Some advice please

[P9LON]

Hi everyone, so in the last year I’ve had 2 laparoscopic ops to remove ovarian cysts and removal of one ovary. I have severe endometriosis, had the mirena coil fitted and am currently on Zoladex. A recent MRI has now shown that the endo has spread to my bowel and that my uterus is stuck to my bowel. My consultant has advised that my options now are to have a hysterectomy and/or possible bowel surgery. He is reluctant to do the hysterectomy because of my age and I don’t have a family. Has anyone else been in this situation? If so, what did you decide to do? Thank you

[NW248]

I was past child bearing age by the time I'd been diagnosed and had a hysterectomy. But frankly, endo ruined my entire life, it ruined my career and I still have health problems because it was left so long. I couldn't socialise much for most of my life due to feeling ill so much, so never settled down with anyone. If I'd been diagnosed early on, even if that meant having a hysterectomy, I'd have happily adopted. I missed that opportunity.

Just make sure you get referred to someone on the BSGE list as they are the only people who should be dealing with endo where there is some bowel involvement.

[Ggrif]

Hi, I also had endo and adenomyosis. I was 37 when I had my hysterectomy which was now 5 months ago.

I feel like a new woman, I put up with so much pain and couldn't carry on day to day life in so much pain.

I am slightly different to you as I already have children so hard for me to tell you to go ahead with the hysterectomy.

I'm really sorry to hear you are suffering so much, I really know your pain and hope you get this sorted.

If you need any advice or info about a hysterectomy then please do message me back.

Gemma

[P9LON in reply to Ggrif]

Hi Gemma,

Thanks so much for your response. I think in my mind I’m going to go down the route of the hysterectomy. I know it won’t cure the endo, but if it gives me some relief from the pain, even for a while, it’s something I have to do to get my life back. I’m so scared though 😢 I hope you don’t mind me asking some questions…? Did you have yours done via key hole or open surgery? How long were you in hospital for? How are you now dealing with the menopause?

Thank you for your time

Loni

[Ggrif in reply to P9LON]

Good morning loni

I really feel for you, I am honestly not in any pain at the moment,

So I had the hysterectomy done in August 2021, via key hole. I was only in hospital 1 night and the pain was honestly nothing compared to what I was going though, I did the 2 week bed rest which flew by and to be honest I felt like I didn't need it but my gyne said I must rest and literally do nothing. So thats what I did, I went back to work following that and ever since I've been fine, I get the odd swinge from the key hole scars but that's absolutely nothing! So I kept my ovaries so no menopause which is good, my breasts hurt once a month and that's pretty painful to be honest but again nothing in comparison.

If you have anymore question then please don't hesitate to ask.

Gemma

[P9LON in reply to Ggrif]

I’m so pleased to hear that it’s been a positive experience for you. Mine is going to be a total removal, so dreading the menopause side of it!

I hope you continue to keep being well 😊

[Ggrif in reply to P9LON]

A very good friend of mine had a total hysterectomy 2 months before me, she also had the cut rather than key hole. She took longer to recover than me but she totally says the same as me and feels like a new woman! Her recovery took almost 2 months. But that was to get her fully back to work. She was out collecting her child from school after just 3 weeks. Oh and also she went straight onto hrt patches and she she said they are super. I've just contacted her and asked her so many questions for you lol. Good luck with everything.

[P9LON in reply to Ggrif]

Oh Gemma, thank you so much. I really do appreciate that. It’s just reassuring to hear how others have dealt with it 😊