Adenomyosis

[Ej83]

Ej, I have focal adeno, but I was told because of it, I wasn't a candidate for IVF. To do IVF they like to have a very pristine uterus. But I suppose every place is different in their opinions. I was looking into a gestational carrier as well, but ended up doing IUI and fell pregnant with this baby. However I've had 4 other pregnancies besides this one (which I lost), so for me getting pregnant wasn't the issue, keeping them was the issue. Do you know if your clinic will do IVF with diffuse adeno?

Congrats on your little girly!!!

 

[heart tree]

Oh that's great news! My adeno is like a ball and it pushes down the top of my uterine wall a bit making an abnormal shape. It hasn't pushed through to the inside cavity, but apparently it is located where embryos tend to implant and they think my losses were caused by the fact that they implanted there and then didn't get enough blood flow. That's why they wouldn't do IVF.

I think it's encouraging that they will do it for you. When I looked into surrogacy, I found it would cost about $100K here in California. If you know someone whose willing to do it, it would be less expensive, but I still think the whole thing costs more than IVF. Of course there's no guarantee that either will work. You have a lot of decisions in front of you. I imagine some of it will come down to cost as well as best odds for it working. Keep us posted on what you decide. I know either option isn't ideal, but I also understand the motivation to hold your baby in your arms. Good luck.

 

[Ej83]

Yes, there are so many decisions but ultimately, I want whats safe and so does my husband. I had a huge adenomyoma in the fundus at the back. they thought it was a posterior fibrpoid initially. It was removed during my surgery. My adeno seems to be in my cavity pper the HSG but during the saline sono it doesn't show..but I could see it on the HSG..I'm still kind of confused but they definitely want to press foward with IVF. Lupron is also an option...I opted out of it at first

 

[heart tree]

I opted out of Lupron. I'm very sensitive to hormones and I was scared it would mess my cycles up. Plus I'm in my laye 30's and I was scared it would somehow put my body into permanent menopause. I was told that Lupron doesn't shrink it, it basically deactivates the hormones that feed it, only while your on the medication. Then they want you to get pregnant immediately as that will also deactivate the hormones that feed it. For me, that wasn't a good enough reason to take it, especially because I get pregnant so easily. But some women have had success after using it.

 

[blondie2774]

Hey Hearttree,

We were born the same year. Just found out I got adeno. Miscarriage 3 years ago and haven't got pregnant since. I am hopefully reading your posts. I know you were 5 months of your last post. Baby????? I'm praying yes.

 

[blondie2774]

Hey Hearttree,

We were born the same year. Just found out I got adeno. Miscarriage 3 years ago and haven't got pregnant since. I am hopefully reading your posts. I know you were 5 months of your last post. Baby????? I'm praying yes.

Sorry. Just read your journal and realized you are due in August!!! GREAT!!! I was reading your other thread and didn't realize that all the pregnancy stuff is happening now Looking forward to the pics of your little girl. Thanks for posting your journey. It has given me hope.

 

[heart tree]

Thanks hon! I'm 7 months today. There is no evidence the adeno caused my losses, but it's a possibility. Do you know what kind you have? Focal or diffuse? Do you have a plan moving forward?

 

[klpleet]

Hello all! Glad to have found you. I was diagnosed with adenomyosis in July 2012. I got an IUD at that time to control it. I had severe bleeding with large clots. Went to the doctor concerned after about 2 weeks. I was on the IUD until the past Sunday, when it fell out. Things were pretty good while I was on it, but it's started again since last night. I have 2 children, but always wanted more. So I was hoping to have another before I make the decision to have a hysterectomy. I don't want to deal with this for the next 20 yrs, and my insurance company doesn't cover BC. I don't want to have to fight with them. I'm meeting with my doctor this Friday, but it's good to see what other people are dealing with. Glad I found you guys.

 

[klpleet]

Hello all! Glad to have found you. I was diagnosed with adenomyosis in July 2012. I got an IUD at that time to control it. I had severe bleeding with large clots. Went to the doctor concerned after about 2 weeks. I was on the IUD until the past Sunday, when it fell out. Things were pretty good while I was on it, but it's started again since last night. I have 2 children, but always wanted more. So I was hoping to have another before I make the decision to have a hysterectomy. I don't want to deal with this for the next 20 yrs, and my insurance company doesn't cover BC. I don't want to have to fight with them. I'm meeting with my doctor this Friday, but it's good to see what other people are dealing with. Glad I found you guys.

Sorry...I meant July 2011.

 

[heart tree]

I hope your doctor has some suggestion klpleet. My adeno isn't symptomatic lucily. I know it can be very painful though. You could always try Lupron and then try to get pregnant immediately afterwards. Good luck!

 

[klpleet]

I hope your doctor has some suggestion klpleet. My adeno isn't symptomatic lucily. I know it can be very painful though. You could always try Lupron and then try to get pregnant immediately afterwards. Good luck!

I'm really anxious and Friday can't get here soon enough! And I know she can give me something to make the heavy bleeding stop temporarily. The thought of being pregnant makes me excited and nervous all at the same time! Although I'm trying to remain realistic, that it may not happen.
Thank you though!! I can't wait to hear that your baby girl is here!

 

[Gracentrue]

Hello Amanda,
I just joined the site due to reading your post. I too have adneomyosis and wanted to know how you are doing? Did you have the surgery so that the embyro can implant in the correct place? I'm scared but hopeful.

 

[heart tree]

Grace, I'm sorry it took so long to respond. When you wrote this I was a crazed woman as my baby was born early and was in the NICU.

