Severe endometriosis may prevent hysterectomy - has anyone found themselves in this situation?

Well good news it’s stage 1a, been thinking about you today so thanks for letting us know. So you have the lowest stage and lowest grade, so best possible outcome in that regard.  Appreciate you have other issues, which I have no knowledge of, but it does seem they are thinking about the best way forward for you, and won’t be long now for the MDT to make their decision. From reading one of your other posts, think it was good that your CNS has spoken to your daughter, that must be of help to you.

Try to relax and focus that it hasn’t spread, and it won’t be long before you know finalised plans. 

Great news that it is stage1a and low grade. 

I am sorry to hear of the endometriosis and I am sure that there will be other ladies who also have endometriosis and have gone on to have the surgery. The surgeons really are very skilled and I am sure they will try their very best to do the hysterectomy. The referral to the specialists is a good thing to happen.

Although a hysterectomy is the first line treatment there are other alternatives, particularly your stage. One option is hormonal treatment that is most commonly used where hysterectomy is medically not possible or for younger ladies who would like to preserve fertility first. 

I know things still feel a bit up in the air but your CNS advice sounds reassuring and hopefully things can move ahead fairly quickly to sort this cancer out. 

Jane

Hi, As Jane has said, hormone therapy is a possibility, if only as a temporary solution. I have a coil for 1A EC for over a year now and the cancer has regressed. It can at least hold things until the time is right for surgery....good luck!

Thank you all for your replies - I'll hopefully get the call from the MDT tomorrow.  I've been put on anti-depressants today (was on them a few years ago) as I'm not coping.  I went to Maggies on the Wirral, they were so lovely and tried to get me to focus - my concern is that the MDT will have found other issues when they've considered my MRI again today - is this a common fear for people?

Lizbot, just to say that this is my understanding of the way it works: that the MRI is interpreted by a highly trained individual and sent to your MDT who then work out the best plan of action for the findings; and that the MDT rely on the expertise of those who’ve interpreted it, and don’t reinterpret it as it’s not their job/skill. MRIs are very detailed and very precise, are a super resource and it’s a real skill to interpret them. In my time I’ve had MRIs of my head/neck, knee, gynae bits, lumbar spine and thoracic spine, and and know how clever they are. 

Hi All

By way of update, I had my call with my CNS yesterday, and I've been referred to a more specialist hospital in the next week or so, who will consider my case.

I finally calmed down yesterday - or so I thought - someone I know had gynae surgery yesterday and the surgeon told her that he wanted to give her a hysterectomy but due to her bowel being stuck to her uterus, it would have left her with a colostomy bag - and once again I am a nervous wreck.

Anyone had this experience please?  If I do end up with a bag, can it be reversed?

Thank you 

Hi Lizbot, before *every* hysterectomy for this we are told it’s a possible risk that we may need a temporary stoma while it heals if it’s found to be stuck to the bowel. Not nice but it is what it is and for me I prepared for the worst and hoped for the best. I wanted the cancer out so just decided to get on with it regardless and trusted the skill of my surgeon. Try and allow yourself to have faith in the skill of those caring for you. 

Hi Liz

sister (in Australia) of a close friend of mine, had a colostomy bag as a result of complications with her womb cancer treatment - and has had this successfully reversed, about 3 months ago and is doing really well, was at a later stage than you.

As Marmitefan has said, try and put your faith/trust in the team looking after you. You have been referred to a specialist team, which is good news, and they will do everything they can to minimise any risks to you.

hope you can relax a bit this weekend xx

Oh yes, I remember that conversation well! 3 pages of form to sign for risks of surgery.  I think of it as they are keeping us informed. Even if it is a bit mind boggling at the time. 

Thank you. I don’t know what’s wrong with me, I just keep thinking the worst. Can I assume that you were stoma free?