Monday, 25 September 2017

Advice on hearing those 3 words: ‘you have endometriosis'.

Image courtesy of https://endometriosisnews.com/2017/09/25/endometriosis-advice-about-hearing-those-words/

This week's Endometriosis News column is now live! You can have a read of it here and it's some advice for all you newly diagnosed 'sisters'. I hope it helps make you feel a little less lost!

I've also linked my column on to the tabs at the top of the page now so if you click on the 'Column' tab, it will take you straight to it!

I'd love it if you could head on over and have a little read!

S.

Saturday, 23 September 2017

Follow EMLWY!

Image courtesy of http://www.imgrum.org/media/1201715353955351019_1829082317

Did you know that there is a whole range of ways that you can follow EMLWY and keep up to date with all my posts?

If you click on any of the links on the left then you can follow me on all the usual platforms - Instagram, Facebook or Twitter, where I'll always keep you up to date if there is a new post out.

There is also a little box on the left under "Subscribe to EMLWY" where you can enter your email address and then my latest blog posts will be sent directly to your email inbox!

And, finally, there is also a little black "Bloglovin" box below all the above where you can follow all of your favourite blogs in one place, instead of having to visit them all separately.

So, you've got no excuses now! Come on over and say hello!

S.

Friday, 22 September 2017

Nexplanon implant: one month on.

I've had my implant in for a month now so I thought I'd give you a little update on it all.

When I had it put in to my arm, I had been on my period for two days already. My period was just it's normal self at first, but, the day after having the implant put in, it ramped up and became incredibly heavy. I'm talking the heaviest it's been in years and I was needing to change pads every half an hour because, sorry to be so blunt, but it was just pouring out of me. The next day it was still as heavy and that morning I almost passed out from it. I was actually sat on the toilet when I suddenly didn't feel right and got this horrible pounding in my ears. If I hadn't have gotten down on to the floor quickly, I would have gone. It was pretty scary. Although I didn't put two and two together at the time, it's no coincidence this happened only two days after starting a new treatment.

My period lasted two weeks and I was in just as much pain as usual. I had a one week break and then this month's period started early and I've been on that for over a week now. This month has been much easier (so far). The pain has been very bad still, on one night in particular it felt like I was having contractions as it was coming in waves, but the bleeding has been reasonably light and I haven't had any new, red blood. 

I'm going to give it another few months to see what happens with it and then have a think about going back to the doctors if I continue to bleed. The fact that I'm still in the same amount of pain as when my period is at it's heaviest but I'm actually having quite a light bleed, is a big concern.

Besides effecting my periods I've also noticed a few other things.

My moods have been terrible. The first 2 weeks were the worst as I felt up one minute and down the next. I was incredibly irritable and was snapping at everyone. That's settled a little now I think (maybe Danny would tell you differently!), but I am quite emotional and very sensitive still. I've felt very down over the last few weeks and have been crying a lot - every day in fact. I know it's to be expected because I've had this sudden rush of hormones put in to me, but it is quite hard to deal with when you've felt quite level headed for a good while now.

I've also been getting frequent headaches, a daily upset tummy, my acne is definitely worse already, my breasts are so tender I dread even my t shirt rubbing on them let alone letting my breastfeeding toddler near them, and my libido has completely gone out the window.

So, all in all, I'm just not feeling very good about myself right now. 


Oh, and the bruising! Oh, the bruising! It was so bad, I had people coming up to me while I've been out asking what I'd done! And to think the bandage was there to help reduce the bruising! I've popped a photo up above of it at it's worst which was about a week after it was 'implanted'. I've still got some bruising now but it looks more like a pale stain to my arm rather than a multicoloured gangrenous rotting mess!

I know that things should all settle down in time but I'm experiencing everything I didn't want to happen at the moment. It's such an odd feeling when you go from only having your own natural hormones in you to the rush of a hormonal treatment. I feel separate to myself, if that makes sense, and I really don't like it.

S.

Monday, 18 September 2017

Some exciting news: I'm a columnist!

Image courtesy of https://endometriosisnews.com/2017/09/18/endometriosis-my-life-with-you-introducing-column-by-shireen-hand/

So, I've been keeping something a little quiet from you all (not so quiet if you follow me on Instagram!), but I was contacted by an editor over at Endometriosis News last month and asked if I would be interested in some writing work with them and of course, I jumped at the chance! After submitting some of my work to them, I got the job and I now have my very own weekly column with them!... I'm absolutely over the moon!

My first column has gone live today so you can have a read of it here.

I'll pop the links up here on a weekly basis so you can have a read of the posts. I'm aiming for them to be a little different to the very personal posts I write over here at EMLWY and have a more generalised feel to them.

