Pregnancy with Adenomyosis

[Lilbear14]

Afternoon all! I am new here and I am currently 5 weeks pregnant.
A few years ago I was diagnosed with adenomyosis and in all honesty I thought my child bearing days were over.
Luckily, we have managed to conceive and we are really excited.
But I am also absolutely terrified something will go wrong.
I'm due to see the midwife for the first time in 2 weeks, which I will be mentioning my concerns.

Has anyone got any experience with pregnancy and adenomyosis ?
Biggest concern is that it's not going to be taken seriously by any health professionals as noone seems to know much about it anyway.
Thank you all

Hi… thank you for that, can I ask what does Dhea do and where can you get it from? I’m worried that Adenomyosis will get worse and be impossible to conceive x

In my experience, now 12 +1, doctors are still monitoring. I have cramping intermittently all the time and it's so scary. I had a suchorionic hematoma (more common with IVF), that's taking forever to heal and I don't believe the adenomyosis helps. My doctor describes it as "fibromyalgia of the uterus". It just stays irritable at times. Sex has been very restricted and I'm over aware of my body. On the bright side, everytime I run to the doctor for reassurance, baby boy had a strong heartbeat and is doing just fine practicing his ninja moves. Fortunately he doesn't feel the discomfort that I feel. I

Hey, dhea is a steroid and it’s not licensed in the uk. You really need to read up on it and I’m not sure if it is ok with PCOS. I read and researched for a good year and only decided to take it for my ivf cycles with nothing to loose, it’s meant to increase egg quality but if womb is still hostile not sure it helps. I know for me it was a balance of calming the adenomyosis and endo down before trying ivf and to get pregnant. I was having horrible pain, bleeding and it wasn’t just during my cycles and that all calmed after zolodex.

Hi, at the moment I’m taking COQ10 and conception vitamins, I worry about implantation if things get worse and my age don’t help, hopefully COQ10 helps the quality of my eggs and then luck that implantation take place on healthy tissue. Thank you so much for your advise x

Hi, do you have an endo/ adenomyosis specialist you can see to discuss options. Unfortunately for people with our conditions there are so many variables that all need to be right adenomyosis & endo make a hostile environment for sperm. They don’t help create good healthy eggs as again our environment is hostile and then it’s got to get to the womb and then find a spot to implant. I do believe supplements help with this but whilst we have periods we can’t stop that awful condition and then if your not having periods you can’t even try to get pregnant.
I haven’t had many periods in the last year due to 6 months on zolodex following by down regulation drugs & then stims for first cycle then had 2 periods before going back on down regulation drugs again for 2 months maybe more as I opted for this instead of zolodex between rounds, my ivf consultant didn’t want me to have any more periods between rounds as bleeding activated the adenomyosis and endo she believed. I was also looking into surgery. X

Hi… no I haven’t seen a specialist only a Gynaecologist and he said you can’t worry about something you can’t change if it happens it happens if not just enjoy your life, okay so that probably helped not having them periods, I was thinking about going on the pill to see if that helped but I suppose that will only help stop it from getting worse x

Hi, I have just stumbled across this in a desperate search for success stories. I have one son who is nearly 2 and I have recently been diagnosed with adenmyosis. I think I had it before him as I suffered unexplained miscarriages and have since but just want to know if anyone has made it through their pregnancy with this. All I can find is horror stories- nothing positive!

Hi
I’d really push to see a specialist as they will be able to give you much better information. Even perhaps look into it privately if you can. That’s just my opinion I spent a lot of time being advised by a gynaecologist with no specialist in endometriosis or adenomyosis it was only once I had an ultrasound and MRI that showed the extent of mine that I was seen by a specialist and then had some answers and a plan. I didn’t get great news but I had answers and was able to get a plan together. X

Hi Kesh22

I am so glad to hear that everything is going fine with your pregnancy. We had been TTC for almost 9 years now. I was diagnosed with adenomyosis about 3 years ago and we had been going for fertility treatments for almost 1 year now. I am currently being monitored for my bhcg. I had one done Oct 4, with bhcg level of 20.21 and then after 48 hrs, it was at 56.69. My OB said that it is rising appropriately but it is still slow (?!?) That is why I am going back tomorrow to see if it doubled. Anyway, my concern is I am feeling some dull cramps / pain on my lower right pelvic area and radiates towards my right lower back ( I always felt that type of pain before I had my period before falling pregnant with this.) I am quite concerned if this is because of my adeno or is it a possible ectopic. I told my OB about this and she just told me to take tylenol or to go to ER if the pain becomes severe or I have shoulder pain.
So I wanted to know what type of pain you felt in your early weeks in pregnancy. Does it come and go or is it constant? And how long did it last? Because mine is almost 2 weeks now, but there are a few days that i dont feel it at all.

