Recovered from Endometriosis: Just wanted... - Endometriosis UK

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Recovered from Endometriosis

Starbrydge profile image
17 Replies

Just wanted to share that I suffered badly with Endometriosis for years and had a radical hysterectomy last year and am now clear of endo. Had the hysterectomy as had cervical cancer but see that now as fortunate as I probably wouldn't have had the hysterectomy otherwise even though I was threatening to have one for years!

Until you are free of endo you have no idea of how much it actually affects you. The difference is amazing and if I could turn the clock back I'd have had the hysterectomy years ago.

Just wanted to say this in case there is anyone considering a hysterectomy. I know it's not an easy decision especially as ovaries have to go to stop endo (as far as I know). However when I had endo I knew it was bad but I didn't realise what full health felt like until literally the week after my surgery. I had a robotic hysterectomy and it was such a painless procedure and recovery was amazingly fast.

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Starbrydge
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17 Replies
Jessicaseven profile image
Jessicaseven

Wow, that is such great news for you! Am pleased there is someone out there that's recovered.

Well done! X

Thanks for sharing x

louisianna profile image
louisianna

thats just what I needed to hear! I am going for a radical hysterectomy tomorrow. I had the opportunity 4 years ago when I had 1 ovary removed, and I bottled it. When symptoms returned I deeply regretted that decision. So heres hoping for a new life! Thanks for sharing your story.

Starbrydge profile image
Starbrydge in reply to louisianna

Best of luck with your recover. I wrote a lot about it after so if you want links to read let me know or just look in the hysterectomy section in starbrydge (dot) com where I write on that.

louisianna profile image
louisianna in reply to Starbrydge

Thank you. That will be a help.

ap2014 profile image
ap2014

That's wonderful news. Congratulations! I wish this worked for all of us. I've had Endo outside my reproductive organs since before I was diagnosed so it would only be a partial help to me.

Starbrydge profile image
Starbrydge in reply to ap2014

Hi there

My main endo issues were in bowel and somehow all is cleared up now. I know they didn't operate on my bowel, just removed all the patches around as far as I know and so far so good!

dabba76 profile image
dabba76

That's a wonderful story. I am so pleased for you. May I ask how old you are? x

Starbrydge profile image
Starbrydge in reply to dabba76

Am 45 but a young 45 (!) and wasn't near menopause so I do understand that it's still a big decision as plunges you into menopause and hrt not recommended for endo as far as I know. I can't have it anyway for other reasons.

Also for younger ladies who want to get pregnant then it's a whole other story and of course a big decision. My only advice is if possible find out if you can get pregnant. As it turned out with the way mine was located I don't think I'd ever have had any possibility of pregnancy.

Mistiek profile image
Mistiek

Wow... Thank you for sharing... I found out last Friday that I have adenomyosis as well as endo and will need a hysterectomy. I welcome it as I have a friend who had endo and ca and had to have it removed like you. She has said the same... she said even though we suffer daily we don't realise just how much until it's all over. She said the difference is amazing. I know it's not a cure for everyone though...

I can not wait for my time to come... I have had the worst pains to date yesterday that left me on my knees... I'm an emotional wreck today and wish I could just fast forward the next few months so it can all be done...

I'm only 36 but have my kids... so im happy to have it done, but it's not without its risks and it's a scary decision to make!

Starbrydge profile image
Starbrydge in reply to Mistiek

Yes it is. Very scary but for me it was getting to the point that quality of life was really being affected. It's also worth putting effort into choosing a surgeon you can trust as their skill at removing all the small bits is a big part of how successful or not the endo part of surgery will be

Sweetyassi profile image
Sweetyassi

Wow! That's really good news, I'm happy for you.

Linds123 profile image
Linds123

Hi I'm 32 and need to have both ovaries removed, I have an appointment next month to discuss it all but have it booked for December - my birthday unfortunately :-(

My mum has suggested that I consider having everything out at the same time which I'm going to discuss with the surgeon but I just wondered what take people had regarding hrt?

My mum had a hysterectomy at 36, never looked back but also never took hrt as she used homeopathic remedies. I've been reading up on the creams available but not sure whether they work all that well and know that my consultant probably won't be too impressed when I announce this. Particularly after crying in front of him, another doctor and the ward manager about having zoladex whilst they thought it was because he had told me I couldn't have children - I think they all thought I was nuts!

Any experiences people have had would be greatly appreciated x

Starbrydge profile image
Starbrydge in reply to Linds123

Do you have endo? If so, particulalry if it is outside the uterus, then as endo is affected by oestrogen hrt isn't always an option but you would need to discuss this with your consultant. Also you could look at bioHRT

Linds123 profile image
Linds123 in reply to Starbrydge

Thanks for responding, I do have endo but I don't know how much is outside of the uterus. My ovaries, bowel and uterus are all fused together and I know they removed all the patches they could see in January and on 29 August they did another lap to drain some cysts and confirmed it hadn't spread into my stomach (one of the cysts was 14cm and as a result quite high into my stomach). I will discuss with them when I see them next month and will look into biohrt. Thanks again x

simm profile image
simm

hello....i had end and hysta a month ago i have stent in i feel gross........ pressure pains...i have l5 disc sciatic nerve ..... does anyone else have this.....

simm profile image
simm

hello....i had end and hysta a month ago i have stent in i feel gross........ pressure pains...i have l5 disc sciatic nerve ..... does anyone else have this.....

simm profile image
simm

hello....i had end and hysta a month ago i have stent in i feel gross........ pressure pains...i have l5 disc sciatic nerve ..... does anyone else have this.....

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