I did not end up having surgery. I had a team of specialists look at my case and they decided it would be too risky to have the surgery. The problem with surgery is that it is only known to help women who have severe pain from adenomyosis. There isn't any documented research on how it can help or hinder fertility. I was talking to a surgeon who is one of the only ones in the world who does robotic endoscopic surgery on adenomyosis. He wasn't able to tell me if the surgery would help me to carry a baby to term. The other specialists I spoke to at UCSF thought that due to the lack of research, they weren't comfortable advising me to have surgery. Their fear was that my uterus would be compromised too much and would end up rupturing in any subsequent pregnancies.

I ended up doing IUI to fast track my next pregnancy. I get pregnant easily but have just had trouble carrying them to term. It was a success and I just gave birth to my beautiful daughter 4 weeks ago. I had her 6 weeks early. I doubt it had anything to do with the adenomyosis. In my case I think I just needed an embryo to find a place to stick in my uterine wall that didn't have the adeno. I feel like I got very lucky. I don't think having adenomyosis means that you can't have children. I think it may mean that it is a little more challenging to create a family than it is for other people.

Keep staying hopeful. Let me know if I can answer any other questions.

 

[lovemyboys72]

Heart tree, just wondering how your baby daughter is? I hope everything has turned out OK for you all. Were they able to confirm that adenomyosis had nothing to do with your daughter coming early? I hope she is home with you now.

I've just read through this thread after being told I had adenomyosis today. I have a history of easily conceived twins 3 years ago (3 months prem but are absolutely great! ) but two recent chemical pregnancies/early miscarriages. Don't know if the adenomyosis is focal or diffuse, need to discuss in more detail with my GP. Don't really have any symptoms of note (sometimes pain with sex and half a day heavyish bleeding when I think of it) so am presuming it can't be too severe?? I just wanted to say that this thread has been reassuring to read through and very supportive - thank you.

Is there anyone else out there with adenomyosis diagnosis and successful pregnancy stories?

P.S. This is my first ever reply in a forum anywhere so hope it reads OK!!

 

[ebelle]

I was told it would be very difficult for me to get pregnant. Sure enough it took 16 months of trying various things including clomid and iui. I just got my first bfp last month.

While it is still early days, I do think that this pregnancy shouldnt be too bad and am hoping its a sticky one.

I did do a lot or research after I foubd out I had adenomyosis and it seems that if you can get the embryo to stick, then it shld not be much of an issue.

Good luck to you and hopefully you get that sticky one soon!

 

[lovemyboys72]

Thanks ebelle, good luck with your pregnancy. Haven't found much about how adenomyosis affects fertility so hopefully yes, just need one to stick in a good place...

 

[heart tree]

Lovemyboys, sorry it took so long to respond. It's hard to find time anymore. My girl is doing well, thanks. She is home now and thriving. They don't know what caused her to come early. They also don't know why I had 4 losses. No one was ever able to confirm any of these were caused by the adenomyosis, but I have my suspicions. I truly believe it was the cause of 3 out of 4 of my losses. The other one grew to 10 weeks with a lovely heartbeat, but I had a massive blood clot that terminated the pregnancy. The others never made it to the heartbeat stage. I also know that adeno and endo can be the cause of ectopics, which I had in my 4th pregnancy.

I wish I had more information for you. I've never been able to find much information regarding adeno and fertility. It's frustrating to be given a diagnosis and then be told there isn't much information about it in regards to fertility.

I conceive easily as well. I don't have symptoms from the adeno, though I guess I have 1 or 2 days of heavy bleeding and cramping. It's never kept me from going to work, the gym, etc, so I never considered it to be that severe. I have had mid-cycle spotting that didn't coincide with ovulation. But that was the only other "symptom." I've read that it can get worse as you get older. I hope not! Mine is focal, which I think may be a little better in terms of fertility than diffuse. I personally believe it is more than a matter of getting one to stick. You need it to stick in the correct place. I had pregnancies stick for a while. But many doctors felt that they must be sticking in the part of my uterus that has the adeno. That meant there wasn't enough blood flow to the growing embryo to sustain it, which is why it stopped growing. I was told that my adeno is in a place that embryos like to implant.

Ebelle, congrats on your pregnancy! I do hope it is your keeper.

As you can see, it is possible to have adeno in an area where they fertilized eggs like to implant and I still managed to have a baby. She just decided on a different part of my uterus!

I wish you all luck in this journey. It can be torture for some of us. I wish it was easy for every woman.

 

[Blue12]

I have adenomyosis but that had nothing to do with my difficulty getting pregnant. Best of luck!!M

 

[IVFmarathoner]

I, too, have been diagnosed with adenomyosis. My husband and I have done 3 fresh cycles and we're in the middle of our 7th frozen transfer. Our 5th transfer was an ectopic and we were blessed with a beautiful miracle from our 7th transfer. When our child turned 2 we decided we were ready to try again and met with our doctor to discuss the next steps. He suggested we check for adenomyosis and do genetic testing on our embryos. They found the adenomyosis through an MRI. I did 3 lupron shots once per month. Our 8th transfer was a chemical pregnancy and our 9th was completely negative. We're putting in our last few embryos for our 10th transfer. Since we started IVF when I was 25, my doctor isn't sure why we had so many failed cycles. He says he adenomyosis might have played a roll, but we did get pregnant on our 7th cycle, so he isn't sure. I hope this helps someone!

 

[heart tree]

Good luck to you IVFmarathoner! Interesting that you also had an ectopic. I had one for my 4th pregnancy and my 5th pregnancy was the one that was my keeper. I hope you get lucky again and soon. Thanks for sharing!