Adenomyosis and fertility?

[kungfoofighting]

Just told today at an unrelated US appointment that it looks like I might have mild adenomyosis. The sonographer seemed to think this is nothing to worry about in terms of TTC and has no implications for fertility, pregnancy. A very small bit of initial googling says otherwise! For a start, miscarriage rates are higher.

NB: I’m currently gearing up for a frozen embryo transfer following IVF retrieval. My initial googling seems to suggest adeno can potentially affect/impede implantation and increase the risk of premature birth.

Anyone with any experience of this? Trying to work out next steps and how much this is likely to affect things.

Id say discuss with your clinic

My mature and experienced ivf consultant thinks i have mild endo or ademoysis

So ivf = long protocol

And will be frozen embryo transfers

If we get any pgta tested normal Embryos

I do have history of early miscarriage naturally previously
But that could be due to many issues including how we now know my blood clots likeky too fast
And i wasn't on blood thinners b4

I also have pcos that raises miscarriage risk and puts me as high risk for ohss

@worldwidetravel2017 thanks for sharing! Did your consultant have any particular approach or protocol in mind with regards to your frozen transfer? Such as suppression / down-regulation with lupron (something I’ve come across a few times today!) or something else?

I have adenomyosis but diagnosed in my late 30s. I had my child in mid 20s so not sure how severe my adenomyosis was back then, although I have always had heavy periods. So you might be fine OP.

Thanks for sharing! May I ask what lead to diagnosis?

As I understand it (limited knowledge!) it’s progressive, and mild adeno less likely to affect carrying a pregnancy than moderate or severe.

It seems the traditional view is that most cases occur above 40, although there’s research showing it’s being picked up increasingly early now.

I have adenomyosis and conceived naturally in my mid 20s. I have a healthy baby. Adenomyosis reduces the chances of women falling pregnant.

Thanks for sharing! Do you know by what mechanism and at what stage it reduces the chances of pregnancy?

Long protocol

Down regulation

Due to my hormone numbers ( which are due to pcos)
And my high ohss risk

And how he expects i have endo or ademoysis

Frozen transfer means body gets a rest
Whilst any embryos are pgta tested

By down regulating - its taking control of my hormones
( I have high estrogen)

My heavy periods were / are diagnosed as menorrhagia

Fertility/ ivf consultant diagnosed that
..
He also supported me getting NHS iron iv

My case is slightly different in that I originally had endometriosis & then much later got diagnosed with adeno after my third laparoscopy (2 in a normal gynae ward, third at a specialist BSGE Centre). I wanted to get the endo removed before IVF but was told by my IVF consultant that it wasn't an issue & to go ahead with our first cycle. In hindsight I feel it was a wasted round as it failed with no embryos to freeze & subsequent BSGE Endo specialists said it may have been due to the fact my body was dealing with the inflammation caused by the endo. All the generic gynae consultants failed to see it as an issue or didn't notice. The BSGE specialists encouraged me to have surgery to ensure I was as healthy as could be before any more fertility treatment.
There are lots of women who have a small amount of adenomyosis who do go on to have children so your consultant is right in that respect so please don't lose hope! I have everything crossed that this round will be successful however if it's not or you have time to put this cycle on hold then please look up the BSGE centres as you can ask your GP to refer you to one of them (it doesn't have to be your nearest either. I chose Ms Ball at Royal London in Whitechapel). They will be able to give you the most accurate information. They usually have a long waiting list so as I was 37 by then we paid for a private consultation at around £250.
I have the utmost respect for the NHS & for doctors in general but I wasted too many years ignoring my instincts & pursuing IVF when I should have spoken with endo & adeno specialists first.
I hope this post doesn't come across as too negative however I found the IVF process to be so focused on healthy eating, acupuncture, etc but they were lacking any expertise of gynae conditions which feels quite negligent.

My consultant told me to eat lotsa vit c foods daily to reduce inflammation

And i keep an eye on my crp score

My gynaecologist spotted adenomyosis at a scan last year. I don't know how long I've had it but it's never given me any symptoms and I have three adult children.

What do you mean by mechanism? Adenomyosis isn't diagnosed by stage, unlike endometriosis and other conditions. My lining is very thick though and I'm in severe pain and experience severe blood loss every month so I'm on all sorts of medication to try and manage the condition. I have it quite badly.

I have severe adenomyosis. My 6 year old is the product of. FET IVF cycle. Before that we had 2 unsuccessful fresh cycles. Good luck!

Thanks, and congrats :)

Sorry, I meant what stage of conception – in what way might it reduce chances of pregnancy (e.g. fertilisation, implantation, etc.)

Implantation and staying pregnant in the early weeks. I think it's because of the thickness of the uterine lining. It sounds like you have something else too if you're going through ivf/fertility drugs. Best of luck!

Thanks! What is a crp score?

Yes, I’m in the same boat (apart from the children!) Thanks for sharing :)

Thank you for sharing!

We had our first round in the UK at an NHS hospital and I got the same impression – it was all a bit basic and they didn’t really seem to pay much attention to the finer details. (To be frank, I felt like my experience of IVF with the NHS also wasted a lot of time that could have been better spent with a clinic who was more on it – so totally empathise with that sentiment!)

This time we went abroad and had good results from the ER. So it’s just the FET(s) we have left to do now. I too feel that I want to thoroughly investigate any potential issues before doing any transfers – I don’t want to waste embryos and also want to avoid wasting time on unsuccessful transfers (so far as possible).

I know my Dr at the clinic is aware of adenomyosis as he’s done talks that touch upon it. I will relay the information and see what he says. I’ve seen a few online discussions mention lupron, however someone also cautioned that many people experience issues (including fertility issues) as a result of using this. It seems you’re certainly placing a lot of trust in your Dr to recommend the right approach.

Thank you for the BSGE recommendation – it looks like there is one very near me. How did you find your consultation? Did you find it useful?

Crp is inflammation in the body

Its a simple nhs blood test that you could ask gp for

Ah great thanks, good to know! :)

My periods got really heavy in my 30s and I went to the GP who then referred me for a transvaginal scan. That was when I was about 37.

Since then it has got progressively worse despite trying the coil and pill. I've got an appointment in a couple of weeks to discuss a hysterectomy, which is the only option now. I'm only 43 but it's time.

But, I did conceive early on and it took the best part of a decade for my symptoms to deteriorate to where they are now. So you likely have time, stay positive.

Sorry for the delayed reply. I don't always get notifications!
I'm glad you've had a more positive IVF experience going abroad. In terms of BSGE consultants I looked at Facebook endo pages & this forum https://healthunlocked.com/ for recommendations. I then called them to see what their waiting times were for an appointment & possible surgery. I went with our local BSGE Centre originally as the surgeon was highly recommended but it turned out that you weren't guaranteed to have him on the day of surgery so I subsequently went to a London based one where I knew I would have a particular person. It wasn't a quick process & it was hugely frustrating however that was 10 years ago so hopefully things have improved since then.
I went on Lupron before my first surgery & was apprehensive about it. I only needed to be on it for 3 months though. I think the maximum time is a year as it can affect your bone density, teeth, etc. I got awful menopausal symptoms like brain fog & hot flashes however it did lessen my horrific period pain. Unfortunately for us ladies there are always risks with gynae treatments & we can only do what we feel comfortable with based on the research we've done. I had heard awful things about the Mirena coil for example but I've had a great experience with it (obviously not recommending this whilst you're trying for a baby!).

I have adenomyosis and endometriosis- I had two babies one when I was 36 and one at 40. It did take a year to get pregnant with first. With second i had operation to clean out the endometriosis and got pregnant within 6 weeks.