The pill

It's been a while..... and it's been a rough couple of months.
Following my last appointment I decided to go back on the pill to try and regulate my cycle. So as told I started the pill on the first day of my period. I was actually feeling pretty optimistic.
Except it's now day 15 and I'm still on my period, which if anything has been worse than normal.
I've been on pain relief almost every day and am so exhausted I won't need a costume at Halloween I already look like a zombie!
With only 6 days left of my pill before my break I can honestly say I am dreading it more than anything.
Will I even get a break in between?  Who knows but I have my fingers crossed.

Has anyone else had any problems with going on the pill?
I am hoping it's just because it's the first month.

Anyway rant over!

On the positive side I have seen alot more media coverage about endometriosis recently especially in the newspapers. Seems alot more are now willing to talk about it and the recognition is increasing. It's great seeing articles about others experiences especially those who have suffered in work due to it as I have myself. I really hope the increased awareness keeps going!

I must apologise I haven't been on my blog much recently as I don't have much to tell. I'm have my appointment next week so will hopefully have more to update by then.

I did have a bit of success with the wheat bag. The marks on my stomach from using a hot water bottle are starting to fade although I must admit I do still give in and use  it. I find the wheat bag doesn't hold the heat as long as my good old hot water bottle.

I would like to ask those of you who have had multiple surgeries for endo the time span on them. I'm now over a year since my second surgery and wondering what my options will be next week. Last time I was told they were reluctant to do surgery again so soon and to be honest I'm not sure I want to go through that again but ask me on a bad day and I will definitely take the surgery option!

Anyways back to watching nonsense tv hope everyone has a lovely and pain free weekend ☺

Just a short post to say I have finally received my next appointment letter!
Will be going back to see my gynaecologist at the end of August.  Still not sure what to expect this time, hoping there's now a miracle cure I haven't heard about yet!

I am trying a wheat bag tonight after a suggestion from the lovely Caro, so I am hoping to avoid making the skin on my belly worse! Thank you Caro! <3

Summer

well it's been a pretty busy summer so far, went away for ten days and was given norethisterone so I wouldn't have a period whilst away. Have to say it was great, admittedly I had a couple of days of pain but nothing compared to normal. Wish I'd been warned how bad it would be when I got home though. My period started 3 days after I returned as Id been told it would. The pain was horrendous though, made me feel so sick I barely ate for days. Not sure if this is normal after taking this drug but thought I'd share my experience. Saying that, I'd rather have that pain than have a period ruin another holiday.

In other news I am still waiting for my 6 week review appointment which should have been due at the end of May, but not expecting much as last one I was told just manage my symptoms as much as possible. Hopefully will hear soon though.

In my earlier posts I asked if anyone knows where the yellow ribbons can be bought, I am still looking if anyone has found anywhere?

Mid week

Well today seems an ok day other than tiredness not much pain which is a relief! 

Looking forward to a 3 day weekend this week and fingers crossed a pain free one, although should have had another appointment letter by now but no sign yet!

Just had a quick look at the petition I posted about yesterday, so far almost 8.5k supporters which is awesome but I'm still hoping for more!  Maybe other bloggers can post it too? 

On another note anyone have any alternative ideas for a hot water bottle? I already use a TENs machine but love my hot water bottle but have noticed im starting to burn my skin so trying and failing to use it so often, any help appreciated 😃

Petition

Hoping for as much help as possible with this please! Was shared with me on Facebook and I realise it currently only affects UK peeps but its a helping hand in giving us a voice. Please sign the following petition to help get endo recognised as a disability.  Most of know how it can impact our lives and our ability to hold down a job so please please please help sign it and share it lets get it seen!

https://www.change.org/p/david-cameron-mp-recognise-endometriosis-as-a-disability

Thank you all in advance!

Almost the weekend!

Well its been a long week! Seem to do nothing but work at the moment but saving for holidays so it's worth it! Planning a long weekend away with friends for summer, somewhere hot! Now I just need to hope for some miracle between now and then that stops this daily pain. I wouldn't say my pain is getting worse but it's definitely becoming more frequent. Seems like most days recently and I'm sure those of you suffering know how tiring it is.

But I am looking forward to summer so I'm trying not to let it get me down! Hope peeps are also planning nice things for summer!

