Diagnosed finally Nov '14

I'm new and wanted to share my Endo story.

Finally, after 18 months of severe pain, excessive bloating, bleeding and pelvic pain, I got the referral I so desperately needed to see a gyny consultant.

During those 18 months, i found it hard to walk, sit, or walk comfortably. Especially when my bloating was to the extreme where I looked 9 months pregnant. I wasn't able to hold my toddler, pick her up, carry shopping bags for anything more than 2 minutes without consequences. I wasn't able to wear tampons at all; the internal pressure to just insert one was just agony. Towels, if I had to wear, were being changed every 30 minutes at the worst. I was incredibly nauseus at the best of times, and was sick at least once a day during the worst time. When my endo bloat was at its worst I could barely eat or drink.

I saw the same female doctor, but at the time she was on holiday, a male doctor saw me, and tried to pass it off as IBS *which I've had in the past and know the difference in my own body, as well as wanting to test me for celiac disease. Absolute rubbish. So I ended up back at the doctors the following week to see my usual doctor.

After the referral I was sent straight away to see the pre-op team at the hospital to prepare for laparoscopic surgery. I had a 12 week wait but had my surgery on November 14th last year. I was incredibly nervous in case they didn't discover anything. But they did.

They found a large amount of endometreosis, and burnt out over 70% of it, however some of it was too close to my womb to deal with. They also found two layers of skin (c-section scar tissue from my emergency c-section) which had attached itself to my uterus. They cut this free.

As part of a treatment plan, I had a Merina coil fitted whilst I was under anthestic.

I was advised by the surgeon that if I wanted more children, to not waste time.

I now consider myself incredibly lucky to have one child, and that's where I'll stop for now. Not the right time to try for another.

It took me three weeks almost to a month to recover due to where they had performed the surgery. Longer than I expected. Constant bleeding and pelvic pain daily. A lot of painkillers got me through this.

Now, 2 months on from surgery.....as a result of the surgery, diagnosis and treatment plan, I'm feeling a lot better health wise.

My symptoms are a lot better at the moment - however when I have flare ups the pain is much more intense. Pelvic pain can be incredibly chronic as it is today.

I've just had my first period since well before surgery and I couldn't believe the difference. So light!

I have as a result lost 10lbs, I think all pretty much was inflammation but I wonder for how long.

What annoyed me was that I wasn't given any information about the condition itself, and felt that it was almost swept under the carpet, that the condition here in a particular Warwickshire hospital isn't taken seriously.

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3 Replies

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  • Wow! You are incredibly lucky to have it diagnosed so quickly. :) Now the really hard part is coming, and that is dealing with it forever (or until they can cure it. ;) ).

  • I have had a history of incredibly heavy period since I was 13 - I'm now 40 and had to cope well during school etc, fainting in shops etc but it was only after having my daughter 2 1/2 years ago that things really changed. I was just incredibly persistent with my doctor, as I knew things weren't right. It's been a battle and a half trust me! Working full time, commuting, being a mum and juggling other things all even harder with this disease. I take each day as it comes now, some good days, some bad days. I'm already waiting for the time now where it gets as bad as it was before the diagnosis if that makes sense. The Merina seems (touch wood) to be working. tried all kinds of other birth control options after my daughter was born but was a nightmare. Pill made me so physically sick I couldn't even keep water down. Injection made me so depressed. Being a woman is such a battle. Men don't know how lucky they are!

  • Yesterday wasn't a good day. A great deal ofo pain. Ended up in bed dosed up on painkillers and a hot water bottle.

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