Hope I can get more info on this. It would help put my mind at ease. 😁

Hi can I ask how you went. I’m 46. Just diagnosed with adymyosis and am due to have an implant next month. Am so scared. I want a baby so badly.

Hi, I was diagnosed with adenomyosis nearly 2 years ago & I fell pregnant in May 2021 in the 1st 3 months I still was getting loads of pain but all stopped after that. My pregnancy wasn't planned so I was shocked to say the least lol only 1 time we didn't use protection & boom I'm pregnant. It took longer in my 1st pregnancy 3 years ago was trying for over a year & didn't suffer from adenomyosis at the time I'm 41 and had a healthy baby girl 6 weeks ago the doctors ignored me every time I mentioned it & said it be fine they didn't really care or even put it on my records!! So on a happy note I didn't experience any difficulties due to adenomyosis there is hope. I have just started my 1st period after pregnancy and it's very heavy but that's to be expected after having a baby but I'm pain free at the moment yay. Hope this gives you a little peace of mind.

Hi, I am 28 and just been diagnosed with adeno. I have been actively trying for a baby for 2years now. I had a miscarriage 3 years ago and my periods have never been the same, they last a whole month,very heavy and painful. I'm waiting for an appt with gyno. I'm just wondering if anyone has found anything that works for them for lighting their periods? Also anything you do that may help you concieve naturally? I'm contemplating whether to hop on contraception help my adeno plus chances of getting pregnant, but also worried I could make things worse. Please help

Hi All,

I’m wondering if anyone can help. I had a MC at 19 weeks 2 years ago and have been TTC ever since with no luck. I’ve got pregnant naturally twice with no problems but obviously lost our girl.

i started private consultations etc as about 6 months after the MC I started getting a whole week of brown spotting before my periods which I’ve never had before. Upon starting IVF last October I got told I had adenomyosis! I had a fresh transfer in Jan which failed so now I’m on a 2 month down regulation before my FET. I had to push for 2 months as she wanted to give me 1. I’ve been reading success stories online but just worried incase it doesn’t work for me likewise when I got my hopes up when I was on clomid and progesterone thinking it would work so I don’t want that disappointment again. Xx

Hi there - so sorry to hear of your loss and everything you are going through.
Just thought I'd share a positive story: I have adenomyosis and endometriosis. The rationale for most of my IVF treatment was focussed on the Endo as mr Dr's view was there's only so much you can do with the adenomyosis. However down regulation like you have mentioned was used. Initial eith Buserelin but then longer periods using prostap both before a fresh stimulation cycle and shorter stints before FET's. We had no luck over 6 years of 6 IVF rounds until we started to explore immune suppressants (dexamethasone and Humira) alongside PGT-A testing. Both times using immunes I had some level of success. A chemical pregnancy and then a successful one - we now have a 13 month old little boy. I recall the down reg having a positive effect on the adeno as the DR commented that the lining looked calmer etc and not grainy etc. wishing you all the very best. I know how it feels to feel a bit stranded and truth be told when ours worked I was giving up hope and just going through the motions. It's very tough and I'll be thinking of you. Good luck xxxx

@flowergirl2020 thank you so so much for replying. This feels like such a lonely place and frustrating as being pregnant before and then nothing for 2 years I just knew something had changed. I’m so happy it’s worked out for you and you have your son after so many years of IVF cycles.

I lost due to an infection caused by covid so I’m just so saddened by it. After the loss sorry for TMI but the texture of my periods changed. Then around 6 months later I started getting brown spotting before and after period. I was so upset after the loss but thought I’d concieve again. I know immunes is linked to endo and likely adeno so I did ask for an immune protocol but they said no. Which is frustrating. Just whilst I’m down Reg for 2 months I don’t want it to take over 3 months per transfer. I’ve paid for a 2 cycle multi cycle and only have 3 Years to use it plus don’t more months of heartbreak too. I don’t see why they won’t just help me out when I’m paying anyway? Buserelin wasn’t in stock so I went straight to the prostap on cycle day one. I need to take my next one next Friday then 2 weeks later scan to check for down Reg. It’s strange you say that because on transfer day my lining looked like a grainy puffy cloud it wasn’t smooth looking like I’ve seen on transfer pics on IG etc. I just knew it didn’t really look right it was black and gappy and just didn’t look right. Is there anything else you’d suggest? I have a fake cycle day 1 for estrogen to start at the start of May then hopefully lining builds enough for transfer then cyclogest and lubion after.

so did your IVF not work with Just a down Reg? It worked with down Reg and the immunes?

