10 Things that every Endometriosis sufferer needs!

Hi everyone!

So I'm back after a LOOOOONNNNNNNNNNNNNGGGG break from blogging! In all honesty, since my last operation, I've felt really deflated and down so hadn't attempted to post anything.

I wanted to do a post on 10 Things that every Endometriosis sufferer needs! These are just things that have personally helped myself or other sufferers that I know of! Feel free to message me any of your own tips or tricks that have helped you! The more the better!



#1. A comfortable bed.



Any chronic illness sufferer will tell you that having a comfortable bed or place to sleep will make all the difference. People suffering from a chronic illness often have a compromised immune system which means that the body takes longer and needs more energy to heal and repair itself. This often leads to a lack of energy and chronic fatigue. Having somewhere comfortable to lie down and rest will allow your body to relax and sleep will aid in the healing process as most of the body's repair work takes place during sleep. Not to mention that being comfortable will make any pain you're experiencing slightly more endurable. It's always helpful to have a selection of comfortable pillows to experience maximum comfort and aid restful sleep.


#2. A hot water bottle.



I can hand on heart say that I love my hot water bottle and it's my best friend. A hot water bottle is a inexpensive way to help make your pain more bearable. They're often very cheap to buy and you are able to take them with you wherever you go. The heat will help to make cramps less painful and the warmth in general is very comforting.



#3. A heat mat/electric blanket.


Similar to the hot water bottle, an electric blanket is perfect for people with chronic pain. Working in the same way that a hot water bottle would, a electric blanket will help soothe any aches or pains and also help your body to relax whilst in bed. Having that direct heat at the touch of a button really is very reassuring and I always feel more comfortable when I have an electric blanket on. These can be bought at most shops and home-ware stores.


#4. Strong pain medication.

Any Spoonie or Endobabe know's that STRONG pain medication really is going to be in your go to kit. There are many over the counter painkillers that will help with mild pain such as Paracetamol or Ibuprofen, which is helpful in reducing inflammation (one of the main symptoms of Endometriosis. Often, or atleast in my personal experience, neither of those particularly make a dent on the pain I experience. I find that for everyday to severe pain the strongest Co-Codamol is helpful as is Codeine- which can be prescribed by your GP or Doctor. Tramadol has also been helpful although both Codeine and Tramadol are not advised to be taken on a regular basis due their addictive qualities.


#5. The use of a bathtub.
              

Again, similar to the hot water bottle and electric blanket, the ability to lie in a bath of warm water will help to relax any aching muscles and soothe any inflammation and cramps you may have. There are many different kinds of bubble baths that are specifically for tired or aching muscles or inflammation. My particular favourites are the Radox Muscle soaks and also Deep Heat's bath foam which has warming properties which again help in soothing tired and aching joints. Another product which might offer some relief is Epsom Salts. These can be purchased from most stores or via the internet. They are particularly good in helping to reduce inflammation and help calm tired limbs.


#6. Comfortable Pyjamas.

 

In addition to having a comfortable bed and pillows, it's also important to sleep in something comfortable and non--restricting. I often find that oversized t-shirts are very comfortable, and also loose fitting elasticated waist pyjama bottoms which don't restrict too much movement and will also expand if you are experiencing any swelling or bloating, which will in turn make it less uncomfortable for you. I have a favourite pair of oversized man cotton pyjamas. They are made of very thin breathable cotton- with a button up top and elasticated waistband bottoms. These are perfect for when I am feeling particularly bloated or sore. I bought mine from the supermarket ASDA for around £6.00 which is an absolute bargain!



 
#7. Endless supply of pants.

This one is something I think most Endometriosis sufferers can relate to. The problem of going through several million pairs of underwear due to the unpredictable nature of the bleeding that occurs due to Endometriosis is one I know all too well. I'm convinced that I have probably bought several thousand pairs of pants in my lifetime, which is quite sad in itself really but is necessary. I try to keep at least one spare pair of underwear on me in my handbag or bag whenever I know I'm leaving the house, on the off chance that I'm caught off guard and need to change my underwear pronto!


#8. A constant stock of suitable Sanitary towels, tampons or products.

