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Q&A: Endometrosis & I

Endometrosis as a subject is very much neglected. It isn’t something that you would talk about in a general chit chat over a ‘cuppa’. However, for 176 million women worldwide this is a subject that affects them every minute of the day and the condition is pushed aside because its too gruesome for… well men to understand or contemplate. As soon as the following are mentioned:


Womb.

Period.

Blood.

Babies.

Cervix.

Sex.


The person I’m speaking to gets ‘cringed out’.


This needs to stop.


Young girls AND boys need to be educated on this matter.


So, I made it a pledge to make sure that all my friends, girls and boys. Family members young and old, become more aware of this ‘awkward’ but bloody painful subject.


I also hope to educate Mums and Dads in the matter, removing this stigma behind girls having periods, and sex for that matter. Parents shouldn’t disbelieve their children when they say they are in pain.


Okay, I get children like to play on having a cold or rinse a thermometer under a hot water tap to get the day of school, but if your teenage daughter is coming to you and saying her period pains are too much for her to handle DON’T instantly take her to the doctor and demand a form of birth control!


I’m not saying that Birth Control is the wrong way to go around it, just listen to your Daughter beforehand.


Don’t disbelieve them when they can’t move or get sent home from school.


I get that its hard to understand someone else’s pain when you can't emphasise with it but trust me from someone who feels that pain daily.


Believe them.


Before I end up extending this rant longer than what it needs to be, I thought this subject would be a good one to feature on my blog permanently.


When I published my last post about this matter (LINK) I was flooded with so many questions about the disease from both men and women.

This triggered a light blub moment and I thought I would take the chance to answer all those questions from my first blog and more recent questions gathered through my social media in today’s post.


So here it goes.



Q – What even is Endometrosis?


Okay, so I will describe it in a non-scientific way. Fingers crossed it will make it easier to understand.

So, inside a woman’s womb there is a sticky substance that lines it once a month, ready to keep a fertilised egg warm and to stick the egg to the wall of the lady’s womb. Once a month this lining sheds if and egg isn’t fertilised. This is known as a Period.


With Endometrosis, the lining of the womb also grows on the outside. This sticky substance can be regarded as a red glue. It sticks to all the vital reproductive, digestive and urinary organs such as the ovaries, bowel, kidneys, bladder. It can also stick to your intestines and the diaphragm. This red glue can perforate the walls of this organs which can become infected and affect their functions.


This red glue, as the same as the lining of the womb, sheds once a month when an egg hasn’t been fertilised. However, with endometrosis this red glue has nowhere to escape. Typically, it would escape through the cervix and vagina, however, with this condition once a month a period and internal bleeding come hand in hand.


If this red sticky glue has perforated any organs walls this will also begin to shed, leading to the bleeding within the bowel, bladder and kidneys which explains why some patients have regular blood in their stools and urine.


Q – How do you think the Doctors could help more?


The upsetting thing is Doctors have basic knowledge about the condition, probably to the same extent as most people due to the lack of investigation of the condition. We need to remember that it isn’t the doctor’s fault. They can only work with the education they have been given and resources they have.

However, there is a lot medical professionals could do to help the situation.

I think a couple things the doctors could do which would help sufferers, even if they haven’t been diagnosed, would be a sense of sympathy. I found many of my doctors couldn’t sympathise with me, one because they haven’t got the condition or two because they disbelieved the symptoms I was explaining. Leading me onto my next suggestion, which is to believe their patients especially if they have been returning with the same and additional symptoms.


When I was going through the battle of being diagnosed with Endo, I found doctors wouldn’t listen to me fully because I was so young (I was 14 when I first went to the doctor) and its extremely rare for someone under the age of 20 to have severe endometrosis. It is regarded as rare because once again, the research and general statistics for the past couple years show the average age is in the late twenties rather than late teenagerhood. However, this shouldn’t justify their lack of sympathy. If someone will a swollen ankle attends the practice, they should receive the same level of sympathy and attention as a teenage girl screaming in pain because they are on their period would.


Doctors should also remove the phrase “you just have bad periods”. Periods are normal, but if a child or young women is coming to the doctors to discuss the severity of the pain and the fact this pain is affecting their everyday life… they should have their symptoms investigated thoroughly. I would go to the doctor because I would faint when I was on my period followed with such abdominal pains I couldn’t stand, and they disregarded me as a teenager that wanted some time off school. They simply told me that fainting comes with periods. He didn’t examine me, look at my stomach, perform and blood tests, he just shoved me out the door.

I think Doctors should also maybe have more education on this disease, provide leaflets in doctor surgeries and make the condition more well known in their practice as I hadn’t heard of the condition until I looked online.


Along with this, I think that Endometrosis should be investigated as much as Ovarian Cysts and Polycystic Ovaries. Over six years of continuous investigation, I was given so many ultrasounds and blood tests under the impression I had Ovarian Cysts. However, only once in those six years had I heard of the possibility it could be endometrosis, and this was the doctor that referred me to a surgeon/specialist.


Q – How are you so strong through all of this? Your so inspirational.


I also think Friends are super important in keeping your morale high. Without this girl, I would be lost in so many ways. She keeps me sane in a strict mum kinda way.

