Judan5 years ago

That's a pretty big decision to make.

Is the surgeon BSGE?

Usually it would need a total hysterectomy along with ovaries and cervix, and endo excision. I suggest you call the endometriosis uk support line to talk this through.

Recovery will depend on what they take, I had a total hysterectomy and endo excision and was told 8-12 weeks(7weeks into recovery now)

You will need loose comfy clothes and a nightie . Peppermint tea and walks for gas.

Let us know how you get on, big hugs xxxx

Laura9212 in reply to Judan5 years ago

It's a real tough decision to make.

No it's just a normal gynaecologist at my local hospital. What hours are the helpline open? I have to go in for my surgery tomorrow.

Thank you for your help and advice it's really helpful to hear it from people first hand.

Do you have to stay in overnight after having it done?

I'm really grateful for your message and I hope your recovery is going well xx

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S-Joys5 years ago

Hi, I had my first lap three weeks ago for stage 4 endo (it wasn't for an emergency though but I do have extensive endo and bilateral cysts) but a hysterectomy was never mentioned. Are you sure this is completely necessary? Even with your two babies, make sure you are given time to make that big decision.

Best of luck with the laparoscopy. I stayed in hospital for two nights and I must say three weeks later, I'm feeling so much better. Dr suggested 4-8 weeks off work. The first week was tough but by week 2, I was able to get up and move around. Take it easy though and don't rush recovery xx

Judan5 years ago

endometriosis-uk.org/helpline 0808 808 2227.

Open until 9pm tonight xxxx

Stellauk5 years ago

I had severe endometriosis and surgery. Did not need hysterectomy. If your endometriosis is severe you should be referred to a BSGE centre and not treated by general gynaecologist. Please check my post with the link on new NICE guidelines. There are major side effects for you to have a hysterectomy at such young age. You really need to discusse this further. Tomorrow seems too rushed! Endometriosis is not cancerous so there is no need to make rush decision.

Aialma in reply to Stellauk5 years ago

Hi, which mayor effects please? I would like to know as I will have an a hysterectomy done in one of my ovaries and they told me there is none unless you have both ovaries done

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Aialma in reply to Aialma5 years ago

Sorry my mistake I'm not going to have an hysterectomy, I will have an salpingo-oophorectomy

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Judan5 years ago

I had a diagnostic laparoscopy in May and went home later that day. My second operation was 7 weeks ago, a total hysterectomy and endo excision, stage 4. My ovaries had a chocolate cyst and where stuck together behind my uterus which was stuck to my bowel, which was stuck to my back. I had adhesions everywhere and adeno too. Uterus had one large fibroid near the cervix and a few small ones.

If you have a hysterectomy you will be in hospital for about two days.

I would really think about this before tomorrow and hope you manage to speak to endo UK, as even if you do need the hysterectomy it should be carried out by a BGSE specialist .

Let me know you get on xxxx

joreilly5 years ago

I had this surgery back in March and I can only echo what the other ladies have said - please, please, please do not agree to a hysterectomy before you've even had a confirmed diagnosis, even if your disease is severe. There is more to this than just fertility - it will affect your continence, your sex life and your long term physical and mental health. That's not to say that a hysterectomy is not the right choice, but it absolutely is NOT something you should be rushed in to like this.

If your disease does turn out to be severe, then you need a bsge accredited surgeon and not a general gynae. You may also need a specialist colorectal surgeon and a urologist. Please also don't feel like everything has to be done in this surgery because it does not. I had very severe disease with bladder, ureter and bowel involvement and it took 3 surgeries to sort it out. Despite it being made clear to me from the first surgery that a hysterectomy was needed, I was not rushed into it and my consultant was very, very careful to make sure that by the time I had the hysterectomy I understood what I was consenting to, and gave me the opportunity to change my mind every step of the way.

A hysterectomy means the removal of your uterus only and this will not help unless you have adenomyosis. If your uterus is removed and endometriosis tissue is left behind, you will continue to have problems. If you haven't been given bowel prep, that means they can't operate on your bowel if they find bowel endo (not that a general gynae should do this anyway). Stage 4 endo does not automatically mean that you have to have a hysterectomy. It depends what disease you have and where it is.

I appreciate that the surgery is tomorrow and backing out would be incredibly difficult but I can't stress strongly enough that you shouldn't go into this surgery not knowing if you're going to wake up with your uterus. A hysterectomy is a major surgery with a long recovery and needs to be properly planned and prepared for.

Please take care of yourself and don't consent to ANYTHING unless you are 100% sure and completely trust your consultant.

S-Joys5 years ago

Laura9212 how did everything go? I really hope you got the help you needed and weren't rushed into making any life changing decisions. Best of luck with your recovery x

AllWeNeedIsluv5 years ago

How are you hun. Hope your OK and you weren't under pressure to make such drastic desicions. Iv just read your post it's heartbreaking tov think at your age you would have been told by general gynae they may perform hysterectomy. Hope you took advice from the lovely ladies and your OK hun. Get in touch when you can 😘

rachel19695 years ago

Hi Laura

How are you ?

Hopefully your resting .

I too had servere endo,and was asked to sign a consent form at the possibility of having a total hysterectomy.I was 23,and yes I ended up having a total hysterectomy and was cut quite excessively.To no surprise I was the youngest by far on the ward however I did recover the quickest ,I ended up washing the other patients hair .I was in for 5 days ,I felt well enough to go back to work after 4 weeks but until I'd had my 6 week check I wasn't allowed to.

I had an implant of HRT for 10 years and various other HRT ,but I'm now 48 ,and all is well .

One positive is no periods .

Accept any help that is offered

Take care

Keep in touch with your recovery

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