Help needed for my Wife: Hi all a random... - Endometriosis UK

Endometriosis UK
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Help needed for my Wife

Vallhala-Rising80
Vallhala-Rising80

Hi all a random question if anybody can answer I would be grateful my wife had endometriosis waaay back in 2006 and had to have a complete hysterectomy but has now developed blood in her urine and severe back and stomach pain, can anybody say if endometriosis possible to recacuring?

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Endometrisis unfortunately never goes away, treatments available look to reduce the amounts of endo by removing it or slowing it's growth by reducing hormone levels, a hysterectomy can help this.

However as endometriosis is a lifelong condition currently there is no cure, so even with a hysterectomy it can still grow.

Your wife should go to her GP and ask to be referred to an endometriosis specialist so they can asses the extent of regrowth.

Thank you this helps a lot.. She was seeing a gynecology specialist until they told her they could no more for her.. So I'm going to push to get her re referee as her pain is unbearable

If it helps check out the BSGE website for some guidance and centers near you. If you're not in the UK there may be something similar in your country.

A general gynae specialist won't have the knowledge and experience to deal with or appropriately treat endometriosis, so when you push for a referral make sure it's an endomtriosis specialist, you can request them. They're more thorough and will be able to discuss in more detail some of the less well known treatments / next steps for your wife.

You can ask for a different specialist if you can only see a general gynae; it doesn't have to be the same one.

I hope she gets the referral xx

Hi have you ruled everything else out such as a urine infection, if so then doctor should have referred your wife for a scan to see what’s going on, maybe contact gp and ask them to investigate x

Sounds like you need her to see a Dr ASAP. Could be a kidney infection. I always have traces of blood in my test results but nothing seen to the naked eye. Yes, endometriosis can come back despite having hysterectomy but this sounds like an out of hours Dr visit as a matter of urgency!

It could certainly be endometriosis but it could also be a lot of other things (I specifically worry about kidneys with her symptoms). Best bet is to go to doctor or emerg ASAP! Better safe than sorry

Hi, if they left your wife's ovaries in situ then it's very plausible that a number of deposits may have continued to grow. If the ovaries were taken out with the womb then less likely to have further issues.

She needs to see a doctor asap - the blood in the urine could be very serious ie kidneys, if it were me I would go to a&e

No they took her ovaries out. We went to our local walk in centre and they said it was nothing major and to book a Dr's appt on Tuesday.luckily the blood in urine has stopped

Could it be a kidney infection?

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Hi there! 22 years ago I had a full hysterectomy and was told that it endo would never come back. I still get some symptoms on a regular basis, however as I was riddled I wasn't surprised. It gets better!

You must get this sorted NOW!! As the symptoms are worrying! Guys get it too, rarely, it's due to endo cells being laid down in the mothers womb when carrying a male child or so they think!

Best of luck😉

A hysterectomy doesn't take endometriosis away. In fact, it may have never been treated if those who performed the hysterectomy didn't perform excision surgery too.

Unfortunately yes, it can come back, but in her case it's most likely always been there.

I would suggest consulting with an endometriosis excision surgeon ASAP and go for a specialised visit to an experienced urologist who has experience with endometriosis.

I had a hysterectomy at 28 years old, due to severe endometriosis. My ovaries were left because I was young. However, I have had rectal bleeding for 40 years, I am now 63 years old. I lose large clots from my bowel, like having a period from my bowel. Hence, I have had issues all of my life.

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