Endometriosis News is just one of many disease specific publications run by BioNews Services, a leading online health, science and research publication company, delivering daily, targeted news, information resources and social media content.

The Endometriosis News site is an excellent resource with news stories, social clips, information on endometriosis and other columns run by fellow bloggers and those who have experience with endometriosis, so please go on over and have a look and check out the other columnists and their sites.

I've linked everything in the Endometriosis Library at the top of the page, but will pop the links below also.

S.


BioNews Services

Endometriosis News

Endometriosis, My life With You - a Column by Shireen Hand

Living with Endo - a Column by Jessica Duffin

Jessica Duffin's website: This EndoLife

Hot Mess - a Column by Serena Lawrence

Serena Lawrence's website: Worship and Tribute

Dachshunds & Duvets - a Column by Jessie Madrigal-Fletcher

In This Together - a Column by Chris Robson

Spoons and Sunflowers - a Column by Kimberli Davino

Friday, 8 September 2017

Feedspot's Top 30 Endometriosis Blogs and Websites.

Image courtesy of Feedspot


I received an email today from Feedspot to say that EMLWY has made it on to their list of Top 30 Endometriosis Blogs and Websites and I'm really thrilled! It's ranked number 7 alongside some other brilliant endometriosis resources. You can view the list here, but all the other blogs and websites also feature in the Endometriosis Library which can be found at the top of the page.

S.

Tuesday, 22 August 2017

Nexplanon implant.


I mentioned on my "Consultations and progress" post that my new consultant wanted me to give the implant a try as the next treatment option for my endometriosis, even though my doctor didn't think it would help because of everything I've tried previously.

Well, I had it put in today...

I'd been super worried about having this. Not so much because of the pain or nerves over whether this treatment would help or not... Actually it was over something which might sound really superficial and silly. I'm really worried about the side effects and mainly whether this causes my acne to get bad again. I've just worked really hard over the last year or so to get my skin looking OK again and I really do not want it to look how it did before again. But also, it's this thing with having something in me that shouldn't be. I had exactly the same feelings about the Mirena coil. That feeling that I'm having to depend on someone else to choose whether to take it out or not if it doesn't work or something goes wrong. That feeling that I have zero control over this thing. 

There is this major overhanging doubt about it working also though. I've tried all manner of contraceptives and hormone treatments over the last 18 years and not a single one of them has worked. I mean, even the doctor doesn't think this will work... But, I have to try it don't I? I have to give everything a go, right? To me, it just seems like a big waste of time. Putting my body through more undue stress for what? Just another big "I told you so"?

The actual procedure was fine. The needle looked like a spear it was so big and I have to admit that I was a bit scared! My doctor explained that contraceptive wise I would be fully covered in 7 days though that's not the reason I'm having this. We also spoke about taking a progesterone pill alongside the implant if I get breakthrough bleeding and she is fully happy to try that but she wants to see how the implant is working for me first and then if I do try a pill alongside it then it will only be for a short time and not for the duration of the 3 years that I have the implant in for as again, she'd like to see how my body is responding to the implant.

I had to lie down on my back with my left arm (left arm as I'm right handed) bent out and upwards. She cleaned the area of my upper arm that the implant was being placed in and then she numbed it with a local anaesthetic. This was actually the painful part as she had to put quite a bit in to my arm and in a few places. Once that had taken effect, I couldn't feel her put the implant in - just a bit of pressure. It's been about 4 hours now and my arm is still numb!

She let me feel the implant but explained to me how some women like to fiddle around with it and that can lead to it moving but even the thought of that made my stomach turn and when I touched it, well, I don't think I'll be doing that again! It felt like a hard tube/rectangular shape below the skin, but yeah, it's all a bit too icky for me! You'd think after all the things I've been through with my health I would have a stomach of steel but nope! I think I'm getting more squeamish as I get older!



My arm is now wrapped up with a bandage and I have to keep it wrapped and out of water for at least 24 hours but preferably 48 hours if I can, so no showers for the next few days, only baths. The bandage is to prevent bruising more than anything else but as I bruise like a peach, I'm pretty sure it'll be pretty colourful under there.

So that's my update on it all for now. I've just, as always, got to see how it goes and it's up to me if I have any further medication if I can't deal with the bleeding. My appointment for the consultant came through for January 2018 which is just over 4 months away now so.... Let's see how this one goes.

S.

Wednesday, 9 August 2017

Scan.


I went in for my scan on Monday morning and if you follow me anywhere online, you may have seen me having a little rant about it because I just felt like it was a massive waste of time. 

First of all, I wasn't comfortable with the situation at all, as not only was the sonographer male, but there was also another man and a woman in the room and although the curtain was pulled across the door in case anyone walked in, it wasn't pulled across where the other people were sat. Not really the type of situation you want to be in when you are there to have a transvaginal scan!

