What should I ask?!?!

[Pureunicorn]

Hi, hope your all keeping safe and as pain free as possible 😊

So after months of waiting and I cancelled appointment, I'm finally going to see my endo specialist to find out what they can do for me 😁

I'm hoping for a full hysterectomy, as I cant carry on like this, I'm on meds constantly and I'm now about to have my 3rd decapeptyl injection for medical menopause! 😭

So I know I have stage 4, a frozen pelvis, enlarged ovaries, thinking of large bowl, rectovaginal nodule, obliterated pouch of Douglas!!

Any advice on what I should ask them? As I think this will be my only opportunity to ask.

Thanku in advance xx

[Hidden]

Totally your choice honey but given I've just had open surgery hysterectomy try consider other options not only will you never have children but the pain afterwards is very very painful. Maybe ask them all options thy can remove endo also. Maybe different types of pain killers too. I hope you get the answers you want honey and hope all goes well xxx

[Pureunicorn in reply to Hidden]

Thanku for your message, yes I've been following your story, hopefully u will start to feel better sn and it will all be worth it 😊. I'm already on codeine, naproxen, paracetamol and Morphine and they have said there isn't anything else I can try 😫 I have 4 beautiful children so I think I have come to terms that I wont be able to have anymore.

I'm hoping for the hysterectomy as i just want it all gone now and hope it will help with the pain in the long run 🤞

I just want to make sure I ask all the questions I should, I'm trying to write them down as I know as soon as I get in there my mind will go blank and they will say there bit n that's it 😂

I do hope u are starting to get the pain under control, did u get the Morphine in the end? Sending hugs xx

[Hidden in reply to Pureunicorn]

If your family's completed it really should be your choice. I was offered it but that is what I wanted anyways I totally get you living a life in pain and on pain killers is no life is it. If that's your only option in your head then ide be straight to the point and tell them that's the only answer. How old r u? Although I think they take age in to consideration alot but I think it's the circumstances that should be considered not just "oh your to young" yes I got morphine prescribed as it should have been initially but can't collect it until tomorrow. Thank you if I knew how much pain I would have been in afterwards don't think ide have gone through with the surgery lol. Sat here holding my tummy about to scoff double choc cake 🐷🐖 when your app xxxx

[Pureunicorn in reply to Hidden]

Choc and crips are gd when ur feeling crap 😆 I'm 38, when I first saw them last year I said I'm happy to have a hysterectomy, my appointment is Thursday at 5pm, I've still got to have an appointment with the colon department so they can tell me what they need to do too, as they will be involved with the op too! I called them a couple of months ago to see if I'm on the list n was told 'there is a situation at the mo!' Like I didnt know that 🙄 just wanted to see if I was on the list lol🙃

Hopefully when u get ur Morphine u will start to feel abit better and it will help u get some sleep too xx

[thara9643]

Ask about treatments for endo. Also ask them some questions about how to stay healthy too. Questions relating to operations and test results would not go amiss either. Take a list of symptoms that concern you. And a pen for note making.

[Pureunicorn in reply to thara9643]

Thanku for ur reply, I'm going to ask what all the results mean for all the tests and if there are any other options, I'm hoping cos the menopause injections has sort of helped that that means a hysterectomy would help 🤔 defo will take pen n paper and I've just found out that my husband can come with me too 😊 xx

[Sheep2016]

For me, actually after my open hysterectomy operation, pain thereafter is a bygone. Only for the first week or so, after all it is the body was cut deep and organs, removed. Now, going into 4th year since, I have a full life back and without the monthly pain too. Yes, age is a big factor in consideration, especially if you still plan for a bigger family. One thing I believe, I could not live on pain killer for the rest of my life then, and felt like being drugged 24/7, as my dose picked up. It is a big operation and it will truly be a personal choice and how you prepare for it.

[Pureunicorn in reply to Sheep2016]

Hi thanku for ur reply, that's such gd news that it's worked for u, I just hope it's the same for me 🤞 I'm hoping that cos the menopause injections have helped some with the pain, that a hysterectomy will be the best thing, like u I just dont want to be on meds for the rest of my life! It's just fingers crossed for what they will say on Thursday xx

[Sheep2016 in reply to Pureunicorn]

Glad that you find some comfort and encouragement. I read many advices online and many were very helpful during the process and I am very thankful to each of them. Remember to prepare for a recuperating place after returning from (operation, if you have) and find a grocery delivery arrangement even if you chose to walk there as an exercise after. It will be a big help if you no other alternative. I have heard that the best thing one could have done in her life about it. After all having no active life is really, really tough too.

[Gingernut74]

Hi,

Yes I’ve also had a TAH and unfortunately it hadn’t cured the pain, it came back within 4-5 months, I’ve since had adhesions removed due to this - then again 4-5 months I’ve gotten pain back although they’re baffled why as there’s nothing left there??

Will be awaiting another appointment, but has got me worried 😟 that it’s in my head 🤷‍♀️, but they removed quite a lot this year so I’m sure it can’t be?

Def try reflexology & reiki as helped so much, thankfully I’ve now made sum appointments & can’t wait to get back to them & try cbd oil, & increase anti inflammatory foods & decrease foods that cause inflammation too, which means hardly any alcohol which I’ve had a lot of in lock down 🤦‍♀️.

Wishing you good luck & lots of pain free days as much as possible.

[Pureunicorn in reply to Gingernut74]

Hi, thanku for ur reply, sorry to hear it's not helped, can I ask did u try the menopause injections? I'm hoping that cos they have helped with my pain (aswell as meds) that a hysterectomy will work, I just hope I can get all my questions answered and get the ball rolling! Xx

[Gingernut74 in reply to Pureunicorn]

They did for a few months I think?? Think I had 11 of zoladex once then about 6-7 of decapeptyl? Not having periods was nice but I used to still up having the pain I’d get around ovulation time which was the worst & longest & then when I would normally have my period, they did say they didn’t think surgery would benefit me I’d tried absolutely everything they wanted me to try so I felt there was no other option? But I was peppered lightly everywhere with it & no endo specialist round Norfolk/Suffolk had this tool - Helica I think? & waited sooo long I was worn out with it all.

It’s so hard because not everyone is the same & ive heard of good results on other people, I asked my consultant yesterday do I have to put up with this in my 50’s, 60’s & 70’s etc - he helpfully said ‘I can’t answer that’! 🤷‍♀️🤦‍♀️

[Pureunicorn in reply to Gingernut74]

I used to be in constant pain, I couldn't do anything, but the menopause injections are helping, but I can feel that the more I have the less it helps, bowel movements can be a nightmare and I now have to take stuff to help me, I know it's getting worse as the pains change, I was diagnosed at Ipswich but they would touch it so I'm now under colchester as they have a specialist unit, but I feel I've started at the bottom of the list again 😭 sometimes I find them so unhelpful, hope u find something that helps and thanku for taking the time to message me, its nice to know I'm not alone and can find women in the same situation to talk too xx