Advise

[Adeno2020]

Hi ladies

I hope your all staying safe, this time is so hard for everyone especially those who are dealing with pain, chronic illness’, delayed ops etc.

Just a quick question really;

I have a phone appointment today with my gynaecologist. As I’ve had a rough few weeks, I really want to opt for the hysterectomy. I need to be as healthy as I can for my little girl to run round the park, be able to go swimming etc. (Hysterectomy as I have adeno elsewrll) although I don’t have endo diagnosis yet she’s so sure I have it ! I know all my pains won’t go with hustectomy as it doesn’t cure endo BUT having the two together surely it would minimise my pain ALOT

Any advise on what she may ask me or how to go about getting it or option I could try before? I’m 23 I’ve had a happy healthy beautiful girl I’m so lucky to of been able to catch! I don’t want anymore children as I don’t want the risks that come with it all the sadness of losing etc etc or even sadness of trying at it never happens. She really have completed my family unit and we’re happy as we are. Also I had a bad time after birth with sepsis from a uterus infection. (I’m sure it’s because of adeno) just really want it to stop as do we all

[Moon_maiden]

Hi

I can’t help specifically, I’d suggested writing notes/questions beforehand and take a look for past posts on the forum. I’ve found it useful before.

Good luck with your phone call. 🙂

[Adeno2020 in reply to Moon_maiden]

Thankyou for replying. She rang and it was the most unuseful call!! Been taki n back to back mini pill since mid March and she won’t do anything until it’s been three months the baring in mind I’ve been on This pill 9 years.... it’s riddiculous

[Moon_maiden in reply to Adeno2020]

I don’t know what to say to that, it’s crazy when you’ve been on it so long already. So sorry you’ve had a poor experience.

I’d possibly think it’s more to delay in the current situation, reduce the expectation, just a thought. Doesn’t help patients so much. Did you manage to bring up any options?

[Adeno2020 in reply to Moon_maiden]

yeah I asked about a few things, I understand it’s difficult to do things right now, but I just received loads of false information about my previous lap. Just come off phone to gp who is amazing she’s helped me so much

[Moon_maiden in reply to Adeno2020]

That doesn’t help with moving forward.

Good idea to speak to GP and you got some help there. 😀

Hopefully this will be over soon

[Adeno2020 in reply to Moon_maiden]

Thankyou so much your always there helping everyone out so Thankyou

[Moon_maiden in reply to Adeno2020]

Thank you, but helps take my mind off it all 😀

[livvi_livvi]

Hey,

Sorry you are going through a tough time. Ive just seen in the comments your call didn't go well so sorry about that too.

If you believe / know they are giving you false information about previous laps then it may worth requesting your medical notes from the operation for you to be able to read what is the truth. You can do this and shouldnt have to pay through your hospitals PALS department usually. If you google it should tell you. At least that way you would know and would be equipped in the future to truly challenge the information being given.

In terms of a hysterectomy at such a young age they will only do as an absolute last case scenario and only then if you are really disabled by symptoms. I am the youngest person by surgeon has hysterectomised and I was 28 and he had huge reservations but at the time I was on the max of morphine for pain and bed bound by the pain having exhausted all other treatments. The reason your age is a factor is due to the increased risk of other serious illnesses after a hysterectomy. Also, a hysterectomy isnt always the answer or relief you think it might be, for me its taken some pain away but Ive now developed a chronic pain condition from it which is worse sometimes than the pain was before.

Xxxxx

[Adeno2020 in reply to livvi_livvi]

Thankyou for your reply sorry to hear that it caused another pain for you!

My last lap was done because I was admitted to a&e for ovarian cyst they sent me to gynae 3 times and they sent me away, a surgeon came to me on the ward and said because it is a cyst really it’s a gynae procedure and they need a member from ggynae there so they got someone to call over and he told me gynae refused to be part of it but not to worry he and his team will go ahead and do it themselves. Yet the gynaecologist yesterday told me it was done by gynae when it wasn’t. My point to her is it takes a specialist doctor to see endo... and the surgeon when I asked after surgery said his not a specialist in that area so need to get opened again (he was very honest) pain wise I never used to be that bad... could manage with meds but I’d say since having my baby it’s just got out of control! But they think I got adenomyosis through delivery... so maybe that’s a factor for the pain too.. it’s so hard being doubled over in pain and having usual day to day tasks to still do a have a 1 year old who relies on me. Not being able to do things like take her swimming invade I randomly start bleeding in the pool or something or stuff it’s just annoying I need it gone lol! My mom was 30 when she had hysterectomy and they’ve been trying to get my older sister to have it from 29 she’s got endo and had 4 cysts removed and so many child losses it’s sad. Hope you find ways to manage your pain

[livvi_livvi in reply to Adeno2020]

Ohhh my that sounds a bad experience for you. Im sure you can request your full theatre notes which will show exactly who did the operation then you could look up their skills and I would think you should be within your right then to ask for a qualified gynae to look if thats not what happened before. Is this your only local gynae or do you live somewhere with another hospital close? Im just thinking it might be worth trying a different hospital if at all possible.

Thanks for your kind words. Im on pain meds stronger than morphine now which help me to do more with the pain most of the time. Its just when it flares when Im in bed for however long it lasts.

Xxxx

[Adeno2020 in reply to livvi_livvi]

That’s good to hear you’ve got stronger meds, yeah I used to find my flares ups was like once or twice a month and now I’m poorly more then I’m well a have a good week a month.

& also I’m one of those that don’t like a fuss and I feel really awful to ask for my notes I know that sounds pathetic 🙈, I mean maybe when they reveiw me in June I’ll ask them I don’t want to bother them with all that’s going on I guess. & yes so I spoke to my gp yesterday, as where I’m from there’s like 3 hospitals that provide gynae and one is actually a specialist in endo but I’m not under that hospital so asked my go to be referred to them and she said with Covid at the moment places aren’t taking on new referrals so it’s best to do it after Covid has died down she said which I totally understand. So that gives me some hope. She didn’t want to put in referral who h will discontinue where I am now for the referral to bounce so to stay under these till I’m okay to be referred properly, so there’s hope.

[livvi_livvi in reply to Adeno2020]

Awww thats good then sounds like your gp is really good.

Yeahh I totally get that it is difficult with all this covid19 going on. Hopefully, when its all done then you will get the help you need. But in June dont be afraid to speak up with endo you have to be your own advocate.

Xxxx

[Adeno2020 in reply to livvi_livvi]

Yeah she’s helped me SO much, after all the bad experiences she’s (just one person) has shown light at the end of the tunnel! And I know I’m just not very good at speaking out lol but I will Thankyou so much xx