Photo to accompany previous Blog …
So a lil late to be blogging and totally off topic to what this blog should have been about (suppose to be follow up from hospital appt-will do that one soon)!
This blog is in regards to the past few days I have been experiencing and how I’m trying my best to keep positive and keep going on with normal activities and even adding on eg keeping myself occupied.
As I’m laying here now in agony swollen like I’m 9 months preggo it’s appearing to difficult to keep off my mind ….
Saturday night I haemorrhaged badly and worse I was out with new friends and old and at 26 going home ‘cos you bled through a heavy towel , underwear and shorts (tmi I know -apologies ) is rather embarrassing !
To the point where I actually I had to show my dear friend so she didn’t think I was lying – as you know how it can be some people have to see it to believe it .
Obviously she was concerned and made sure I got home safe stayed with me and my partner until I made the decision of staying home or going A&E.
Girls you know suffering with this how horrendous A&E can be they don’t take us seriously and they don’t know how to solve it which is mad as this is isn’t normal even know laying here numb yet the pressure coming from abdomen is insane.
Still what do I do ?!
Go GPs in the morning or wait it until A&E in the evening either way I’m not going to get heard – this has to stop !
No woman no matter how old should be going through this it isn’t normal !
Been a huge gap since my last blog ( apologies ) have had a lot going on and a lot changes personally and health wise.
I need to get back into blogging as forgot how releasing it can be and how it certainly can help others in same situation.
Where do I begin ?
Since my last blog I have changed hospitals slow progress ATM however have an appointment again in a couple of weeks so will see what happens .
I have moved from Queen Charlotte & Chelsea Hospital to St Mary’s in paddington ( yes where Prince George was born :D) .
My last visit at Queen Charlottes I had the coil inserted and still do against my wishes !
When I go back to St Mary’s they are removing it – I will kick and scream as I been in pain and intense pain since October like I said in previous blog I was reluctant to have it re inserted to start with and has been a thorn in my side ever since !
From what I can gather at my first appt at St Mary’s – adeno is more the issue than the endo I was advised to have the implanon inserted (implant) which to be honest I haven’t as I’m petrified of the side affects being as I react to so much already I can’t mentally and physically go through with it anymore after 15 years you do just feel like a guinea pig .
I am having the mirena (coil) removed and contemplating going cold turkey to see what happens as been pumped with so many hormones and even chemical menopauses with no results for so long and most of them just trigger what you are trying to keep at bay.
As well as telling me to try implanon they wanted to do ultrasounds which I done and boy they are still none the wiser 😦 all I got from it was that my lining is pretty much non existent which freaks me out as what hope do I have reproducing in the future am I really holding out for nothing ?
So again will get more information on my next appointment.
(Also another thing which concerned my I have cysts in my ovary (left side) yet all the pain starts from the right ?! )
I don’t want to ramble on in the first blog and don’t even know it makes sense !?
I need to get back on to the blogging horse !
Thank you to those who have been viewing my existing blogs means a lot xx
Apologies for not posting for a few months been busy balancing health with full time work and now have a new full time job where I can sit and rest alot more than usual !
Honestly sisters recommend you to get out of retail or standing jobs as I have found that im not as swollen daily as not applying pressure by being on my feet all day !
However I know its a hard battle as took me two years just don’t give up hope.
What’s been happening in terms of Endo & Adeno you might be wondering.. well where do I start?
Last blog I posted was in regards to MRI results and whats next in terms of treatment which was to continue with Decapeptyl injections and top of that have the mirena coil re-inserted and to take cerazzette daily.
As you can imagine was extremely anxious so my consultant gave me over a month to mull it over and visit her again with an answer.
The time came for me late October to visit her again was so nervous both parents also came with me this time as if I did agree to the mirena no way could I drive or take public transport after it as its not near to my home at all.
As you can probably see I still haven’t made a decision still haunted by what happened previously with the coil.
More importanly going a wee bit off subject before I was called in a young girl probably my age came out in tears and I just wanted to reach out to her as I know how she feels and it really broke my heart to the point where I was nearly in tears for her, then overheard my consultant saying to the nurses to start her on Decapeptly injections like me then my mum took the words out of my mouth by saying ‘She’s finally been heard’ .
Well yes she has however still makes me angry how all us girls have to suffer for 10+ years first!
After a few minutes my name is called we re capped and expressed my concerns as the Injections had also started to stop working after three months and I still had three more to go so you can only imagine my frustration!
As I was still hot flushing she didn’t have any concerns and told me to carry on for another four !! Great four more months of getting stabbed in the but-currently on my fifth so only two more to go woo!
Then the question came ‘Are we doing the mirena?’
I kid you not genuinely felt like time stood still as I still didn’t know, first of all im sure I said no then she talked me round so I agreed to go through with it. I had to give it another go what else do I have?!
So was sent back out whilst they prepped it all I was practically nearly in tears as hate pain and needles, I should be use to it all now though but no was petrified as first time I had coil inserted I was put under general this time I was going to be awake!