The progesteone stops the spotting for me and I did try it in natural cycles TTC naturally for 6 months but it didn’t work. I thought it might of done but that’s before I knew I had adeno :(

im so sorry for the long reply I really appreciate this a lot xxx

It is very lonely and you must feel so frustrated wondering what caused this change. Not TMI at all - my consultant used to ask me to send photos of things like that to figure out what was going on. Bit strange I know but it helped. I also had the strange brown stringy discharge before and after periods. During IVF I started to have it towards the end of the 2ww. Initially we were NHS and their response was to just switch me from cyclogest to Lubion (injectable progesterone). When I went private when this happened he did additional scans before defrosted our embryo for a FET and discovered the lining was breaking down etc. had a hysteroscopy and a polyp was removed and that solved the issue with the strange mid cycle discharge.

With them saying ni about immunes, as I've had treatment in 3 clinics over the 6 years I have found they all differ with their opinion on certain things. Clinics get a bad rap for offering 'ad on treatments' Willy nilly especially if there isn't a strong evidence base. Some may instead want a big raft of tests doing to justify it. I was lucky in that my consultants view as we were approaching running out of options to try... his thoughts were it would cost a lot to run all the tests so let's assume there's an immune problem and have a go. My first clinic wouldn't entertain anything that was experimental.

Regarding how my cycles differed. My first 3 cycles were NHS (got 3 as one was so messed up they wrote it off long story). They were all short protocol. When we loved to private we went long protocol and things improved massively. Although we got good blastocysts we never got any positives until we started using humira. We had used steroids. Even tried intralipids. But it was only the two times we tried humira as well as steroids that we got positive pregnancy tests.

The only other variable that could have played a part is inbetween the chemical pregnancy and successful one I had a round of IVF that also failed to reproduce anything. Fluid around ovaries etc. after it I paid private for a laparoscopy and had a Fallopian tube removed. It was suspected all the inflammation from that could have been interfering with implantation. The ivf round and FET I had after that operation was the one that worked.

It's not a problem at all the long reply. If I've missed anything in my reply just let me know in another reply and I'll get back to you as soon as I can. xx

Forgot to say that I get what you mean about the time pressure eith the multi cycles and offsetting that against the increased amount of time it takes when doing a longer down reg. That along with my age was part the reason why we used PGTA testing towards the end as when we moved to long protocol we would get 5 or 6 blasts which as you said is a big time investment as well as financial cost. So we did the genetic testing to reduce this and the emotional turmoil. First round we genetically tested 2/6 were normal. And the 2nd and last round we did 4/6 were normal. Xx

Have you tried lupron? Thus will shrink your lining and essentially stop your cycles for a few months. I was able to achieve beautiful lining after many years of failing to conceive on my own. I was diagnosed with severe adenomyosis after having a full term boy and heavy periods.
I started IVF. My first FET was successful. I miscarried at 18 weeks due to other infection. I conceived naturally 7 months later without trying. I just gave birth 2 weeks ago to a healthy baby girl.
I am 100% sure the treatment of my lining by stopping my cycles for 4 months helped.

@flowergirl2020 Thats good that the hystereoscopy and polyp removal stopped the strange brown discharge! My dr was adamant after my hysterscopy and a mild d and c it would rejuvenate my lining and It would stop my brown pre and post menstrual spotting and I’d get pregnant again naturally. Like I had done twice! I felt hopeful and he even prescribed the cyclogest for taking after ovulation. That stoped the brown spotting but didn’t get pregnant. That’s interesting that the lupron on its own didn’t work? Only the lupron and the immunes is that right? If this FET fails for me I need to push for the immunes. It is a popular clinic I’m with so maybe that’s why they don’t want to do it like you say. I know some clinics take a “just incase approach” which I was hoping for especially as I have adenomyosis seen on my ultrasound scan and it’s common with endo and I obviously have a hormonal imbalance between estrogen and progesteone hence the brown spotting before and after the period.

I can get the lap done anytime. I’ve waited 15 months on the NHS and it’s finally my turn and the Dr has been very understanding that he will let me come if this FET doesn’t work. I just hope he sticks to his word and I don’t end up loosing my place after waiting so long :( I don’t want to keep using more embryos so I think we will investigate that.

