Adenomyosis

[nimblejim]

I can so sympathise with the cramping. For months I used to have a constant dull ache a few days after ovulation until my period followed by heavy bleeding and clots. Now the cramping can occur at any time and to be honest I don't know if it is the adenomyosis or endo. And when the cramping comes on it takes ages to go, if at all until my next period. It is such a deblitating disease for us to deal with. That is why I am so careful with what I eat as for me it does help. I feel positive this week as I enjoy this bit of the trying as there is hope of getting pregnant.

 

[mushypea]

So hope this is your month

 

[sbm2812]

Hello,
I have never had a problem getting pregnant. I have had 5 children and have always concieved within 3-4 weeks of trying. Since having Endo issues, my right ovary out and adenomysosis recently suspected... I can not get pregnant even though they have me tracking my ovualtion and all seems well. This is our last chance for another before I have a Hysterectomy... If I can get pregnant. Then doctor doesn't want me to wait long, but said if I do get pregnant the chances of the condition getting worse while are slim to none, but would need to be addressed right after if I can have another. She gave me about 6 months or less of trying .. Less if I start to get any worse. Soooo We will see what happens.. I am praying hard that all will work out.

 

[mushypea]

Praying for you sbm - we were going to go for ivf as endo can produce chemicals in your tubes that stop an egg from being able to be fertilised. Have you had an hsg? x

 

[heart tree]

Hi ladies, thought I'd join. I've been feeling very alone with this adenomyosis diagnosis. I'm 36 and have had 3 miscarriages. I don't have any children. I was diagnosed with adenomyosis by an MRI after my last miscarriage. I've been told by 3 specialists that it is located at the top of my uterus and is pushing down on it, causing an abnormal shape. All 3 specialists have said that embryos tend to implant in the exact spot that I have the adeno, and it is most likely causing my mcs. Because of it, I'm not a candidate for IVF. On top of it all, I ovulate late. So, I've been taking Femara to help me ovulate. I've taken it for 3 cycles with no luck. I was told that in my case, I need to keep trying and hope that one sticks in the right place. But I was told it is going to be a numbers game and that I face more miscarriages.

I found a specialist recently who has told me I'm a candidate for surgery. It would be endoscopic surgery to remove the tissue. I'm really scared now. I want to have a baby so badly and am scared to have surgery on my uterus. But the other option is facing more miscarriages.

Anyway, I just wanted to say hello to some fellow women with the same diagnosis. We are a small group. I'm encouraged that some of you have children and are pregnant again.

 

[mushypea]

Hey heart tree - so sorry you hear you have had such a rough time trying to get a sticky bean. I have been told that an embryo can implant anywhere - so hopefully it is just a matter of time before you get that sticky bean. I really hope so. As you say, IVF is of no help if you have significant adenomyosis, but people do get pregnant with it, so please keep the faith

 

[heart tree]

Thanks Mushy, I appreciate it. I know they can implant anywhere, but I've been told that where mine is located is the preferred place where they like to implant. Who knew there was a preferred place! LOL!

I'm moving forward with surgery I think. If nothing else, I would like to have less painful periods. Last cycle I had to take Vicodin for the pain. It felt as painful as a miscarriage.

I'm really excited to see that you are 15 weeks along. It really gives me hope.

 

[mushypea]

Hey Amanda - I think the surgery sounds like a great option. I hope you end up falling pregnant straight after - I got pregnant straight after my HSG x

 

[ebelle]

I am encouraged to see others have adenomysis and have successfully gotten pregnant.

I've been trying for 6 cycles and the end doesnt seem in sight. So far have not gotten even once and its seeing that every month is heartbreaking!

Thanks for giving me some hope.

 

[mushypea]

Hi ebelle. It took me 12 months to get pregnant this time. Keep trying, keep the faith and keep pushing the medical specialists : hugs:

 

[heart tree]

Hey everyone. I know this is a super old thread, but after a ton of googling and not coming up with anything, I thought I'd ask here. I've had 4 losses including one ectopic. I'm now pregnant again and so far so good. This is the healthiest pregnancy I've had to date and the longest as well. I was diagnosed with adenomyosis after my 3rd loss. It's focal, not diffuse. My periods have never been unbearable, but somewhat painful. I also had mid-cycle spotting. I can often feel my uterus, if that makes sense, especially twinges in where I think the adenomyosis is. Recently I've started to feel a very localized twinge in my uterus. I wondered if any of you felt your adenomyosis in pregnancy. It just started a few days ago. It's not a cramp, more like a little pulsing twinge. I can hear the baby's heartbeat on a doppler so I think the baby is fine. I have an NT scan tomorrow and will ask them to look. But thought I'd ask the real professionals - you!

Thanks for any input you might be able to offer.

 

[mushypea]

Hello heart tree - congratulations! I feel my uterus, cervix, ovaries etc etc doing funny things all through my cycle, but my adeno is diffuse, so I've never 'felt it' specifically. There is much to learn about adenomyosis, but I must say feeling funny twinges and cramps is all part and parcel of pregnancy as I'm sure you will have read, so I would just put it down to that and try not to worry - let us know how you get on

 

[heart tree]

Thanks Mushy. After 4 losses I'm just trying to figure out what's normal. And the adenomyosis definitely isn't normal compared to most women. I'm trying to relax, but it's just hard. I'll try and chalk this up to normal pregnancy.

Did you have normal pregnancy/delivery? I'm so thrilled for you!

