Adenomyosis ?! Help

[Ladycoco20]

Hi all …. So nhs sonography lady said I have this .

Iv had some discomfort since my failed DEIVF in May ( second ) failed transfer ( lost 4 embryos now )

Gp referred me for scan & Adenomyosis was her opinion. Anyone been diagnosed with this during ivf ? My consaultant in Greece has already mentioned that I have ERA done before next transfer, then this popped up yesterday 🥹

Feeling overwhelmed & upset it’s not been mentioned in any of my scans over the past 6 months ?!

[Lamagarden]

Hello, I was diagnosed with it just before we began IVF, as part of the investigative scans/tests leading up to IVF. The drs seem very unbothered by it. They said they thought it was a better outcome that it was adenomyosis and not fibroids and therefore didn’t need to be removed, after I had investigative surgery. When I initially found out I was devastated. I assumed it was affecting us conceiving but was told there is no conclusive evidence of this and many women that have children have adenomyosis. For me, it has a horrid impact on my periods, v heavy and v painful. Wishing you all the best xx

[Ladycoco20 in reply to Lamagarden]

Hi , thanks for sharing 🥹 yes I’m sure my clinic will calm me down ! I just feel disappointed & angry that it’s never been mentioned over the past 6 months of scans & blood to prep for transfer 🤷🏽‍♀️Yes my periods are horrible and so painful too xx

[DianeArnold Partner Nurse Fertility Network UK]

Hi Ladycoco. The only advice I can give you is to make sure whoever is treating you has speciallist knowledge of adenomyosis. Good luck with whatever you proceed with. Diane

[Sweethear]

Hi, I was diagnosed during ivf after having 3 miscarriages all conceived naturally and 4 eggs retrieved and 4 failed transfer that I have adenomyosis I was very angry and disappointed that my doctor never saw this in all the scan and during my miscarriages it was diagnosed via MRI scan at first on the ultrasound scan they thought it was fibroid and was sent to do MRI scan which shows it was a severe adenomyosis i was so angry that I changed my clinic I went to a new clinic on my first appointment with this new clinic the doctor did an ultrasound and said to me immediately that I have adenomyosis without knowing that I have been diagnosed with that he explained to me that adenomyosis can cause miscarriages and make it difficult to get pregnant it makes it difficult for an Embrayo to implant and that there are no cure for it but can be treated and monitored that my best chances of pregnancy is via ivf he then started the treatment by putting me on artificial menopause for 3 months with decapetyl injections 3.75mg once a month for 3 months before starting my egg retrieval I got 4 eggs 3 day 3 Embrayo 1 fresh transfer bfn 1 frozen Embrayo transfer immediately after the bfn I got pregnant it was a difficult pregnancy with early bleeding 🩸 at 6weeks plus and I was put on bed rest I was monitored weekly long story short I got my happy ending with a baby girl delivered at 37 weeks 3 days after being hospitalised for 10 days due to pre-eclampsia via c section she is healthy and perfect. I have been trying since after her birth for another baby but I have not had any luck she will be 4 years old by November and I am 43 years old. Please ask good questions make sure your doctor knows how to treat adenomyosis before going on with treatment because adenomyosis can really cause infelicities and make your Embrayo not to inplant I don’t want to scare you I just wanted you to know and prepare yourself good luck I hope you get your happy ending.

[Ladycoco20]

Morning , wow what a story … thank you for sharing. I feel exactly the same right now . I moved to DEIVF with the hope of a healthy pregnancy & baby . At 45 it was my only option .

I had 5 AA embabies & have lost 4 😓 no one has ever mentioned Adenomyosis ! So the nhs scan I had this week shocked me , she said it straight away ! She recommended MRI

My Greek clinic seem not to worried as Iv down regulated for both fets . They are pushing me to do ERA not mentioned MRI as yet . Iv got a bad feeling about it all tbh as since my last failed transfer I’m in discomfort & no one is helping 🥹

Wonderful outcome for you & you clearly made the right decisions on the way . Good luck with number 2 🥰

I feel my issue is implantation & I want some answers

Xx

[Sweethear]

I understand you perfectly my old clinic never seems bordered about it too as they were ashamed that they missed the diagnosis all this time please don’t do any transfer without treatment and MRI scan to know the severity of the adenomyosis I hope it is not that severe for and that you get the right treatment before transfer

[Cinderella5]

Hi lovely, so I know a girl that found out she had adenomyosis well into her treatment. She had quite a traumatic history of a chemical, twin pregnancy which was ectopic and she had to have surgery. She was just starting a new cycle with a clinic in Spain and this was her news. Nobody had discovered it previously. However, they were not alarmed and they used down regulation (artificial) menopause to damp down her uterus of hormones and gave the minimal amount of estrogen they could to build her lining. She now has boy/girl twins so it can work out.xxx

[Hidden]

Gosh how maddening for you, I feel you as I had a similar but different situation where something was found after a load of failed rounds and miscarriages that could have caused all of the trauma AND been treated and I am now 45 on DE too. At one stage my clinic thought I had adenomyosis and at the time I was told they weren't too worried about it as there was no real evidence it had a negative impact and they wouldn't 'treat' it as such but would just make sure I down regged prior to FET - sounds similar to Cinderellas friend. They did also say that it was quite a difficult thing to diagnose as it can sometimes just be an irregular womb lining. In my case a second opinion was suggested with a specialist gynae Sonographer who decided it was just scars from an operation and not adenomyosis at all. Either way I really hope this next round is your lucky one xx

[KML3]

Hi there,I know this post was a few months ago but I can’t tell you how glad I am to have come across it.

I have had three rounds of IVF with my own eggs, had a chemical pregnancy the second time and nothing to ever freeze. At Easter I did reciprocal IVF and transferred one of my partners eggs from another round of IVF. Again this resulted in a chemical pregnancy. I had been complaining of backache since the first chemical which was in the previous summer, at Christmas I said I didn’t want to do continue with my last round of IVF if it would limit my chances of getting pregnant as I was still having severe backache, but the clinic said they couldn’t see anything and I went ahead and transferred two embryos which didn’t work. Again I brought up the backache to the owner of the clinic and it was played down so I booked to see my GP. By chance the doctor was a back specialist and referred me for scans (internal scans that were exactly the same as what I had at the clinic). I attended the scan a week after my second chemical pregnancy and was having a lot of back pain so it was prime time. Straight away the sonographer found it and spent a lot of time looking at it, she also found endometriosis and cysts. I was devastated and I still am coming to terms with it.

We had two frozen embryos but my partner now wants to transfer them to her, which is only fair (she has underlying health conditions which is why I was meant to carry) but I just feel like I’ve been robbed of my chances to become a mum. The fact that I had mentioned the pain for eight months and had a hell of a lot of scans and nothing was found has devastated me! We’ve been fully paying customers for all of it and it’s made me see it as a business wanting to take your money!

However reading these posts has made me believe that there still might be a possible chance of being able to carry. I have my gyno appointment in six weeks. I have had to wait for five months, which has been tough but was actually needed, coming off the IVF train that had consumed our lives for so long and just take time to rebuild ourselves. I resonate with everything your feeling and really hope that things work out for you x