The sonographer said he'd do a 'normal' ultrasound scan first and if he couldn't see anything on that he would do an internal scan - even though I was supposed to have an internal scan anyway. He had a look, pressed super hard (to the point where I was gripping on to the bed!) and then yeah, that was that. He said I'd get the results in a week. 

I was a bit confused so I asked him what he was looking for exactly/what was on the request form from my consultant (she had just said at my appointment on Thursday that she expected to see some smaller cysts so I assumed this scan was to check for larger cysts) and he said he was just having a look around to see if everything looked normal and that he couldn't see anything. He also said that my lining all looked normal. I asked if there were any cysts and he said no. He then said "you had endometriosis?", I kind of corrected him with my reply saying that "yes, I have got endometriosis" and he said he couldn't see any of that, as if to imply that it had magically cleared up! I mean, where's it going to have vanished to!?

I'm annoyed because I know from when we went through IVF how much shows up from a transvaginal scan and I know endometriosis doesn't show up on a normal ultrasound, so I feel like I've not only had a wasted trip to Leicester (since I could have had an ultrasound at a closer hospital) but also a whole weekend of worrying about an internal for nothing. 

I'm just hoping it's shown up enough that I don't have to go back in the next few weeks again for another one.

S.

Sunday, 6 August 2017

Consultations and progress.


So, when I wrote on EMLWY a few weeks ago, saying how I'd been referred on to the hospital again, I assumed that it would be months of waiting for an appointment... NOPE! 3 days later I received an appointment in the post for the following week! When did hospitals suddenly move their butts so fast!?

I had my appointment on Thursday 3rd August and my new consultant, Miss Potdar, (the Prof. has now retired) is the doctor we saw when we were referred on to the Subfertility Clinic back in 2013. She said she had remembered me before she even read through my notes because of how upset I had been when she saw us! I filled her in on what has happened since I last saw her (which is rather a lot) and we spoke about mine and Danny's plans for the future with regards to fertility and children and about my c-section. She was happy that the Naproxen I started taking a few months back seems to be helping. She then proposed a plan which involves starting at the 'easier' end of the scale...

I had mentioned how the doctor I saw a few months ago had suggested the implant to me and another doctor had said she didn't think it would help because of how I've reacted to other similar treatments in the past, so we spoke about that in a bit more detail. Miss Potdar thinks it's worth trying the implant. And to be fair, what have I got to lose? I did explain my concerns with it: how I didn't like the idea of something in me that I couldn't control, how bad an experience I'd had with the Mirena and how I hadn't planned to ever go back on to any pill/IUD form of contraceptive ever again, but it's the easiest option right now and if it doesn't work then it doesn't work. And it could always work, couldn't it!? Yeah, I'm as sceptical as the rest of you but, lets give it a go and see. So, I'm booked in to have an implant fitted on the 21st August and I may also have to take a progesterone pill on the side to counteract any breakthrough bleeding. I'd be lying if I said I wasn't nervous. My skin is pretty clear now, my weight is under control and I know roughly where I stand with my periods - I just hope it doesn't have a bad effect on any of that... Or my endo!

Following on from the implant, the next step to try, if that doesn't work out, is a different progesterone-only pill to the Cerazette I was on after having Hunter, but back to back this time around.

After that I would try Depo-provera, a contraceptive injection, for 3-6 months. This might be a bad option for my borderline-osteoporosis but we'll cover that when it comes to it.

And then, the final option would be surgery with the aim to remove my left fallopian tube since it's blocked and not of any use, to free up a little space on my bad side.

When my doctor referred me back to the hospital, she wrote in her letter about a hysterectomy but Miss Potdar thinks that this is too drastic an action to take, especially at my age and she thinks that removing my ovaries would have an adverse effect on the rest of my health. And above all, she said it might not even help! I know, right!? I've only been told the opposite since I was 21!! So that is the very final thing to try, when we've finally finally exhausted all other options. 


She wants me to go for an 'urgent clinical scan' so I'll be going in for that first thing tomorrow morning. I'm super nervous because it's an internal scan and they really hurt me. I'm not completely sure what they are looking for but she did talk about cysts and how she expects to see smaller cysts so I think this is to check for larger ones.

So, all in all, I think it went pretty well. My new consultant is really friendly and I feel very at ease with her. She seems to have a fresher outlook on endometriosis and I'd even go as far to say she understands it more than the Prof. ever seemed to. She was great when we saw her 4 years ago so when I knew it was her I would be seeing again, I had high hopes for some progess and that's exactly what we've made. Progress. We have a plan!

I see her again in December so here's to the next 4 months.

S.

