Adenomyosis

Hi heart tree,

I know this is an old post I may be lucky you stumble on it. please I need you to give the details of the professor that can do robotic surgery for adenomyosis.
 
Hi Ejide,

The doctor's name is Arnold Advincula. He works at a hospital in Florida, close to Orlando I think. I never ended up doing the surgery but I spoke to him several times over the phone (I live in California). He was extremely informed, helpful and kind. He had a wonderful bedside manner. May I ask why you are considering surgery at this time? One thing he told me was that there is very little research on surgery for adenomyosis and fertility. Women usually have the surgery after they have children as a way to deal with the pain of the adenomyosis. I was looking at surgery to remove it as a way to increase my chances of carrying a baby to term. After 4 losses I was desperate. He couldn't guarantee that the surgery would perform this function for me. In the end, I opted not to have the surgery and did IUI. I ended up pregnant with my wonderful girl who is now 15 months old. Obviously we all have different stories, but I'd be interested to hear yours and give you any info I can. Here is the website for the doctor. If I don't hear back from you, best of luck. https://www.celebrationgynecology.com/medical-team/physicians/arnold-advincula
 
Hi all

Need some words of comfort. Been diagnosed with mild adenomyosis. Ultrasound results read "endometrial-myometrial junction was focally disrupted, which was typical of mild adenomyosis."

My gynae and the ultrasound tech did not seem to think this would affect fertility but I am reading all sorts of worrying information about increased risk of miscarriage in ANY trimester. I had a chemical pregnancy last month which makes me think I will have problems with implantation and/or carrying a child to term. Anyone with any advice? I don't want invasive surgery until I least have tried to conceive for 6 months but I get a horrible feeling I will be having multiple losses or failing to conceive at all. :cry:
 
Melsie, what caused you to get the ultrasound that diagnosed the adenomyosis? How old are you? Were you having symptoms of adenomyosis? Everything that I've heard about adenomyosis is that it is very difficult to diagnose, especially from an ultrasound. The best way (aside from surgery) is to get an MRI. I had 3 miscarriages before I was diagnosed. The first baby implanted fine but I had a blood clot that caused me to lose the baby at 10 weeks. The other 2 miscarriages were doomed from the beginning. Probably because of my adenomyosis. I had a bunch of tests done to see why I might be losing my pregnancies. One was an HSG where they insert dye into the fallopian tubes and uterus to see if there are any abnormalities. My uterus was an odd shape, so my doctor ordered an MRI and that's how I was diagnosed. I got a second and then third opinion and all of the doctors agreed that I had adenomyosis based on my MRI scan. NONE of my doctors (and I've seen a LOT of them) were ever able to fully detect the adenomyosis on an ultrasound. So my first piece of advice is to take a deep breath and consider getting a second opinion and an MRI. My symptoms have always been mild. I have spotting in between periods and the first 2 days of my period are very crampy. Some women get diagnosed because their symptoms are horrible every day. What caused them to diagnose you?

If you do indeed have adenomyoisis, the good news is that yours is focal, meaning it is in one spot. Diffuse is a tougher kind because it is spread all over your uterus. I also have focal but was told that it is in a place where embryos like to implant. We'll never know why my 2nd and 3rd pregnancies weren't viable, but I do suspect they implanted near the adenomyoisis. I had a 4th loss, an ectopic pregnancy where I had my fallopian tube removed. I also suspect the adenomyosis damaged my tube causing the ectopic.

Here's the good news. At 37 years of age, I gave birth to a gorgeous girl. She turned 2 on Tuesday. Even with 1 tube and the adeno, I still was able to carry a child and she is as healthy as can be. (I did end up having her 6 weeks early, but I've been assured it wasn't because of the adeno). I didn't have time on my side. My first pregnancy was age 34. Hopefully you are younger.

I will also say that surgery isn't really an option for adenomyosis. I was seriously considering it with a leader in the field, but there isn't enough research linking surgery to remove adeno with increased chances of sustaining a pregnancy. They can never fully remove all of the adeno and it could cause uterine rupture once you are pregnant. You can try Lupron, which shuts down your hormones. The idea is to deactivate the adeno for a few months and then once you come off of the Lupron, try and get pregnant right away. I never did this treatment as I was older and Lupron puts you into temporary menopause. I was afraid I would never come out of the menopause!

The unfortunate thing is that not much is known about adenomyosis, so you aren't going to find a lot of literature about it. My losses could have been from the adeno or from the fact that I was older. Who knows? There are other women who never have a problem with their adeno and fertility. In fact, many women don't even know they have it until they are delivering a baby via C-section and are told that they have it. So that's good news. Finally, I just want to encourage you that chemicals and early losses are so incredibly common that just because you've had one, doesn't mean you'll never have a baby. Truly. I never thought I'd have one after my 4th loss, but only 4 months after that loss, I got pregnant with the child who is napping in the next room right now.

