Endometriosis : Hi everyone, has any one... - Endometriosis UK

Endometriosis UK

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Endometriosis

Bluesea7 profile image

Hi everyone, has any one had endometriosis come back even if you had full hysterectomy and ovaries everything removed.

29 Replies

Hi, hope you are well and having a good day.

This is a question I wanted to asked, I’ve had a full hysterectomy and my ovaries removed the following year, unfortunately I began having the usual endo symptoms, with lots of pelvic pain again, I went to see someone, and since then I’ve had a colonoscopy this year to see if there was any in that area, and I’m also on the waiting list for another laparoscopy. I wondered if anyone else had a laparoscopy after everything removed including ovaries, and found it had returned.

Have you had surgery, do you think you might still have endometriosis?

Big hug x

Bluesea7 profile image
Bluesea7 in reply to bighug

3 years ago I had full hysterectomy and ovaries removed, I've had no pain I did not go on hrt as I was told that it could recure with hormone treatment but I have to make sure I get my vitamin D and C, so my bones dont become weak and other vitamins, that's why I take wellwomen why going through menopause , but at the moment and dont have any symptoms.

Yes. I had a total abdominal hysterectomy and bilateral salpingo oophorectomy - so uterus cervix and both ovaries and tubes out. As my endo wasn’t excised at time it was just left as gynae didn’t know enough and told me it would just die off!! Well it doesn’t and I’ve 3 more ops since. First was ablation then 2 excisions at bsge centre. The second of those was for deep infiltrating endo within the vagina vault. Originally I was on oestrogen only hrt but once I got to BSGE centre that got changed to combined hrt which is recommended for those with endo whether or not you have a uterus.

Bluesea7 profile image
Bluesea7 in reply to Marcia71

Did you get pain again ect when it started to return.

Marcia71 profile image
Marcia71 in reply to Bluesea7

Yes. But to be honest pain had never gone after hysterectomy. So I never healed from that properly. But pain starting getting worse and that’s when I sought help.

Bluesea7 profile image
Bluesea7 in reply to Marcia71

Ok thanks for letting me know I'm not in any pain but I've gained a lot of weight and my belly looks quite big

Vps1980 profile image
Vps1980 in reply to Bluesea7

That could just be menopause xx

Bluesea7 profile image
Bluesea7 in reply to Vps1980

Yes that's what I thought as I am going through menopause, as the opp sends you straight into it when you have no ovaries ect .

Nikkky profile image
Nikkky in reply to Bluesea7

Hi, you can and should be on HRT as the health benefits are huge. It helps protect against dementia, heart disease and osteoporosis. No amount of vitamins will replace your essential hormones. You will need to be on oestrogen, progesterone and probably testosterone. Normally they don’t prescribe progesterone when you’ve had your uterus removed but we need it when we have a history of endometriosis to keep any lesions at bay. Honestly, don’t put up with menopause symptoms. A lack of oestrogen causes belly fat as we try to get more oestrogen from fat cells.

Vps1980 profile image
Vps1980 in reply to Nikkky

How did people survive before hrt then? I know a lot of 80/90 year olds who have never taken it xx

They survive but they don’t necessarily have good health. A lot of women accept their ailments and illnesses as just part and parcel of old age but lots can be prevented by replacing the oestrogen. Also, when you go into a natural menopause (ie. with uterus and ovaries still intact) you still produce some oestrogen post menopause. It varies between women and some probably produce more than others, hence why every women’s experience of menopause is different. Whereas if you’ve had both ovaries removed your oestrogen production stops. Your body tries to get oestrogen from your fat cells but it’s not sufficient.

Vps1980 profile image
Vps1980 in reply to Nikkky

We will have to agree to disagree I suppose, all the women I know are pretty fit to be honest, I won’t be pumping my body full of chemicals for something that has to happen xx

It’s okay, I’m not trying to convert you to HRT but it is body identical these days and made from the yam root so it’s perfectly safe. You can stay on it for the rest of your life if you want to. If you visit the Balance website it has lots of info and podcasts on menopause, endometriosis and HRT. It’s saved my life as I had horrendous menopause symptoms and couldn’t even function but it’s a personal decision.

