Adenomyosis

[Cooper]

Just wondering if any of you girls have Adenomyosis (Endometriosis Interna)?
I have just been diagnosed.
Have been doing some research and it appears there is no real treatment, unlike endo, due to the location. Am not really sure what to think right now. Is all very confusing, and i feel so alone as noone (IRL) seems to understand what i am going through!
Would love to hear from others and read your stories...

[runnermum]

HI Cooper, I am sorry that no one has replied earlier. I asked this question a little while ago and feel alone with it too. Mine is not formally diagnosed, just a thought when I got my lap for my endo...

Do you have children already? I have one little boy and I was told it may be caused by trauma from my last birth (and it was a very hard labour and birth).

it has been over 2 years now since we have been TTC for number 2. It is a horrible thought that maybe this is the reason, and I would like to know more about it myself, as it is confusing to me why we cannot concieve when everything else is fine. I have made (with hubby of course) 7 lovely embryos through IVF but none of them implanted over the 6 months we tried. I just got my period today.

we are now on our own for 3 monts for an overseas trip and to try 'on our own' just like our little boy was made without any problems like this..............it is so hard to see him growing up without a sibling, but I do realise I am luckly to have him..........but somehow it is still very hard.

I hope others will post and hear their stories and experiences, the very best of luck to you, I do know what it feels like Cooper and thanks for posting.

[Brownbug]

Hi Cooper,

Yep, I have got it too, very badly I'm told.

I was diagnosed with severe endometriosis in 2004 - it destroyed one of my tubes, so we went on IVF and were lucky enough to conceive my daughter, she was born May 2006. When my period returned it brought terrible pain, which I thought was strange, because mostly endo is supposed to get better after pregnancy, not worse.

So my OB arranged a laparoscopy to see what was going on, and he found that I now have very bad adenomyosis. Apparently this type of endo gets WORSE during pregnancy, because your uterus is stretched by the baby growing and the endo can actually get into the muscle tissue. According to him my uterus is the size of a 10 - 12 week pregnant woman because of the adenomyosis .

So, we are now back on IVF, hoping for another baby before things get worse. My OB has told me the only cure for my situation, and to stop the horrific pain, is a complete hysterectomy. I really badly want another baby first though, so I hope it all works out OK before that happens!

I hope it all works out for you too - are you trying for a family at all?

Best Wishes,

Vicki

[runnermum]

hi Vicki,
I got different information and my Gyno is a leading expert on endo and doing research currently on Adenomyosis. I was told that adeno cannot be dianogised correctly by a lap because as you say the damage is IN the muscle tissue - so cannot be seen. He has speculated this may be the case with me, and like you my uterus is slightly enlarged, however, this can be the case with many women who have had babies previously.

I wish I could stop your pain, life is NOT fair sometimes. I do not get any pain whatsoever, however I used to have it fairly badly BEFORE I had my first child natually.

I just wish we could also get clear answers from 'experts'.

[Brownbug]

Thanks, Runnermum,

I just want another baby, the rest of it doesn't matter so much to me. My FS says my chances have been reduced somewhat because of the adeno, but hopefully that won't stop us. I had an ovum pick up yesterday and am getting (all being well) an embryo transfer tomorrow afternoon.

I hope you also find success in conceiving number 2. People tell me that I should be grateful for my gorgeous daughter, and I am, more than anything, but it is my dream for her to grow up with a sibling.

(By the way, I noticed on another forum that your FS is Jim Tsaltas at MIVF - he is mine too and gave me the diagnosis of my adeno! He is lovely and helped us conceive our beautiful daughter! Hopefully he can pull off the same trick again this time!)

Fingers crossed for us all ,

Vicki

[runnermum]

Hi Vicki,
I agree with you, all I want is another bub for my son also, don't really care how it happens, but hopefully sonner than later. Isn't that interesting to get two different opionions from the same FS.... He is a lovely man just wish we could all see him more often - this is what I find frustrating as he is so busy and to get an appointment takes soooooooo long.

The very, very best to you. How old is your daughter?

[Brownbug]

She has just turned 18 months. It's such a gorgeous age, she is so curious and learning things so quickly, it is a fascinating time!!!

[Cooper]

Thank you girls, is nice to know i am not alone!
I do not yet have children, so you girls are very lucky!
I am having a mirena inserted in a fortnight, as my gynae thinks this may help with some of my symptoms etc...will see how we go...hopefully things improve as i am becoming depressed due to my hormones being all over the place and the pain and constant bleeding etc, it is having a big effect on my relationship too

[Brownbug]

I so know how you feel, Cooper. I was in pain around 75% of the time too. My period would go for a week, then I would have even worse stabbing pain for a couple of weeks after, I was popping pain killers like lollies. Then I'd have a week or so off before it all started over again.