There is nothing worse than the dread and panic you experience when you have realised you have started to bleed and you have no access to any sanitary products. I try as often as possible to stock up on sanitary towels which I will also keep in my handbags, overnight bags, and all over my house. Whilst it may be a little awkward to carry them around in public, it's definitely better to have them on you rather than not.


#9. Trusty sweatpants/onesie/tracksuit.



Similar to the comfortable pyjamas, I strongly advise any sufferer to purchase a good pair of elasticated waist trousers, such as sweatpants. I also have several different 'Onesie's' which are perfect for those days where you are tired and nothing seems to fit without feeling like a sausage about to burst from it's skin. Another alternative is a nice pair of elasticated jeans, leggings or ali ba-ba trousers which are fantastic to wear and very comfortable if you are experiencing cramps. The loose fabric is gentle on sore legs and swollen tummies.


#10. A understanding friend or relative to vent to.



This is probably one of the most important things that an Endometriosis sufferer needs. It's amazing how disabling this disease can be and you can feel very isolated and alone. It's very important to have atleast one person that you are able to talk to freely about your condition/s. Being able to vent mentally will help relieve stress and tension and will overall help to lift your spirits. I've found it especially helpful to speak to other sufferers as these tend to be the most supportive kind of people to speak to as they can relate. There re quite a few different ways you can get in touch with people experiencing Endometriosis these days with the ever expanding of social networks. I have found the website www.healthunlocked.com and www.myendometriosisteam.com particularly helpful as-well as Instagram and more recently facebook.  These are a great way to share your thoughts, fears, stories and tips with other sufferers and I am always overwhelmed by the never ending love and support by my fellow Endosisters. Remember that although this disease is incredibly difficult to manage- there are people out there who can completely relate and appreciate your struggles, not to mention its a brilliant way to make life long friends. Some of the most beautiful women I have met through Endometriosis has been through these networks so it's highly recommended.


Hopefully you have found some of these suggestions helpful! Again these are personally things that have helped me and are in no way meant to be medical or professional advice. I speak only as an Endometriosis sufferer myself.

Feel free to comment, share or email me any tips or tricks you have found to be helpful!


Hoping everyone is having a lovely pain free day and weekend!

Love always,

The Endo Artist

x

First post in FOREVER! Update following Surgery no.3!

Hi everyone!

So this is my first post in MONTHS!

I know! I'm so sorry I haven't updated in so long and hope everyone is doing well!

I've been having an absolute whirlwind at the moment with my personal life so it's been completely hectic, especially since my last Laparoscopy/removal of Endometriosis surgery which I had done on the 13th of January this year.

I've been really up and down in myself over the past couple of months since my surgery, especially with my depression which also resulted in me moving back home to live with my mum and the breakdown of my last relationship! But I'm still surviving! I'm still going and determined to move on into a much better place.

As it's ENDOMETRIOSIS AWARENESS MONTH I just HAD to post!

So... what's happened since my surgery?

WELL,

I had my surgery which took several hours (much longer than I expected)...I went under anaesthetic around 2.30pm and didn't get out of recovery til around 8.30/9pm at night. During the surgery I had complications with a bleed, which resulted in a haematoma which had spread across both my left and right wounds across my abdomen. To say it was agony, was an understatement. I'd been prepared for pain, discomfort and sleepless nights, but nothing could quite prepare me for some of the complications I had in the first few weeks of recovery. I don't think it helped that during the whole of my recovery I was constantly on my feet, under a lot of emotional and physical stress and was unable to sleep which just added to the over-all feeling of pure hell.

A week or two following my surgery, I had to move out of the house I was renting and into the spare room at my mum's house which put alot of physical stress on my wounds and made everything insanely painful. I don't advise anyone to move heavy furniture and a house full of belongings.... post surgery. Haha! From what I can remember (I was told post anaesthetic so it's hazy) They had found and removed more Endometriosis that had spread to my uteral sections.

I had a post op follow up consultation at the end of last month, which due to me being a complete incompetent idiot and mixing my days up, I missed and am still trying to reschedule so that I can see my specialist to get a better insight into what happened during my surgery and what the best step forward is.

Since my surgery, my pelvic pain has been worse than ever, it seems that I'm fighting a losing battle sometimes, that it's completely pointless in trying to fight against something which seems so destructive.... I think for me personally this will be the last surgery I will have for years if I can help it. I don't feel like this is the best form of action anymore and I know extensive surgeries will only add to my scar tissue and adhesions and make things worse.

