Adenomyosis

[YDI]

hope you are going well

[Brownbug]

Hi USAMum - I was originally diagnosed with endometriosis, which destroyed one of my tubes. I had a couple of laparoscopies to "clean me out" then was advised to go on IVF if I wanted kids (hubby had some issues too). After my daughter was born, instead of endo pain reducing, it increased and I was diagnosed with adenomyosis. The specialist said that this would reduce my chances of my next IVF transfer "sticking" from 40% to around 20%, so obviously it does impact your fertility a bit. That being said, my next transfer was successful and I'm now 10 weeks pregnant, so far so good.

Hi Chubbycheeks - I know what you mean about being attached to your uterus. I'm happy with two kids, and don't want any more, so after this one is born, my specialist wants me to consider hysterectomy as an option, but I'm not sure how I feel about that....He also told me though that as adenomyosis is endometriosis embedded in the actual lining of my uterus, they can't remove it any other way - ie D & C, laparoscopy etc

Hope everyone is coping OK and not in too much pain - adenomyosis is really awful!!!

oh bug, i'm so pleased for you!!! i had no idea that adeno reduced IVF chances by that much, i'm pleased i've come full circle now and realised i'm happy with the 5 i've got, in a perfect world, 8 would be my magic number, i'll just have to get more chooks

lately i've been thinking that for my 35th b'day, in 2.5yrs, i'll have my hysto. i'm currently a week and half from AF being due and already suffering the terrible pain of adeno AF for a few days now i get slight relief from about day4 of AF til around 2weeks before i'm due, so i get a whole week and a half a month, which is more than some ladies get

i know this will sound morbid, but i am kind of glad to have stumbled across this thread, i don't know anyone else irl who has this and it's not a commonly known thing.

:hugs: for everyone

[aprilstar]

Hi everyone .. hope you are all well.

Thought I would stop by to tell you all that after 2yrs of ttc#2 we are finally pregnant!!!
We are 8wks so far, being closely watched by my FS, we've already had 2 scans, going for a 3rd in
2wks ... but for right now, babies heart beat is strong and everything is looking great at this point in time. I've had ppl tell me "see I told you if you relaxed it would happen" .... I just brush it off, they aren't to know to the full extent in which hubby and I have gone too in order to even fall pregnant again. It's far from easy and relaxing doesn't make miracles happen (in my case anyway).
I hope everyone is doing well and goodluck to you all.
Talk soon.
April.

[Brownbug]

Oh congratulations Aprilstar, so very happy for you and your DH!!!

I hope you have a lovely, happy and healthy pregnancy!! It sounds like your FS is taking wonderful care of you, which is so great!!!

[aprilstar]

Thanks so much Brownbug. I really appreciate your happy thoughts and well wishes for hubby and i.

that's wonderful news aprilstar :hugs:

[runnermum]

aprilstar - congratulations on your pregnancy - hope all is going well.

I am glad we started this thread about adeno also...what is frustrating for me is that I am not really sure I have it. I have had some endo removed in about 15 months ago, and that is when the doc suggested there may be some adeno also.
I have hardly any pain whatsoever - i used to years ago but not now.

I have an appointment with the FS very soon - shall I ask for a Ultra sound or whatever it is that may get me a diagnosis?

I am getting so depressed because of knowing WHY we are not conceiving number 2 (our son was so easy to concieve!). ON our first IVF cycle last year we got 7 lovely embryos, all top grade but NONE took.

we have now had a break - still no luck and time is not on my side (I am 38).

[bel4]

I have just been diagnosed with possible adenomyosis after years & years of endo & surgery.......& now I've managed to stop crying, I'm not sure what to do in terms of treatment. (If I felt healthier, I would start with a whirlwind trip to the gym to blow off this extreme frustration) Cooper - if you're out there anywhere - what's the Mirena like? If my ultrasound points to adeno, it's either that or a hysterectomy....neither of which is even slightly attractive. Over the past 14 years, I've had 4 surgical interventions - 3 laparoscopies & a laparotomy for monster fibroids, and a course of Synarel. And a successful pregnancy, so I have a beautiful son. All of these offer the most fantastic, blissful, exciting relief, and I seem to get my life back - and have a taste of what being healthy & energetic feels like, & then it's gone again.
Anyone with experiences of Mirena, I'd love to hear from.........

