Adenomyosis

[louliz]

Hey I have been diagnosed with adenomyosis too. I am only 25 and have never had a child. I don't have any symptoms and the adenomyosis was discovered when I had a vaginal scan for something else.
My doctor also told me it should not impact upon fertility - but like you I am also concerned it will. I have been trying for around 5 months after coming off long term bbp's. I don't know when I should tsrat to worry - dictors have told me to go back within 1 year of ttc

 

[mushypea]

I think one year of ttc is probably right. If you are very worried you can always get fertility tests done privately x

 

[louliz]

I'm not worried - it's just this adenomyosis thing - I can't help thinking it is going to have an impact. I suppose I've just got to keep on trying.

 

[louliz]

Do you know of anyone who has concieved whilst they have had adenomyosis? Or read about it anywhere?

xx

 

[heart tree]

I've conceived 5 times with it. I miscarried 4 of them though. This pregnancy is the best one I've had to date. I was told my adeno might have been the reason for my losses but no one can prove it. I think given your age, a year is a fair time to see if you'll get pregnant on your own. There aren't great options when it comes to adeno and fertility, so in my opinion, your best bet is to try naturally for now. The problem with adenomyosis is that there isn't a lot of research and data about it as it relates to fertility. I'm sure you've tried googling it and haven't come up with much. It's very frustrating. I'm happy to answer any questions you have based on my own personal experiences and research. Just let me know. Good luck to you.

 

[louliz]

I've conceived 5 times with it. I miscarried 4 of them though. This pregnancy is the best one I've had to date. I was told my adeno might have been the reason for my losses but no one can prove it. I think given your age, a year is a fair time to see if you'll get pregnant on your own. There aren't great options when it comes to adeno and fertility, so in my opinion, your best bet is to try naturally for now. The problem with adenomyosis is that there isn't a lot of research and data about it as it relates to fertility. I'm sure you've tried googling it and haven't come up with much. It's very frustrating. I'm happy to answer any questions you have based on my own personal experiences and research. Just let me know. Good luck to you.

Hi Heart tree,

I am sorry to hear about your losses but thrilled you now have a lovely We're NTNP at the moment just to relax a little. It's weird but every time we don't BD at the right time 'i think 'was this the month and I missed it?'
did you get any symptoms from your adeno? I have no symptoms at all and only found out as a result of the scan for spotting after BCPs (which has now cleared up woo-hoo)

And yes I have googles until the cows came home and go absolutely nowhere!! But it is very inspiring to hear of your successful TTC journey.

Thank you

 

[mushypea]

My daughter was conceived with adenomyosis, I'm not sure whether I had it when I conceived my son as apparently it can develop after a pregnancy.

 

[louliz]

My daughter was conceived with adenomyosis, I'm not sure whether I had it when I conceived my son as apparently it can develop after a pregnancy.

Thank you - this has given me hope

 

[heart tree]

Louliz, I had some symptoms, but not many. I often had mid-cycle bleeding, but I didn't have it every cycle. I did have one month that I bled for a good week mid-cycle and they thought it was a ruptured cyst. Usually though, it would only be a day or two. But it didn't coincide with Ov, so I knew it wasn't from that.

The only other possible symptom is that my cramps during the first two days of AF are pretty painful. But as long as I take ibuprofen regularly during those two days, I'm fine. I know that adeno can cause very painful periods, but I don't have anything else to compare mine too. When I was on the pill, I didn't have those pains. I was on it for 17 years. When I went off of it, my cramps were bad, but not unmanageable. And I never had cramps at any other times during my cycle. The only reason I was diagnosed was because of my recurrent losses. They couldn't find anything else wrong with me so did an HSG (where they insert dye into the uterus) and saw I had a slightly abnormally shaped uterus. Then they did an MRI and diagnosed me. If it weren't for the losses, I wouldn't know I had it.

I have read that it can make it harder to get pregnant. I would suggest that if you are really wanting to get pregnant soon, the NTNP plan might not be the best route for you. You might need to be more proactive. It wasn't an issue for me, as I've been pregnant 5 times, but I did track ovulation and made sure to BD on the right days.

Much luck to you!