I was hoping for some relief similar to my experience after my last surgery for the removal of Endometriosis but this seems to be different this time around and I guess that's something that us unlucky ladies have to accept can happen. I think it's so easy for us to cling and hold to anything that we hope will bring us some relief from the pain and the symptoms, but it doesn't always mean that this will be the case.

My stitches have recently dissolved (waheey) although i'm still looking like Frankenstein's bride, i'm getting used to my unsightly 8 scars.

Where do I go from here?

Right now, I'm not too sure. I'm due to go for more tests on my bladder to investigate further what is causing me such problems, although in all honesty, i'm not overly hopeful that I'll get any answers. I can hope though. I've decided to start back on Diannette/Co-Cyprindol due to my PCOS with my skin, weight and hair raging out of control and transforming me into a pubescent version of my 15 year old self.....not cool. So i'm hoping this will help with the symptoms of my PCOS.

As for my endo, i'm taking every day as it comes. I'm grateful for every pain free moment that I get- although these are few and far between but i'm hoping that eventually I will get some relief and for now I am popping painkillers like a lunatic. For now I'm going to try to concentrate on finishing my Fine Art degree as best as I can despite everything.


As it's Endometriosis Awareness Month, i'll be posting as often as I can with facts, memes, articles and links that will help give insight into this disease and how you can support anyone who you may know who suffers from this shit storm.

For now though,

Sending all my love Endo Sisters, you are all so increidbly brave and beautiful.

Love,

The Endo Artist.

x

If I offend you......

Hi everyone!

Hope  you're all having a pain free day!

It's recently come to my attention that someone had made a remark in regards to my blog/facebook/instagram and was offended by me talking openly about my experiences with PCOS and Endometriosis and my talking about periods...

First thing first, WELCOME TO THE 21ST CENTURY! 
Where people and women have freedom of speech!

Secondly, if what I write about or discuss offends you; YOU DON'T HAVE TO READ IT. 

I've stated before in my other posts as to why I chose to be so open about my experiences and I'll reiterate for anyone who missed it the first time around. I WRITE FOR AWARENESS. I write for ME. I write for every single woman or girl who is sitting alone feeling ashamed or embarrassed or afraid. For those who feel they can't speak up about what they have to endure, based upon this idea that it's not okay to talk about periods.

IT IS OKAY.

It's not taboo anymore, it's a natural part of virtually every woman's life, it's part of a process that allows us incredible beings to continue creating life. If it makes you uncomfortable you have the option to not read. That's completely your choice, however do not discriminate against someone who has mustered the courage to share how they feel and what they have to deal with on a daily, monthly and yearly basis. 

YES, I BLEED OUT OF MY VAGINA... AND?
How does this affect you? The thing's that women/people suffer as a result of any menstrual related condition or in fact ANY condition can be terrible, painful, frightening and ultimately life dominating and NO-ONE should be made to feel ashamed because they want to help or inspire others.

The more we know about the way our bodies work and these illnesses themselves, the better. It helps us to advance not just medically, but mentally in terms of coping daily. It's hard, it's tough and to an extent it can be grotesque but who says we have to be ashamed? It's isolating enough experiencing the effects of these kinds of thing so why should I isolate myself further just so that you feel comfortable. If you find yourself questioning why I do this, then ultimately that's something you need to address. Why does it make you uncomfortable? Who are you to say what is right and wrong?

NEVER BE ASHAMED Endosisters/Polycysters/ Ladies.
WE ARE TOUGH, STRONG, AMAZING BEINGS and no easily offended moron will change that!

Sending lots of love as always,

The Endo Artist

X

 
 

I'm back.... barely.

So, as some of you may have realised, i've not posted for quite sometime.

There's been a few reasons for this.

Mainly, i've been having such an awful time with my Endometriosis that i've found it virtually impossible to concentrate on anything else and secondly, i've been feeling so low in myself both mentally and physically that i've been unable to cope.

Most of the time i'm able to hold myself together so that I look like a normal functioning human being but i've become so tired and drained lately, trying to ride out symptoms that don't ever fade and cope with the mental strain that my conditions put upon me. 

