surgery planning

[ValerieJo]

Hi all,

I have RV endo stage 4, polyps & fibroids; the endo is a large growth into bowel wall; I'm with Cathy Dean (endo specialist nurse) and Mr Burn (consultant) in Cornwall at the moment.

Attempted to manage this without operating for a little over a year since surgery was proposed, but my symptoms have changed and I'm now reconsidering. I have severe anaemia as a result of blood loss, while the endo grows, 1 x blood transfusion & iron injections regularly.

Have you had surgery to remove endo & bowel section resulting in ileostomy/stoma? Good and bad experiences please, particularly with anyone at the Cornwall endo centre.

Looking for any tips on planning surgery and recovery time and advice about financial and physical support following surgery as I'm without dependants.

Thanks

[handbag67]

Hi Valeriejo

Sorry this isn't quite replying to your question, I'm responding because sounds like we've similar decisions to make.

I've dealt with heavy blood loss by occasional transfusion and iron, and also Tranexamic Acid. Have been lucky that the TA works pretty well for me, although recently have had to take it for more days than would really want to.

Am trying to avoid surgery (which I've been told will result in stoma that won't be reversible) as am 48 and presumably getting pretty close to menopause. My bowel complication is due to an ovary that's described as being 'buried into bowel'.

Have asked if I could have just my womb out as I think most of my bleeding is result of adenomyosis and fibroids, but that's not an option my gynae is comfortable with. Am presuming that's because the endo will continue to march on although not sure.

I've had one round of Prostap (for 6 months) that helped (no bleeding for almost a year!). Although there were side-effects - mainly hair loss and some mood swings for me - these were nothing in comparison to the happiness of being able to have a 'normal' life.

Am considering a second opinion, as am not currently being seen at an endo specialist centre (although gynae is v experienced and has been great), and possibly a second round of Prostap (probably with a bit of HRT this time to protect against osteoporosis).

Have a consultant appointment in a few weeks when it'll be decision time. I don't feel like I know nearly enough about bowel section/stoma outcomes to have an idea of what to do.

J

[ValerieJo in reply to handbag67]

Hi J

Thanks for getting touch and yes, we sound like we're in a similar position. Im 47 and considered menopause as a 'solution' but it is a very difficult isn't it, trying to weigh up all the pro's & cons of having/not having surgery.

Im single and don't have a partner or children to consider however, that also means no immediate support post op. Getting my job & business organised for during and after surgery is also a big consideration. How are you coping with those things?

What is the intended aim of the Prostap?

Ive not heard of TA?

Im on 2 IM injections a week but the area to inject is small and sore.

I'd definitely get a second opinion, where are you based?

Take a look at - bsge.org.uk/ec-BSGE-accredi... - for endo centres, hopefully something near to you. I think the more we know the better we can make a decision, which sounds obvious but what I mean is an informed choice. Taking into account, hospital reputation and infection rates is key as a friend pointed out to me yesterday, vulnerability is raised with a womb AND bowel opening post op - risk of infection is high.

I turned down hormone treatment and surgery when I was first diagnosed because I had no clue what was going on at the time and nothing was explained to me. It wasn't a discussion, I was being told what I should do which is no way to do anything. I then saw Enda McVeigh who told me point blank, to avoid surgery.

There is a woman on here who appears to be very knowledgeable from her own experience and extensive research - she may be in a position to advise/help with how to make a decision? I'll send another message with her name though Ive not looked at anything in detail that she's written yet as only got on here yesterday.

I struggle with the idea of the stoma too, at this point for me, it is said to be reversible with the op, but I'd like to know I could handle it if it wasn't. Ive been looking at pictures and trying to find 'success stories/role models' for a positive outlook.

I have tried to manage this without surgery, changing my diet, exercising etc which has been hugely successful for the best part of a year, but, the last couple of months have been hectic which is why Im looking at surgery again. My job has changed (promotion) and has become stressful, not the job, but people I work with, which has coincided with increased bleeding and subsequent low levels and repeat treatment.

Stay in touch J. I'll post the research woman's name in next message

VJ

[ValerieJo in reply to ValerieJo]

Lindle is the name f the independent research on the forum. She's put up an article on RV endo in the pouch of douglas which I think is me... I'm re reading my consult notes...