 

[mushypea]

Yes my pregnancy was pretty normal - but I had lots of spotting from 7 - 20 weeks. Normal delivery, which was very straight forward as well. I really hope all is well with your pregnancy

 

[heart tree]

Wonderful news! I had a small bleed at 8 weeks and some spotting for the next 2 weeks after. There was a small clot in my uterus which now appears to be gone. I'm hoping everything from this point on is as normal as can be! Thanks again for your response. It's so nice to know that women with adenomyosis can have healthy pregnancies. Would you believe that I was told I would never carry a child because of it? I'm looking forward to birthing this baby and then sending a picture to the doctor who told me that! I'll keep you posted along the way. Thanks again!

 

[mushypea]

It really is very unpredictable. Keep us posted x

 

[ninamama]

Hi hearttree, I wanted to ask if you did anything special te get pregnant this time? I've had 2 mcs and 2 ectopics, they removed one of my tubes But I recently had the other one checked out with dye test and got the all clear. I've also been diagnosed with endometriosis and adenomyosis (apparently due to an STD picked up from my unfaithful exboyfriend.. How truly awful...but different story for another day) I've been trying for 8 months since the surgery where I got the all clear and have now been referred to a fertility specialist. I googled adenomyosis and came across this thread, even though I almost live on this site. I was hoping you might have a tip or some advice as we seem to have a similar history. Thanks...

 

[heart tree]

Hi Nina. Yes, I did a couple of things differently. First of all, I don’t have endometriosis. So that might be a difference between us. I made sure they checked for it during my lap for my ectopic removal. Also, do you know what kind of adenomyosis you have? Focal or diffuse? I have focal, meaning it is in one location in my uterus. It kind of bulges and creates a weird dip in the top right part of my uterus. The theory with my specialist has been that we just need one to implant in a different place in my uterus. If yours is diffuse, it might be harder, because it is all over your uterus. Though I think Mushy has diffuse and she’s been successful.

I tend to ovulate on the later end. Usually between days 21-28. So my doctor and I decided to try a medicated cycle of IUI. I took Femara (aka Letrozole) from days 2-6 to make me ovulate sooner. We confirmed I was ovulating from my good tube with an ultrasound. Then I did an hcg trigger shot to ensure I ovulated on time. And we did the IUI. I started taking progesterone suppositories 3 days after the IUI. I have never been diagnosed with a luteal phase defect but my LP has always been a little short. I think the adenomyosis has created a hormonal imbalance in me. I also was put on a thyroid medication. Normal thyroid levels are considered to be 1-5. Mine was 2.6, so totally normal. But my FS said there is new research linking thyroid levels over 2.5 to miscarriages. So she put me on a thyroid med a month before I started IUI. I’ve been on it ever since and my thyroid is down to 1.3.

Those are the only things I did differently. Who knows if any of them have helped or if I just got one to implant in the right spot.

I was offered Lupron (which puts you into temporary menopause for 3-6 months) but decided against it. I’ve read that it can “deactivate” the hormones that feed adenomyosis, hence stopping it’s growth during that time, but it can’t actually shrink it. I’m so sensitive to hormones already, and I’m 37, that I didn’t want to mess with it. The idea is that you deactivate it and once you go off the meds, you get pregnant immediately before it can reactivate it. Apparently pregnancy is a great “cure” for adeno, in that it stops the growth and symptoms. Your FS may offer you that option. I would suggest doing a lot of research on it before deciding to go that route.

I wish there was a simple fix to this problem. It felt like a death sentence when I got the diagnosis. I already had 3 losses under my belt when I found out I had it. No one told me that there is a connection to adenomyosis and ectopics. I found that out after my 4th loss which was ectopic.

Doctor’s don’t have a lot of information about adenomyosis and fertility. Most women are diagnosed because they are having a C-section and the doctors can see it, or because they are symptomatic and are looking for an answer. Neither of those applied to me. We were doing tests for recurrent losses when they found it. I have barely any symptoms from it.

Let me know if you have further questions. I’ll give you as much info as I know about it. I wish you the best of luck. It can feel like a lonely place to have so many losses and have this diagnosis.

 

[ninamama]

Thank you Amanda, I am going to print off your post and take it to my FS. My appointment is early March. The surgeon who did my surgery showed me a picture of the inside of my womb and said it was in one specific place, above the opening to my good remaining tube. The endometriosis was pretty much all removed during the operation. Ive also had all necessary blood tests done, and they all came back as normal. I have all the results here and trying to see what they mean, but they may as well have been in chinese, I cant figure out which one relates to the thyroid. Ill take them with me when I go and see the specialist, he'll be able to clarify a few things. Like you say, it can feel pretty lonely and overwhelming, but you have no idea how much your story has given me hope. I am really thankful that you took your time to answer my questions. I think informing myself is a way of dealing with the losses and lets me take a bit of control back over my body. Wishing you all the very best xxxx

 

[heart tree]

TSH is the thyroid test. It stand for Thyroid Stimulating Hormone.

Like you, all of my tests came back normal too. My only real issue seems to be the adenomyosis. Good luck at your FS appointment and feel free to ask me anything. I'm an open book!

One more thing I didn't mention was that I also investigated getting surgery to remove the adenomyosis. I found a doctor who specializes in this surgery using a robot which gives better precision to where he is cutting. He explained it to me like this: Fibroids are like cupcakes in a non-stick pan that can pop right out and are easy to remove. Focal adenomyosis is like cupcakes in a pan where they stick. When you try to take it out, some of it is always stuck and can't be taken out because if they try, they would dig and dig and eventually compromise the uterine wall. So they have to leave some behind. There is essentially no research regarding having this surgery and carrying a pregnancy to term. Most women get the surgery for pain relief. I was about to go through with the surgery, but had a team of specialists review my case and they all decided it was too risky. They weren't sure how well my uterus would be able to hold a pregnancy afterwards and could result in uterine rupture which could kill the mother and the baby. In the end, I opted against the surgery. It's a personal decision, but it is also another option you might be offered.

Hope this helps. I'm so glad I could offer some hope. I'm here any time. xoxo