Endo following hysterectomy : Hi his may be... - Endometriosis UK

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Endo following hysterectomy

RJ2018
RJ2018

Hi his may be a stupid question but I don’t feel it was suitably answered following my total hysterectomy.

I’ve had a total hysterectomy some years ago to remove endo deposits. Is there any chance at all that endo deposits can still form? I’m not on HRT so clearly not having periods.

Just wondering why I feel so rubbish healthwise and starting to feel like I did before op!!

Is it possible to still have associated health problems after hysterectomy that are linked to endo?

Rebecca

23 Replies
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Were your ovaries removed during your hyst? Xxx

I’d speak to your gp or gyny but I think endo can still come back as endo can be on bowel and bladder aswell but not 100% xx

Yes endo can come back after a hysterectomy if any endo was left behind xx

Hi

I had a total hysterectomy and BSO - 18 months later I had to have further endometriosis removed by lap - I had been in HRT initially which was the likely cause. A couple of years on I seem to be free of it - fingers crossed! If you feel like you did before your surgery definitely worth going back to your GP/gynae.

Unfortunately a hysterectomy doesn’t treat endo at all. Neither does removing ovaries. If you have adenomyosis (which many women with endo seem to do) then a hysterectomy removes any pain associated with that but it is definitely possible and even likely that endo remains after a hysterectomy unless the endometriosis was also excised. If your surgeon at the time told you endo would be treated by hysterectomy then unfortunately they are not an endo specialist (true specialists are hard to come by).

Sunflower1968
Sunflower1968 in reply to k8rush

Your information is spot on and isn’t it so frustrating that many women including myself were told it would resolve our issues and only by researching sites like this prove to us that so many women are having major surgery and still suffering, I’m so grateful for this site! Thank you for your post x

Hi . Sorry to hear that you are not feeling well. I had hysterectomy a year ago and a couple of months ago I had a laparoscopy and they found endo. I must admit I thought that after a hysterectomy that would be it but it is certainly not the case. I have researched this as well and it appears to be quite common.

I'm waiting to see gynae again. I wish you well

How are you now?

Two years down the line, and after being diagnosed with endo, I was told that it wasn't!. They couldn't explain why I had pelvic pain but knew it was nothing to do with anything gynae related. Since then they have put me pain down to ibs and various other things. I've had 7 months of NHS physio trying to get to the stem of the pain.

I started on hrt which has helped me enormously and estrogen only gel. I have been going to a private physio for 4 month s and I now feel noticeable better. It's been a long struggle but I now see light at the end of the tunnel 😊. How are you?

Thank you for your reply, I have severe endo and ando and currently waiting a hysterectomy but I keep reading on here that lots of women still stuffer after that xx

I'm very sorry to hear that. Does your specialist give you any sort of advice on how you will be after the hysterectomy?

No she said there are no guarantees she does specialise in endo and has been a gynea for over 25 years but I have lots of bowel issues and I’m convinced it’s in my bowel too.

Thank you all for your replies. These are really helpful and I wish you all well. I’m so pleased I found this community as endo isn’t a subject that can be discussed comfortably!!

HibRJ2018.

I'm 5 years after total hysterectomy and Im pretty sure the beast is back. Its possible even without hrt. I have booked to see my gynae again as I feel dreadful. Mainly bowel.symptoms again but I get migraines and they feel cyclic. What symptoms are you getting?

Sending sisterly love ❤

Even without estrogen from ovaries/HRT etc if any endo is left it can self produce its own (plus any from diets such as flaxseeds etc). Just had my hysterectomy and not sure if a lump is have is it already reappearing.

Without her no it’s not possible if you were on hurt I would say yes as that happened to me. However endo is now known to be an immune disorder so you may have other immune issues,

A hyst or removal of ovaries will do nothing at all to treat endometriosis. It foems on the perotenral wall and organs such as the bowel and bladder and well...anywhere. removing the uterus doesnt remove those cells (nor does laser ablation which just temp burns the top off). Experts believe it somehow produces its own hormones so can even still be growing and causing issues after ovaries are removed,after menopause or while on hormine treatments. Hormones can lessen symptoms but they never make it go away.

The only way to remove endo is with excision...cutting it out. If that is done by a specialist it shouldnt come back. (85% ish success rate when done by an expert)

A hyst will drastically help and cure pain and symptoms in those who have adenomyosis though...it is like an evil cousin of endo and they can often be found hanging out together!

Ditto. Am four months post TAH BSO both ovaries removed and feeling worse than ever. Severe pains, extreme fatigue, no appetite and depression. To name a few. All the joints are inflamed making even simple tasks frustrating. Am trying my best to remain active and positive but seems like a losing battle oftentimes.

Had adenomyosis and am not on HRT. Feel like it is an autoimmune disorder as have severe bouts of unbearable pain and inflammation in all joints, bowel issues are a normal occurrence.

Hi all:

After more than 20 years with Endo, the only thing that has helped me tremendously is 500 mg or more of a 10% progesterone xream, low carb diet and simple yoga excersices. I have to lay for the cream because no insurance would pay for it and found relief on my own since doctors only recommended surgery and synthetic hormones. I refused to have the hysterectomy. It has taken me years of searching, going to doctors who did not help me nor listen to me, I am not cured, that I know...but before the cream and diet I had symptoms like recgal bleeding, severe pain that would make me stay bedridden for a week or more and so on...I hope everyone finds relieve no matter how...blessings...

Endometrial cells produce there own oestrogen, as does every fat cell in the body, so a hysterectomy does not always ease the problem. Research has shown that many people with endo (75%) benefit from a wheat and gluten free diet. You need to follow an anti-inflammatory diet, so little or no red meat, try using A2 milk and diary products (goats and sheeps dairy only) and of course plenty of fruits and vegetables.

RJ2018
RJ2018 in reply to ccfd9

Thank you I will give that a go. X

Hystorectomy doesn't cure endo, unless it's inside of the uterus, it's called adenomyosis. Then it does, excision specialists who usually do endo and adenomyosis surgeries need to be consulted for that. x

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