Endometriosis UK
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First post here... looking for some support and advice :(

Hello,

After a few weeks on there, this is my very first post. I felt the need to write something after I experienced the worst pain I ever had last night... I have not yet been formally diagnosed with endo and I think this is one of the most frustrating things. I'm going to try to share my story below:

I've always had very heavy and painful periods as a teenager to the point I would pass out or be sick and miss several days of school...I was told the typical "It's just period pain, tough!" and was put on the pill to allievate the symptoms, which worked for a good 8 years... then last year, I started to have this dull ache on the right side on my lower tummy before my period, then it would be there before and during my period, and then it would also be there after, to the point that I had this weird pain every day, however it was very much manageable at the time and did not think any of it... (silly me). Coming to beginning of this year, I decided I had enough of the pill and its side effects which included migraines and I decided to swap for a copper coil...

After a couple of months the dull ache started to spread and became more and more intense, I would be in pain when my bladder is full and sometimes would be in pain when going for a wee (sorry for the details!) I would also notice IBS type symptoms before and during my periods... so I went to my GP who referred me for ultrasound scans and blood tests which all came back normal. Next step was to refer to a gyno which they did as they told me endometriosis was a potential cause of my symptoms. I went to see the gyno who barely asked me anything, blamed everything on the copper coil and told me to swap it for a Mirena. Given that the Mirena delivers hormones only locally I agreed and went to change my coil...

The Mirena gave me some very minor relief in the way that the pain become less frequent during the day, however the pain became more and more intence and more and more difficult to manage. Being French, I went on holiday visiting my family back home and decided to take an appointment with my family GP there who knows me very well. She asked me so many more questions than the gyno here, asked me about bladder problems, digestive bowels (I did not have to mention them she asked me straight away)and told me that all my symptoms pointed to endo and said if things don't settle down I would need a formal diagnosis to get it under control and prevent any fertility problems...

I waited 4 months but the pain is becoming worse and worse everytime I'm on my period, I am also in pain on a daily basis (it just becomes worse around and during my period) I decided to go to my UK GP and asked for another referral and this time to the endo clinic that I know exists at my local hospital. He was not listening to me at first, luckily I went with my bf who backed me up and jumped in (and who's been amazing with me for the past year being in pain btw) and he told us that the endo clinic I mentionned does not exist (which I would later discover that it actually does...) and referred me back to a general gyno. In the meantime he prescribed me Mefenamic Acid which works sometimes (only allievates the pain but does not get rid of it), sometimes it does not work at all, one thing for sure is that my stomach does not agree with it (even with Omeprazole - which gives me headaches btw :() as I have history of bile and acid reflux!

My appointment with the general gyno is on Friday, I thought I would be strong enough to not have a meltdown before but last night I was in agony curled up in bed with the worst pain I ever had and I just broke down into tears. All I want is a diagnosis and an action plan to treat me... How do you think I should tackle this appointment?

Sorry for my long post and rant but any advice on how to handle the appointment and also symptoms would be very much welcome! I am to the point where I can't plan anything around my period, my social life depends on the amount of pain I will be on that week/day, my energy levels are drained and I just want answers!

Thanks!

M xx

3 Replies
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Just one thought. Write down your questions. When you feel in pain or emotional in an appointment it can be hard to think of everything so go in armed with all your queries. Don't be worried about having a meltdown either they need to understand just how much this is affecting you. Take someone in with you if it would help you. Hope it goes well. x

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thank you so much for taking the time to reply. My boyfriend could not take time off work to come with but his mum is going to come with me instead (she got endometriosis so she knows how bad it can be), i'm going to follow your advice and write everything down before hand! x

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It's so frustrating I've been exactly where you've been in agony and not taken seriously. I've learnt now (and I wish earlier) that you have to make a fuss and put your foot down and demand to be taken seriously. Very easy to be fobbed off. I've been lucky that the mirena coil has improved my pain but it's not a cure all by any means. x

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