Firstly, I would like to thank you for this…


It’s funny because I wouldn’t call myself strong at all. The only way I remain sane and remain at a certain level of comfort is through a lot of pills and heat pads.


I look like I’m strong, and I would like to think I’m strong but realistically I do cry.



A lot.

I cry because I can’t do simple things, like run and walk up and down the stairs without my back and pelvis feeling like its rotting away.


I cry because I must rely to heavily on strong medication.


I cry because my timeline for having children is shortened.


However.


I remind myself that Endometrosis is just as common as Diabetes and the girl I just passed on the street is probably feeling the exact same pain whilst walking as I.


I remind myself that I am extremely lucky to have been diagnosed at such a young age and I’ve already had some of the Endometrosis removed.


I remind myself and there are tonnes of women out there that still haven’t been diagnosed or they have and have been told that their ovaries are so affected they’ve had them removed… yet their dream was to conceive a child naturally and they haven’t been able to do so.


I think I convince myself that being strong and resilient is healthier for you than to let this condition bet you. Although it does most of the time, my dreams and aspirations remain. I will reach them and achieve what I want in my life, even if that means having a couple days in bed and a week off work then that’s what I need to do.


I also couldn't have got through the last couple years without this little gem, that I'm very grateful to call my Boyfriend.

I also think education is a main factor in remaining resilient. Educating yourself on a condition you have enables you to prepare for the worst. I know that I have digestive endometrosis and my stage is a little bit more advanced than we previously thought. I know that I need some of my bowel removed. I know that the chances of it getting infected and having a successful reattachment is unlikely. I know that I have a high chance of living with a “bowel bag”. I know that I will need surgery after surgery and I know that I will have to have a menopause induced many times.


I know all this, and it gives me time to digest it all and come to terms with the condition.


Q – How did you know you had Endo?


The thing is, I didn’t know I had Endo. When I was going to the Doctor, I had no idea what it could be. I just knew that there was something wrong with my body. When I spoke to my friends and my mum, they all looked at me perplexed by the level of pain I was describing, this confirmed that this level of pain and my other symptoms were not ‘normal’ at all.

They say you know your body better than anyone else.


Even when I woke up from my surgery, I prayed that it wasn’t this condition, as my surgeon suggested that if it wasn’t Endo it could be a nerve condition affecting my back and my pelvis.

It wasn’t until my surgeon came around once the aesthetic wore off that she confirmed that it was indeed Endo and that I will be needing more surgery.


I think the main thing is…you know your body more than anyone else on the planet, if you feel that there is something wrong, or your body isn’t functioning as it usually would, you need to seek medical advice and keep seeking that advice until you receive a concrete diagnosis.


Q – How common is it and what treatment is available?


Endo is very common.


1 in 10 women have endometrosis.


Around 68% of women with endometrosis are initially misdiagnosed with another condition.


Over 176 million women suffer from this condition.


It is as common in women as diabetes is in both men and women.


The sad reality is that there isn’t a definite cure.


Medical professionals can recommend treatments that can reduce or halt the endometrosis from growing but there is no definite cure that can remove and stop endometrosis altogether.

  • Surgery: patients can have surgery to remove the effected organs and the endometrosis.

  • Hormone Treatment – Gonadotrophin-releasing hormone analogues: Patients can have hormone treatments that limit or stop the production of oestrogen. Hormone treatments have no effect on current adhesions and sticky areas of tissue, this treatment only reduces the chances of further endometrosis forming.

  • Pain Medication: Patients can be given anti-inflammatories or strong pain killers to reduce the pain. Its recorded through studies that Endometrosis long term pain is one of the worst levels of pain recorded.

  • Contraception: although this is commonly linked with birth control, it can also reduce Endometrosis. The Mirena Coil, the Contraceptive Pill and the Implant are all considered good forms of birth control and reduces both the pain and growth of endometrosis tissue.

  • Hysterectomy.

However, the only effective form of treatment is the full removal of the womb and the ovaries.

At the age of 19, I’ve already gone through the contraceptive route, surgical route, pain medication route and now I’m taking the hormone treatment route.


Each form of treatments is subjective to the patient and can have different effects. However, like I’ve said there is no research to suggest there is a definite cure for this disease.


Q – What are some of the symptoms that many people wouldn’t want to talk about?


I found that talking about blood in my stools a bit embarrassing. Especially when they want you to send some of your poo off for investigation.


I would say the sex talk with your GP and specialists is quite awks. Especially when your mum is in the room and so is your partner. I mean sex becomes extremely painful when you’re having a bad flare up and having to describe the pain to your GP can make you go red faced easily.

The cervical pain can be hard to talk about because you know that the next thing would be an examination, all dignity at that point is removed.


The IBS symptoms that come in hand in hand with Endo can be another touchy subject as many people find IBS embarrassing. Especially if the person is very conservative and posh.


100% PERIOD TALK. MEN HATE THAT.


These are most of the questions asked round into a couple otherwise this blog would be forever long, and I would be more hated as a blogger than what I already am.


If you do have any more questions that are different to these and I will happily to write a part two.


If anyone needs a friend to talk to about anything, either catch me on my social media or send me an email. I would love to hear from you.


Remember if you can empathise with any of this then please go to your GP.


That’s it for now!


Be happy and healthy x



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