Bless my Dad waited until I was called back in then he went to get the car ready and my mum waited in the waiting area I was going to have her with me at first but for some reason I play up more when others are with me when im on my own I just get on with it.
Im totally dragging this out now and don’t want you all to start yawning!
All I can see is that was the most horrific experience I have been through three local injections up my hooha THREE!!!
You can only imagine the pain I was in during and after just wanted my bed and hot water bottle which I had been doing so well without as my tummy scarring had healed however that has now been unravelled as been bleeding and in pain daily and pains in parts that I have never experienced before so you can only imagine my frustration like im on decapeptyl injections every month , cerazzette pill daily and coil inside yet im still no better?!
Only benefit my hot flushes are pretty much non existent! !
Yesterday was my second visit with the new consultant – was so anxious considering how the first one went however this time wasn’t so bad.
She called me in and we recapped briefly on what we discussed on the first visit , I provided her with my food diary (as had to cut out wheat) she didn’t really look at it oh well yet she seemed more relaxed and less scary to me as I proved to her that I do want her help and understood that its a two way street as you have to help yourself also was hard and had a few slip ups but now I feel under control of it.
So that’s the good part which means bad part is coming not horrific bad just requires a lot of thinking and also learning and understanding something that is also wrong in my ‘rubbish womb’ (her words also) .
Following the MRI that I had done prior to this appointment the only thing they could detect was that I have also diffused Adenomyosis – this is very new to me and still don’t quite understand it so anyone reading this that has it feel free to comment 🙂
So I as well as bits coming away and floating around and sticking (Endometriosis) now have this to contend with which brings me on to the confused second bad news.
For the past nine weeks I have had three injections called Decapeptyl (GRNh ) spaced over four weeks had my third yesterday and as predicted I am to stay on these for at least 6 months so have three more to go and as some of you may know I am not being given HRT which sucks as these Hot Flushes are insane!
Apologies if this is really long , wrapping it up now I promise!
In regards to my next step as well as continuing with the injections for another four months they also want to re-insert the mirena coil and I’m to take Cerazzette daily also.
Yep all THREE at once – Injections to keep my cycles away as without the cycle ‘endo canny grow ‘ apparently – The coil to stop the Adeno giving me grief and the pill to balance it all out?!
Now to me this scares me so much !
Anyone else been on more than one hormone treatment at a time ? Would love to hear from you whether it’s a comment on here or tweet me : Endo_Doll .
Advice is much appreciated as i have been given two months to decide would have been done yesterday but really wasn’t comfortable as the past with the coil and the pill isn’t good , my body reacts to one hormone treatment let alone all three !
Scared and confused
Thank you for reading and hope its not all over the shop – my English is shocking 💋💛
Been awhile since I have blogged so apologies for that been slacking a lil now I’m back to full hours at work (dying) !
Still have decapeptyl in my system until end of next week I reckon so I hope there isn’t an awful come down or that I get all the side effects much more severe than I am already !!
As I CANNOT take these hot flushes anymore I never thought of how awful that could be and all I can think about is when I go through the real menopause have to do it all again 😦 at least I know at that I can have HRT or other meds to help cope with the symptoms / side effects as ATM I’m not allowed anything 😦
My consultant actually said I want you to hot flush / be sick etc – Thanks !!
However I am due to see her for the second time on the 27th of this month, (August) nervous !
As I was given a lot to do and change when I saw her last so I’m hoping I’ve done okay then I can get the help I need and want.
Can expand on this more in next weeks blog once I’ve seen her again.
One thing I can say minus the hot flushes etc – decapeptyl has stopped my cycle first ever hormone treatment to do that (really) however still experiencing pain in my lower abdomen and swellen is more lower at times the no wheat has stopped me looking as pregnant I will give it that but it hasn’t fixed me and the injection is just covering up the issue.
I do think as it has stopped my cycle I will be on decapeptyl for longer than I thought I would be so I’m hoping I will get HRT or something just to calm down the hot flushes etc as they are ruining my days and especially nights getting no sleep and the way they feel is not like a fever or high temp as you can feel it on the outside also this is internal and just ripples through you makes you wanna take your skin off !!
Not nice at all 😦
So ATM currently still no wheat and menopausal – next week I’m sure I will know more and future plans.
Sorry if this is jumbled – thank you for reading xxxx
Wow firstly 🙂 never thought I would get so many views on my blog super grateful to everyone that’s read it, was not expecting anyone to even read it to be honest so thank you to those who have means a lot to me!
I started the blog for many reasons firstly to raise awareness and to share my experience with Endometriosis as so many women don’t understand or haven’t heard of it themselves and to help other ladies with it.
Also I started it in hope that a family member (not that I wish this on anyone not even my worst enemy) would say that have or had issues with Endo themselves or other issues related to it so I can understand where it has come from sadly none have or maybe they do but don’t want to share which is totally not an issue as its taken me about 12 years to get this far so understand 🙂
The past few months have been my lowest point and couldn’t have got through them with out my family and Paul (my love) and literally a handful of friends (you know who you are) and of course the girlies on twitter, Instagram and Facebook (endodolls/endosisters) genuinely felt like the only girl in the world until I started moaning bout on social media then others related which is total blessing as didn’t feel so alone and I can also help others now that suffer too.
