adenomyosis - anyone have this condition?

hi there,
I have had endometriosis for many years and recently had my second lap operation. We have been TTC for a second child for 18 months.

however, after my second lap, it was thought by my gyno that I may have adenomyosis, since my uterus is enlarged and I experienced some similar pains to endo pains just 6 weeks after my lap operation (and just days before my period).

what do others know about this condition? and most importantly (well to me) are wondering what my chances are to get pregnant again.

The plan is to try for the next 3 months as this is the optimal time after a lap operation....

any experiences or info you have would be great to hear...

A bit disappointing that no one has replied.......

Sorry I don't know anyone who has this condition.. however I do have severe endo, but it has been removed, via excisionally surgery........ and now i have full relief!

You might be better googling your query... I am sure there would be heaps of info out there, actually i think the ECCA website has something on this condition.. google ECCA..

regards

leisa

I have done som googling - but was looking for others to talk to.....

I haven't heard anyone mention having it on BB before, unfortunately most of us are boring old endo sufferers. I do hear it is a shocking condition though and extremely painful.

Have you checked the endo association sites as well?

Hi Jane, thanks for posting. Actually, I have endometriosis as well, just had a recently lap operation hoping it would help us conceive our 2nd child - no luck yet and it has been 18 months - we are going to start IVF in March I think....and I am scared.

As for adenomyosis - well, I cannot say that I suffer PHYSCIALLY too much - I seem to have a fair bit of pain around ovulation and every 2nd period, but basically, I am EMOTIONAL about it all - apparently it may have happenned as a result of my long, intense and painful birth (28 hours ) of my (gorgeous) son. Because I was trying to be such a 'tough' girl, my labour I feel went on too long without any dilation and my uterus also suffered and is abnormally large now.

I still don't know too much about it...and how it may affect IVF treatment.

I heard somewhere that stage 5 is the class they use for adenomyosis and other organ wall penetrations but have not heard it since

Hi, i have adenomysos, and i also did IVF , if you need any quesitons answered , feel free to ask me.

Hi, I just found this thread. I have severe endo + adenomyosis. Apparently lots of endo women also have adeno but they don't know it, since it's hard to diagnose without a hysterectomy. As far as I understand, it is basically endo of the uterus walls. It causes the same sort of pain as endo. Apparently it doesn't effect your fertility. I have found it a lot harder to get info on adeno than endo. It's also a lot harder to treat, as it can't be surgically removed (without a hysterectomy of course). All the best.

Hi, I had Adeno. I was diagnosed at age 40, my doctors explained to me that it is a thickening of the walls of the uterus and it becomes bulky. I also had endo at the same time, after my laparoscopy I was worse with pain but I had a few complications. I have wondered if after the removal of endo, was most of the pain caused by my heavy, bulky uterus?
I have a link (rather a long time since I visited, I wanted local feedback) to an American site, quite like this one. Jen's Adenomyosis Support = geocities (dot) com/zoieangel
I wish you well

hi again everyone,
well, it is several months later and still no 2nd baby. I have had 4 FET IVF transfers now with fantastic embyros but no pregnancy as yet. I really think there is a implantation problem going on due to my 'probable' adenomyosis......not formally diagnoised. I have just read that more advance MIRs can detect this now...

I would love to hear from anyone out there who has this and even more from someone who has fallen pregnant with this disease. I need some hope and feel just depressed right now. I am very grateful to have one beautiful son, but would very much love to be a mother over again...

Hi Runnermum, I have also been told I "probably" have adenomyosis by my Gynae. He told me that about 4 years ago after a lap. It seems to cause very heavy/painful periods for me, however, I have fallen pregnant 3 times over the last 18 mths (all ending in early m/c) My Obs said she didn't feel it was anything to do with my uterus, and I had all the recurrent m/c tests done - all normal.

So .... I am now seeing a wonderful Chinese Medicine/Acupuncturist guy who is treating me and who has had great success helping women to have healthy babies. Some of these women have been infertile for years. For the first time in years my periods are lighter and less painful.

