Having a hard time: Hi All! I am curious as... - Endometriosis UK

Endometriosis UK

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Having a hard time

CAlly123 profile image
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Hi All! I am curious as to how long it took for you all to get a diagnosis. I am 23 and have suffered for almost 7 years. Recently I went to a Gynecologist for my first time and she basically told me she wouldn't recommend surgery because I've never had it or children and she doesn't want to make it worse. I can't find a doctor who takes me serious...

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CAlly123
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CAlly123 profile image
CAlly123

I am always in a level of pain. Pain with bowel movements, sharp anal, vaginal and ovary pain. Upset stomach, bloating, vaginal pain that becomes so sharp that it takes my breath away and I can't sit or stand. My pain is worse the week of my period, but pain starts the week before and lasts till the week after. I used to have to over take pain medications to even function. I am now on Cryselle for birth control, take prescription ibuprofen, and take tinctures of herbs to ease the pain and impact on my life.

Kez83 profile image
Kez83

Hello,

We'll I'm 32 now and have just been formally diagnosed, I can remember having to grab the desk at school with the sharp flooring pain you're describing.

For years it was just terrible periods for me, not pain all the time. Although possibly more than I recognised as being linked.

When I stopped taking the pill two years ago I was so ill I couldn't go to work for a week. I'd had "episodes" that had stopped me making a day but never a week. My periods got worse over the year but then I'd have a month of relief. I began to track my periods and they were from 14 days to 50+ so knew I had to see a doctor and not be fobbed off. In previous years I'd seen GPs who'd dismissed me, told me ibs etc.

I'd been off the pill a year and had moved towns and so needed to move doctors. I looked at the gp surgeries online and found one with a gp with specialism in gyny. After signing up I got an appointment with her and was finally taken seriously. Soon an endometrioma was found and then after help from Lindle on here I was referred to a specialist centre to treat my endo and I've just had a diagnostic lap in Jan.

I'm not certain however that had I not been trying to conceive or had my cyst not needed further investigation, I'd have been listen to. But I can't say.

Anyway, the reason I'm boring you with my story is that I listened to too many people who didn't understand what I was going through and ignored a condition that now requires an op on my bowel. I realise that it can be really hard to push your gp and only six month ago I was clueless, but my advice would be to put all of your history and symptoms in a letter, print the links that Lindle supplies and talk this through with your gp or a new one like I did.

The pill didn't stop my pain but probably did save me some trouble endo wise. I'm no expert but if it works for you it maybe is the best option for now so don't always think you're not getting the right treatment as its the first "treatment" to try. That said it does sound like you need to be sure by discussing it with someone who definitely understand your symptoms and possible causes before they judge how to treat you.

Apologies if I'm misunderstanding but it sounds to me that your gp may think they've done the right thing in referring you to a gyny (mine did the same) where you maybe need more specialist advice. So first things first, get it all in writing and make them read from the same page as you!

Very best off luck xx

Kez83 profile image
Kez83

And I totally don't want to scare you! Xx

CAlly123 profile image
CAlly123

Thank you Kez83! I am super new to the knowledge and empowerment of my own woman's help and educating myself has made me stronger! Fibroids, ovarian cysts and endometriosis run on both sides of my family. But I am the first to take a stand.

I have had ultrasounds in the last year that didn't really show anything, blood work to check my CA125 level, pap smears and a recently scheduled MRI. I was on bc in high school due to how odd my periods were then. And once they regulated and lasted a sufficient amount of time, I stopped taking them. The most recent bc is to specifically help with my symptoms. I have also gone mostly vegetarian and use essential oils and tinctures to help. I have seen a huge difference in the amount of days of pain for sure.

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