HI IM NEW HERE

[NB89]

Sorry in advance for the long post but here is a rough outline of my story the last 16 years

I got diagnosed with endometriosis when I was 15years old after an 18 month battle with over 5 doctors and gynaecologists whom all told me I was too young to have it as it's not in my family. Before being diagnosed I had bled for 18 months almost every day, the longest I stopped bleeding for this whole time was 19days straight it was the most terrifying time of my life I was so young and no one was helping me or my family get me help. Fast forward to an amazing consultant I met and still know now, I was 15 when she decided to 'look' inside I was scared but it had to be done the pain I was in was unreal. An operation that should of taken 20/40minutes took over 2 hrs I'll never forget my family telling me how scared they were. I came round and felt like I had been hit by a truck and also looked like something from a horror film. From then on I was put onto the contraception medication ranging over the years from different pills, injections, implant, coil and testosterone (aka northisterone) and monitored every month for 6 months, my periods had returned to 'normal' and I wasn't in pain so I was discharged (happy days) fast forward 12 months and the bleeding started one month and didn't stop, once again the pain came, I was waking up from 6/8hrs sleep covered in blood after falling asleep with 2 pairs of pants on, a thick pad in each and some think p.j bottoms, this happened at least twice a month and became normality for most of my family including my younger siblings, you forget how much it effects everyone around you. This kept happening the same thing every 18 months to 2 years until 2011 when I met my ex husband and decided I wanted to try to have a baby before it was too late as my consultant said my chances were slim to none, after a 16 months of meds and checks and trying nothing was working so we decided to look into IVF with the help and guidance of my consultant, we knew it was going to be hard and expensive but we had to try, 4 months later in January 2013 I didn't start bleeding and I was scared, took a test and I was in fact pregnant but I didn't feel excited at all I was so so scared that something would go wrong like it always had, this is when my anxiety took its first turn for the worst, I had a terrible experience during pregnancy with my son stopping moving and being told he was going to be small I was constantly in and out of the hospital and panicking, Oct 2013 and 6 days late my little boy arrived a massive 9lb 3oz and forceps delivery resulting in me having stitches inside and out, 3 days in hospital, having to press a bell to be handed my son as I couldn't move unaided due to the birth and couldn't breast feed due to tongue tie so I felt useless once again. After having my son I was put on the marina coil to control my bleeding but once again within a few months I was bleeding through it so it was back to northisterone high doses to give me temporary realise from the bleeding, Fast forward to 2016 my son is a crazy happy nearly 3yr old but the bleeding was back and worse than ever I'd had enough so after begging my doctors for years to help me give me something they decided that she would put me forward for an ablation, in 2017 I found out my then husband had been having an affair with one of my close relatives, my world crumbled and I moved back to my home town with my son, the stress over the next year made my decision more sure I wanted it to stop now, no medication nothing I needed to be safe and well to look after my son so now the drs needed to listen to me for once. We booked the ablation for later that year, since the ablation I haven't bled at all but there has been so much more I didn't even know could be connected to this happened, I have zero short term memory, my moods are like I have 2 personalities, I don't understand emotion anymore and I can get so frustrated so easily, I'm on medication for anxiety and depression and I'm currently awaiting an MRI scan as they are now not sure if I have a growth on my pituitary gland which has now come through for the end of this month (march 2021) after waiting over 6 months, I get the worst pains in the last few months like it feels like my insides are being beaten and it's the worst, I don't sleep I wish I could, I get up at least 6 time s during the night for a wee (I don't drink that much) I twitch and have ticks that I do now that I never realised until hearing about Endometriosis UK today (02/03/2021) that these could all be symptoms. I've never ever spoke about this and never ever wrote it down in any way shape or form so this has been hard for me too do but I'm suffering badly at the moment with my mental health because of these constant unknowns which could all be to do with this silent disease, I'd like to think maybe just one person reading this doesn't feel like it's only them because I did and sometimes still do but it's ok, we can all moan to one another 

Thanks in advance

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Hi NB89,

What a story! It sounds like you've been through difficult times. I'm glad to hear that as crazy as things are with ups and downs that you have a plan - I hope you'll start having some better days soon.

[Tomims]

Welcome to you between us, you are such a brave person , God bless you and your son