HELP do I continue pushing for some sort ... - Endometriosis UK

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HELP do I continue pushing for some sort of diagnosis ENDO or not ?!

Declaire20 profile image
3 Replies

Long story short since I was 15 (now nearly 23) I have suffered with horrific abdominal pains on the right hand side very rarely the left. I’ve have kept diaries etc and can’t pinpoint a certain time of the month where it is worse. It’s seems to worsen during and after sex. At times it can get so bad after sex that for days I can barely walk around the house without curling over in pain and then after a few days it eases off. Although the pain is not always prominently there there is always some sort of dull pain in that area. I haven’t been able to put pressure on my right side for a long time and during any internal or swabs I’ve had the pain in unbearable.

I’ve never had a smear as I’m under age but am considering paying for a private one for piece of mind.

I have had a LAP 2 years ago and was in surgery for well over an hour but they claimed they found nothing (bear in mind that surgery is usually 20 mins if they find nothing!!)

My main question for you all is do I continue to push for a diagnosis or further tests? PLEASE HELP I am worried it will begin to effect my relationship with my partner. I also have IBS and am concern it’s causing bad flare ups of that on occasion to.

Thanks ladies 💗

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Declaire20
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3 Replies

Hi!

I had similar from 19-23 when they finally did surgery (which I fought for). It’s strange that they found nothing on the laparoscopy given how much pain you are in. I would definitely keep fighting because despite the pain you need to get your life back!

I’ve now fought for surgery number 2 so you can do it as long as you get a good gynaecologist.

Good luck!

Kitty-102 profile image
Kitty-102

Hi sorry to hear what you’re going through. I have a fairly similar issue in that I’ve been experiencing symptoms since I was young (I’m now 31). I was diagnosed with coeliacs in 2014 and hoped that would magically fix everything but it really hasn’t and they’re only

Just starting to look at other causes including endo. I’ve had an ultrasound and MRI, neither of which showed anything although I know this does not mean anything, and they now won’t do the laparoscopy because they say my pelvic pain is likely to be complex (given the number of years I’ve had symptoms and that I also have bowel issues from the coeliacs) so think that even if they find endo and remove it, it may not fix the pain. Instead, they put me on the pill and referred me to pelvic physio.

On the one hand I can understand I can see their point and I don’t want to go through surgery if it won’t fix anything but on the other hand it would be nice to have a clear diagnosis and know where I stand. X

Collrobbo profile image
Collrobbo

I have always suffered mainly on my right side and have also had lots of pain after sex, I was diagnosed with endometriosis at 19 and just had my hysterectomy at 46. I was robbed off for years with every IBS tablet which never helped me, I have had numerous laparoscopy surgeries, do not settle and be fobbed off like I was!! Ask to be referred to another consultant! Good luck 😊

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