Adenomyosis

[Laura A]

Hi Heart Tree

I've stumbled across this forum in a desperate search for answers about experiences with adeno while being pregnant and have found your comments to be very helpful and inspiring. Thanks for sharing your experiences with adeno and pregnancy! It gives us other suffers hope that we can have a child despite having this condition. I'm 36 and have suffered adeno since my teens (though I didn't know it was adeno at the time). I was recently diagnosed just a few years ago after I decided to finally investigate what was causing my excruciating periods. I've finally managed to fall pregnant after trying for some time and am currently sitting at 18 weeks but it hasn't been a smooth ride. I've had several incidences where I've had spotting around 8-10 weeks. Tonight, I again had spotting but it was a sensation like my water broke (obviously in a much smaller quantity). There was no accompanying cramping thankfully. I've had twinges since and a little discomfort but nothing out of the ordinary. It freaked me out a bit but I seem to be ok for now.

I was wondering if you could share your experiences about the spotting you had; what it was like, colour, consistency (I'm ok with the squirmish details), sensation, physical discomfort, and what you did. I just want to be reassured that this is something that happens while pregnant with adeno and not a precursor to a miscarriage. Any info would be helpful! Thanks so much!

If anyone else has had similar spotting experiences then would be happy to hear of your experiences too!

 

[heart tree]

Laura, I am happy to share my experiences. I have family in town right now, but will write later today or sometime tomorrow. In the meantime, congrats on your pregnancy! Did they ever tell you why you were bleeding? Mine were all caused by blood clots. Did you call your doctor? I know some women who bleed through all trimesters but I think it's most common in the first trimester. I'll get back to you in a bit with my info.

 

[heart tree]

Hi Laura. I'm putting my story in a spoiler in case others don't want to read it.

Spoiler

I had bleeding in all of my pregnancies. All were blood clots that were detected on an ultrasound. I only had one viable pregnancy, which resulted in my daughter 3 years ago. I started spotting pink/red blood around 5 weeks. They saw what they thought was a blood clot but couldn't be sure. It stopped until 8 weeks when one day I felt a few strong cramps in my right hip area and then felt what seemed like a gush of blood. It wasn't as big a bleed as I thought when I looked, but it was enough to cover the bottom of my undies and stain my pants. It was dark red blood. An ultrasound detected a blood clot of old blood near my cervix. I was told that it would either be reabsorbed by my body or bleed out. Since it was near my cervix, it was in a good place and wasn't affecting the baby. It did indeed bleed out over the next several weeks. It was always brown or dark red blood and I saw it daily until 11 weeks. Then it just stopped. An ultrasound showed it was gone. I never had bleeding in that pregnancy again. As far as what I felt, I definitely felt weird twinges near my ovaries for much of my pregnancy. I also had what felt like an achy uterus for most of my pregnancy. It often felt like I had full bowels or mild period cramps all over. I asked lots of women and no one felt this same kind of sensation. I don't know if it was the adenomyosis, but I'm guessing it was because I still often feel that same kind of achy feeling and I haven't been pregnant since I had my daughter. Also, my periods got heavier, much more painful and with lots of clots after giving birth. I think it is connected to the adenomyosis. I did end up having an irritable uterus as it would contract many times a day starting from about 20 weeks on. I had a false alarm at 32 weeks when I had regular contractions that weren't painful. My belly would just get really hard. My water broke at 34 weeks and I ended up having her then. No one has told me that any of this was connected with the adenomyosis though. I have no idea if it played a role. All I know is that my uterus is different than others without adenomyosis. So sometimes I think I had her early because of it. Who knows though? I hope this helps and I hope you have an easy rest of your pregnancy.

 

[Laura A]

Hi Heart Tree

Thank you so much for your detailed reply and for sharing. I'm really sorry you had so many scares. They must have been so stressful throughout your pregnancies...
I am shaken up every time I spot and mine has not been nearly as long as your experiences.
I actually ended up rushing to emergency at the hospital and was admitted into the ob/gyno ward for two nights for observation as the bleeding continued and my gyno was concerned that it may have been a pre-term premature rupture of membrane (PPROM). The hospital diagnosed me as unlikely to be a PPROM but could not state what the cause was and merely labelled it as a "threatened pregnancy". It's interesting that you mentioned your bleeding was due to a blood clot. The Drs also identified blood clots in my placenta but they did not attribute the bleeding to it. They also didn't link it to my adeno. The end result was very ambiguous as I felt they didn't know enough about adeno to make a more conclusive diagnosis.

Since coming home I've been quite exhausted and have developed a heavy pulling sensation in my lower abdomen. My uterus just doesn't feel stable and it's similar to the feeling I had in the first trimester - heavy, can't walk fast or I feel like my organs will drop out. I'm also having a dull ache like mild period pain, similar to what you described. I think that all this is all linked to my adeno which is now 12 cm diameter and still growing. I am the size of someone carrying twins.

I will see my gyno again for his assessment and update this post to share my experience.
Btw how do I post a Spoiler in case some people don't want certain details of my post?

 

[heart tree]

To do a spoiler, instead of posting a quick reply, hit the "Go Advanced" button. You'll see a smiley face with a black bar over it's eyes. Click on that and it will give you the spoiler tags. Just type what you want in between those tags.