Try not to let this spin you out of control. It is a bump in the road right now. If there is any way for you to get an MRI or even another opinion, I highly encourage it. I'm not on this site much anymore, but I'll peek in from time to time to see if you've posted. I'm happy to answer any questions I can. There is hope. I think most of the women on this thread have had at least one baby. It is possible. :hugs:
 
Hi HT

Thanks for your time. Really appreciate it.

I actually suspect I have endometriosis bc I have a lot of the classic symptoms. I'll be 32 at the end of the year. But since my early 20s I've been getting debilitating period pains which leave me in agony without ibruprofen. I get nausea, diarrhea, strong cramps. I also developed really horrible ovulation pain. It would hurt to urinate in that time. And now to add to another checklist, in the last 5 months I'm getting sharp pains with bowel movements. My cramps would also start a day or 2 before my period which never happened before. So all in all I've got major gynae issues. I don't spot and I've never had painful sex but I guess that will soon find its way into my world of reproductive woes :(

These were the symptoms that brought me to a gynae for help. I did have an MRI 3 years ago which never mentioned Adeno but did say my uterus had evidence of "significant fibroid changes" but no mention was followed by the gynae at the time. The MRI said there was no discreet endometriosis plaques found.

I tried to put my gynae issues to one side but the pre period cramps continued to bother me so I went to my local hospital (state funded) and their ultrasounds suspected polyps. They decided to send me for a hysteroscopy which revealed no polyps but a polyploid endometrium. They also did more damage going in for a simple look with a scope by creating a "false passage." Not sure what that even means but it doesn't sound good (turns out since their botched job my uterus has now become retroverted) A subsequent ultrasound from a private doctor said i didn't have polyps but adeno. My gynae doesnt think its a major issue but I remember the previous sonographer who initially suspected polyps said that it was in a place embryos like to implant also. So adeno or polyps, either way I have an abnormal area that is not conducive to implantation. Given that I had a chemical last month I'm pretty sure it had to do with adeno. Don't know what my choices are. A laparoscopy is my last resort if no successful pregnancy happens or i suffer continued miscarriages. But I just needed to hear that Implantation can happen and that embryos won't always look to burrow in a place where it's no good :nope:
 
If it's endo, a laproscopy can definitely remove it. If it really is adeno, they won't be able to remove all of it. I know that more recently the medical community doesn't favor removing endo for fertility purposes, but I know several women who have had it removed and then gone on to have successful pregnancies. If they are polyps, they can be removed too, but I'm guessing you don't want another hysteroscopy after the last one you had. What's a false passage anyway? That's terrifying!

What would be really nice is if your team of doctors could agree on a diagnosis for you! You've been through the ringer. I wish I could tell you what your options are, but it's hard if you don't know exactly what's wrong. What I can tell you is that implantation can happen anywhere in the uterus. Out of my 5 pregnancies, 2 of them definitely implanted in the right spot (even though I ended up losing one to a blood clot). 2 of them definitely implanted, but we're not sure where and they weren't viable from the get go. And one definitely implanted in the wrong place, my fallopian tube. As I've said, my first pregnancy was going fine up until 10 weeks when the blood clot ended it. With my 5th pregnancy, my daughter just found a part of my uterus she liked and burrowed in.

I was under the care of a reproductive endocrinologist at the time due to my losses. I did IUI to conceive her (I also ovulate late, so we had to address that). I took progesterone suppositories for the first trimester. I also found out that even though my thyroid tests were coming back in the very normal range at 2.6, apparently there is a link between recurrent losses and thyroids being above 2.5. So I was put on a thyroid medication. Who knows what the magic formula was, but it worked. I'm here to tell you that there is definitely a chance of implantation happening in the good parts of your uterus. I truly hope you don't have to experience anymore losses. It can feel devastating. If you do, keep remembering that there is hope and it only takes one little egg and one little sperm and one good spot in your uterus to make it all happen.
 
It was mentioned for me when they were investigating my endometriosis - whether that means the two can go together I don't know?

:hugs: though
 
I definitely think the two can go together. They are both the enometrial lining of the uterus that gets trapped either on the outside of the uterus (endometriosis) or within the uterine wall (adenomyosis).
 
Hi. I had a chemical pregnancy in April and after that loss, I was having shooting pains in my left ovary area. Had an ultrasound done and results said "findings suggestive of focal adenomyosis". My OB/GYN said that adenomyosis doesn't cause miscarriages just that it might take slightly longer to get pregnant.

