hysterectomy advice

[KTe23]

Hi,

Can anyone offer any advice?

I have grade 4 endo affecting both my bowel and bladder too. I’ve started GNrH injections (had 4) and saw the consultant today for a review and to discuss surgery. Surgery would be a complete hysterectomy but obviously there would be assistance from potential other teams (colorectal team).

Has anyone had the surgery and if so any pros or cons?

The injections work so far as to my periods are very slight and much less period/ovulation pain. However still can get horrendous flare ups where the pain is beyond horrendous.

Any advice welcome. I’ll see the consultant in another 12 weeks to decide what to do.

TIA xxx

[AlexaMac]

Hi l have not had the injections but had 2 hysterectomy within about 10 weeks.

I found the experience a little daunting at first but honestly l could not be happier with my treatments.

The first was a partial the second to complete as they found a tumour in my womb lining when it went to labs.

Allow yourself time to breathe but if a hysterectomy is offered l would seriously think of going with it.

If you would like to ask specific questions about preparing and for when you return home l will check back tomorrow.

Alexa 🌸🌸🌸

[Goiaba in reply to AlexaMac]

Are your ovaries gone too! If so how are you finding the menopause and hrt? Xxx

[AlexaMac in reply to Goiaba]

Oh thank you for this yes all l have left is my vaginal tube, menopause does not apply to me as l am 77 years of age.

Have a good day and hope you are doing well

Alexa 🌸🌸

[Goiaba in reply to AlexaMac]

Oh thanks for answering! Can I please ask (don’t need to answer if it’s tmi!) but why did you need a hysterectomy after menopause? Did your symptoms not ease after your periods stopped? Xx

[AlexaMac in reply to Goiaba]

Hi, not a problem, l began bleeding when l was 75 years of age, after much hassle with first consultant and a partial hysterectomy they found cancer in the lining of my womb, then they completed the hysterectomy soon afterwards.

You can see my journey if you tap on my name above.

Hope you soon have answers and are well on your way back to full health.

Alexa 🌸🌸🌸

[Bookish_Girl]

Hi

I'm in the same position as you. Had an initial consultation back in June where consultant explained that a straightforward hysterectomy would not be possible due to the bowel endo. I have continued with the Zoldex which was working well to start with - now in about month 5 and am getting breakthrough bleeding and an increase in the pain. Which combined with the hot flushes are an inconvenience.

My next appointment with the consultant is due in Sept. so starting to get a list of questions to ask so I can make a decision on the hysterectomy.

Have you been offered HRT with the GNrH injections?

[KTe23 in reply to Bookish_Girl]

I was. Same day I started the injections and I do think it’s helped x

[Endofighter80]

I have stage 4 endo awaiting a total hysterectomy and a bowel resection which will leave me with a stoma bag.... I am so scared

[Tulip1983 in reply to Endofighter80]

I've just been referred to an endo clinic and am scared that I'll be told that this is my potential course of treatment. I'm very scared too so can really identify with you. I think we need to take one day at a time but it's very difficult and I know I'm feeling very alone at the moment. Sending love and best wishes. xx

[AlexaMac in reply to Tulip1983]

Hi Tulip, perhaps you have already had your procedure, but just in case l am offering a listening ear if this will help, l am 77 and have had a journey of almost 2 years but am now in the care of an outstanding cancer specialist which was one of the causes of my post meno bleeds,

If you would like to reach out l check my emails daily, mostly in the late evening.

Alexa 🌸🌸

[Tulip1983 in reply to AlexaMac]

Thank you so much, Alexa. I've got my first appointment at a specialist endo clinic in mid-Oct. I think I'm scared of the unknown more than anything else. They doctors have identified endo on my uterus, ovaries and bowel and suspect that I also have adenomyosis. They've suggested that the next step could be a sigmoidoscopy. It all sounds a bit scary!

[KTe23 in reply to Endofighter80]

Sending love xx

[AlexaMac]

Hi sigmoidoscopy is not something l am familiar with, l had a hysteroscopy before my first operation, they found endo in my cervix at this point, but my womb was completely closed so they could not proceed further at that point.

If you would like to chat some more will check my emails tomorrow. Please stay strong and l wish you a speedy journey back to full health.

Alexa 🌸🌸