Maybe this condition can be helped by alternative medicine? Heres hoping!

All the best

Oh Runnermum I forgot to mention my GP said the fact that I had a "bulkier" uterus should help with implantation (go figure!)

thanks sooooooo much for your reply susan - I needed to hear that. I feel just so terrible today, like I am not ever going to be pregnant again. I am so sorry for your miscarriages, but good to hear that your FS said it may have nothing to do with your uterus.

I do see a chinese herb lady and get accuputure - although just taking herbs at the moment. I don't think she really knows much at all about adenomyosis however.

Your very welcome Runnermum. I found my Acupuncturist through the Australian Acupuncture and Chinese Medicine Association Australian Acupuncture & Chinese Medicine Association - Welcome to the AACMA website.

When I rang them I told them I really needed a highly recommended practitioner which they are usually not allowed to say but after I gave her my story the lady on the phone gave me a whole bunch! If you like I could ask him to refer you to one in your area.

That would be fantastic if you could Susan! I live in the suburb of Blackburn, which is in the Eastern Suburbs of Melbourne.

I notice you live on the Gold Coast! We are moving there late next year! Have you lived there for long? Do you like it?

thanks again.

Runnermum - We love it here. Well at first it took getting used to - we came from London so BIG difference! THe weather is great once you've adapted to the long hot summers. We have been here 12 years now.

Tomorrow Ill ring up the Acupuncturist and see if he knows someone good where u are. Adenomyosis is apparently hard to diagnose and is usually only confirmed after a hysterectomy so all the u/s's Ive had (sincebeing told I could have it 4 years ago) haven't picked it up:confused:

Anyway I am waiting for the go ahead to ttc again from the AP:pray:

I understand your depression in this situation it is heartbreaking sometimes but Ive found doing things about it helps like getting as healthy as possible and trying alternative medicine. We will get our BFP's soon!

t hanks susan - very much appreciated. Great that you love the Gold Coast, I am sure we will too! I have heard that adenomyosis can be detected with MIRs now.

Best of luck to you too - I just got my period this morning.......I have 3 more frosties left from this first IVF cycle.

Runnermum Im so sorry to hear you got your period, try to think of it as a fresh new cycle and opportunity :hug: Ive rung up my 'team' this morning and they are enthusiastically going to find just the right person for you, one that specialises in IVF support :dance: They will let me know later on today.

Do something just for YOU today:)

Speak to you soon...

OK, here are the details (he knew straight away who to refer you to :dance:)

Linda Moroney
976 High Street
Armadale

Ph: 95093957

Good luck Runnermum!

Hi everyone, Im a little behind the 8 ball, sorry.
Just new to this site. I am a 25 year old mother of 2 girls. About 12 months ago - i was diagnosed with this stupid condition called adenomyosis. Let me just say, it is a horrible condition and what makes it even more horrible is the lack of information about this condition:(. You can go and look on the net - but you wont find much.

Anyway, straight after my second daughter I thought it would be nice to get pregnant as soon as possible with number 3.

But then I started getting really unbearable pain "down there", went to the Doctors and thats when I found out I have adenomyosis.

Anyway, I almost came to the conclusion that I might not be able to get pregnant again. Until today. I have just received news that I am pregnant :dance:and was fortunate enought to conceive naturally, so yes it is possible to fall pregnant with this condition. I am yet to find out just what risks I may face with this pregnancy as my own GP does not know much about adenomyosis, so i am being referred to a hospital and obs specialist.

So, my heart goes out to you - I can understand the emotional pain you are going through - but it can happen! I hope one day you will provide everyone with good news.