It’s strange how my MC has caused the adeno but I think it’s common after pregnancies etc and they said because it was an infection and Inflamation it likely broke down the barrier between the lining etc. I was also thinking about testing the embryos to save time really and more heartache. I will see how this next FET goes.

is there anything else I need to be pushing for and asking for? They always seem to think there is a one size fits all policy! Xx

@flowergirl2020 I’m also beating myself up because the brown spotting started the month of my covid vaccine I put it down to that. And thought it would “settle” but here we are 2 years later and only just starting IVF :( xx

@Kesh22 congrats on your baby girl. Im so sorry about your late loss too. It’s so painful. I really thought I’d have my rainbow by now :( it sounds similar to me… I developed the adenomyosis after the miscarriage. Must of been the infection and Inflamation. I have no symptoms apart from brown spotting before and after my period which is complete new - well since July 2021 and as above we’ve tried all sorts to stop it but appears to be hormonal either from adeno or endo and my lining breaking down too soon as estrogen and prog off balanced? Maybe?

Im currently on 2 months of lupron now. I take my second injection next Friday then I’ll be starting FET in May but I’m worried the estrogen will flare up the adeno again and some drs do letrozole on days 3-7 but mine won’t and won’t give me immunes either.

For my lining before egg collection it was 9mm and trilaminar and “looked good quality” but on transfer day it looked grainy and puffy. I know the progesteone changes it but it looked completely different to other peoples transfer Pics. I know that sounds odd.

I also have an area very close to the lining which the think is a fibroid but I think it’s a clump of adeno. It was 4mm in jan 22 and 1cm by oct 22. I just wish I started IVF sooner :( because I got pregnant naturally twice very easily I almost felt in denial whereas I wish I’d got help sooner. I just thought the brown spotting might have been stress etc from the loss. I asked for progesteone in jan 22 after my first consult and he said no. If I’d tried it then I’d be well into IVF by now and not just starting.
Xx

Morning xx yes the only two times things worked in some way was when in addition to down reg with prostap I also had steroids and immunes suppressants (humira).
I recall my Dr saying I could get a test down with Prof Quek at Coventry to test my NK killer cells but his advice was to assume there's immune issues and treat accordingly rather than spend more money on getting tests done as he said you can vary month to month in what your test results will be xx

Oh gosh! I know what you mean you start to look for any variable that could have caused things. My age bracket only got called up for the vaccine just as I was in the middle preparing for my FET so I couldn't have it at that point. Got myself a bit worked up about when to have it as was conflicting advice at the time. I had it just as I entered my last trimester of pregnancy. No changes or anything in terms of periods and discharge so far. By that I don't mean that they are 'normal', just that they are as rubbish as they were before hand. I'll have a think regarding clinics if there's anything else I can think off to ask. I've tried it all - Accupuncture, special diets and supplements for egg quality etc. the only change really for me personally was use of the immunes xx

Hi I suffer with adenomyosis I've got one son 23yrs old I've had this problem 23yrs I could not get pregnant I was trying for 20yrs but I gave up on trying but now I think I might be pregnant not sure I'm ringing doctors tomorrow but I'm so scared it's negative I've been let down so much but I have not had my period for 10 weeks now I've had spotting when I was meant to come on my period I've felt sick and bloated and cramps I'm 46 next in July but I don't know what to do x

@flowergirl2020 I know it’s been a while since I wrote but I had a 3rd transfer in sept which was a chemical then another transfer in November which “worked” however have just had a MMC again at 13 weeks! Baby stopped growing at 9+3 which was the same day as our last scan! I’m just devastated. I thought we had finally cracked it and finished the first trimester. I had a bump! Felt pregnant! Everything. I was on steroids and the blood thinner and extra progesteone. I’m thinking is something missing immune wise? Maybe needed hydroxycloriquine also? But I don’t have the energy emotionally and mentally to travel back and fourth to London to see dr gorgy and have thousands of pounds more of tests to potentially not get any further?! I also got thrush - midwife said to treat with canestan cream and it cleared up but came back the odd time so I just used to re apply the cream so now I’m stressing I’ve lost because of that and maybe I should of worn more loose clothing etc :( but everything I’ve read says thrush doesn’t harm the baby and it’s common in pregnancy but it’s natural to look for something to blame. 3 years and 20k and we are back here. I just can’t do it again :(