I recently, (and rather stupidly may I add) made an attempt upon my own life a couple of weeks ago. The stress of everything felt too much, like a thousand bricks on top of me, crushing the life from me. I am so tired, waiting for an operation date that seems like it will never come, just in the hope to get some relief.

My chronic fatigue is worse than ever and never seems to lessen, no amount of sleep makes me feel any more refreshed. My limbs are heavy, my eyelids heavier. My bladder burns and stings and stabs in ways I never thought possible, constantly making relieving myself toilet wise (something which sound be normal) an absolute ordeal. Pelvic pain haunts me incessantly, day and night and all I can seem to do is stand there, gawping like a great fish out of water, gasping for breath, hoping that with the next intake of breath my pain will fade. It doesn't.

Since coming off co-cyprindol 

/dianette (my last pill for my Polycystic Ovarian Syndrome) that I was on for almost 10 years, I've felt like i've been sliding down a very long steep hill. My hair has begun to fall out again in clumps and strands all day and my skin seems to be thinking that i'm a teenager again- something which i dread as I was put on dianette to try to control my severe acne which later resulted in me going onto a 6 month course of ro-accutane. I've not had a period in  2 months now which i'm sure is due to the stopping of dianette and I have no idea when to expect the next wave of week long fresh hell. I'm so exhausted, all of my tablets make me tired, and then i'm tired anyway due to chronic fatigue and having restless disturbed sleep.

I'm supposed to be starting the pill Yasmin back to back for 3 months at a time to see if it makes a difference in regards to my Endometriosis. I'm not holding my breath though. 

University feels like an ocean ready to swallow me whole as I fight just to even produce anything of value. This semester/year I'm focusing my work on my experiences with PCOS and Endometriosis. I'm hoping to share my story, inner feelings and thoughts whilst simultaneously raising awareness and making people aware fo the stigma that is attached to people suffering from invisible illnesses. My conditions don't define me, but they are a huge part of my life which cannot be ignored so why not draw from them and hopefully create a positive out of a negative?

I'm due to have a pre-op assessment over the telephone (new system i'm guessing) but after calling several numbers today have found out that despite this- i can't expect my operation in the next 4 weeks or so... so who knows how long before i'll get some help? I've waited another two years I guess so whats another couple of months? Of course this will take me to around christmas time- which is typically my luck but I am absolutely desperate to get any relief. I can't imagine my life continuing like this for much longer with no respite from the pain and fatigue, however i'm still here...barely...holding on.

Sending love to all of my incredibly strong and supportive Endosisters, Polycyster's and spoonie warriors out there.

Love always,

The Endo Artist.

x

Endometriosis/PCOS and the effects on family, relationships and friendships.

Hi everyone!

Sorry for my lack of blogposts!  I've been quite busy over the past week or so!

My endometriosis had been raging like a forest fire and I've been suffering I tell you! I'm feeling a little better though and wanted to write a post about Endometriosis/PCOS and the effects of having these diseases on the people who are closest to us.

Anyone suffering from Endometriosis/Polycystic Ovarian Syndrome/Any chronic illness knows how much of a daily struggle it can be to handle these terrible diseases and to handle the life changing symptoms. It's often incredibly hard to process how difficult these can make our lives that once were normal or simple.

I often find myself remembering back to a time when Endo didn't dominate my life. When pain was manageable, I had plenty of friends and my relationships and bond with my family was stronger than ever. I remember being able to go out everyday, do normal things and not feel exhausted. We are obviously completely, almost totally dominated by these diseases but what effect do they have on those around us?

Friendships.

I'd always noticed that there are 2 types of friends, friends who care on the surface- that want to have someone to spend time with and go out with, who only care if you're available and barely acknowledge nevermind understand what you're going through and the friends who genuinely care but aren't quite sure how to be supportive or what to do or say.

Over the years I'd like to say I have had lots of friends, some closer than others. Many have dwindled out like a fire, most are now strangers- strangers who are completely estranged to me due to the change in my living habits because of my health.