Monday, 31 July 2017

My Story: Katie Awdas.


I started with what I now know to be endometriosis symptoms when I was 16. As this was 15 years ago, the doctors put me onto the combined pill as that dealt with my heavy periods. I came off the pill when I was 21 as I was concerned about news in the media about long term use of it. 6 months later, my periods stopped. I went to see the GP who did a pregnancy test (which was negative) and sent me for a scan to check for PCOS. 

Fast forward to being 26 and I was suffering with pain throughout the month. My periods were a nightmare, I'd be taking time off work every month as I needed to be in bed for the first 3 days of them. I woke up one morning and was in so much pain that I knew something had to happen. I could barely move. I rang 111 who suspected I was suffering an ectopic pregnancy. I ended up in A&E that afternoon. A&E did a pregnancy test and a urine dip and discovered I was suffering from a water infection (!) and sent me home with pain relief and antibiotics. I was back the next day as the pain was getting worse. They admitted me on the spot and referred me to a general surgeon. 

The general surgeon refused to refer me to gynae (even though his registrar wanted to) and decided it was my appendix (which an ultrasound had ruled out!) so I had an emergency appendectomy. Whilst recovering from that, my GP did a home visit with thrush treatment (because that's just what I needed at that point!) and said she suspected endometriosis. At this point I started to do some research about it.

I was then referred to gynae, who initially knocked me back! To cut a long story slightly shorter, I had a laparoscopy in August 2012 which diagnosed endometriosis and life as I knew it changed. In January 2013 I started on Prostap which put me into a temporary menopause. I've been in and out of the menopause ever since. 

I had my second laparoscopy in May 2014, my 3rd in November 2014 and my 4th in April 2014. I have a history of bowel adhesions which have damaged my ovaries quite severely. I am now infertile, endo has taken any chance of having children. Yet the battle does not stop. In July 2017, I was listed for my 5th laparoscopy this time with excision. 

I live each day as it comes, I've had 3 flare ups in the last 2 months, so something has to give. I've got my final placement coming up in September and I will need all of my strength for that! Surgery looks like its going to be in January, just as my degree comes to a conclusion... It's a good job I like a challenge! 



Thank you for sharing your story Katie.

If you would like to contact Katie, you can follow her on Twitter @katieatheart222.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.

S.

Sunday, 30 July 2017

Endometriosis isn't a competition.

Image courtesy of http://www.vitamin-ha.com/funny-pic-dump-24-pics/
I didn't want to ever have to write this sort of post, but, to be honest, I'm getting a bit fed up of getting trodden on, so now I feel like I have no other choice.

EMLWY might be a personal website but it's all about you ladies and endometriosis in general too. I do everything I can to share others stories, list others personal blog sites and resources and help with any fundraising where I can. For me, none of this has ever been about competition. There are much bigger blogs out there, much better Instagram accounts than mine - but so what? It's not about how many followers you have. The whole point of this is to raise awareness of endometriosis and get that word out in the world for people to question and learn about, is it not?

Unfortunately, some people don't seem to think that way.

One of my posts in particular seems to be 'taken' again and again and used as others own work. The post I'm referring to is my Celebrities with Endometriosis post. Don't get me wrong, as with any and everything on EMLWY, I want it to be shared. I want to get that knowledge out there. However, that's exactly why I spent hours writing that post. That's why I spent hours on the internet creating a one stop place with all that information - because it wasn't all in one place. The wording you've seen and read hasn't been copied and pasted. I've written that. I've put it all together. I'm the one who is constantly updating it with new people and information. No one else. Just little old me.

What I don't want is for it to be stolen and used as your own work - word for word, picture for picture - with no credit to EMLWY. And that's all you have to do: just give a little one word of credit. No one's going to suddenly stop following you and rush over to me. That's just silliness. It's about supporting this community and helping to spread the word. Not everyone relates to my blog, as I don't relate to every one else's. That's exactly why we need to support everyone though - to make everyone feel a little less alone.

I feel like I'm having to write this now because not only have I seen other blogs taking this post but there is one particular Instagram account which has a following much bigger than mine, that insists on doing this over and over again. I have contacted them and they have chosen to ignore me and still do it. I won't name and shame because I have no other issues with them. They are sharing information on endometriosis and I in no way want to stop that - but I do expect a little courtesy. I would never steal someone else's pictures, let alone a blog post, and not credit the person or place it came from. Even if you change the picture used, I still know it's been taken from EMLWY because, like I said, that information was never just in one place.

So, please, please continue to share information on endometriosis. Please continue to share the posts I and others write. But please don't steal. We all deserve support here, no matter how insignificant you might think we are in this world of endometriosis - we are all trying to make a difference.

Endometriosis isn't a competition.

S.
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