It was all starting to wear me down. It made me seriously tetchy and I found it hard to look after my daughter (I am a stay at home Mum) properly when I was in so much pain myself.

My FS gave me the pamphlett on Mirena too, but he is still leaning towards a full hysterectomy to solve my issues. For the last few months, I have been on the drug Synarel, which brings on temporary menopause and stops your period. Oh the blessed relief!!! You can't be on it too long though, because it affects your bone density apparently.

I've now started IVF to try to conceive another baby before it all gets too much. I'm in the two week wait right now to see if I'm pregnant. Finding out I'm not, if that is the case, will not be as bad as having to have another period though, now I'm off the Synarel - I'm totally not looking forward to that!

I hope the Mirena helps you overcome your pain!!

[Cooper]

Thank you so much Brownbug!
I have just been bleeding for 3 out of the last 4 weeks...am so exhausted all the time...cant be bothered doing anything...just want to cry constantly! My partner has just about had enough too (particularly from the sex point of view) and i just feel so lost...
If Mirena doesn't work i will look in to something like synarel...as i am not having a hysterectomy!!

[Cooper]

Good luck with the TWW too...fingers crossed for you...

[Brownbug]

Thanks so much. I'm not a patient person, so the waiting is worse than everything else put together!

The hysterectomy is certainly a very drastic option, I agree. It freaks me out a little just thinking about it, as I feel like I'm too young still for that (probably a silly preconception of mine!!)

If I am lucky enough to have another bub, I will then probably, like you, try the Mirena first and see if that helps.

Again, all the best with it. Noone should have to live in pain all the time - we have much better things to be doing!

[aprilstar]

Hi girls,

I too, have adeno (found out 12months ago). Dh and I would love a sibling for our DD just over 2yrs old. We've been told that my biological clock is literally ticking (im only 32) and if we wanted to ttc#2 then we had to "get on with it now". That being said, we are now into our 2nd year of trying. FS has given us until the end of Jan to keep trying. I've also been told that due to the state of my uterus and the adeno, and based upon the slim chance that I can actually carry #2 to full term because of it all, i will probably have to have an emergency hysterectomy after giving birth.

[Brownbug]

Hi Aprilstar,

It's not fair, is it? I really really wish you all the best in conceiving # 2. I know what it's like to want a brother or sister for your child, but not being sure you can ever achieve it.

I pray you will conceive a lovely healthy bub and have a trouble free pregnancy - I wish that for us all!

[aprilstar]

Thanks so very much Brownbug! *Hugs* I wish you all the very best!

What a lovely person!

Hi Cooper / All,

I have "presumed (diagnosed from an ultrasound)" Adenomyosis, and tried Mirena. I had bleeding for 8 weeks, and extremely bad mood swings until I had it taken out, although I have heard many success stroies so I hope it works for you.

I am now back on the HRT Provera (which I was prescribed prior to the Adenomyosis diagnosis), which is awesome (no periods, no pain, not a single other symptom, yay!). Slight downfall with reduced bone density but this has increased since taking a lower dosage of Provera, and taking vit d and calcium tabs.

I am with you on the hysterectomy, not sure if i want kids for some time, but i certainly dont want the chioce taken away completely at 28!

Hope all goes well with you

Cheers

Hi Ladies
I am going in for an MRI to see if I have Adenomyosis. I have 1 child and had a myomectomy for fibroids, and a C section with my daughter, who is almost 5. We now want another baby and have been ttcing for 1 year with no success. I also have fluid in my tubes and I want to know if Adenomyosis will hinder my chances of conceiving??? I can do IVF and will if we have to, but I wonder if having Adenomyosis interferes with fertility? Any clues? Thank you.

forgive me, but i haven't read every reply that came after this ..

i had a tubal ligation done in feb 2004, in feb 2006 i was diagnosed with Adenomyosis and was offered a hysterectomy on the spot. before i had my tubal i had zero AF issues, since my tubal i have every increasing pain and AF is heavy! i'd never had a heavy period before that. i was told i could have a DnC to "clean" me out and that should alleviate any pain until it grew back.
we toyed with the idea of IVF but i don't think i could cope with it not working, so we have decided we have enough kids i know at some stage, well before i'm 40, i will have my hysto and my pain will be a thing of the past, but still, my uterus is mine and i'm a little attached atm, so i'm not ready.