Having these chronic illnesses restricts you in terms of friendships. You find yourself having to cancel most plans-if you managed to find a break from the pain to make any, but they can't understand why. It's so easy for someone who has never experienced constant virtually unrelenting pain to not understand how difficult the simplest of task become. Getting out of bed, getting dressed- finding something that fits you (bloating prevents most of my outfit choices on a daily basis) , managing your pain, washing/showering, even eating and getting about physically.  Some days are better than others but for those bad days you simply cannot go out/get out of bed and you need rest. Its not always easy for people to accept this and to recognise that it's not a reflection of them- that you don't want to not be able to stick to plans- but that you're just too sick and in pain to go anywhere. If you know a friend who suffers from any chronic condition then I can tell you that it would mean the absolute world to that person if you made plans with them that meant they didn't have to go out publicly. You old suggest a movie night or day, baking, cooking, watching TV shows, Netflix,  gaming. Anything- even just popping round for a chat and to see how they are. Just because they may not be able to 100% function outdoors it doesn't mean you can't still spend enjoyable time together!

Relationships

Relationships are pretty similar to friendships in the concept that it is very difficult for the none-sufferer to understand where the sufferer is coming from. Endometriosis, bladder and bowel complications, Chronic fatigue and constant pain is bound to not only take a physical toll but also a huge mental toll. Often with these conditions comes anxiety, stress and depression which can often make things much more complicated. Simple and natural things like intimacy become chaotic, anxious and painful events. What you must bear in mind is that it is completely out of our control. We wish we were able to do normal things like normal couples but that doesn't always mean it will be the case. Sex can become too painful, making you feel anxious and depressed and frustrated. We understand that it must be incredibly difficult for a partner of someone with chronic illnesses and we're more than aware that it can have a huge impact on you. Just know that we are trying with every fibre of our beings to do whatever we can to remain intimate- despite pain and anxiety. Again- the best way to deal with situations like this is to remember that it is not a reflection upon you but of ourselves and the way our bodies work. We feel frustrated and sad too. If sexual intimacy isn't possible, it's always an idea to suggest something else- a romantic movie night, massage, cooking for each other or simply cuddling up on the sofa or in bed. We're doing the best we can with what we've been dealt, it doesn't mean we don't love you and it certainly doesn't mean that we aren't interested in you sexually. It's just tricky. Be patient and try to be as supportive as possible. Make sure not to inforce a feeling of guilt upon your partner. Often we can end up feeling guilty, as though we are burdens because we cannot function normally all of the time.  Bear with us! We're a bumpy ride but we're worth it. (Because we're tough fierce amazing bitches).

Family

As I've mentioned before, I've always found the effect upon my family has been fairly mixed. Some don't understand the disease whatsoever, choosing to virtually not recognise it- which is understandable. And others can be sceptical about the symptoms of the disease in general. I've always felt that my family think I'm being overly dramatic when I try to explain how it all feels. I know it's not their fault  and I understand they are hard things to understand. Due to the nature of the illnesses and how personal they can be, it's hard to feel comfortable to tell people about them and it can also be equally as hard for people to ask or talk to you about it. My main advice if you are the family member of someone with a chronic illness is to be sympathetic. It's often very difficult for someone to explain how much pain and discomfort the are in. They look to you for their main source of support. Be patient and try to be empathetic, as I've said before, it's hard to appreciate just how much pain they may be in and how much of a daily struggle they have to keep up with normal life.

Having someone in your life who suffers from these conditions should not be a negative thing. I can understand that some people simply CANNOT understand, and that's okay too. These diseases are complicated. They come with several symptoms and the effect on the sufferer can be profound. Often it can completely change the way a person is. It doesn't mean that they don't love or care for you, it's just that they are trying very hard to deal with their own mental and physical issues. Please try to be a supportive as you can. It's okay to ask us questions, take the time to read up about the conditions- learn as much as you can, be gentle and kind- just because you haven't experienced something doesn't mean it doesn't exist or isn't happening to someone.

We understand that you too are affected. It's all about supporting each other.  No one should have to suffer alone.

Hope everyone is having a pain free day!

Sending lots of love, always.

The Endo Artist.

X

UPDATE! & Helium based laparoscopy?

Hi everyone!

Firstly I just wanted to say thankyou to everyone who's taken the time to read this blog or any of my posts! It means the absolute world that you've taken time out of your day to read what I have to say! The more people who learn about endometriosis and it's effects the better as it really does help to spread awareness and understanding!


