Adenomyosis and the junctional zone

[Puddle-Duck]

Hello I’m new here and like many of you I’m having a real tough time. I’ve been trying to conceive for a year and was recently diagnosed with adenomyosis. I had a bio chem pregnancy in May and since then I have been on a rollercoaster. Adeno seems to be like a wall between me and the answers I need. No medical professional I have met so far wants to talk to me about it and I have literally been told to stop asking questions about it by 2 gynocologists.

I have been doing my own research as I have a strong feeling I will need to advocate for myself going forward but I am really praying that the fertility clinic will be different from the experiences I have had with gyno so far. Has anyone experienced this issue? For those of you with adeno, how is the support around it for you? I am so worried.

Also, I’ve been looking into the endo-myometrial junctional zone. Mine is 11mm thick which appears to be too thick, has anyone had treatment for their at the fertility clinic?

many thanks to anyone who can help, I know it’s super specific.

[Connie290]

Hello 😊 sorry for everything you're going through.

How did you get diagnosed? Did you have an MRI? I've been trying to get diagnosed for months, I believe I've got adenomyosis because of the severe pain I go through every month and they've only found tiny specks of endo when I had surgery for that. I also believe this is the reason none of my embryos have stuck, but advocating for yourself is so hard isn't it! I feel like I get dismissed a lot by my clinic with things like that.

[Puddle-Duck in reply to Connie290]

Hi Connie,

Thanks for replying! For my diagnosis, it orginally started by the GP telling me I would need to wait 13 months for an ultrasound to investigate my period pain and heavy bleeding. I was not waiting for that so I looked up where I could get a pelvic ultrasound and found a local baby scanning clinic that offered transabdominal scans of your anatomy. This scan is results the same day and it show I had endometrial hyperplasia which I now know was due both to my adeno and an early pregnancy that miscarried. My GP then referred me to the private hospital at my request (nhs timescales again were an issue) for this to be reviewed with another ultrasound. I paid for private scans for ultrasound and MRI both completed and reports written by radiographers from my local private hospital. It was through my 2nd ultrasound that I was diagnosed and the radiographer told me there and then I had adenomyosis. This was then backed up by my MRI that gynaecology ordered for me after the ultrasound but it comes with a report from the radiographer.

If the ultrasound is good quality and adeno has progressed like mine is moderate, then I think they can see on ultrasound but MRI is absolutely essential for the diagnosis.

I managed to get this done from May to now. Yes, the journey cost me some money but it was not as expensive as I was expecting and it all started from a £95 ultrasound.

Hope this helps and makes sense,

Puddle-Duck

[Dogbiscuits28 in reply to Puddle-Duck]

Thanks for the tip re private ultrasound. I already had my adeno diagnosis, but on my last egg collection (natural cycle) I had a massive hemorrhage (part of why I took a break). Since my clinic is abroad the GP won't do any follow up, but I am worried how it left everything, even though at the time my IVF doc did scans to check all was okay and followed through with the fresh implantation.

I have just found a private pelvic scan place near me that is not astronomical (had looked before for private gyne appt and was quoted £380 for scan and consultation!). For peace of mind I am going to book a scan before I get back on the IVF horse, so thank you!!!!

[Puddle-Duck in reply to Dogbiscuits28]

Oh so sorry to hear about your set back! Just to make you aware the imaging at the private baby scanning clinics are not always as good as hospital equipment, but for me, it was enough to see something abnormal that needed further investigation. Absolute best of luck x

[Bluebell321]

Hi, I was informed I also probably have adenomyosis from a private 3D scan due to being unable to conceive for three years after a pregnancy loss. One private doctor mentioned downregulating with medication but all others said it wouldn’t impact fertility and implantation. I don’t think there is enough research into it. My zone was 10.3mm thick so very similar to yours. I was told the condition was an oestrogen issue like endometriosis so I treated it that way before ivf including cutting out dairy, using castor oil packs and having weekly acupuncture. I also took high doses of progesterone after transfer. I didn’t find any NHS doctors who would consider treating it.

[Dogbiscuits28]

Hey,

I have adenomyosis. I had to have an adeno fibroid that was growing into the womb removed after my first round of IVF instigated its growth. Other Dr's said it would need to be removed laparoscopally. Luckily I found a new Dr who offered an alternative and realistic approach. He was very clear avoiding cutting through the uterine wall if possible because it can cause problems later on in older age pregnancy. After a course of progesterone treatment it shrank until it the bit that was a problem was small enough to be removed through hysteroscopy, thankfully (although he did it using an epidural which I did not enjoy!!! He was trying to avoid putting too many drugs in my system but yuck!).

My doctar did warn me though he was only removing the parts of it he could reach that would affect the implantation area, as adenomyosis will always be there and is not something that can be cured. Although symptoms/potential growths tend to reduce after menopause. He said the lining of the womb and no obstructions was the most important thing, although reading between the lines over the last year I do think it can make implantation more difficult. The only course of action you are really able to do though is to work hard to make your lining and your body as happy as possible (difficult when you are stressed about it all!).

At the time I tried two fresh transfers and had good lining both times, but the egg quality was low and I was highly stressed, so since then I have taken a break to get my mind/body in a better place. I am going to give it one more go, but am also looking into donor eggs as I think that might be a bigger problem for me. (The second Dr also chose a different protocol of Menopur which seemed to work much much better than the first time round. I got 8 follicles and 6 eggs at age 42, which was pretty good as I had empty folicle syndrome [EFS] on the first round as well as the adeno).

Other Dr's I consulted with said adeno shouldn't impact implantation any more than all of the other things that can be difficult to navigate (i.e. age/egg quality etc.). I do know some clinics offer procedures to improve uterine lining, but I am a little sceptical and they can be expensive, and they still won't get rid of adeno. I still look up academic papers on it where I can find them, but there is little out there more than the Dr's are saying.

So, I guess I am trying to say try to not panic - try and be kind to yourself. State of mind really does effect your body, meditation, yoga, acupuncture etc. are all worth it as they help reduce cortisol. Although I know this advice is counterintuitive as of course you are going to worry - it is a stressful process!

Check you are happy with the protocol your clinic is using, and while it takes a bit to wrap your head around journal articles google scholar can be useful. I found out my EFS was due to a life-time of antidepressants which had raised my prolactin levels. After testing them they were around 10 times what they should have been, but it was an easy fix with a short prescription to regulate it again. Also made me realise my extended anti-depressant use had been an unintentional birth control for most of my life!

Anyway, long message but I hope you can pick up on the positive bits sprinkled in there!

Happy to DM if you want to chat further,

Em xx

[Lelo3479]

Hi Puddle-Duck, I also have Adenomyosis and Endometriosis, MRI and Laporoscopy diagnosis. I have both tubes blocked because of the conditions. Maybe you can ask for referral early for Fertility tests?