Feeling frustrated : First time posting...I... - Endometriosis UK

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Feeling frustrated

SareBear13 profile image
6 Replies

First time posting...I’ve been poorly for a while now with abdominal, back and leg pains, sickness, nausea, change in bowels, discomfort during and after sex, painful heavy bleeding etc. I recently tried to change contraception which seemed to be the start of my troubles, I have PCOS and a CT scan showed diverticula, after several courses of antibiotics, a recent colonoscopy showed no diverticulitis which is what I’ve been treated for. I’ve been passed back and forth from gynaecology to gastro team, been admitted to SAU several times, had numerous scans, blood tests and examinations and am feeling extremely frustrated 😭 I’m now back on the Sanaya press and following a low FODMAP diet which has improved my symptoms ever so slightly. I don’t have my next gynaecology appointment til May which is when I’ll be sorting out a laparoscopy, consultant isn’t 100% its endometriosis, although it’s in my family and I have quite a few of the symptoms. He wanted to see what the colonoscopy through up. They took biopsies-results in 6 weeks, but everything looked fine.

I’m really worried about what they’ll find or not find with the laparoscopy and just generally feel upset and frustrated that it’s all taking so long. Feel like I just want a diagnosis of something so I can find the right treatment. I’ve seen numerous GP’s at my surgery and doctors at the hospital who all seem to be saying different. Feel like the majority of the time I’m fobbed off and not believed. I’ve literally had a hot water bottle glued to me so now have a mottled tummy too!

One of my GP’s has suggested ringing up for a cancellation to be seen sooner by gynaecology. I’ve been off work since the beginning of December and just want to feel well again 😔

Any advice or is anyone experiencing anything similar? Feel so alone...

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6 Replies
Amber83 profile image
Amber83

Hi Hun,

You will probably find your story is the same as a lot of girls on here when trying to get a diagnosis. What u explain sounds like endometriosis, it seems to affect everything in the body ☹️ Trouble is it seems it so hard to diagnose and doctors just don’t get it!!!

Just an idea to maybe help the digestive system side of things - I have similar symptoms to you and started taking Bimuno daily probiotic sachets in the morning after breakfast and PROBIO capsules after my dinner, I can’t believe how much it has seemed to help xxxx

SareBear13 profile image
SareBear13 in reply toAmber83

Thank you! 🤗 where do you buy the sachets and capsules from? I’ll try anything to help! xxx

Amber83 profile image
Amber83 in reply toSareBear13

That’s what I thought. I think Endo can cause inflammation and bad bacteria in the bowel. They found inflammation in a stool sample I had to do and then I had a colonoscopy which was clear.

Just thought if I put good bacteria in my body it might help all the crap that’s going on in there.

Boots, they have got 3 for 2 on at the moment.

boots.com/bimuno-powder-sac...

boots.com/probio-7-40-capsu...

I noticed a difference after about 5-7days.

It doesn’t take the pain away but defo helps with feeling nauseous, sick and stomach doesn’t feel so crap. X

SareBear13 profile image
SareBear13 in reply toAmber83

Thanks lovely xxx

AllthatGlitters profile image
AllthatGlitters

Hi sounds like me with your list of symptoms. The doctors and consultants were sure I had endometriosis but after a laparoscopy they found I didn’t. I had previously been diagnosed with adenomyosis (via an MRI) so that was the cause of my symptoms and pain and bleeding. I was sent to gastro too and also my bloods are never right. You know your body and know that something isn’t quite right so push for answers, have a laparoscopy and ask for an MRI.

Please feel free to PM me if you like x

SareBear13 profile image
SareBear13 in reply toAllthatGlitters

Thank you...hoping I get answers soon xx

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