So, after my last appointment with my consultant he's advised that after my current menstrual cycle has finished to start on a different contraceptive pill called YASMIN which is meant to have beneficial effects on sufferers of endometriosis. I'll be taking this back to back for 3 months at a time to limit my periods! I'm a little reluctant as I've been on Dianette/Co-cyprindol for over 9 years now so I'm a little anxious about the effects a new pill might have on my body! Yet at the same time I'm desperate to find something to help.

Last time I took my pills back to back I had constant bleeding and more pain and complications than ever!- but I'm trying to keep an open mind about yasmin. Maybe it could help? I'm currently on the waiting list for my next surgery which will hopefully be within the next few months! I'm just sitting tight and hoping that it will be before Christmas! 😦

I've recently been contacted by the research team at North Staffordshire University Hospital who are trying to get people to take part in having a helium based surgery for the removal of endometriosis rather than the standard laparoscopic procedure. I think it's so important for us sufferers to take part in these kind of things if we can! Ultimately it's to help find out more about the disease works and what are the best ways to treat it. It's daunting but it could be so helpful for so many women if it proves to be a better type of surgery!

I'm just waiting on a response as to wether I am eligible as due to my bladder complications it could mean that endometriosis has progressed passed the moderate boundary. I hope not! Although I can't understand all my urinary issues if not! Who knows. Only time (and surgery) will tell.

I'm trying my best to remain positive despite constant complications of endometriosis. I'm recovering from a kidney infection and am feeling overall very worn out and run down. Pelvic pain is constant. Ovary ache seems to chase me all day and my urinary problems are worse than ever! STILL! Stay positive right!

Hope everyone is okay and having a pain free day!

Sending lots of love!

The Endo Artist

X

Why I share my story.

It's come to my attention recently that not everyone who sees or reads what I post understands why I do it.

Firstly, yes I do share what is probably regarded as private or personal information or pictures but there is a REASON for why I do this. Too many women, or people in general are suffering in silence. We endure these horrible conditions and feel as though they are taboo because of the nature of them. Yes, these are conditions that affect my lady parts, big deal. There's a stigma attached to it that just isn't right. For a long time I didn't share what I was experiencing with anyone because I felt embarassed. There is strength in sharing. Yes it's personal, yes it's terrible but if only one other person reads my posts, or sees my pictures and feels as though they can relate or if it makes them feel a little bit better about themselves, then it's worth it.


Who says we can't talk about it? Who says it's not right to share our stories and journeys? People who feel uncomfortable about it and who cant understand it, thats who. As far as I'm concerned that's your problem, and is something you need to work on yourself. I refuse to be made to feel as though sharing my experiences is wrong.

The most comfort I've had from my hours scouring the Internet for information about my conditions has come from forums or blogs from amazing amazing people who are being incredibly brave and sharing their stories. We do this because we want to let people know IT'S OKAY. It's okay to be sick. It's okay to not be in control of your own body and you should never be ashamed of acknowledging that.

My loneliest days are the ones where I feel I can't express myself or how I feel or how my conditions make me feel. Most of these conditions, Endometriosis in particular is incredibly mis-understood. There's hardly any real understanding medically about how it works. All I know is it makes me feel terrible and I will not be made to feel as though sharing is taboo. It's not. Awareness is key. The more people that know about these conditions the better, not just for the people suffering from these illnesses, but for the people who love or know someone suffering from them too. Giving you a little glimpse into what it is like is meant to help you understand and empathise. All too often we are made to feel as though we have some sort of control over these things that ravage our bodies. The truth is we don't.  But we DO have power to say 'I'm fighting this'. We do have the power to let others know that it's okay to not be okay and hopefully it's providing a better insight into what it's like to live with these issues.

I'm proud to say I fight Endometriosis, Polycystic Ovarian Syndrome, Chronic fatigue, Depression and Overactive Bladder Syndrome on a daily basis. Ignoring what is happening to your body will only make you feel much worse and alone.

I don't feel completely alone anymore because I know there are so many inspirational and amazing people out there fighting with me! We're tough! And we take our negatives to try to make a positive: awareness, medical understanding, support networks.

So if my sharing makes you feel uncomfortable then that's something you need to address within yourself deep down because it will not prevent me from sharing my experiences or my story, and neither should it stop anyone else.


Sending lots of love,

The Endo Artist.

X