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.

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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.

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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

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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

Endo Update!

A brief little update!

After my last post some of you like me, may have been wondering what in God's name had gone on and why in my last gynecology appointment.

Well, after trying to contact my actual consultants secretary for almost 2 days! (Including sending a concerned email, leaving a voicemail and calling every few minutes for hours straight) I finally got through and managed to explain that my last appointment had been a complete confusing mind-fuck and that I was utterly desperate to have things cleared up.

I'd sent an email to my consultants secretary and also stumbled across his personal email online and forwarded a message along briefly explaining and asking if someone could get back to me. His secretary was very helpful and said she would pass the message along to him personally and ask him if it was possible for him to call me when he was back in his practice to clear things up. I was also sent a new follow up appointment (10 days time) where I can speak with him personally rather than another member of random gynecology staff (PRAISE THE LORD). 

I had a very strange experience in which my gyne actually called me to find out what had been said in my last appt and to apologise for any confusion. (Which was very helpful and really appreciated) I explained that I had been told conflicting information in regards to my previous diagnosis and medical history. The other doctor/registrar I had seen as a result of my consultant being too busy was (obviously uneducated in my actual medical history) and had just been literally spewing drivel and I did indeed have endometriosis and he apologised on his behalf for him just completely talking out of his arse.

I've been put on the waiting list for another laparoscopy. (My 3rd) so fingers crossed that I'm on the way to some however temporary, relief.

It just proves that whilst the NHS system is incredibly flawed, it can also equally redeem itself and unless you personally take responsibility and push and chase up things that you're unsure of, you're likely never to get the answers you want.

In future I am most definitely going to request copies of any documents in regards to my PCOS or my Endometriosis so that no matter what- when I go for consultations I am able to physically be on the same page as the person I'm speaking to!

I'm glad to have it all cleared up and very relieved that it was a mis-understanding and not an incorrect diagnosis for almost 2 years! PHEW!

I'm currently having a tough time with constant pelvic pain, phantom periods and bladder pain which is making me want to remain in a permenant fetal position and I'm wondering if there's any one else out there who experiences these symptoms?

I'd LOVE to hear some of your personal pcos/endometriosis or any chronic illness stories and journeys!


You can find me on instagram by searching 'avelvetcrowbar'
Or feel free to email me at: avelvetcrowbar@gmail.com

Hoping you all are having a pain free day and that you're staying fierce and strong
😊💛

We may have been dealt a shit card but it's upto US how we deal with it!

Love,

The (definitely) Endo Artist.

X

NHS Gynecology....what the f**k?

Tuesday I had my 'consultation' with my gynecology specialist. After waiting over an hour over my actual appointment time I was called. (Hey it's the NHS) Only it wasn't him, it turned out to be some (i'm presuming) trainee consultant acting on his behalf even though I had seen him actually in his clinic.

So first of all I was a little bewildered as to why I had another random person to speak to. He seemed friendly enough although he was foreign and had quite a strong accent so I struggled to understand him for most of the actual appointment.

I had to (as usual) explain everything from the start going back 10 years, explaining all my symptoms, surgeries and everything up until now. First annoyance was when I told him I had been diagnosed with Polycystic Ovarian Syndrome several years ago to which his response was " just because you have the cysts on your ovaries doesn't mean you have the syndrome" So straight away I was pretty taken back. I'm a million % certain I have PCOS as it was both diagnosed by laparoscopy and also by my GP as for years I had suffered with severe acne, weight gain, hirutism (excessive hair growth) heavy and painful periods and so on. I'd atually love it if it was simply the cysts on my ovaries and not the latter. That would of been fabulous. I brushed it off anyway after telling him that I had been diagnosed and also had the syndrome for years.

I was asked to rate my pelvic pain on a scale of 1-10 on a daily basis, not in relation to menstruating, and I gave a 9 and then I was asked to rate it based on the time of menstruating and gave a 10. He scribbled all this down. I tried to tell him calmly ( holding back tears) just how much of a dominant effect my pain has on my life at the moment; that it makes going to the toilet excruiating, sex is a distant notion far away on a horizon because i'd prefer to be bludgeoned to death that experience the amount of pain it induces. I told him the fatigue and pain was mind-numbing and it had had a strong impact on studying for my degree and my quality of life in general.

