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My Endo Story

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EndoWarriror
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Female

Posts : 67
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Join date : 2016-08-24
Location : United Kingdom
Star sign : Scorpio
Chinese zodiac : Buffalo

My Endo Story

Post by EndoWarriror on Thu 25 Aug 2016, 14:05

I decided to share my story with you all, then maybe it could perhaps help others too, saying that I wanted to start a blog but then I didn't know how to come up with posts daily for it!  Anyhow I want to spread awareness and may sound daft but Endometriosis brought me here to Krazy Kats.  I got googling one night when I couldn't sleep looking for a women's online forum of some sort so I could chat to other women!

Moving on...Here's my Endometriosis Story....

I'm 30 years old, Married Mother to three children (2 boys and 1 girl).  I'm from the United Kingdom. 

My Endometriosis diagnosis came on 27th August 2015 (So nearly a year in already!) Previous to my diagnosis my periods had been regular, painful as to be expected (before childbirth) however after my first born in May 2008 my periods got heavier, I put it down to having a child (I was none the wiser!) then I went onto have my second (Sept 2009)and they got heavier and a lot more painful at the time I put it to the back of my mind, as I'd fled domestic violence in the March 2009 from my two eldest kids father, I was under so much stress and I just as the first child put it to the back of my mind. Then I met my husband at 7 months pregnant with my second child, and my life started to settle down into a nice steady pattern, I was happy for the first time in months, I had a daughter and a son on the way and a new boyfriend (Yes people thought it wasn't ideal, me pregnant with someone else's kids and seeing another bloke, but tough I was happy!) roll on Christmas 2009 and he noticed how much pain I was in and suggested I go see the GP, when I explained how much pain I was in he just shrugged it off, told me it was just period pains and to take paracetamol and get on with it. I just grinned and bared it until 2015 I couldn't take anymore.

2015 I started having pains not just during my period but two weeks before, during and two weeks after, I started to then start having pains during sexual intercourse (something was wrong!?!) My now husband (Married in March 2015) kept getting upset, saying he hated hurting me and that he couldn't understand why, had it had something to do with my final pregnancy ie our son, as that was my final baby in 2011 and it was a fast delivery! So I went to another doctor and another doctor until someone actually referred me to the hospital.

In June 2015 I had an ultrasound and the lovely lady asked me questions when did it hurt, how, did anything help and I told her it was starting to affect, my sex life, I know it sounded daft but we had only been married a few months and I felt bad towards my husband as previously we had a very active sex life and I know sex isn't everything but it's apart of a healthy relationship right? She totally understood and for the first time in years I felt I was being listened too, she told me she would put in the referral notes back to the GP that she wanted me to see a Gynaecologist. As I'd explained that my doctor kept putting me on pills, injections, implants, coils and nothing worked if anything made things more painful and worst.

In July 2015 I seen a Gynaecologist who assessed my file and offered me a Laparoscopy and I said I'd think about it and run it pass the husband, yes I do everything with him always have done and always will and I went ahead with it on 27th August 2015 which confirmed I had Endometriosis and that they had lasered it away! But in the process of it they had punctured my stomach so had to stay in hospital for 3 days. The doctor that I had explained that it could come back but suggested I either go on on pills, injections, implants or the coil and when I explained that they don't work for me she told me there isn't else I could do!

No offence to her, and please don't think I'm being racist because I'm not, she was a african doctor and I couldn't understand a word what she was saying, she wasn't the consultant I'd seen in July as he was ill. I asked to speak to another doctor who again wasn't english, the nurses who were english assured me she knew what she was talking about and I was like yes but I don't understand it let alone her, so I felt all alone.  The follow up appointment was for a few months down the line and it was for a 9.30am appointment in a different hospital to where I had the operation and another 40 miles down the road, yet I had no way of getting there, due to the husband who had no more annual leave, I don't drive and I had the kids to get to school.

Roll on 12 months and my periods have been lighter, less painful and manageable up until the past 3 months, 3 months ago they were heavier than normal lasting 8-9 days, last month I bled for 8 days then stopped then two days later when I wiped I found strings of dark black blood but only when I wiped.

Now on Monday this week I have come on and in excruciating pain, heavy bleeding and this weekend all I've done is curl up in a ball, taking paracetamol to help ease the fever, cry my eyes out and just felt low as hell!  I have bled Monday and then Tuesday, Wednesday and today not a lot of blood if at all any! So confused.

So have been doing some research and people have suggested try the gluten free diet, peppermint tea (which I'm drinking right now while I type this out!) but just at a loss!

I can't see a doctor till September ie when the kids go back to school, considering the husband is at work and the kids are still off on school holidays, I have no one local to watch them while I would be at the doctors due to the fact everytime I tell them to be quiet while I'm chatting to the GP/Nurse they are constantly jumping round, touching things or jumping on the scales in the room, and I truly cannot concentrate!

So this is something I can't get rid of, got this thing for life, yes there is option of surgery again, but it can come back and others who have said there onto their 6th laparoscopy and yet the endo still comes back!  I wish we could find a cure for this!