As for what's going on with you, I'm so sorry! My blood clots were always in my uterus, not the placenta. Bleeding in the second trimester is more worrying unfortunately. I'm glad you decided to get checked. If I were you, I would ask to be put on bed rest. I wouldn't take any chances of stressing out your uterus, your body or your baby. But that's me.

I felt that most docs didn't know much about adeno, but from the research I've done, it seems like it goes into remission when pregnant. I'm not sure that your adeno would be causing this, but who knows? There is so much they don't know about it in relation to pregnancy as far as I can tell. I wonder if the adeno makes the uterus less stable for some reason. I can tell you that mine never felt very stable. All those contractions made me feel like I wasn't going to be able to hold her in full term. I actually never thought I would go full term and I didn't! Please keep me updated. I'm sending positive energy your way. I know how stressful a non-perfect pregnancy can be, especially when they can't give you any answers! Rest as much as you can. Stay hydrated. Let others take care of you so you can take care of your baby.

 

[Laura A]

Thanks so much Heart Tree also figured out how to post a spoiler!

Disclaimer - for those who don't want to read details about bleeding during pregnancy with adeno, the below post has been hidden in a spoiler.

Spoiler

I had another bleed a few days after my last post but it was significantly less that the initial bleed, which felt more like my water breaking. I went to consult my gyno and ob. I'm seeing two doctors atm. They both couldn't say exactly what caused the bleed and whether it was amniotic fluid. The hospital didn't test whether it was amniotic fluid because the result can come back as a false positive due to it being tainted with blood. My two doctors both think it's unlikely that it was amniotic fluid as there appeared to be enough fluid surrounding the foetus on the ultrasound. It was also unlikely because the position of the foetus was higher up in my uterus. The bleed could have been from the blood clots in my placenta or from the adenomyosis itself but it's inconclusive.

I was told that it may happen again and unless it was a significant amount I would need to endure it. It sounds like people with adeno will experience non-threatening bleeds during pregnancy. However, I don't think we can treat any bleed lightly especially given that so little is known about the condition. I am not on bed rest (as it is considered bad for circulation for both mother and baby) but I am under house arrest. I am also trying not to bend down or squash my tummy. I haven't felt normal or light in the abdomen since the bleed and it continues to feel unstable so I have to take everything slowly. It's frustrating but I think necessary. I'm not allowed exercise or over exerting myself or lifting anything heavy.

The doctors suspect I will likely deliver early before 32 weeks.

Heart Tree did you deliver naturally or did you have a c-section? If so, was it a normal transverse or a classical (above or below belly button)? Was your c-section elected or it happened after your water broke? You don't have to answer these question if it's too personal.

I may need a classical as my adeno is so huge at the bottom of my abdomen that a normal transverse won't be able to reach the baby. The baby is currently located above my belly button and can only grow up.

My adeno certainly hasn't gone into remission since becoming pregnancy. In fact it was only 3-4cm before pregnancy and has grown to 12cm since. It is fighting for nutrients from the placenta as the placenta has conveniently planted itself on the adeno.

 

[Nikki1979]

Hi all. Just wanted to update that I managed to conceive baby number 2 after 2 years. I cramped throughout the whole pregnancy. He was born early - 33 weeks and is 4 1/2 months old now. Wishing everyone the best of luck.

 

[Praju165]

I hope you are doing well..I know it's been long time but hoping you are still on this page. Congrats on your success of conceiving..I have adenomyosis too and your experience helped me a lot.just wanted to know did your Gp tell you about adenomyosis? I mean how severe it is or what grade is it on?my Gp doesn't say anything 😔😔 they just keep saying because I am on stress that's why I can't conceive.i am 34 and trying from last one year.i am really worried, 😒😒 so after reading your blog I decided to go private.which doctor did you go to? And how much did it cost? Thank you

Hey nimblejim - I do have very mild adenomyosis, which apparently is very common in women who have already had a child. The MAIN reason I couldn't conceive is because I only ovulate from one ovary and that fallopian tube was blocked. I had an HSG - they finally forced the dye through that tube and I got pregnant about 2 days later.

I obviously have no scientific evidence for my theory about my main cause of infertility, but I feel it is too much of a coincidence, considering how easily I got pregnant last time. I am 33 and had my first son at 29 (nearly 30)! In the end it took a very painful 12 months to get pregnant and I am just under 12 weeks along, so I am praying all is OK.

I am terribly sorry for your miscarriages and I hope you conceive very soon and you are right about the extreme stress this causes.

I don't know whether you are in the UK or not? But we found that the NHS were very slow to get anywhere with finding out why we couldn't conceive, so we went privately in the end. It took the NHS over 6 months to find out the same info as we got in just under a month privately. I was worried that age wouldn't be on my side forever and lucky that money isn't too much of an issue.

I wish you all the best for a speedy bfp - secondary infertility really hurts, but is not understood my many

 

[Hopeful17]

Hi everyone,
I've just stumbled across this thread which I am so thankful for!
I have just been diagnosed with Adeno and am waiting to see the GP for further info... typical NHS!
My initial google research has made me so upset and worried about starting a family but this thread has really given me hope.
I am about to turn 30 and recently married. My husband and I have been so excited about starting our family and this has put a real dampener on it.
Fingers crossed we will be lucky like some of you.
We have only been trying for 5 months so we will just have to keep at it! Lucky husband!!