 

[louliz]

Thanks again heart tree. I'm not in a rush to get pregnant atm because we are moving and trying to sort some other things out. I am only worried that the adeno might mean I don't have forever to try (not sure) We missed BDing around my O time this month so I know this month is defiantly out of the question so I've got about another 3 weeks until we can try again

 

[Ej83]

Hello all

I was diagnosed with adenomyosis in Feb as we were about to do an IVF cycle, they found what they thought was a large fibroid. I am so afraid that I wont be able to conceive during my august cycle. During my surgery they also found that one tube was clear and the other was filled with fluid. I was told that both were blocked 2 years ago which is the reason we were doing IVF. So now they want me to try natural until the August IVF. I had a large posterior adenomyoma that they removed. My RE also said that she cut a tiny piece of my uterus in the anterior to see if that same tissue from the adenomyoma was there and she said it was. so im afraid I may have diffuse. My periods have always been horrible. over the last 3-4 years they have gotten worse which i didnt even think was possible. I bleed heavy for 2 days but thats it. I see alot of women have bad pain and some dont but most with adeno bleed forever. I dont have mid cycle bleeding. My period is like clockwork and I bleed heavily with clots for the first 2 days then its light.

Has anyone been able to get pregnant with diffuse adenomyosis? My RE is positive that I will conceive but I know I haven't been able to over the last 10 years..we have NTNP since 01 when I had a D&C..

I'm 29 and we are ready to move on to the next chapter of our lives

there are so many issues...I'm wondering if the infected tube caused problems..or if the other was blocked until dye went through or if adeno has been preventing it...

 

[heart tree]

Ej I'm sorry you are dealing with this stress. I have focal adenomyosis but I do believe it is possible to conceive with diffuse. I read that adenomyosis can increase the chances of ectopic pregnancies which is something I had to go through. I don't know if the adenomyosis affected the tube or not.

Honestly I'm not sure you will get answers to your questions. Adenomyosis is still not well known in the fertility world. They treat it for pain, not fertility. I've spoken to several specialists all over the country and I was never able to get conclusive answers.

I understand your fears. I had similar ones. I was told I would never carry a baby but I'm 5 months pregnant now. You just have to keep pushing forward and hope for the best. I don't think it's impossible for you. It might just be more challenging.

It's very scary and lonely. I hope you find the support you need on this site.

 

[mushypea]

As heartree says, I was treated for pain and not fertility with respect to the adenomyosis. I bleed extremely heavily and painfully for about 5 days, then lightly for up to 9 days. I have diffuse adenomyosis though and interestingly had a blockage in my tube. I got pregnant with diffuse adenomyosis and apparently women can develop it after having a baby anyway - so diffuse shouldn't be a problem for conception. But of course hardly anyone knows much about it and there are so many differing opinions.

Good luck

 

[Mrs.Brown1989]

Me and my husband has had two miscarriages. Nobody could tell us anything about what went wrong or how to fix it. Then, last November my Ob/Gyn doctor sent me to get an MRI done said," One of her specialists friends tld her to check within my uterus walls for adenomyosis." Within two weeks I got the news that I did have it. It was devasting for me and my husband to know that there was nothing we could do to treat the problem.

What is your secret to conviecing?

Thanks

 

[heart tree]

Mrs. Brown, I'm so sorry for your losses. Having suffered 4 losses myself, I know how devastating it is.

I conceived all of those pregnancies naturally. They never tested the tissues on any of them, so we don't know if they were chromosomally abnormal or not. They might have been bad luck. They might have been from the adenomyosis. No one can tell me for sure.

With this pregnancy, I did IUI. I took Femara (similar to Clomid) to help my eggs mature more quickly, I did the hcg trigger shot and then I was inseminated with my husband's sperm. I took progesterone suppositories 3 days after the IUI all the way through 15 weeks of my pregnancy. I also am on a thyroid medication. My thyroid was normal at 2.6, but there is new research linking thyroids above 2.5 with recurrent losses. So I started taking the thyroid med one month before my IUI. I also had a polyp removed before my IUI so my uterus was nice and clean.