Kath

Well, I've been trying to conceive for 3 years now. After my first year I was diagnosed with Endometerosis and had surgery to remove it. I then tried 2 IVF cycles that failed. The doctor discovered that my ovaries aren't producing good eggs, only bad ones that won't produce children. Doctor said I can only conceive through Egg Doner IVF. So, I began to work extra hours to save up some money for the proceedure. Then last Tuesday I had my 2nd surgery to remove more Endometerosis, and 2 cysts, one on an ovary and the other on a fallopean tube. They found Adenomyosis and said I need a hysterectomy after I'm done bearing children. I have pain EVERY DAY like bad period cramps and I have been unable to have sex since June, 07. I have an ulcer so I cannot take anti-inflamatories to relieve the pain. Then the surgeon said I can still conceive children through Egg Doner IVF while having Adenomyosis, but wouldn't tell me any particulars on how because we were on the phone the day after the surgery. I have an appointment to discuss my options with him but its not for another 2 weeks and I cannot sleep a wink. I am wondering if anyone has any advice for me whatsoever?? What am I to do?? Is there hope for me at all?? I want a child so badly its killing me inside and the info on the web makes my head spin.

Susan :wall:

Hi all,
I'm new to the site, and found it by a good old google search on Adenomyosis.
I have just been diagnosed in the last few days, and am wondering the same questions. Can we still get pregnant ?
Are we at a higher risk of miscarriage because of it ?
My symptoms are naturally lots of pain and absence of periods, which is making our quest to become pregnant difficult. I am going throught the motions of some kind of IVF treatment at PIVET in Perth. We had ultrasounds this week and the dr told me i have a follicle (YAY !) but is immature at the moment, but that was music to our ears seeing as though we'de been told i was probably menopausal and we'de have a hard time producing eggs or getting my ovaries to work.
I was diagnosed through a vag.U/S the dr says my uterus is small which is contrary to what my research has shown and everone is saying. I have 2 children all ready, a girl 13 and a boy 9, but have recently re married and my darling husband has no children so we are trying anything to make it happen.
I have discovered that there is a drug used in fertility that is also used to treat the condition, Gonadotrapin, with the condition it's used for the pain and to reduce the amount of the adenomyosis, but fertility it has a different use, according to the PIVET book it's used to shut off the hormones in the brain and allow the ovulation process.
We go back for test results on the 23rd of April so hopefully some good news.
Has anyone found out the answers to the burning questions?

I'm so glad i found this site, it sounds like everyone feels like they're the only ones.
Hope to hear from you soon.
ALL THE BEST for the quest !!

Hi Kath,
I just found the site and am happy to read of your pregnancy. I am ttc aswell with this horrid disease and have just been told i have an immature follicle,(music to my ears). If i can ask did you find out about the risks involved? And is all going well?
Good Luck
Lisa.

Hi Jaide,

The pregnancy is going well. I am now 8 weeks pregnant and had my first ultrasound last week. Everything is looking well and is where it is meant to be.

When the hospital first told me I had adenomyosis, they advised me that if I got pregnant it would help ease the pain from this condition and it definately has. It has taken me 21months to fall pregnant (used to fall at the drop of a hat) and I was getting worried I would not fall pregnant. When I found out that I was pregnant it was scary because everything I could find on the internet about adenomyosis and pregnancy seemed really "dooming". So I just kept bugging the Midwives at the hospital until I finally spoke to a doctor. He said that trying to get pregnant is the hardest part but once pregnant, there are no more risks involved than in a normal pregnancy. I was only 24 when i got told I had this condition (25 now). They have told me that I am quite young to have this condition, and I am planning on this being the last pregnancy. But I did fall pregnant naturally and I hope that others can have the same chance that i was blessed with.

I am so happy that my orginal post has at least provided a place for women like us to vent and talk and also rejoice. congrats on your pregnancy Kath and I wish it all goes well from here.

I myself try to remain positive. I am into my second stim cycle. As I may of said, although I do not experience any pain from this condition, my gyno still seems to 'think' I may have it. Reading over many of others stories, it sometimes seems unlikely, however I do get a lot of blood clots (sometimes quite large) when AF is here.....do others have this??

As each of us find out more about the condition, please post it here......it is small resource for others, but an important one, along with the wonderful emotional support.