Anyhow that's my story and I hope I haven't bored you, but also hope maybe I can help someone else or someone's friend/daughter etc from reading this x
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Kitkat
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Re: My Endo Story

Post by Kitkat on Thu 25 Aug 2016, 15:56

@EndoWarriror wrote:I decided to share my story with you all, then maybe it could perhaps help others too, saying that I wanted to start a blog but then I didn't know how to come up with posts daily for it!  Anyhow I want to spread awareness and may sound daft but Endometriosis brought me here to Krazy Kats.  I got googling one night when I couldn't sleep looking for a women's online forum of some sort so I could chat to other women!

Thank you for sharing your story with us, EndoWarriror.  My goodness, what a story it is too!
I do firmly believe that when you find yourself in a situation of being afflicted with a life-changing health issue and having to deal with all the consequential trauma, anxiety and obstacles and challenges that go with it, it can be most therapeutic - and definitely advisable - to keep a journal, write it all down, and even better to write about it in a place which allows interaction from others who may well find themselves in a similar situation, or upon reading your experience, may well be more prepared for such situation if it is to happen to them in the future.
I started my own journal ( https://krazykats.forumotion.co.uk/t14-kitkat-s-kk-blog ) after my first cancer diagnosis (back in 2004), partly for therapeutic reasons, but also having come up against so many obstacles at the time (administrative mistakes within hospitals etc), I wanted to keep a diary for my own piece of mind and also to hopefully inform and prepare others for the sort of things they might come up against if they were to find themselves (or friends or family) in a similar sort of situation.

My journal over the years has really been a personal life/sanity-saver in so many ways - but added to that, it has brought new friends into my life, many of whom now remain very dear friends both having since met with in 'real life', and also some who although we've never met in person, our online friendships and chats have been beneficial to each of us in so many ways.

I hope your journal will be ongoing here, and that it will not only be a therapeutic exercise for yourself, but may also be beneficial to others along the way.

I also wish for you some relief and betterment with your current health problems.  This little place is open 24/7 and you will always find someone here to talk/cry/moan with or someone to simply 'listen' and sympathize - and know that they care. x

It is also so important, I think, for anyone going through horrible ordeals of any kind, whether health-related or not - to realise that they are not alone in their plight.
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EndoWarriror
Just can't stay away
Just can't stay away

Female

Posts : 67
Points : 845
Join date : 2016-08-24
Location : United Kingdom
Star sign : Scorpio
Chinese zodiac : Buffalo

Re: My Endo Story

Post by EndoWarriror on Fri 26 Aug 2016, 07:43

Thanks KitKat!

How do I go about sharing my story in a blog on here like yours?

I just put the whole Endometriosis to the back of mind since the diagnosis due to having had my birthday after the op, which I had planned while in hospital as it was going to be the big 3-0 and I wanted to do something special.  I had arranged a pub, booked a table and had me, the husband, the three kids, the mother and father in law and brother in law too, just nice, a small gathering and I had that to look forward too to recover too, if that makes sense!

Then we had Christmas, then we moved house in March this year, moved in two days before our 1st wedding anniversary, then I had the unpacking to do, the kids to get settled into a new school, then I started my own business (which is nearly ready to go live!)  then we went away to Scotland for our wedding anniversary in June and then since July this year the pain has started to come back and I just feel like shite again!

So it's time to look into it further and do my research and try and find natural remedies to help ease the pain a little, to make it more manageable for me!  Also would like to help others more aware of this nasty illness.

So for the long rant lol
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Kitkat
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Re: My Endo Story

Post by Kitkat on Sat 27 Aug 2016, 00:30

@EndoWarriror wrote:How do I go about sharing my story in a blog on here like yours?

I will open up a Blog area for you in the Blogs section and you can put your own stuff in there.
It will be called EndoWarriror's Blog for now - but let me know what you want to call it and we can change it to your personal preference once you get started.

You will be able to start as many different topic threads inside that area as you wish. (Only the Blog owner can start new threads in their own Blog area, but other members can interact and reply to those topics.)
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EndoWarriror
Just can't stay away
Just can't stay away

Female

Posts : 67
Points : 845
Join date : 2016-08-24
Location : United Kingdom
Star sign : Scorpio
Chinese zodiac : Buffalo

Re: My Endo Story

Post by EndoWarriror on Sat 27 Aug 2016, 10:39

Oooh coolio! That would be awesome!


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Kitkat
Admin
Admin

Female

Posts : 3303
Points : 11886
Join date : 2011-03-19
Location : Around the bend
Star sign : Sagittarius
Chinese zodiac : Dragon

Re: My Endo Story

Post by Kitkat on Sat 27 Aug 2016, 10:44

Hi EndoWarriror,

it's already there and waiting for you to start:  https://krazykats.forumotion.co.uk/f2-endowarriror-s-blog

Just click into 'Start new topic' and you're off.

    Current date/time is Wed 22 Nov 2017, 18:08