Thought my endo was back but apparently i... - Endometriosis UK

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Thought my endo was back but apparently its ibs

vyse29 profile image
9 Replies

I have never had any symptoms of ibs but after I had my hysterectomy I waa fine untill now with terrible pain on my right ovary cant pee properly and a twisting pain when I do go also I dont gwt any symptoms of ibs no diorrea and I go to the toilet regular every morning like clock work so im pritty baffled but sitring here in terrific pain in my side in agony x

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vyse29
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Impatient profile image
Impatient

Why isn't it endo? Endo can carry on long after a hysterctomy if they didn't remove ALL of it when they took your pumbing out. It will still be there, still feeding off hormones and still bleeding and causing pains.

Actually sounds more like you have an ovarian cyst attached to or pressing on the bladder. Has your doc sent your for an ultra sound to check for the presence of cysts?

Before deciding you have IBS which doesn't actually exist. IBS means something is irritating your digestive pipe work, It is not an illness in itself.

The irritation could come from inside in the foods your are eating or from the outside, with endo, cysts, adhesions etc.

Saying you have IBS is like declaring your have a rash.

You need to find out what is causing it. If it is something you can stop by changing diet then great, if it is due to an illness or a physical problem then the surgeons need to get involved to help alleviate the discomfort.

As you still have an ovary..you are still at risk of getting ovarian cysts and they can be whoppers and if one is pushing on the bladder or attached to it now with adhesions then all the symptoms you describe could be down to a cyst.

Please ask the GP to refer you for a scan, if for no other reason than to rule a cyst out if there isn't one there.

vyse29 profile image
vyse29

They said no its not endo but will do a scan if it persists in 3months and will give me monthly injections but they telling me this and saying its ibs im not happy as I been referred to a water dynamics at the hospital too I know in myself that its endo I dont know what im going to do as nobody wants to know in the professional health looks like I have to save and pay privately to see someone if I continue like this its not fair to me or my family thankyou for your reply inpatient x

Impatient profile image
Impatient

All you need to save up for is the initial private consultation. If the endo specialist agrees that it does look as though this is endo not IBS then they may take you on as an NHS patient or at least inform your NHS doctors of their expert medical opinion. You need to get an endo specialist on your team supporting you. Far far too many endo ladies are fobbed off with IBS. It is getting like an epidemic.

Hi vyse29, sorry to hear all that you have been going through. I agree with Impatient - your symptoms do NOT sound like you have IBS, however, I am no expert.

If you do NOT have any of the following symptoms then it is highly unlikely that you do have IBS:

What is irritable bowel syndrome (IBS)

Irritable bowel syndrome is a functional gastrointestinal (GI) disorder, meaning it is a problem caused by changes in how the GI tract works. People with a functional GI disorder have frequent symptoms, but the GI tract does not become damaged. IBS is not a disease; it is a group of symptoms that occur together. The most common symptoms of IBS are abdominal pain or discomfort, often reported as cramping, along with diarrhea, constipation, or both. In the past, IBS was called colitis, mucous colitis, spastic colon, nervous colon, and spastic bowel. The name was changed to reflect the understanding that the disorder has both physical and mental causes and is not a product of a person’s imagination.

IBS is diagnosed when a person has abdominal pain or discomfort at least three times per month for the last 3 months without other disease or injury that could explain the pain. The pain or discomfort of IBS may occur with a change in stool frequency or consistency or may be relieved by a bowel movement.

IBS is often classified into four subtypes based on a person’s usual stool consistency. These subtypes are important because they affect the types of treatment that are most likely to improve the person’s symptoms. The four subtypes of IBS are:

1. IBS with constipation (IBS-C)

hard or lumpy stools at least 25 percent of the time

loose or watery stools less than 25 percent of the time

2. IBS with diarrhea (IBS-D)

loose or watery stools at least 25 percent of the time

hard or lumpy stools less than 25 percent of the time

3. Mixed IBS (IBS-M)

hard or lumpy stools at least 25 percent of the time

loose or watery stools at least 25 percent of the time

4. Unsubtyped IBS (IBS-U)

hard or lumpy stools less than 25 percent of the time

loose or watery stools less than 25 percent of the time

Hope you get sorted soon

vyse29 profile image
vyse29 in reply to

Thankyou for this I certainly havent got ibs I know I havent after reading this I am very sure its not xx

in reply to vyse29

That's great news :D xx

city profile image
city

I had all the symptoms of IBS mentioned above and I do not have IBS!! I was told I had it for 7 years until endo on my bowel and adhesions were found in 2012. Had some removed during a lap and am doing really well on Yasmin. Not had an "IBS" symptom since! I agree with the private consultation - they usually cost £150-200 (London prices) but phone round and get some prices. Choose one that works from your local NHS hospital otherwise it can be difficult to get follow up treatment on the NHS. Good luck x

vyse29 profile image
vyse29 in reply to city

I cant get over that you was told ibs for 7years did they take that long to say or do anything thats terrible butI i am glad your ok now and not suffering so much xxx

Chantilly profile image
Chantilly

I am very sceptical of doctors passing it off as ibs, for a year of being in and out of hospital I was being told I had ibs before being diagnosed with endo. You can feel it in your own body whether its your bowels or not, if you feel it's not ibs be persistent with you doctors and don't let them fob you off.

Also a scan does not show endometrial cells, the only way to see them is to look at them directly lapescopically etc.

Hope this helps a little, I checked this info with my roommate who is a doctor. Xx

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