Recipe

It's been a rough few days of unbearable pain so I've been trying to look for anything that could help. Found a recipe online and wondered if anyone has tried it?

ENDO - TEA
3 parts dandelion root,
1 part oregon grape root,
3 parts wild yam root,
1 part vitex (chaste berry),
2 parts burdock root,
1/2 part dong quai root,
2 parts pau d'arco bark.
Optional: sassafras, cinnamon, ginger and orange peel to taste.
Use four to six tablespoons of herb mixture per quart of water. Add herbs to cold water and bring to a slow simmer over low heat. Decoct for twenty minutes. Strain. Drink three to four cups daily. This formula is also very effective as a tincture.

Would love to know if it's effective.  I'm also trying to find a pre made blend but having no luck so far! If I can't find one I guess I will order the ingredients just no idea where to even start to order half of those ingredients!

Morning!

Had a really crappy night last night, pain kept me awake for most of it but I'm happy to say I found an amazing blog written by a lovely endo warrior! I have posted the link on my favourite links it's Girl + Endo. Some of the posts really made me smile so thank you to the brilliant owner for keeping me company through your blog on a rough night.
Thankfully it's Sunday so I intend to spend my day wrapped up in a blanket with my hot water bottle watching catch up TV. Have a lovely weekend everyone x

Been a while

Hiya folks,  been a while so thought I'd catch up! Been back to see my Gynaecologist and it's looking bleak. They won't operate again as it's within a year of last surgery so I'm limited to managing the symptoms for now.

Looking for a little help from those who have tried the injection or the coil. Please comment about your experience with either so I can try make a decision 😕

Once again it was suggested I get pregnant lol huge decision! And missing a vital part for that in no baby daddy around and I'm not about to go out asking for one!

Would love to hear from some other sufferers and how everyone is getting on whether good or bad please share.....

Better late than never!

So my next appointment finally came through its only four months late 😕 but I am happy. Not sure what I am expecting this time other than the same usual stuff wih no guarantee it will help but fingers crossed I can hope! Have a couple of weeks to wait but I am glad things seem to be moving again!

Another endo warrior!

So I found a blog yesterday that I love! After seeking permission here is the site:

www.live-life-endometriosis.squarespace.com

Katie has done a great job and has personally emailed me some advice and tips on alternative remedies which although some seem a little scary I am pretty excited to give them a try so thank you so much Katie!
I hope her blog continues and I look forward to keeping up with it!
If anyone gives any suggestions a try let me know how it goes!

Ribbons

Quick thought before I sleep.  Anyone know where I can find the yellow endo ribbons? Would like to hand these out to friends and family. Any help would be appreciated ☺

My Endo Diary: Endo March 2014: A Year On

The below is a post from myendodiaries.blogspot.co.uk which I shared to show support!



My Endo Diary: Endo March 2014: A Year On: One year ago today, the first ever March for Endometriosis was held in capital cities across the World. I am so grateful to have been a part...

Plans and help please!

This won't be a big post I'm really just looking for ideas on what people are planning for awareness month. I'm hoping to do something on the 27th/28th of this month and would love any ideas or suggestions anyone may have?
I'd also love to hear what others have been up to and any success stories!

Really want to start building this blog up so any other bloggers out there please drop me a comment so I can add you to my favourite links!

Let's get the awareness going!

I am also going to be working on setting up a page for alternative therapies so will be researching into that over the next few days. If anyone has any experience in this please let me know or any valuable sites I could take a look at. Thank you!

Endo Awareness 2015

If you can't make one of the marches in person you can register to participate virtually. Or you can help in other ways such as wearing a yellow ribbon or a sponsored silence etc to help raise money.
I'd love to hear what others are doing this month to raise awareness so please feel free to comment with your ideas or suggestions!
Hopefully this year will be bigger than last year and help towards research for those suffering in silence

Endo Awareness 2015

WHAT: The Worldwide EndoMarch is an endometriosis awareness march that takes place each year in dozens of cities around the world. The 2nd Annual Worldwide EndoMarch will take place on Saturday, March 28, 2015 (World Endometriosis Day), during which time healthcare professionals, endometriosis patients, and their loved ones will come together to march for a cure, for better care, and so future generations won’t have to.

