Hi, I was diagnosed with Endometriosis 4 weeks ago and have been told that I will need a hysterectomy. I have now been referred for an MRI scan and Kidney scan before I will have a face to face appointment with the Gynaecologist. Has anyone else had this and how long did this take?
I am suffering more and more each day and in constant pain which is really getting me down and having a big impact on my day to day life!!
Hi SS44AS
It sounds like you've had a lot of information to process over the last few weeks with your endometriosis diagnosis and prospect of a hysterectomy - it's no wonder you're feeling low when you have this to contend with, as well as the pain. We do have a comprehensive information pack entitled 'Having a Hysterectomy', which is worth reading before your face to face appointment - that way you can ask any questions you have directly to the gynaecologist. The information pack can be downloaded at endometriosis-uk.org/surger...
You can also download a document entitled 'Endometriosis Treatment Pack' on the same link - this is a comprehensive resource that contains details on a wide range of pain relief options.
If you're looking for extra support from people who understand what you're going through, we have face to face support groups all over the UK. To find out if there's one in your area just visit endometriosis-uk.org/find-a.... Otherwise we also have an online support group (as well as this forum).
Take care - wishing you all the best x
Hi, You would be better to taken a hormone inhibitors than have a Hysto. If you have a Hysto it may not stop the pain and also you may create other issues with scar tissue bowel or bladder damage. Make sure you know all the facts of the positive and negative judgments? If you have a complete Hyst you may not find replacement hormones suitable, therefore age earlier and it will shorten life span and bone issues. Try to wait another 10yrs before you go down this route.
Be totally sure this is for you.
Good Luck.
x
Thank you so much for the replies. I have thought this through quite a bit. I have already had treatment twice for abnormal smear tests also and have been told that if it hadn't been treated it would have developed into cervical cancer. With this playing heavily on my mind and now with the Endometriosis diagnosed I think I would honestly rather have a full hysterectomy and then deal with the next chapter, whatever that may be 😪 x
I think with your smear issue if its developing and in the staging stage 1b or 2 then I would go for the Hyst too.Good Luck. Sending you warmth and positive thoughts.
x
Hi there. Am also waiting to see gynae next week. Was put on hormone blockers but they are not working…am in excruciating pain this week😭.
Will let you know how appointment goes! Hang in there.
VicSponge x
Its horrible being in pain constantly 😥 I have my kidney scan next week so just waiting on MRI scan now.
Good luck for your appointment next week and yes let me know how you get on x
Counting down the days, now! Will keep in touch. Hang in there xx
Hi there. Update for you! Saw an endo specialist on Monday and he said I had severe endo and adenomyosis so need surgery. Have opted for a total hysterectomy, as I want to eliminate chance of leaving endo behind. I gather that still may happen but am relieved.
Will deal with the hormonal fallout act from not having ovaries. Just hoping that this will reduce pain and give me my life back.
Vic-Sponge x
Hello,
Glad you have at least got a diagnosis and hopefully you won't need to wait too long for surgery.
Did they advise you of a rough waiting time?
I had my kidney scan today so just waiting on appointment for MRI scan now 🤞
Like you i have been told it will be a full hysterectomy which i am happy with and will deal with the hormones later.
Nice to speak to someone going through the same thing at roughly the same time x
Good stuff. Yes, the MRI was not the best of fun but we endo ladies are tough and-I don’t know about you-but the more information I can get, the calmer I feel…and the more validated!
We’ll do this together 😘.
Let me know how you get on.
Vic-Sponge x
Told NHS waiting time is 3-4years but that privately within 3 months from appointment with consultant. I tried Zoladex for 3 months first and have had all diagnostics done so hoping sooner rather than later.
Fingers crossed you get your date soon.
That was my worry that the NHS waiting list would be a couple of years, I honestly don't think I could wait that long!!!
Keep me updated on how you get on x
hi sorry to jump on this post but I am due to be going in for a total hysterectomy for endo 23rd June and was put on the waiting list 29th November so it's about a 6 month wait on the NHS at the moment which I thought was really good. Think it depends on your area though. I am in the middlesbrough area. Hope your surgeries go well and you guys have a speedy recovery x
Hi, thanks for replying. Fingers crossed it does go through as quickly as yours did! I am still waiting on my appointment for an MRI scan so I am a good way off getting the operation yet unfortunately. I am in Scotland so unsure how long I will actually have to wait.
I hope your surgery goes well and you have a speedy recovery too x
They are trying to meet the 18 week treatment goals so hopefully you won't have to wait too long for your MRI scan, however due to covid these can be delayed by another 10 weeks but they are aiming for those goals everywhere in the UK at the moment. I can't speak for Scotland but I was quite surprised how quickly my surgery date came round considering I was told to expect to have had the surgery by the beginning of 2023 x
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