Have you had tests for recurrent losses? Many places won't do them until you've had 3 losses, but since you've already had an MRI, maybe they would be willing to do all the recurrent loss blood tests too. Your losses might not be due to the adenomyosis. You should have your thyroid tested, you should be tested for blood clotting disorders as well. There are a lot of tests to get. There is a recurrent miscarriage thread on this site that you should join. The ladies there are awesome. There is a list of tests on the front page of that thread that you should get. https://www.babyandbump.com/miscarriage-support/127351-recurrent-miscarriage-thread.html

Good luck to you. I'm so sorry you found us under such sad circumstances. There is still hope for you though. And if your screen name indicates your age (born in 1989), then you have loads of time. I was born in 1974 and here I am at almost 24 weeks now.

 

[shermanta76]

I go to the doctors today and I am told I have this. I don't know if I want to cry or be happy with what I've read so far.

What got me to today's diagnosis? I am a health mom of 3 boys-11, 13, and 16-I am getting ready to get remarried. A year ago this time I had a miscarriage and a DnC. Things seemed to have gone well. No side effects, no pain, no nothing. Life went on. Until month after month went by and I was not conceiving. In July we were at the beach and I stood up to go in the water and blood just gushed everywhere. Another miscarriage. This is when angst set in. I had delivered 3 very healthy boys and now I'm having issues. I just chalked it up to age, 35 then.

Well, month after month, I am more and more obsessed. Tracking my periods, my temp, my OV...running home at lunch when the timing is right and nothing. I kept putting off going back to the dr for this very reason. I just wanted it to be that my body is not ready and that God wants us to officially be married first (June 23, 2012 is the big day). I know stress adds to the inability to conceive, yadda yadda.

Well I finally went back to the doc a week ago. New insurance new doc. She reviews my info, feels around the uterus says she does not think it's my bady as the reason we cannot conceive. She orders the ultrasound anyway, appt was today. The end result is this-adenomyosis, and here I am stressing more without even having the dr consult yet.

I have complete sympathy with everyone here. I guess right now my biggest mental obstacle is knowing that I produce very healthy babies and have never had an issue with any pregnancy, yet here I am, with the one person I choose to have a child with and we can't.

I know my road may be short or long depending on the results and what I am prepared to go through, but I wanted to take a moment and share my story and say thanks for the information I have found so far.

Currently my periods are regular in cycle time. Day 1 is like making an appearance day, days 2 and 3-forget it...cramps that knock me to the floor and clots that make a hail storm look like a mist. Then days 4, 5 and 6 are light and without issue. I only noticed the onset of pain after age 30. Each time it seems to progressively get worse and it was not until the last few months that I noticed pain close to my cycle when having sex. Again, I just chalked all this up to age. At least I know what questions to ask when I do go see the dr.

 

[mushypea]

Shermanta - have faith I was diagnosed after having my son - I conceived him extremely easily, but struggled with my daughter. My periods are very like how you describe and I am 35 now. Adenomyosis makes it harder to conceive, but my consultant said most women develop it after childbirth to some extent.

 

[Ej83]

hello ladies! Thanks for the replies!

Mushy? You said you have diffuse adeno as well? do you know how bad it is? I had an HSG the other day and the dye went to into my adeno sockets...about 3/4 of my uterus is diffused with adeno..my RE says is severe. I have never had kids so I dont know where it comes from and Im 29. anyhow, its throught 3/4 of the uterus but not entirely..so you know how bad yours is? I'm trying to decide if we should even try IVF first or just do a gestational carrier

 

[heart tree]

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?

 

[Ej83]

oh really? wow! yeah my RE said she would do IVF on me if I were going to go thru her. We are military so we are going to do it on a military installation where the Drs dont get paid for procedures....I have a seperate RE cause the IVF is in another state so the local RE is doing all of my work here. as for IVF, they are Gov contracted drs so they get paid regardless..but yeah, my IVF dr said he's done several women with adeno. and its just a matter of where the baby implants. When they did my saline sono, they said my uterus looked great. The HSG is what showed the pockets of adeno. I could actually see how the endometrial tissue invaded the myometrium and they are concerned that a baby would implant in the myometrium but my IVF dr and my RE at home says its very rare.

I was even approved for IVF through a clinical trial at new hope..