I feel like I’ve turned a corner lately getting on top of work again trying to be more sociable and active (as best as i can) as hate feeling like I have been of course I still have bad days I’m not fixed and I’ve gotta realise I’m not going to be fixed anytime soon so I’ve gotta keep my head up and try my best and I know I can achieve this with my Family, Paul’s family , my true Friends and Paul who has been super understanding and caring during a stressful time for the both of us and me being poorly on top doesn’t help !
Love you all & Thank you xxxxxxxxxxx
Ok totes a quick blog in regards to what happened to me on Thursday evening I believe the same day that I posted about one month no wheat and decapeptyl anyways…
I had undertaken my second decapeptyl injection that day and was already feeling down so I fancied something that I’ve not had in a very long time as got told to lay off wheat.
I made spaghetti with meatballs and garlic bread NOM
Was sooo good 🙂
However as soon as I stood up to take the plates out this happened…
I couldn’t believe how quickly I ballooned out and realised actually how quite flat my tum had been again my theory is that in my last lap/laser he has definitely irritated or damaged my bowel as I never had this issue before only swelled when bleeding.
So now trying super hard to lay off wheat as canny look like this all the time praying that they refer me to a bowel specialist ASAP to sort this out !
Since my last New consultant appointment in London at end of June(25.06.13-exactly one month ago) was advised to cut out wheat to ease the bloating (well to make it end) and was also given a GNrh injection called Decapeptyl 3mg.
The past month without wheat has been super hard as my word i love wheat even the taste its only when you start to wheat free from bread that you notice the difference as it just crumbles in your mouth- vile!!
I had to cut out bread, pasta, Maccy Ds my beloved maccyDs – people that know me know that i have one at least once a week can safely say i’m MaccyDs clean for a month now! whoo go me! ha..
Anyways back to business have been keeping a daily food diary since my appointment where i have been noting what i’ve been eating , exercises and also pain and bleeding scales. i believe this has helped as can present this to her when i see her next end of august-still quite far away!
Have to say tho i really don’t think wheat is the issue as believe me i have been dedicated in doing this not gonna lie have had two burger buns the past month due to the many family BBQ’s thanks to the ‘heat wave’ 🙂 and can see results everywhere minus the lower abdomen 😦 fitting into clothes has been difficult and have had to spend money i canny afford on clothing including work wear to make myself comfortable and confident as been lacking of late.
The past month on decapeptyl has been rather up and down at the beginning i had one emotional breakdown then felt great until the past week so ATM i currently have mixed feelings and not been on it for very long and had the second one done this afternoon as my consultant wants me to try it for 8 weeks which works out up until i see her next then will take the next steps.
Her goal for me being on an induced chemical menopause is to stop my cycle as if don’t have it i wont have the Endo issues apparently? however the past week i have been bleeding off and on and oh my the week before that the pain and swellen was unbearable absolute horrid and have terrible nausea with severe hot flushes sadly im not allowed any HRT to help with these yet and not sure when i even can 😦 which sucks as struggling and hate it as my body and mind atm is totally out my control im hoping how im feeling now is just the first injection wearing off and now the second one is in hopefully i will feel less clouded.. will keep you all posted..
Once again Thank you all for reading.. Mwah xxxx
This weeks blog is in regards to reported Celebs around the globe whom have suffered or suffering from Endometriosis.
What i’m hoping to achieve from posting this, is hoping that one day one of these celebs will come forward and represent Endometriosis as a whole and help raise awareness as we all know the public listen and research when celebs are involved.
Some people don’t see Endometriosis as a big deal as it can’t kill us or life threatening however in a way it is life threatening as it puts our lifes on hold daily career, personal and sociable i should know i’ve had one good day in over three months now and others are the same if not worse after surgery and before surgery as lets face it there is no cure and whatever we are given and treated with only ease symptoms and gives us more problems – it never goes away.
The following Celebs are from the UK :
Anna Friel – Actress
Annabel Croft – Tennis Player
Anthea Turner – Presenter
Emma Bunton – Spice Girls (singer)
Myleene Klass – Singer/Presenter
Louise Redknapp – Singer/Presenter
The following celebs are from the USA :
Marilyn Monroe – Legend/Actress
Whoopie Goldberg -Actress
Sharon Stone -Actress
Susan Sarandon – Actress
Julianne Hough – Actress/Singer
Dolly Parton – Legend/Singer
Cyndi Lauper – Singer
I know that there are probably heaps more however that’s all i know for now, can understand if some don’t want to talk about its a big deal, i have been suffering for about 12 years prior to this blog and finding all the Endo dolls/sisters online such a blessing and don’t feel alone in this anymore.
Hope this has been helpful and Thank you for reading 🙂