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Discussion Starter · #1 ·
Hiya.
My dad's fiancee's daughter (you still with me?! ;D ) is having a lot of uterine problems at the moment. She has been having treatment for cancerous cells in her cervix, and had a laparoscopy, which showed she had bad endo. Apparently, her surgeon also thinks she has adenomyosis (sorry about the spelling!) and has given her three options:
Putting her on the pill
Hysterectomy
and putting her on lupron.

She also seems to have other problems - here is a little of the email my dad sent me:
'but he thinks, and this can't be diagnosed unless I have a
hysterectomy, that I have adenomyosis, it's basically an internal
endometriosis. Apparently my womb is huge, I think more than double in
natural size, as it's so inflamed from the condition, and not only that
it's tilted putting so much pressure on my bowl, hence I'm always
constipated'

She dosent understand what ando is, and as our IF is due to male factor, I'm not too hot on it either. My dad knows that I know a 'lot' about IF, so asked me if I knew anything, as I said I'd ask.
Basically, what exactly is ando, and does it affect chances of concieving? Her surgeon says that ando or endo dosent mean she won't concieve naturally, but, from what I understand, due to her cancerous cells in her cervix, she is due to have a hysterectomy after she has had a child.
She is mid-twenties, and due to get married in a year's time. She wants to wait until she is married before ttc, but I have tried to impress that maybe she could start trying sooner. (Just in case her cancerour cells get worse)
Now, she is looking around for a 2nd opinion, and is willing to go private. I've heard DR. Trew, at the Hammersmith is good with Uterine conditions - has anyone seem him, or anyone else in another hospital, who might be able to help?
Any advice/experiance would be much appreciated.
Thanks girls,
Marie xx
 

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Hiya Marielou

Hope that you are well

Not sure how much i can help here but will try

It is correct that adenomyosis is endo in the womb.

It is also true that the only way of a correct diagnosis is in fact hysterectomy, obviously this should be a last resort especilly if no children already.

As u probably know, i have endo, and they suspect adeno, but since i wont have a hyst they cant confirm.

The options which she has been given sound about right for treatment.

Lupron/prostap/zoladex/synarel are all the same kind of thing, and would stop her cycle and this may help with the adeno so may be worth considering, although that aside, depends on how long she is considering leaving ttc.

When on these treatments she would need to use a non hormonal method of contraception, and use contraception for up to 3 months afterwards too.

The pill is preferred by some people but its very trial and error.

One thing i would avoid is the depo provera pill injection.

Hysterectomy is a final thing.

It is such a hard decision, a while back i was going to have a hysterectomy because i just couldnt bear to carry on with the effects of endo but that was before i found ff's and found all of u lovely ladies.

I also do understand about the abnormal cervical cells (am due for colposcopy for them later this month altho now may not be able to have it done)

If theres anything i can help with at any time just give me a shout.

A website that she may find helpful is this one, its a new one and i moderate the board

http://www.endoaware.co.uk

Hope that things work out for her

Lots of love
Emily xx
 

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Hi Marielou

I'm glad that Emily has already replied to you (Hi Emily  :) ) and sorry I didn't read your message before. I too have endo and adenomyosis, and also had cervical abnormalities a few years ago. Firstly, I don't really understand why the doc has advised a hysterectomy after she has had children (apart from as a treatment for endo, which is a bit debatable anyway) - surely if the cervical treatment she has had now has been successful she will just need regular checks; if not they should be doing something more about it now??
Anyway, back to the adeno - it is true that it is difficult to diagnose, as it occurs below the surface of the uterine lining so cannot be seen by hysteroscopy. I have read that it can sometimes be seen on MRI scans but don't think that is routinely available in the UK. It can occur fairly well spread out throughout the uterus or can occur in lumps (adenomyomas) as mine did - a bit like fibroids, but not as easy to remove as it tends to spread into the surrounding uterine tissue and it can be hard to tell where the edges are. However, mine was picked up on my first ivf ultrasound scan. Has she had a ultrasound scan? In my limited experience, fertility people use scans but gynaes don't - would really help diagnosis if they did though. If she does have adeno, it may or may not affect her chances of conceiving - because it is difficult to diagnose properly little research has been done on it. Overall I would advise that she does get another opinion (or at least some more investigations done) asap. She is young (compared to me  ;D ) so if she wants to wait til she's married to ttc that's fine, but I would advise her that these things (fertility treatments, endo investigations, etc.) can drag on and on, even when you're paying!
I have seen Mr Trehan at Dewsbury, W. Yorks, who is a lovely man, and experienced in endo surgery, although not really in fertility matters (thanks Emily  ;) - thinking of you hun).

Best wishes and good luck to her and to you  :)

Jaq
 

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Discussion Starter · #4 ·
Thank you both so much for replying to my question - I've been doing lots of research on it for her, as she is apparently poorly at the moment, plus, it dosent hurt to know a little more about something, does it?!!

Now, as far as I understand, she has just had a LAP, which is when the DR. told her he suspected adeno, she had been told after an internal u/s before that they suspected endo. I know she has been reffered for a MRI scan, so hopefully that will tell her more.

Firstly, I don't really understand why the doc has advised a hysterectomy after she has had children (apart from as a treatment for endo, which is a bit debatable anyway) - surely if the cervical treatment she has had now has been successful she will just need regular checks; if not they should be doing something more about it now??
i don't understand this either - I know she has had a few conal biopsies (sorry for the spellings!) and has been told she needs a stitch in place during pregnancy, as they have taken so much away? I think she is still suffering from cancerous cells in her cervix, and, from my understanding (which could be wrong, as I'm getting this info via my dad, who is not hot on infertility at the best of times!) and has been told that she should get pregnant ASAP, but why, I'm not sure?!! I thoight if she was cancerous, surely if the cancer was flared up during pregnancy, it would put both her and baby at risk? ???

I will pass on the info about Mr Trehan at Drewsbury, I know she lives down south, and is willing to travel.

Many thanks,
Marie xx
 
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