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Discussion Starter · #1 ·
Hi

Does anyone have any experience of adenomyosis? I've just been diagnosed with possibly having this & my consultant has suggested that I have a laparoscopy & hysteroscopy to confirm & possibly treat. All I've been able to find out from the internet is that the only real treatment is a hystorectomy - which is not an option for me!!! I'm wondering if I should get a second opinion & also how I can find the best person to do this operation. I have very little trust in the people at my current clinic (for various reasons) & I'm really not keen on going into having this operation without knowing more.

Any comments / help would be really appreciated!

thanks

Susie
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Hi Susie

Im not a doctor, but my understanding that some people do get put on a course of Lupron, which causes the body to go into a menopausal state - and causes the abnormal tissue to reduce in size. This of course is all reversable.

A Course of Lupron, should not be more than 6 months.

The most reliable way of dealing with this is a hystorectomy, but it shouldnt be there first call!

Let us know what happens :)

Tony,
 

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Discussion Starter · #3 ·
Hi Tony

Thanks for your comments. I've decided to go for a second opinion anyway & we're in the process of getting an appointment at Hammersmith. Looking at the website they seem to have a lot of experience of uterine problems.

I'll let you know how I get on :)

Susie
 

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Discussion Starter · #4 ·
Hi Jac

Thanks for your reply - I really appreciate it. I'm sure you have loads to do now with little Jacson :)

Most of what I have read about adenomyosis is pretty negative about my chances, but your success makes me feel more positive. We have an appointment at Hammersmith on Friday - we decided to go to them because they have a reputation for dealing with uterine problems, so I'm expecting them to have some experience in this area.

WIll let you know how I get on. Give Jacson a huge cuddle from me :)

Susie
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PS - I'm a Leed supporter & just getting very depressed - 3-0 to you and we're playing like a sunday league team :(
 

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Hi Soozzee
Any news on your consultation yet? I had an adenomyoma removed by myomectomy 18 mths ago; it showed up on my first IVF scan and looked like a degenerating fibroid but as I was having a lot of pain and intermenstrual bleeding the doc decided to investigate (the NHS were supposed to have done all that but they just told me I had endo and there was nothing I could do apart from go on the pill!!). Anyway, the rest of my endometrium looked very thin and patchy so I was warned that there may well be other areas of adenomyosis. We pressed on with the IVF but after 3 goes never got a good embryo to test the lining out! I am now due to have a dummy cycle (last time was with donor eggs and I needed a lot of oestrogen to thicken the lining up) to have a good look at its response to the drugs and hopefully to do an endometrial biopsy. I know the adenomyosis will probably be deeper than the sample they get from biopsy but if the bit the embryos want to stick into is OK that will be good enough for me and we will give it another go.
I wish you lots of luck and may all your dreams come true!

Jaq
 

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Discussion Starter · #6 ·
Hi Jaq

Thanks for asking - it's great to know that I'm not alone!

We had a consultation with Mr Trew at Hammersmith on Friday. He said that diagnosing adenomyosis isn't very easy & the treatment options (hysterectomy or temporary menopause) aren't really an option for us! He's suggested that I have a laparoscopy & hysteroscopy so that he can find out more & also sort out the adhesions in my uterus (from an ERPC 8 years ago). There's also a possible problem with my left tube that he can check out.

I'm having the operation tomorrow so will know more after that what our options are....

It seems that there isn't really a lot known about adeno - but I guess we have to try to be positive. Sorry to hear about your experiences - & fingers crossed that the dummy cycle shows something helpful Keep me informed :)

Susie
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Discussion Starter · #7 ·
Hi Jaq

I had the laparoscopy & hyteroscopy yesterday - all went well. Mr Trew found a couple of things that he sorted out (adhesions in my uterus, scarred cervix & some slight endo) - but no significant indication of adenomyosis. We're having a full consultation with him next week to go through it in more detail & discuss treatment options, but it seems that everything's ok with me :)

Hope you're keeping well & positive :)

Susie
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Hi Susie

It sounds like good news for you - I'm so pleased. Another hurdle over!

Best wishes

Jaq
 
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