WHEN: Saturday, March 28, 2015

WHERE: Worldwide! The march will take place in dozens of cities all over the world. To find a team near you, please just email us at info@endomarch.org.

WHERE, USA: In the USA, the two event locations are Washington, DC and Palo Alto, California. For preliminary event information, please click here. Group travel discounts will be announced soon.

WHO: Drs Camran, Farr , Ceana and Azadeh Nezhat are sponsors of the Worldwide EndoMarch&World Endometriosis Day. The staff members at Worldwide EndoMarch have recruited volunteers from all over the world to help make this happen.

WHY: Endometriosis is a cruel, crippling, and incurable disease that affects an estimated 1 in 8 women and girls. Yet, despite being so common, there is very little in the way of public awareness about the disease. Due to this lack of awareness in both the general public, as well as with medical professionals, it takes on average 6-10 years of unnecessary suffering and countless visits to doctor after doctor before patients receive a correct diagnosis. As a result, women and girls suffer in silence and risk losing their organs, their pregnancies, and their fertility. Women even lose their jobs, friends, and family support as a result of misunderstanding about this serious, yet invisible disease. The only way we will see improvement in these dismal statistics is if we come together as a community and march on the streets so that our voices will be heard..

HOW: We hope you’ll march with us to end endo now! There are many ways you can get involved:

Register To Attend The March

Register To Attend Virtually

 Other Ways To Get Involved

Sign Up For Updates

Follow us on Facebook

http://www.endomarch.org/bloggers-unite-campaign-for-endomarch-2015/

Apologies

Haven't been on for a few days had a pretty busy time recently with work and appointments.
Anyways my follow up appointment following surgery in July was due for December and I am still waiting!  I called mid January only to be told Iam on the waiting list. So 2 months later still no follow up appointment!  Is anyone else having these kinds of issues?

I'm also wondering if anyone has any suggestions for alternative treatments they can share?

My story

So I began my periods when I was 11 years old. Unfortunately, my Mum passed away the same year so my Dad was left to deal with all the 'girly stuff'.

Although I am close to my Dad I was always embarrassed to talk about periods and had nobody else to confide in when I was in pain and didn't know any different so I assumed it was normal.

Problems were noticed when I stayed at a friends house for a sleepover, I remember waking up burning hot thinking I was going to be sick, I got up and tried to make my way to the bathroom, after that I remember nothing.....

I woke up on the bathroom floor covered in blood with my friends mum attempting to cool me down and clean me up.

Once showered I was put back to bed with some pain relief and tea.

The next day when my Dad collected me he talked with my friends mum in another room and couple of days later I found myself at the Doctors.

The Doctors asked me what happened and after I told him all he said was 'if it happens again bring her back'.

For the next few years I was backwards and forwards to the doctors and eventually put on the pill at 15 following yet another event of flooding. Although the pill helped regulate it did nothing for the pain so I also tried other methods including HRT meds.

As I got older the symptoms got worse so I would wake in the night crying in pain or black out. Eventually I told my Doctor I would not leave his office until he referred me to a specialist. I had to wait months and have continuous tests before I finally got to see my gynaecologist!

 

 

By this time I was 28 years old.

I had my first laparoscopy and hysteroscopy within 6 months and was finally given the news it wasn't just bad period I have endometriosis. This was such a huge relief to finally know everything I'd been through wasn't normal.

After my op I was lucky to get 6 months relief before the symptoms started again. It took me a long time to be referred again.

Two years later I was back again for another laparoscopy and the endo was removed again. 

This time I wasn't discharged and told I would need to attend a follow up appointment 6 months later. Unfortunately my appointment is 4 months late and the symptoms are back along with iron and B12 anaemia.  Not much I can do now other than wait........

 

So that's my history, I would love to hear some of yours! But my main advice is if you are suffering please don't just accept it even if you have to demand to be referred. There is not enough awareness about this or how much it can affect your life so don't suffer in silence!

The beginning.....

After spending hours researching endometriosis I decided to try and put everything in one place to try and help those suffering along with me.

I hope to take you all through my own journey and add any further information I find under the next tab Endo: All you need to know.

I am happy for comments and stories whether successes or not and hope to raise awareness of this invisible disease affecting so many of us.