Back when I had my initial scans ahead of IVF treatment one of the Dr's diagnosed me with adenomyosis. This surprised me as no one had ever spotted this before and I thought you couldn't diagnose it from a transvaginal ultra sound. When I said "Are you sure??" she said "You definitely have adenomyosis" and told me that whilst it's hard to spot that they had had specialist training in diagnosing it because they were recruiting for a clinical trial. The next time I had a scan with a different dr I asked her if I had adenomyosis and she told me "I can see what she's referring to but you can't diagnose adenomyosis without doing a hysterectomy." I feel like the statement "you definitely have adenomyosis" and the follow up letter stating "Diagnosis: adenomyosis" kind of sounds like a diagnosis! We proceeded with ICSI because of the male factor infertility element.
Anyway... having failed on my first transfer I am now in that zone of "what if anything can we do differently moving forward?" I'm guessing being an epic fertility researcher is my way of coping! Whilst I am aware that many things could have gone wrong I am wondering whether anyone on here has also been diagnosed with adenomyosis and whether they'd had successful or unsuccessful transfers? I am also wondering whether they had a different protocol because of their adenomyosis? And if so, what that was. I am wondering whether they have already addressed this and just not communicated it. Is adenomyosis something that we can do ANYTHING about even?
I've been weighing up going to a private gynaecologist to get an opinion on whether or not I have adenomyosis but I don't require a diagnosis if it doesn't change how we'd proceed.
GOSH I said adenomyosis a lot there 😂.
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I had an ultrasound scan (external) under the NHS and the gp called me to say I had a fibroid. So they referred me to a consultant who said there is no fibroid but I have adenomyosis... how can they look at the same results and draw different conclusions...
Anyway, I went to a private clinic to start ivf treatment and didn't mention either of these. I had a transvaginal ultrasound this time and was told all fine... so raised the issues the nhs had told me. My consultant said no, absolutely not, he had the scans on his screen and showed me nothing there.
I've since had a hycosy and multiple transvaginal scans monitoring follicle growth, not once has there been an issue (thank god)
Ultimately, I believe and hope the initial Dr's got it wrong. They said different things either way so I lost all confidence in them
Sorry I know this doesn't offer any tips or advice, just wanted to share my experience as they can get things wrong! (One of them has at least!)
I would request a second opinion as you are entitled to and explain the reasons, requesting further advice and treatment plan
I am going to bring it up again. It’s confusing to me that two people from the same clinic can say different things. Obviously I want to believe that I don’t have a problem. I wonder what that “fibroid” was. Can they just vanish?!
I was also told I had Adenomyosis during a transvaginal scan too and could be seen as a shadow in the same place on each scan. It was a shock also as had a hysteroscopy a year before where all looked ok.
So for my next FET cycle they downregulated me with Prostap (first time for 3 months ( it was quite horrible as you're basically in a menopausal state), unfortunately that cycle ended in a chemical), then the 2nd time on Prostap I only needed it for a month and that cycle worked (currently 9 weeks). I'm also on Clexane and Prednisolone (steroids) too. I believe Prostap can help shrink the Adenomyosis.
This was with a private clinic. Good thing about prostap is you have 1 injection which lasts a month as it's a slow releasing, so no need for daily injections.
Hi Hollymolly123,The first time i was on prostap for 3 months, then went straight into a medicated fet cycle starting with oestrogen once consultant was happy that everything was quiet. Had a chemical on that cycle. I think my period came on soon after I stopped the meds.
Thanks for the reply. I got the injection on Friday Oct 6th for one month but it's hard to plan for my next transfer as I have no idea when my period will start. I've been looking into this and some people get it back after months...!!!! I'm worried it will not come back for awhile. On top of this my lining is not growing. Did you have this issue as well? Perhaps the adeno is causing the lining not to grow, not many doctors talk about adeno as much as other stuff so it's confusing and frustrating.
After dozens of scans over 2 years at my clinic nobody ever mentioned adenomyosis to me. Then I had a miscarriage after my 6th transfer in May and the consultant at the EPU said he could see signs of adenomyosis. He said it can't be officially diagnosed without hysterectomy (they can't biopsy or anything like some places do with endo), but he could see it. I left thinking maybe we finally have an answer to our problems, but my clinic were not really interested! They just said lots of women have it and they don't adjust treatment because of it.
I think it must just be such a recent discovery that most clinicians don't know anything about it, but you'll come across the odd one that's taken an interest in it as an area of research. It's really frustrating! Sounds positive that your clinic are involved in clinical trials on it 👍.
After 3 IVF cycles, we're now going to change clinics and travel a bit further to one of the bigger ones - will be interesting to see whether they treat adenomyosis any differently...