After doing some research, I am scared that I might never be able to have another baby. I have recently also started taking thyroid medication as my TSH is always between 3.1-3.5. I actually had to fight for it as my GP thinks TSH is normal as long as it is below 5.

I turned 35 2 months ago and am just praying that I will be able to have another child.
 
Hi all

Need some words of comfort. Been diagnosed with mild adenomyosis. Ultrasound results read "endometrial-myometrial junction was focally disrupted, which was typical of mild adenomyosis."

My gynae and the ultrasound tech did not seem to think this would affect fertility but I am reading all sorts of worrying information about increased risk of miscarriage in ANY trimester. I had a chemical pregnancy last month which makes me think I will have problems with implantation and/or carrying a child to term. Anyone with any advice? I don't want invasive surgery until I least have tried to conceive for 6 months but I get a horrible feeling I will be having multiple losses or failing to conceive at all. :cry:


I came across this looking for advice on adenomyosis after pregnancy. Wanted to let u know. I have severe endometriosis and adenomyosis. Have gad 5 surgeries and done depo Lupron over the past ten years. I am 33. My eggs were going bad due to it all. But I wanted a child. So I did fertility and got pregnant with my second iui. I didn't have any conplications at all..had a healthy pregnany and now have a very healthy 1 month baby girl!!!!!! :) I just wanted to give you some hope...it can happen. I am now having some pain...unfortunately. :(
 
I just came across this thread. I have a 5cm mid posterior adenomyosis in d uterus. The only symptoms I have is pms and pain on the first and second day of my period. No heavy bleeding, no spotting. I just started trying to conceive and am scared. @heart tree and others that has passed through this journey, how long did it take u to conceive? Is it possible to conceive with 5cm mass of adeno?
 
Icecatc, I'm sorry you had to find yourself in this thread. Let me just say that adenomyoisis is not necessarily an obstacle in getting and staying pregnant. I wasn't diagnosed with it until I had my 3rd miscarriage. So obviously I was getting pregnant with it. Mine was 2.5 cm and focal. I'm guessing yours is focal too. That's actually good news because it isn't compromising your whole uterus like the diffuse type can. Many, many women get pregnant and stay pregnant without ever knowing they had adenomyoisis. These women find out they have it during a C-section! I don't think it would interfere with your ability to get pregnant necessarily. There is some research linking adenomyosis and endometriosis to miscarriages. But there isn't enough research that I could ever find that made a definitive conclusion about it.

Did you read this whole thread? I detailed my experience on other posts. It took me a while to conceive my first pregnancy, but there were other circumstances. My hormones don't regulate properly so I ovulate late and my progesterone is deficient. Anyway, once I did conceive the first time I had a blood clot in my uterus that caused my loss. There was no reason to believe the adeno caused it at all. The baby was growing perfectly. My next 2 losses might have been due to the adeno, but we just don't know. The tissue was never tested, so we don't know if they had genetic issues or had implanted near the adeno and weren't getting the proper blood flow. My 4th loss was an ectopic. The baby got stuck in my fallopian tube. That could have been from the adeno, but again, we just don't know. Women with endo are at more risk for ectopics, so I assume the same to be true with adeno. My final pregnancy was perfect. I'm getting yelled at by that little girl right now because she wants to watch Dora the Explorer! I was actually told by a doctor that the location of my adeno meant that I would never carry a baby to term. He was wrong. (Well, she was actually 6 weeks early, but that had nothing to do with the adeno). She is healthy and just fine.

Here's my advice. Just carry on trying to conceive. Make sure you know when you ovulate. Have sex around that time as much as possible. And enjoy life. My story is mine. It won't be yours. You may end up conceiving right away and have no issues whatsoever. I'm not sure how old you are. If you are under 35, which I suspect you are, then usually they won't do any tests for fertility until you've actively been trying for a year. If you don't find yourself pregnant immediately, don't jump to the conclusion that the adeno is to blame. It might just be timing. I definitely understand why you feel scared. I've been there too. But I can also say that of all the women I've gotten to know who have adeno have gone on to have a baby at some point. Have faith it will happen. I hope this helps!
 
I just came across this thread. I have a 5cm mid posterior adenomyosis in d uterus. The only symptoms I have is pms and pain on the first and second day of my period. No heavy bleeding, no spotting. I just started trying to conceive and am scared. @heart tree and others that has passed through this journey, how long did it take u to conceive? Is it possible to conceive with 5cm mass of adeno?