HI Kath,
I've been hanging to get a reply... Congratulations, i'm so happy to hear a good news story, I'm so excited for you. It's good to know it can be done. Since my U/S last week showing we have a follicle we've tried every night, my temp has spiked and then panned out and spiked again today by .3 degrees...and hopefully will maintain at this. I'm not having a period with this condition so it's really hard to tell whats what. My next appt is on the 23rd but i dont think i can wait till then to find out. How long do you think i should wait to do a test?
Lisa.

Hi All,
Would love to hear from someone, new news, events and experiences.
Whats happening in everyones cycles, how are things in general?
Lisa.

Hello ladies, I hope you don't mind me jumping in here. I'm about to do my first IVF cycle. I have what my doctors have called a "very impressive" adenomyosis. I've been trying to get PG for 25 cycles.

I've done 3 rounds of clomid, 3 rounds of double IUIs w/injections.
I also a small amount of endo, a blocked right tube and a luteal phase defect.

But the biggest problem is the adenomyosis.

I'm terrified about going through IVF. Also, I live in the U.S. and have ZERO infertility coverage and everything is paid out of pocke for us. I'm hoping the first time works for us.

If anyone has any advice or other success stories, I'd LOVE to hear them.

Thank you!

:

---

I am so happy that my orginal post has at least provided a place for women like us to vent and talk and also rejoice. congrats on your pregnancy Kath and I wish it all goes well from here.

I myself try to remain positive. I am into my second stim cycle. As I may of said, although I do not experience any pain from this condition, my gyno still seems to 'think' I may have it. Reading over many of others stories, it sometimes seems unlikely, however I do get a lot of blood clots (sometimes quite large) when AF is here.....do others have this??

As each of us find out more about the condition, please post it here......it is small resource for others, but an important one, along with the wonderful emotional support.

---

Hi runnermum, did you end up finding/having success with acupuncture in Melb?

Could you please tell me what your experience has been with IVF and adenomyosis. I went for surgery to get rid of adenomyomas. My reasons for IVF include my husband's low sperm count and the fact that the top part of uterus is scarred from the myomectomy. Did you have a successful IVF? What protocol did you follow during your IVF? Were you given lupron? Who was your doctor?

I last posted on this thread in 2006 after my third miscarriage. I was in the middle of acupuncture treatment for this. Well I did get pregnant again twice but sadly lost one at 5 weeks and another at 10 weeks so my husband and I have decided to stop trying and move on to other things.

It has been an extremely painful and sad time over the two years but at least we tried everything we could. We have a beautiful daughter whom we treasure more than anything and are extremely grateful for.

I wish success to all you ladies and hope your dreams come true.

My adenomyosis seems to be getting worse as the pain and bleeding each month has increased so I think Mirena may be the go? I shall be seeing a specialist soon about this.

Susan

We finally moved ahead w/IVF after being told they could not surgically remove the adenomyosis.

We put back two grade-A 8 celled embies and both of them took :)
I'm currently 30 weeks PG with twins and have had a complication-free PG.

sjs I'm very sorry for your losses and the pain you're in :(

hi all you ladies,
i dont have adeno but i have got endo, pcos and suffer from severe adhesion problems for which i cant have any surgery to my abdo not even a lap - and am on morphine for pain.
im only 21 and dont have children yet but iam going to have to go through ivf and eventually have a hystorectomy.
i to have pain constantly but i bled for weeks at a time on the pill so i had the mirena put in the 9/1/09 and i had a d&c done and a camera and biopsys taken.
it hasent been bad so far apart from bleeding and pain but i have got a infection from it but i had more done than usual and it is uncommon apparently.
this could help some.
i hope you all get bfp's soon for those or trying and for the ones having beautiful bubbas i wish you all the love in the world and all the best.
sorry to babble
love rach xxx

Sea74 Thanks for your kind words, and CONGRATULATIONS :clap: to you! How exciting and so glad to hear its going well. You made my day! :D

Susan

Hi everyone,

I have endo and adeno. And WOW what a roller coaster ride this has been.

