Am I going mad?!: This is my first post and... - Endometriosis UK

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Am I going mad?!

rosa52 profile image
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This is my first post and I'd really appreciate any comments you have!

I was diagnosed with Endo back in 2008 after living with constant pain and heavy periods for years. Things came to a head when I was found to have chocolate cyst on my left ovary. It was recommended that I take the pill for 6 months to effectively 'shut down my ovaries' and stop my periods for a while. After trying many, many pill brands I found one that didn't make me sick or give me massive headaches!

So here I am 5 years later,still taking the pill for 6 straight months,then a week off and then back on it for another 6 months and so on....I haven't had a period now since November 2008.

However, I still get pain down my left side and across my abdomen. It's not constant and tends to flare up for a few days and then disappear. Sex is almost unbearable now as I am in a lot of pain during it and up to 3 days after!!

Last month, I was in agony for a week,with abdomen pain and headaches and bursting into tears for no reason! (Pretty much like I was having a period!!!Although obvisoulsy I'm not!!) I went to my GP and she sent me for a scan as she thought I may have another cyst flaring up. I got the results last week and everything was completely normal.

Although I can't complain about the treatment I have received, my Gynae and my GP have both been very understanding and helpful,thankfully I was diagnosed quite quickly too,which I am very grateful for.

However, am I going mad?! Surely if I am on the pill continuously then I shouldn't still be experiencing pain?? Am I imagining it?? Or is this just something I have to put up with??

I'd really appreciate any advice any of you ladies may have! Thank you!!!

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rosa52
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Jillanovitch profile image
Jillanovitch

You are not imagining it, the pain is real. Being on the pill stops the Endo from growing as fast and spreading but it does not take it away. The endo that is there will be affecting you it's as simple as that my love, we either live with the pain and if it's too much we go and see the dr again. This is your decision as hard as it may be, some people have more surgery and never regret it as they feel fab, some people feel the same after surgery. Remember your not alone and it is real. You keep that chin up high!!! ;0) big hug xx

rosa52 profile image
rosa52

Thank you or your comment. I had a lap back in 2008,as unpleasant as it was,sometimes I think I should go in for another one to see what's really happening down there!!! In 2008 they found 3 patches of endo,but I do sometimes wonder if it has spread.

On my pill free week of the year I usually feel horrendous-my Dr has told me this is completely normal as the rest of the year the pill is 'masking' my endo. This is why at the moment, I cannot even think of coming off the pill as I know I would go back to feeling horrendous all day every day again!

Thank you for replying. Endo can be quite isolating and it's nice to be able to read posts of support on here.

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