Looking for others who have had a hysterectomy with ovaries removed in their 30s - to get your experiences

[Shorty9]

Hi all, I'm looking for personal experiences of those who had a hysterectomy with ovaries removed in their 30s.

Little about me and why I'm asking.

I have been diagnosed with adenomyosis and endometriosis. Had a laparoscopy with removal of some endometriosis in May 22, also had the marina coil fitted during the lap which didnt help so started zoladex treatment in October 22 and feel so much better for it, i have some form of life back with far less pain (initally no pain for 5 months and some comes and goes now. Gone from an 8-10/10 for pain to around 2-4/10) (no add back hrt) I do however suffer from some medical menopausal symptoms.

I should have been seen by the NHS in March for a review, however with no end in sight for this review I have seen a private gynaecologist who has been great. We discussed hysterectomy (my choice to ask for this) as the thought of coming off of the zoladex puts the fear in me as nothing else has ever helped, i have suffered for over 10 years and my quality of life is just crappy to put it bluntly, I also suffer with Fibromyalgia and CFS (which has improved also with the zoladex) and I don't want to go back to that now that I've had a good run on zoladex, I have more of a life and have been happier and in far less pain. I am due to go back next week to put a plan in place for treatment. Which will potentially be done privately.

With this in mind I was hoping to hear from anyone who has had a hysterectomy with ovaries removed in their 30s. I am 35 with no desire for a family and happily married.

HRT is a big question for me - if its helped, how long you took it for, how your endo reacted to it etc etc. Basically any advice and your own experiences would be much appreciated as I've not really managed a peer to peer convo regarding this.

Sorry for the long message....Its hard to put it all out there to ask!

TIA

[Ninfrisby]

hey! No need to apologise for the long post as it can be quite a bit to put together. I was trying to think of how I can keep my reply short! Lol!

I had to reply to you as there were so many similarities between us, I too have fibro and CFS.

I had a hysterectomy with my ovaries removed last august, I was 34, no kids. I had adenyomisis (can never spell it), fibroids, endo and PCOS. My ovaries were in a bad state so my consultant advised it was best to remove them.

I had tried everything before this with the coil and all else never working for me. Like you zoladex with no add back really helped although I did struggle emotionally.

Having had my hysterectomy has given me the best last 9 months and I rarely take any pain relief now apart from for those fibro flare up days. I didn’t expect to be completely pain free and there are still better days than others. It does take time to recover. It’s also big surgery so give urself downtime to recover.

I’m also aware hysterectomy isn’t a cure for endo, as I’m sure you are, so I wait for the future but it has helped the other issues for sure. It’s a personal decision and this is just my journey.

HRT has helped with the menopause symptoms but again that’s affects everyone differently but now my dose is settled and it takes some months it’s ok.

Hope that helps, feel free to reach out if you want to chat. Hope the appointment goes well next week 😁

[Shorty9 in reply to Ninfrisby]

Thanks so much for your reply! I'm noticing a link between hormone imbalances inflammation and fibro and cfs, I was diagnosed with these back in 2015 before any gynae things were properly looked into! I knew I didn't just have Fibro or cfs so took me so long to get to here, but here I am!

I'm so pleased to hear its so far so good for you on the whole. Yes aware it's not a cure for endo, but having the double whammy of endo and adeno and nothing else except zoladex working I'm like you see what the future holds, I'm presuming (will ask at next consult) that further laparoscopy for removal can happen as and when needed?

With the hrt, If you don't mind me asking, what are you taking?

😊

[Ninfrisby in reply to Shorty9]

yes I know what u mean as it does it all seem linked, it’s a hard journey isn’t it and there doesn’t seem to much thought about joining it up.

I’m on oestrogel 4 pumps a day, I started on 2 and was upped to 4. I know there is some thought of progesterone being added in and testosterone but I haven’t needed that yet and have had reviews with gp etc. I think it’s where ur endo was but I’m really not an expert on all that!. For example my bowel luckily was never involved. I think the other issues were giving me more problems if that makes sense.

Yeah if there were issues I was told I could go back but he was confident I’d be better. I mean I’ve heard that so many times and haven’t so alway take that with a pinch of salt, so shall see.

You’re obviously giving it a lot of thought and I wish you all the best. 😁

[Shorty9 in reply to Ninfrisby]

I'm as sure as I can be with this decision. Just glad to hear you are having many more better days! Will let you know how I get on 😊 again thanks for taking the time to reply. It's helped to somewhat talk things through with someone who's gone through it!

[Ninfrisby in reply to Shorty9]

thank you. Yeah please do and any questions let me know 😁

[Marcia71]

I was 43 by time I had my hysterectomy and ovaries out. I did have adenomyosis too. I was originally put on oestrogen only hrt as done by general gynae. This made endo regrow so I’ve had 3 more ops to clear endo. I’m now on combined hrt and have been for 6 years. Had hyster 8 years ago. My mental health had really suffered until I got on right hrt combination so it can take time to find the right one for you. Fibro and CFS can all be due to hormone imbalance caused by endo. I was being investigated for both until I got on the right combination of hrt for me and then most symptoms went. So if you go for hyster and ovaries out I’d recommend hrt but make sure it’s combined and be prepared for it to take time to find the right one for you. Good luck deciding whats best for you.

[Shorty9]

Hi Marcia,

I'm really pleased to hear youve ended up in a much better place.

I do truly believe the fibro and cfs are results of the inflammation and hormone imbalances.

Yes, my gynaecologist has said it would need to be combined for that reason if this is the option we go for.

Good to know it takes some time to get it right.

Thanks for your reply 😁