ok.So its a hysterectomy.Soon too.Thing i... - Endometriosis UK

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ok.So its a hysterectomy.Soon too.Thing is they want me to leave my ovaries.Is that a good idea.?

littlestar profile image
8 Replies

Seen consulatant today,Need hysterectomy for endo.Its in my back,bowel and bladder.Was prepared to loose everything but they want too leave ovaries as i am 35.Should i?I know they say it can come back but my mum took this route and she was fine.

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littlestar
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8 Replies
missteal profile image
missteal

hmmmm, from what I know about endo it's the ovaries that produce the estrogen. Estrogen is what makes the endo grow so if you've got it in your bowels etc then just having the womb removed might not help! It's the same as taking HRT after a hyst. Did your mum only have endo on her womb? if so it would've helped her but as you have it on your other organs then leaving your ovaries could make it come back :( 35 isnt that young for a hyst, my mates mum had it all whipped out at 28 due to endo and she's still fine now at 60! It's worth talking to the consultant about it. If they wanna leave your ovaries for now then they can always remove them once you reach 40! Good luck hun x

littlestar profile image
littlestar in reply to missteal

My mum had in it on her bowel 2.Just wasn,t one i expected as total pelvic clearance was mentioned,but they made it clear they want to leave the ovaries

smiley1 profile image
smiley1

I had endo in pod, urethra as well as on ovary. I was offered a hyst at 35 but was told they would leave the unaffected ovary due to age. Must stress consultant was not an endo consultant and I agreed to this because I was in so much pain and hoped I would not have any reoccurrence. Had the surgery and within a year after being seen by an endo consultant had a further lap to remove more endo/adhesions but would not remove endo due to age!! Waiting now for a further lap to remove endo/adhesions and finally my ovary (now 42). You really need to speak to your consultant. Good luck.

Miwa profile image
Miwa

Hi little star,

This is what Mr Trehan says about removing ovaries. I had a total pelvic excision including bladder, urether and bowel with him. He was very adamant on women keeping their ovaries:-

In other situations, following ineffective medical and surgical treatment of endometriosis, many patients may be prescribed a hysterectomy (removal of the uterus) and bilateral oophorectomy (removal of both ovaries). The logic behind performing a bilateral oophorectomy is that by removing the ovaries, one removes the hormones secreted by the ovaries which in turn should relieve endometriosis. However, such a means of treatment may be ineffective and is associated with a variety of adverse irreversible and long term effects:

•Many patients still experience pain following a bilateral oophorectomy, as a bilateral oophorectomy does not remove the endometriosis itself.

•Since the ovaries are responsible for producing the ovum (egg), by removing the ovaries, permanent infertility occurs and patients will never be able to conceive.

•The ovaries are responsible for producing the sex hormones oestrogen and progesterone. Further, even after natural menopause, the ovaries produce significant quantities of the male hormones androstenedione and testosterone which are converted to oestrogen in the female body, and these hormones are important for a woman’s health. Since a bilateral oophorectomy results in a loss of these hormones, it causes:

•Early menopause resulting in menopausal symptoms (hot flashes, night sweats, lack of sleep, vaginal dryness resulting in painful sex, depressed mood, lethargy/irritability, impaired body self image). Unlike natural menopause, these changes caused by a bilateral oophorectomy are abrupt and dramatic due to the sudden loss in ovarian hormones.

•A variety of deleterious effects on a woman’s long term health including an increased risk of: premature death, cardiovascular disease, cognitive impairment or dementia, Parkinson’s disease, osteoporosis and bone fractures, a decline in psychological well-being and a decline in sexual function.

•In order to try and mitigate some of these deleterious effects of a bilateral oophorectomy, Hormone Replacement Therapy (HRT) is usually prescribed, especially in young patients. However, studies have shown that long term HRT use significantly increases the risk of cardiovascular disease, strokes, deep vein thrombosis (DVT – clots in the legs) resulting in pulmonary embolism (potentially fatal clots which migrate to the lungs) and breast cancer. Further, long term HRT use increases the risk of endometriosis recurrence.

xx

Chrissie66 profile image
Chrissie66

Dear Littlestar

Go to Google and type in "Does hysterectomy cure endometriosis?" and see what answers come up

As missteal said, if you think about it - if your endometriosis is on your bowel, back and bladder, how is removing your womb going to help?

Incidentally, even if you have a hysterectomy and full excision (removal) of all of the endometriosis, it can still come back and very probably will. Especially if you are taking HRT because you are too young to have hit natural menopause, and especially if so many of your other organs are involved. Speaking from personal experience, the surgeons who are lauded as miracle workers in this field don't tend to mention the women they have turned down for treatment because they know it wouldn't work. If that's you, you'll have gone through a major operation with all of the risks that entails for nothing.

Have you had children yet? If you have, are you likely to want any more?

At the end of the day, it's up to you, and seeing as your mum was lucky it may well be that your genetic makeup means that you would be similarly lucky. But please, please don't go into it lightly. Who knows, any kind of breakthrough could be made in endo research over our lifetimes, but you'll never get your womb back. Speak to your consultant and ask him exactly how he thinks a hysterectomy would help you, listen to what he says, ask him more questions if you're not sure and then make your mind up.

Lots of love

C xxx

uglyduckling profile image
uglyduckling

Dear Littlestar,

In the end the decision is up to you, Endometrosis depends on the type of person so one thing might help and cure other people but it wont work on every one.

If you do not know whether to accept what your consultant is saying then you can always get a second opinion.

Give me a message if you would like to talk.

stevieflp profile image
stevieflp

Hi, I have to agree with Miwa as I also had total radical excision with Mr T. I had stage 4 endo absolutely everywhere and was in a 'total mess'. I have now been absolutely A1 ok for the past 19 months since. It really is amazing and I am glad I did not go on the advice of my first gynae consultant who tole me my only option was a hysterectomy and removal of the ovaries. Now I don't need pain killers or hormone replacement treatment. n Yep, I might get endo back again eventually but, if I do, I will certainly have the radical excision done again all keyhole. I am aglad I avoided a hysterectomy and oophrectomy. Having said that, life is a lottery and I could end up with ovarian cancer and wish I had taken a different decision.

You need to go with your own gut feeling of what feels right for you.

All best wishes

daniellewright profile image
daniellewright

Hi, in my opinion it is a 'YES'. I had a TAH for adenomyosis just over one year ago, and I am glad I kept my ovaries. If it helps a little, please feel free to read more adenomyosisadviceassociatio... Kind regards, Danielle x

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