Sorry to hear u r in the same boat.
Adem sux! ;) I have severe endometriosis and adenomyosis. Have had many many many surgeries. ...meds....depo lupron. The whole nine yards. I am single and wanted a baby. So I went to a fertility clinic and learned that my eggs were getting bad due to the above. So I tried an iui with donor sperm. I got pregnant on my second iui :) :) :) I had a rough pregnancy was ill alot and cramped alot! But went a week over and now have a very healthy beautiful baby girl who will be 6 months old next month. It is possible. I am now waiting a few more months and I will be gettjng my hysterectomy! Because it has all come back! :( Just don't give up!!!! Good luck to yoi!
 
Thanks for responding to my post, yours stories gve me hope. My period is irregular as well, I'll visit an ob/gynea to get it regulated and probably he may give me clomid to stimulate ovulation b'cos I don't think I'm ovulating. I'll keep u updated and I hope my next post may even be BFP.
 
Good luck to you! You definitely need to get your ovulation under control before you can do anything else. It sounds like Birdlee has adeno much worse than you and she has her gorgeous child. It's definitely possible. Please keep us posted.
 
Thanks for responding to my post, yours stories gve me hope. My period is irregular as well, I'll visit an ob/gynea to get it regulated and probably he may give me clomid to stimulate ovulation b'cos I don't think I'm ovulating. I'll keep u updated and I hope my next post may even be BFP.

Good luck!!! My periods were insane...had one for 19 months straight I kid you not! Then once didn't have one for about 2 years. I was not ovulating at all!!! So I had to get mine started with clomid as well. Hope u get a BFP soon! :)
 
Good luck to you! You definitely need to get your ovulation under control before you can do anything else. It sounds like Birdlee has adeno much worse than you and she has her gorgeous child. It's definitely possible. Please keep us posted.

Thank u so much!!! It's definitely possible. Takes alot out of you but completely worth it in the end!!!
 
Thanks for responding to my post, yours stories gve me hope. My period is irregular as well, I'll visit an ob/gynea to get it regulated and probably he may give me clomid to stimulate ovulation b'cos I don't think I'm ovulating. I'll keep u updated and I hope my next post may even be BFP.

Good luck!!! My periods were insane...had one for 19 months straight I kid you not! Then once didn't have one for about 2 years. I was not ovulating at all!!! So I had to get mine started with clomid as well. Hope u get a BFP soon! :)
 
Hi everyone hope this thread is still active, I have been TTC for 12 months and after 3 early miscarriages and numerous menstrual problems I finally had an ultrasound and TVS last week my results came back today. I a 'large' focal adenomyoma at the back of my uterus. So far my ovaries and the rest of my uterus seems healthy but I'm struggling to be positive about it. I have had a look on the net but it all seems pretty negative and the only options seem pain killers, contraceptives and hysterectomy I'm only 26 and me and my partner have been so set on starting a family it's so disheartening, does anyone have any positive advice or been in a similar situation and managed to conceive?
 
Keep_Smiling, I'm so sorry you've had so many losses and now have this diagnosis. I also was diagnosed with it after 3 miscarriages. Mine was also focal and I felt very disheartened because there seems to be nothing that could be done about it. I had one more miscarriage (an ectopic and had to have my fallopian tube removed) before I went on to get pregnant with my daughter. She's 3 now. I was 36 when I was diagnosed so time wasn't on my side at all. I think if you are determined to have a baby then all you can do is keep trying. You have age on your side which is very good news. I know how heartbreaking loss after loss is. I also know that almost every woman I know who has suffered recurrent losses eventually goes on to have a baby if they keep trying or if they have age on their side. Adenomyosis doesn't mean you can't have children. It can present challenges to having a baby though. Are you working with a specialist? Since you've had 3 losses, you should be able to work with someone who has experience with recurrent losses. I would suggest getting an MRI to make sure that you have adenomyosis. Being diagnosed with it just through an ultrasound isn't a definitive way to get diagnosed. You need to get the full battery of tests now to see if there are other reasons that you are losing your babies. It may not be the adenomyosis but rather a blood clotting issue, thyroid, vitamin D deficiency, etc. That's why it's important to work with a specialist. You may want to read this whole thread from the beginning to see how the other women fared. There is hope. Adenomyosis does not mean you won't have a baby. I would also recommend joining the recurrent miscarriage thread. They are a great group of women and they can give you ideas about doctors to talk to and tests that you should be getting. It's also just helpful to get support from other women who are going through what you are going through. Having recurrent losses can feel very lonely, but it doesn't have to. https://babyandbump.momtastic.com/miscarriage-support/127351-recurrent-miscarriage-thread.html
 

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