[WAmum]

Hi,

I just discovered this thread.
We have been TTC number 3 sicne I miscarried twins in Feb 2006 (at 9 weeks). We have a pigeon pair, but that's not my number.
I have had lapo,D&C two weeks ago and we are going for IVF next week.

I am desparate now, we are giving it one more year before a hystorectomy.
Little annoyed at myself that I didn't push with gyno more after last miscarriage - he told me to take a 6 month break, and lose weight. I did both and I am now scared that I won't get pregnant.

[Freya]

I had it and have gone on to have 2 beautiful little boys although after years of TTC and fertility treatment. I will eventually need a hysterectomy but after Ive finished having my kids. I plan on using the Mirena after I have final bub next year.

[Cooper]

Glad i am not the only one out there with Adeno..i havent met anyone IRL...

I had the Mirena put in in December and had spotting and severe pain/cramping every couple of days up until the last few weeks...i was tossing up whether to get it taken back out as everyone said it should have settled down in 3 months...but i persisted because i didnt want the heavy long periods i was having previously...
So for the last few weeks everything has been good

[philippa.sdoula]

This is very old posts I know, but I have just been researching this for a woman who has this and is pg with #4. SHe took uterine tonics for fall pg the last time as she kept losing the babies.
I was reading that Tubal ligation, c/s and DnC's all increase the chances of Adenomyosis. I was interested to know how many of you had undergone any of those procedures? A few of the last posts had and it got me wondering. I have a special interest in these things so any of your stories would be great! All the best with your journey's.
Cheers,

[Cooper]

I had not had any of those procedures when it was diagnosed Philippa...have since had a DnC

[Freya]

Phillipa - Ive had 2 d/c's and 2 lapo's. No c/s and no tubals.

Had a routine u/s check on Monday and my endo is G-O-N-E. Never thought Id ever hear that. So hopefully its the end of my troubles and I might get to keep my uterus after all.

[pandoraseyez22]

I'm going crazy with this whole adenomyosis thing, my doctor sputtered out about 4 different words last year when he diagnosed me. He used metaplasia with hyperplasia with adenomyosis causing polyps. I know what all of those words mean alone but together it sounds like a mess. I'm just reading through the stuff you all posted and some of what I have heard had been different. That during pregnancy the adenomyosis does stop but as soon as the pregnancy is over it gets worse. I've heard that gonadotropins can help, but nothing has helped me. In fact my doctor thought I was lying about all of my problems, so I got a new doctor and he diagnosed me. I have three children, I am young, I don't want anymore, does any one know anything about the prevalence of adenomyosis and uterine cancer? All of the women, with the exception of my aunt, have had hysterectomies due to cancer. Is this a precancerous condition? After my last d and c I haven't gone back to see my dr. I should but I'm so sick of it. Also, what are your menses like? Mine is 2 weeks of bleeding, so heavy I go through two boxes of tampons and some pads with severe cramping and pms, then two weeks off. Please any information would be appreciated.

[Babygirl25]

Hi girls,

I am very glad that I found this forum as I thought I was alone. I live in London and was diagnosed with adeno, in 2006 at the age of 23 (I am not 25), I don't have any kids and I was suffering for years and getting ignored by doctors. After moving away from home for uni. I was finailly diganosed with fibroids but after opening me up to do a mayometomy, they found Adeno. all this in my final year of uni. I thought it would all be over after the op but that did not happen.

All I think about is having a baby but I am not in the position to and I have nightmares for not being told I am unable to and havingg children is the one thing i long for.

I hope everyday that God will give me the baby I want, me and my partner have been trying for8 months now with no luck and I am beginning to get scared.

[Julz73]

Hi BabyGirl
I too was diagnosed at an EXTREMELY young age. I was only 21. I am now 35 and have been in the past trying to concieve. I am just about to undertake IVF as this seems to be my last remaining hope.

I will keep my fingers crossed for you that this will be a short journey for you and that you get what you desire.

Julz