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
Thursday 27 August 2015
Friday 21 August 2015
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
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
Friday 7 August 2015
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
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
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