Please feel welcome to update me on this. I’m interested to know if they do anything differently for you and if it works (I hope so!). I’m an nhs patient but they do part of the treatment at a very good clinic in London. I wonder whether they do things differently if you’re fully private.
I was diagnosed with adenomyosis too - I had very heavy painful periods so went for further investigation, even before TTC.
The first ultrasound said nothing was wrong, on second investigation a different doc was sure it was adenomyosis but the only way to 100% know for sur is with an operation as poster above said. Something to do with the formation of the shadows on the scan, and not all docs have the experience to see it.
When we got to IVF after 2 years TTC, the overall diagnosis was male infertility (so ICSI also) but I always suspected the adenomyosis was affecting things too
We began long protocol (as I am 39 too, so they believed this was be the best for me to start on to get best results due to age and adeno) and had 10 days of buserelin before starting any egg stimulation.
By some miracle we became pregnant naturally at this point, and the docs told me that the buserelin could have calmed down the adenomyosis and possibly helped with implantation. But we don't know for sure.
Either way, defo ask about long protocol if you didn't have this on your first round
Thanks for this. I have no symptoms of adenomyosis. I went on the Mirena for 10 years due to horrific periods and upon coming off it I thought they would return. They haven’t. They are now super chilled with literally no pain at all. I am going to question them about this though x
Hi there, my suspected adenomyosis has been picked up for 4 different people during different scans over the years. I haven't had any luck along the way but then I have had a few other issues along the way. I have suffered for many years with extremely painful periods and sometimes heavy periods. My consultants have never done anything different due to it. I have heard downregulation helps though.
I am definitely going to flag the adenomyosis factor. It’s a bit weird for me because I had horrendously heavy periods in my teens and so I went onto the pill very young and spent many years trying to find something that would make my cycles more bearable. Then I found the Mirena which really helped. I had that for 10 years. When I came off it my periods were light. Three years on and my periods are light-normal. Painfree, just really okay. The dr said “the Mirena can suppress adenomyosis” so maybe I had quite bad adenomyosis at one point and now it’s super mild. I have zero symptoms. 🤷🏻♀️
Hi,My adenomyosis wasn't diagnosed for ages and I'd had a lot of scans and rounds of IVF. I went to a gynaecologist on my work private medical insurance for fibroids and she sent me to what she said was the best ultrasound specialist in the country. She said she would pick up things others wouldn't and sure enough she picked up mild adenomyosis.
On my successful round, I was put on a mock cycle, then prostrap downreg for a month to reduce the adenomyosis. It's hard to say whether this was what made it work because I also found out I had thrombophilia and had meds for that and I changed to donor eggs. Regardless, I would push for downreg if I was you.
Hi there, one of the symptoms of adenomyosis is enlarged uterus, however this could also be caused by fibroids. Hence, diagnosing adenomyosis in those circumstances would be a bit of a challenge and exactly what happened to me. It took me 2 years and myomectomy to receive the diagnosis of adenomyosis, as numerous ultrasounds and pelvic MRI prior to surgery were putting down the enlarged uterus to 5 fibroids that I had. Then, the post-op ultrasound showed that my uterus, although it shrunk in size, was still enlarged and that's how I was diagnosed with diffuse adenomyosis. This came to me as a shock, as I had no symptoms whatsoever, such as pelvic pain or heavy periods.
In terms of protocols, they were not affected by adenomyosis: in my case, as I have a high ovarian reserve for my age (I am 44 with AFC of 37), my protocols were aimed at ensuring I don't get over-stimulated.
When I asked my fertility doctor, who is a Professor, if adenomyosis affects implantation, his reply was no, as adenomyosis is in the myometrium and the embryo will implant in the endometrium. However, since surgery and diagnosis I had 2 failed embryo transfers: embryos were untested so it could have been embryo quality and/or adenomyosis...As I only have 1 tested embryo on ice (plus 1 untested), I decided not to risk it any further with adenomyosis and address it prior to doing the transfer of the euploid embryo. I am currently downregulating with Zoladex so planning on doing embryo transfer in just over 2 months time...
I was also told by my clinic I had adenomyosis (by email!) when the consultant reviewed my scans.
At the time I had no idea what it was having never heard of it. I opted to have an MRI scan (given it was covered by my company health care policy) to try and tell how severe it was as my understanding is that if it’s mild then it shouldn’t impact implantation. I was told no action needed to be taken and to continue my treatment as planned.
I had a failed first round of treatment, then conceived naturally the month after but that sadly ended in a MC. About to start injections tomorrow for round 2
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