Vps1980 profile image
Vps1980 in reply to Nikkky

I’ve tried it nikkky, it made my symptoms worse unfortunately xx

Nikkky profile image
Nikkky in reply to Vps1980

That’s a shame. The introduction of hormones can make you feel a bit rough initially as your body and brain adjusts but I’ve found the body identical HRT hasn’t made my symptoms worse. To be honest I couldn’t have been any worse! It’s just getting the dose right that’s tricky and most women need to gradually increase the dose to get rid of symptoms.

Vps1980 profile image
Vps1980 in reply to Nikkky

I’m in perimenopause and my estrogen always tests as high, I have too many symptoms to count to be honest, I don’t want to put more hormones in my body when certain hormones can drive endometriosis, I never had problems before perimenopause xx

Nikkky profile image
Nikkky in reply to Vps1980

I know, I felt like that after years of being on either the pill, depot injection, prostap or mirena coil- all synthetic hormones and not good. The blood tests are so unreliable during peri with the hormones constantly fluctuating. As long as you take progesterone it stops the oestrogen from flaring up endometriosis. If your symptoms do become harder to manage it’s an option anyway.

Vps1980 profile image
Vps1980 in reply to Nikkky

They can’t get any harder, I hope! So what exactly do you take? I might look into in meno but not right now xx

Nikkky profile image
Nikkky in reply to Vps1980

Bless. I was suffering for 3 years after my hysterectomy but just plodding on and then wham! My hormones dropped off a cliff one day and I’ve never felt so ill in my life. The psychological symptoms have been the worst-completely terrifying. I wouldn’t wish it on anyone. Anyway- I’m on body identical oestrogen patches, a body identical progesterone tablet called Utrogestan and a topical testosterone cream. I really recommend Dr. Louise Newson’s Balance website as it’s very informative and it’ll just prepare you in advance in case you feel you need to try HRT in future. Best wishes x

Vps1980 profile image
Vps1980 in reply to Nikkky

I’m super anxious everyday, how do you get prescribed those in the U.K.? Xx

Nikkky profile image
Nikkky in reply to Vps1980

The oestrogen and progesterone are available on the NHS through your g.p. You can get testosterone on the NHS but it depends on your postcode-I’ve had to go private for that. As g.p’s don’t do mandatory training in menopause it’s quite often a case of telling them what you want. The oestrogen will help your anxiety, it just takes a while to work fully. Best of luck!

Vps1980 profile image
Vps1980 in reply to Nikkky

You said it was natural from wild yams, that is just the progesterone isn’t it? The gyno advised me not to take estrogen as I have multiple fibroids, also progesterone is supposed to be the calming hormone and that drops first in perimenopause xx

Nikkky profile image
Nikkky in reply to Vps1980

Hi, both the body identical oestrogen and progesterone is made from yams. Hopefully this link will work as it explains a bit. There will probably also be stuff on the Balance website about taking HRT with fibroids. Progesterone is calming but I was so surprised to find out that oestrogen is calming too and improves low mood. If you’re peri menopausal you’ll definitely be low in all hormones. My palpitations and panic started to ease within 2-3 days of taking the oestrogen replacement. balance-menopause.com/uploa...

Nikkky profile image
Nikkky in reply to Nikkky

It’s hard to get your head around as oestrogen has caused me a lot of problems over the years and I was sort of looking forward to menopause, thinking it would help. How wrong I was! Unfortunately most health professionals are not educated in hormones, menopause or HRT and we’re left to figure it out ourselves

Vps1980 profile image
Vps1980 in reply to Nikkky

I will wait until menopause as my estrogen has been high in test after test, I don’t want to make any of this worse, most people in perimenopause have super high anxiety which fades in menopause, I know because I’ve spoken to numerous people, also I have allergies now, estrogen increases histamine and vice versa xx

Bluesea7 profile image
Bluesea7 in reply to Nikkky

Thanks

Hi I’m new here and just had my hysterectomy, with ovaries remain. This is my question also. I’m really worried that endo is still in my body. The pain I felt before my hysterectomy ( shooting pain down my legs) is back and I’m just 5 days post- hysterectomy. I hope it is just the residual pain from the operation.

If endo pain come back again I will consider progesterone injections. Have you had any experience with that?

No I didn't get shooting pain in my legs , I hope it gets sorted for you . Since my opp I've had no pain , just weight gain, but when ovaries are left you still experience symptoms.

Thanks I hope it gets sorted too. I’m glad to hear your pain has been all gone, I have hope yet

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