I feel for each and everyone one of you, and know how frustrating it is with the little information that is available out there.

I was first diagnosed with endo in May 05. Fell pregnant in Sept 05 and am now blessed with a now 2.6yr old DD. It wasn't until Sept 06 that the pain started again. changed from a mini pill to the pill. seemed to work for a little while. Gyn suggested lap and in July 07 confirmed had endo and had merina placed, he didn't want to operate to remove the endo, wanted to give the IUD a chance. as it has been proven to help with reducing the endo, with the pain and AF.

the pain increased, AF became every day and general life was unbearable. I sought another Gyn, this time a specialist in the field.

Had another lap Feb 08, this time had endo removed, well, as much as they could safely, the IUD removed, established R ovary not in the best condition and that my Uterus was enlarged and that the size of a 12wk pregnancy, and diagnosed with adeno.

Since then I have been on 3 different pills. Tried progestogens without success and am now on Zoladex, yes at the age of 29, was induced chemically into early menopause, due to finish end of Feb 09 (only ever a 6month option)

I was in server pain every day and managed it with a synthic morphine, not exactly ones choice, but was the only thing that helped numb the pain. And I had tried just about everything out there.

Zoladex for me has been used as a temporary 'time out'. I had no energy as my body has been fighting with this, for the good part of 2 years now. I was not objective, I was irrational and highly emotional with any decision I needed to make. To help with the hot flushes associated with menopause and other side effects, I started on HRT back in Nov 08 and had a horrendous relapse which landed me in emergency with outrageous pain. So HRT was stopped and I have been living with hot flushes every single day. My body didn't like any hormones added back to it. And unfortunately this is also the last of the treatments, as such. My specialist has exhausted all options to try and give me quality of life with this disease, and now some decisions have to be made.

With 1injection left (feb 12th) I have some rather incomplete choices to make. As All roads eventually lead to a hyst. Its a matter of when. So these are my options,

1. do nothing and see what happens
2. try for another baby. However my partner and I don't want another one, now. But what is to say that we don't want another one in 5 years time.
3. My specialist is suggesting that I try the merina again, which will slowly allow the hormones to return (all the above options with lead to pain, when no one can answer this for me)
4. Hyst, now, which I would need to get another 2 opinions first. And honestly, who can make that decision, I know I can't at this point in time. I need someone to find another way to help me deal with, I need for someone to reassure me NOW that I will be pain free and everything will be ok. Making the decision to have a hyst now or in 5 years time, would as I see it, is the biggest decision any woman would have to make or deal with.

Ladies, I can't tell you enough how tired I am of this elimination processes I have been through, just to get here today. The process in which to try and get some sort of normality with all of this. I can't express how much I fear the pain returning and living constantly under a weighted cloud of broken hope.

I will say that I have an amazing partner, who has been patient and understanding through the entire ordeal. And we started cousenlling today, in hope that someone from outside can help give some perspective on the matter and perhaps give us some tools to help us make an informed decision.

I am truly sorry for the length of my post

Vanessa

Hi Ness,

It certainly doesn't sound like an easy choice but I think I am in a similar situation to you. All I can really say is, if you even think that you MAY want another child don't get a hyst. Zoladex sounds like it's doing more harm than good so personally I would try to avoid it.

Did you have any side effects from the mirena? I had one inserted to help with adeno but it's been 2 months of severe pain and pain killers I've been prescribed don't help at all. I'd be interested to hear more about this synthetic morphine though.
Depending on your reaction to mirena it might be worth trying this again?

I had my endo cut out and prescribed combined pill + progesterone only pill full time to keep it at bay. But the adeno is the problem.

I'm 24 and want to have children within a few years so all I can really do it try to find the best painkilling method in the meantime until I'm ready. Unfortunately I'm yet to find this method and any help would certainly be appreciated.

Although I'm not looking forward to coming off the pills to fall pg as the endo will return.

You're right it is all very frustrating!!!! But what ever decision you make I'm sure it will be the right one for you. Good luck and keep us posted :)