Do I have Endometriosis?: I've been... - Endometriosis UK

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Do I have Endometriosis?

hayleyjoness profile image
3 Replies

I've been suffering from varying symptoms for a while now, and I've been treating them as individual health issues. However, recent research I've conducted has made me question whether they are actually independent issues, and I think I could potentially have Endo.

When I was 16 (7 years ago), I had one of my fallopian tubes removed because a cyst 9cm in size had grown on it and made it balloon and swell. The ovary was left alone, so I ovulate from both sides but only have one fallopian tube.

About three years ago, I started suffering from regular UTIs, sometimes occurring multiple times monthly and sometimes only once every few months.

Recently (over the past 6-12 months), my period pains have been excruciating, incapacitating me to the point that I can't walk and I'm in tears with the pain. Ibuprofen seems to take the edge off the pain, but it never quite totally goes away whilst I'm on my period.

I've also been noticing generic pelvic/abdominal pain recently, from sharp stabs of pain to dull, constant throbs. I've also been experiencing period pain even when I'm not on my period, days after I've stopped bleeding, that arches around my lower back and is painful enough to keep me awake at night. I also have pain on the sides of my hips.

I've also noticed that over the past few months I've been experiencing sharp rectal pain that is so uncomfortable that I can't get comfortable no matter what I do. This can last anything from an hour to all day, but it seems to happen occasionally and irregularly.

I'm also experiencing sharp nerve-type pain in the lumbar area of my spine, which is also irregular but often enough for it to cause concern.

My concern is that because I only have one fallopian tube, the egg released by the ovary on the side with no tube is able to travel freely and potentially develop into endometriosis. The fact that this has potentially had 7 years to build up really concerns me, and I'm worried that it could have spread to my bladder, bowel, and possibly even my spine.

Has anybody else experienced similar symptoms? I have an ultrasound scan booked but I'm not quite sure how well ultrasounds pick up on endo. I'm considering going back to the doctor to explain my concerns to him as I omitted many of these symtoms last time I was there because I hadn't considered them to be potentially related. I thought I'd ask others here first to see if I can get some peace of mind.

Thanks,

Hayley

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hayleyjoness
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3 Replies
Rmbell33 profile image
Rmbell33

Hi Hayley,

I am undiagnosed as well but think I may have endometriosis too. I get some of the symptoms you've described as well as constant pain in my Lower back and between my legs ans hips. I'm in the same situation as you. Waiting on loads of tests. I would definitely talk to your doctor and get the ball rolling as endometriosis can apparently be very hard to diagnose.

Good luck.

Rosa

carlysky profile image
carlysky

Hi,

Most of what you said I go through too. I have not actually been diagnosed. they have found a cyst which they say is functional and fluid which they say could be endo.

I have been suffering for a year and 7 months with vagina pain, pelvic pain, groin pain, hip/back ache, bloating belly. also when I wee it takes along time to empty my bladder.

When they done an internal they also said my right ovary was behind bladder

.. but she said this was normal.

I am waiting to see if my gynie can do a hormone blood test to see if I lack in anything to Base a hormone pill around that.

Hope you get sorted?

Carly

Heloyse profile image
Heloyse

Hi Hayley

I definitely think you should go back to your doctor and go through your symptoms in full, and be explicit that you're concerned it may be endo.

Your pains do sound like potential endo symptoms - month-long symptoms and pain radiating to hips and back is what I suffer. Endo can cause adhesions to the bowel, so your rectal pain might be linked to this.

Did your doctor say at the time whether the cyst on your fallopian tube was or might be an endometrioma? It may not be that the release of eggs outside your tubes would be a cause of endometriosis, but if other origins for the fallopian cyst weren't identified at the time, the cyst itself might have been linked to the condition.

You should also mention your concerns to your sonographer when you have your scan. If this doesn't show anything, that doesn't mean you can't ask for further tests if your symptoms remain unexplained.

I hope your doctor can give you answers, and would urge you to be persistent - don't accept a diagnosis or treatment which doesn't capture all your symptoms.

Wishing you luck

H x

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