Adenomyosis condition

[SoniaMM]

Hello, I was just told I have some infection in my pelvis and some adenomyosis. We are trying to conceive. Is that something I should be worried about? I would appreciate it if anybody able to share their experiences

How did they diagnose the adenomyosis? It’s very difficult to diagnose properly without a hysterectomy. I have endometriosis and they were able to identify adenomyosis on an MRI.

If you haven’t had a laparoscopy and have been having difficulty conceiving, and particularly if you have symptoms of endometriosis then it’s worth asking for this to investigate.

I was diagnosed with endometriosis at 22, adenomyosis in my early 30s. I conceived by twins at 33 and it didn’t cause any difficulties conceiving or carrying the pregnancy.

@SinkGirl thanks so much for your quick response and sharing your experiences. They were able to diagnosis my condition through internal transvaginal scan. I do have stomach cramps, but that’s just the last month or so, possibly due to the infection but other than that I’m having the normal cycles without any bleeding in between. That’s the bit I don’t understand why I would have this diagnosis. I’m pleased to hear you’ve had a healthy pregnancy and having not one but two babies are excellent! May I ask how long have you been trying? Did they say there is a chance to reduce fertility at all? Thanks

Because I have endometriosis and adenomyosis I was told I was very likely to have difficulty conceiving. We didn’t try for years as I was always on some hormonal treatment or other. When we did try, I had surgery about six months beforehand to remove as much endometriosis as possible then came off the pill - I actually got pregnant right away which was a massive shock to everyone.

About 40% of women with endometriosis have difficulty conceiving without help - I’m not sure what the statistics are for just adenomyosis on its own. But endometriosis can’t be diagnosed without a surgical investigation so it’s difficult to know whether you have one or both.

Adenomyosis is a tricky one as it’s inside the muscle wall of the uterus. The most common symptom is pain throughout your cycle but not everyone who has it has any symptoms. They don’t fully understand why these illnesses impact pregnancy - in some cases there’s an obvious cause like disease or scarring of the ovaries or tubes, but you really can’t predict from the extent of the symptoms or disease whether it will be difficult to conceive.

If you aren’t able to conceive after a reasonable time then I would definitely ask for more investigation - if you have endometriosis as well then having surgery to remove this can improve your chances of conceiving in the following 6-12 months.

I have adenomyosis without endometriosis and am now 37+3 pregnant. I was worried about it making conception challenging, but the specialist I saw initially who diagnosed me said that actually, without endometriosis (which complicates things), there shouldn't be any unusual issues. I'm 36 and - very luckily - it only took a couple of months to conceive.

Thanks @SinkGirl that’s really good to know! but then you’ve had a surgery to remove endometriosis - what about adenomyosis, was that not affected? My doctor said I have SOME of that so it could be mild, I’m not even sure what that means. I’m waiting to receive a full report. There doesn’t seem to be a lot of information on this topic out there, so thank you again for reaching out.

@SJC270 thank you for your response and excellent to hear you’ve been able to conceive naturally. I’m going to find out more about whether there is anything else I may have which may complicate things as you say, but good to know! I hope it all goes well for you.

Do we know if there are any obvious symptoms for either of condition that I should be aware of? Or anything that I could help improve my fertility e.g. diet or exercise?

Thanks!

For me, my only symptoms are very heavy and very painful periods, which occasionally trigger muscle spasming. I was put on the mini pill which stopped my periods (hurrah!) so coming off them for six months before we ttc was painful!

Adenomyosis can’t be removed in most cases, other than a hysterectomy obviously, because it’s in the muscle wall of the uterus. As I said, it’s really difficult to diagnose unless they’re examining a uterus after hysterectomy - from an ultrasound they may have seen that your uterus looks bulky and therefore can reasonably guess that you have adenomyosis.

Hi @SoniaMM I know this thread is a few months old but wondered if you had found anything else out?
I have just been told I have adenomyosis after an MRI scan for something else. However we have been ttc for 19 months and start IVF next month. This is due to male factor infertility but I don't know how much this adenomyosis maybe affecting our chances.

Hi @Narwhat88 thanks for reaching out :) no, I am actually now pregnant myself. It came as a bit shock, especially after what I said before about my adenomoysis so I wouldn’t worry about it at all. I mean, they did say I have SOME so it could be mild. I think you guys should continue as normal :) good luck!

@SoniaMM thank you for replying and congratulations! It seems it doesn't always cause issues then so I'm hoping this won't have too much of an effect on our ivf. I have no idea how bad mine is, will have to wait and see x

@Narwhal88 You should be able to find out how serious your condition is. You can always ask for the full report with details from your scan from your doctor, which I did.
Also, you mentioned you've been trying for 19 months? On average I would say people are able to conceive within 2 years so I'm not sure why you want to try IVF, or is that something your doctor recommended?

@SoniaMM I picked up the full report after work this evening so will have a read through it. We have been referred for IVF by our NHS consultant as we have severe sperm issues. So we need IVF anyway regardless.

@Narwhal88 Ok, that’s good. I hope it isn’t all too bad :) do keep us updated how you are getting on x

Hi
Just reading some positive story’s, so I have 3 children already so I’m very lucky but I would love a 4th as I’m 37 years old so will be my last, but I have been told I have Adenomyosis and risk of miscarriage and more complications, can the doctors tell how bad the Adenomyosis is by the scan and does it depend how bad it is to the risk of complications, feel like I long for a 4th but scared now x

@Nicola1308 I too am 37 and have one child born via c section and have adenomyosis. It's been 3 years now and no success conceiving another. My consultant is very reluctant to admit that the condition is preventing me from conceiving and wants us to do IVF but I have doubts that will work either as I have never had any issues before conceiving my son. How did you find out you have adenomyosis? X

I started spotting around ovulation, the doctor sent me for a scan that’s when they said I have Adenomyosis and pcos which I knew I’ve had for years but I didn’t know about the Adenomyosis, I’ve had 2 C sections so that’s probably why, I’ve read some things saying it shouldn’t affect getting pregnant it’s the risk through pregnancy but then others say harder to fall pregnant x

NICOLA@1308 I had an MRI which confirmed I have adenomyosis and I've read the same but I feel it has to affect fertility as I said before nothing else has changed for us other than being a bit older. I'm tempted to try some kind of hormonal therapy to soften my womb and help with estrogen as I think that feeds the condition. It's a minefield trying to find reliable info! X

Have you been trying to conceive? Oh that sounds good, what therapy is that? I also have PCOS but I’ve had that for years and had 2 children after being diagnosed with that x

@Narwhal88 just wanted to say I am in the same boat as you. Went into ivf due to severe male factor and on a scan they saw a tiny bit of what could be adenomyosis. Such a bummer when you think you are dealing with one issue only to find another. To reassure you both doctors at both clinics have said they really don't think it's an issue. They have said if I am worried I can do down regulation before I have the transfer (so freeze all) to calm down any associated inflammation but this was more for peace of mind for me rather than their advice. Please feel free to PM me as I have already been through a cycle and on to my second with exactly the same issues as you. Good luck with it all!

Hi All, I know this is an older thread but I’m struggling with adenomyosis diagnosis. Long story short I’ve got pregnant naturally twice within the first 2 months of trying. The first being my 4 year old and the second we lost at 19 weeks in feb 2021. TTC for another 2 years and nothing. Started IVF. Failed fresh. Down Reg then failed frozen. Now the focal adenonyoma has grown and it also touches the lining. I just feel at a complete loss because it’s likely this is the issue and it can’t be removed and I’m sure it’s what’s stopping me getting pregnant after no issues before.

anyone else?