Has any of you had a hysterectomy or waiting for one? 💜

[Heartof3]

Hello ladies💜

After years of battling in pain & trying all sorts of pills, meds & coils & physio. I have finally been put on the waiting list for a hysterectomy. This feels the last resort for me, But I have tried everything & my womb pain is ruling my life now.

Can i please ask anyone's experiences.

*did you feel better after having a hysterectomy?

* how long did you wait on the NHS waiting list ?

Any stories, tips & advice is really appreciated 💜

[claudia_91 Moderator Endometriosis UK]

Hi Heartof3

Lovely to hear from you and thank you for sharing your news with us. This is a really difficult and brave decision to make for you and your body 💛 I think we can all understand where you're coming from.

A hysterectomy is a life-changing procedure and I want you to know that there are people to support you. The Endometriosis UK helpline is open and run by volunteers who have endo and are happy to listen. The rota is here: endometriosis-uk.org/helpline

I'd also like to share with you an Information Pack on Having a Hysterectomy (scroll down to page 5 for the preparation and recovery tips): endometriosis-uk.org/sites/...

I hope that you'll find these resources useful, although it's not the same as speaking to someone who has had a hysterectomy themselves. Hopefully other members of the community will be able to chip in too 😊

Wishing you all the best.

Take care,

Claudia

[Heartof3 in reply to claudia_91]

Aww thank you so much.I really appreciate this. I will have a good read.

You take care too 💜 x

[EndoSuckss]

I had a hysterectomy in December 2021 so I'm now 6 months post op - although I also had adenomyosis too, which is why I needed the hysterectomy.

It was a hard recovery, but I absolutely don't regret it at all - it's been life changing so far!

Can't comment on NHS waiting times as mine was done privately, but my local trust said at least 12 months when I was referred

[Heartof3 in reply to EndoSuckss]

Thank you for your reply 💜 I have Adenomyosis too, which is why i am having a hysterectomy. It's awful isn't it 😖

I so gladto hear you found relief after your op.

The thought of menopause scares me, but I'm nearly 40 plus they are leaving my ovaries so wont be sudden x

[Em_46]

HiI was diagnosed back in Nov 2019 and have been waiting for a hysterectomy since then. I have seen the consultant during that time but I'm not hopeful that I will be having the operation this year either. I'm based in Hampshire

Hope that helps?

Em

[Heartof3 in reply to Em_46]

Thank you for your reply. Wow that's a long wait 😲 bless u x

[Auntyhay]

Hi..I am awaiting my date now..I spoke to my consultant about a month ago and he said 4 weeks, but I had COVID so it's delayed it by 2 weeks as they say need 6 weeks after COVID before surgery..I had my pre op assessment and bloods and have my pre op drinks ready..so for me it could be in the next 2 weeks just waiting for an admission date. ..I'm on zoladex injections whilst waiting due my 5th next week...I'm having full pelvic Hysterectomy and ovaries removed too..so recovery will be difficult and will need HRT until at least 51 I'm 39 tomorrow so a good number of years which is a concern too..hope you get sorted soon x

[Heartof3 in reply to Auntyhay]

Aww bloody covid! Not long now tho!! I've been offered zoladex injections too? Have they helped you?

So nerve racking, such a big thing for us to go through.

Please keep us updated how you get on 💖

[Auntyhay in reply to Heartof3]

The zoladex has helped which is why they are taking the ovaries too .I've had limited pain and other issues I was getting with bladder etc which is good..I will keep everyone informed I share my experience..

[Heartof3 in reply to Auntyhay]

Aww that's good then. Hope all goes well for u

[Girlfriday1970]

I had total hysterectomy and ovaries removed as well as excision of extensive endometriosis 8 weeks ago. I'm 51 and needed to get back on HRT as sudden Meno symptoms were awful. Feeling much better now and no regrets for me so far. Was waiting over 2 years due to pandemic. Hope you don't have to wait too long. X

[Heartof3 in reply to Girlfriday1970]

Oh bless you. Thank you for your reply 💜

I'm glad ur feeling better.

Did you have to stay in hospital for ling after?

[Damby]

I had a hysterectomy in 2019 aged 33. I have four children already, adenomyosis and endo. We opted to keep my ovaries because of my age and the implications of long term HRT use. Surgery recovery wasn't a walk in the part and it offered me a few years of relief. I was losing more than 600ml of blood each period and needing transfusions to stay upright. That aspect is definitely sorted HOWEVER I am back to square one with seven days of endo pain, like clockwork every month. Being referred back to my endo unit, but research shows that there is up to a 60%+ chance of endo reoccurrence after a hysterectomy. I don't think anyone ever told me that at the time, and the relief from the adenomyosis is definitely worth it, but I just just that you should be aware that its not a full proof solution. Happy to chat more about it if it sounds similar to what you've experienced.

[Heartof3 in reply to Damby]

Aww thank you so much for taking your time to reply. Sorry you're back to square one 😞 bless you.My pain is all Adenomyosis. They said they will leave my ovaries too.

Just such a scary decision to make, isn't it.

Xx

[Damby in reply to Heartof3]

My surgery certainly improved that and the quality of life I gained was so well worth it.

Please discuss the likelihood of them finding endometriosis while there are "in there" with them so that you are prepared if they do, which I obviously hope they will not!

Good luck!

[Heartof3 in reply to Damby]

Ah that's good to hear.I did i have a laparoscopy that only revealed Adenomyosis, luckily!

So it should all be straight forward.

Thank you so much 💜