doctors are not listening and causing unnecessary prolonged pain and in your case to develop to cancer which must be so hard. I’ve learned a lot already by reading your blog so thank you for that ❤ and thank you for your kind words x

      Liked by 1 person

      1. Your more then welcome. Thank you for taking the time to read my blog. Funny how such a small app like this can make a difference. Your blog is fascinating and will be taking the time to read it. Don’t ever give up on getting heard and research everything beofr going ahead with anything doctors advise in regards to endo us endosisters have gotta stick together x

        Liked by 1 person

      2. Thank you so much 💜yes I’ve really found this platform so helpful and supportive x

        Liked by 1 person

  2. Would be okay if I share the link to your company log post regarding endometriosis I totally understand if you don’t feel comfortable with it. X

    Liked by 1 person

    1. Yeah sure I’m totally fine with you sharing it 🙂 Thank you x

      Like

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