Hysterectomy does not treat Endo

[Rorydog10]

I'm just going to put up one big post as it's been really getting to me how many women I have seen posting on here stating they have been advised on a hysterectomy, or are going for a hysterectomy.

Obviously everyone's case is different and their could be other reasons as to why your doctor has advised on a hysterectomy (Adenomyosis being the main one)

If your doctor has advised on a hysterectomy purely to treat Endo (even if it is severe - frozen pelvis, on the bowels and bladder ect) then this is a huge RED FLAG!!

A hysterectomy will not treat or cure your endometriosis, only skilled excision (NOT ABLATION) by a true excision expert.

Please get referred to a BSGE centre, please do more research - there are educational groups out there to help you.

I just want everyone to get the best possible care and treatment.

[luthien]

I agree with the above, good idea to mention it, there is no cure sadly.

All mammals produce oestrogen even males, and as endo requires oestrogen to grow, a complete hysterectomy will not get rid of endo. The cells are already present in your body and endo will regrow. Research shows endo cells to be similar to the uterus lining and new research shows these cells are present outside the uterus very early in life possible even while a foetus, with symptoms starting at puberty.

endometriosis-uk.org/causes...

As these cells are already outside the uterus a complete hysterectomy may only help if the cells are just limited to around the uterus. Having said that a complete hysterectomy may offer some women a bit of relief as it removes the main source of endo, but women whom have had it still report a re-occurrence of symptoms at some point in their lives. It's important to note that every women is different and regrowth vs symptoms can vary greatly.

Check out the Endometriosis UK charity site for their guidance on treating endo;

endometriosis-uk.org/endome...

There is other information on there and a FAQ on hysterectomy

Definitely research into endo and treatment; if you are referred make sure it's an endo specialist and will carry out excision. Endo specialist know where to look, you can google ones in your area, check the BSGE website for centers near you or check out your local private hospital - they have specialists whom can put you on their NHS list so getting their specialist treatment but on the NHS. Excision removes endo and a bit of healthy tissue, as it removes all of that growth the chance of regrowth is lower and recovery can be longer, it's advised by the Endometriosis UK Charity, and the NICE Endometriosis guidelines (what doctors should be adhering to). Other methods are laser (diathermy, burning) and ablation (sanding, air blasting); these only remove the top layers of endo so regrowth is quicker, they don't need to be done by a specialist and can make endo worse as the cells are scattered all over the abdomen during the process.

No specialist should immediately suggest a hysterectomy or pregnancy as a cure for endo; yes they can be forms of treatment but if you have endo you have it for life, it may not be noticeable, or it could affect your life all the time. In addition just because you've had it removed by say diathermy a few times doesn't mean you're stuck with it or have a hysterectomy, push for excision; the success rates are greater.

Having a hysterectomy has drastic consequences itself for your body; we have learned to live with our uterus and ovaries, they are in part responsible due to the oestrogen and progesterone for a whole host of complex bodily functions, removal of this can affect temperature, sleep patterns, weight, adrenalin, nutrition absorbance, bone density, and urinary function. So it shouldn't be taken lightly, and must be researched first.

[angiecxx]

Hi I hope you are ok I had a hysterectomy two years ago because I was told it would get rid of the endo I have 5 children so I knew I didn't want anymore I had a really good talk with my specialist who convinced me that it would end year's and year's of suffering being in pain daily anyway I was so happy the day of my operation in wasn't nervous at all... it took 5 hours to do the op even though it should of taken about an hour a half my specialist found endo growing on my bladder and bowel my uterus was stuck to the lining of my stomach because of the endo anyway I was so so poorly for weeks after I had infection after infection the pain was unreal I literally lived on morphine and codeine I lost so much weight and I got diagnosed with fibro myalgia 4 months after due to the stress of the op and being so poorly i have had nothing but problems since I'm poorly most days my bowels and bladder are riddled with endometriosis and there's nothing they can do i so wish I had done more research on hysterectomys I was just constantly told it would help and was the only cure..... I regret ever having the op 😕😕

[asoullessstatic]

I think the issue is that the benefits of a hysterectomy are oversold.

For some women, who have no intention of having any more children/don’t want children, but are in extreme pain all of the time, a hysterectomy can provide enough pain relief that it improves quality of life. I know several who have had them, and while they are not pain free, it had improved their pain to the point where they are not on constant morphine and feel like they have a better life.

I have this big issue enough with people who really oversell it, that a hysterectomy will cure endo. No it wont, but, it can improve some symptoms depending on what your endo is like, to a point you have a better quality of life and arguably it makes it worth while. Should it be the first thing you jump to? Absolutely not, I think really its more of a case of patients needing to be assessed on their endometriosis, as an individual, and their needs, and what their life is like, rather than it being a blanket “hysterectomy is a cure” BS that I keep seeing floating around.