After listening to me he scribbled a little more only to excuse himself to "consult" with my actual gynecologist. He came back almost 5 minutes later with a little encyclopedia of medicines and their uses. I saw him instantly flip to the z's. I knew straight away he was going to suggest zoladex. I tried again rather pathetically (at this point feeling really disheartened) to tell him that I was reluctant to try tablets again for months on end in the hope that it might make a difference. I'd prefer surgery because it's more pro-active and actually makes a difference in regards to the pain I feel. (I was about 4 months pain free after my last surgery) He gave me a dubious look and began the "not advising surgery speech" because if they can- they'd rather fob you off on medication that doesn't help instead. It was at this point I burst into tears and told him I couldn't possibly entertain the idea of another 6 weeks with this pain nevermind 6 months.

Again he got up to go and "consult" with my consultant.
After about 10 minutes he came back again and sat down with his little book and then said I should try microgynon.

It was at this point I wanted to both sob hysterically and grab his shoulders and shake him violently.
I'VE BEEN ON A COMBINED CONTRACEPTIVE PILL FOR 9 FUCKING YEARS.
And if anything- it's done absolutely NOTHING.
 I just kind of sat there exasperated whilst he launched into his medical babble about my actual gynecologist trying to avoid surgery.

It was at this point that he said something that was an absolute mind-fuck. I'd spent most of the appointment trying to guess what he'd been saying or asking him to repeat himself or the question he was asking. I'd taken in my boyfriend ( I don't usually like taking anyone close to me into my appointments as I usually try to hide how bad I feel from them, that and it's super personal) and he said something along the lines of "the surgery didn't show/find any endometriosis" or thats what my boyfriend claims he said. I couldn't understand anything at this point as I was just trying to wipe my tears and not bawl like a lunatic. He excused himself AGAIN, to go and speak to my consultant and came back afterwards saying that they would put me for surgery if that's what I wanted.

During the time he was gone, my boyfriend turned to me and said- "what's he on about when he said about the surgery not showing endometriosis", instantly I was like.... "is that what he said?" I was completely and utterly baffled and convinced he'd said something along those lines but not actually that, am I going fucking mad?

After my last laparoscopy to diagnose and remove endometriosis 18 months ago, I was told both directly after my surgery I DID have endometriosis and also at my 6 week follow up appointment with my actual gynecologist (i'd taken my mum) he'd explained I did have endometriosis- showed me the surgery photographs of where it was found and removed (around my left ovary and the back of my womb) and told me that it was classed as a moderate case. You can imagine I was so relieved back then as I'd gotten a diagnosis and also a treatment.

Had I imagined all of this? Of course not. Where the fuck was this man getting his information from? He had kept looking at some documents he had up on the screen that I couldn't see for the life of me because I hadn't got my reading glasses on. After a quick physical examination and being given a surgery information handout and quickly ushererd out, I left absolutely confused as to what he'd said. I know I should of instantly queried it whilst I was there, but as I'd not properly heard what he had said I'd carried on talking about the next surgery. The past few days it's bugged me beyond belief. To the point where I've even been checking my medical notes and files which all have 'endometriosis' on them and explain that I had a diagnostic laparoscopy and the removal of endometriosis so what on earth. I've spent the past 2 days just completely baffled. If i'd been diagnosed how on earth could it be that this man was telling me that it hadn't been found? What on earth was going on? Had he got confused? Am i a raving lunatic who has imagined the whole thing? Or did he simply mean something else or was he talking about the surgery in the future that may not find any?

I'm so utterly confused and upset and just generally stressed as to why he said that- where he had his information from, why had i been told something different?

At this point I'm waiting for a date for my next surgery, but am unsure as to how I can actually check what had been said without having to have an appointment.

I don't know if anything similar has happened to anyone else but I'm now a very paranoid and confused lady. The NHS never fail to be a complete mind-fuck.

This is where I'm at now. I don't know if it's pointless to try to call his secretary as I have no idea if they can relay any information like that to me.

I'm just so totally confused.
It's things like this that really make me doubt the NHS.
Not only can they not even give you an appointment with your actual specialist despite waiting months and months just for the apppointment but then you get told completely conflicting information about the conditions you have.

UGH.


Love,

The Endo (Or maybe not?!?) Artist.

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