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Original poster

TTC with Adenomyosis

34 replies

KayC19 · 29/11/2021 12:31

Hi, I'm very new to all of these forums and Mumsnet in general!

We've been TTC for 8 months and recently paid for private fertility tests for peace of mind. Everything looks good, no real cause for concern, but the one thing they diagnosed me with is Adenomyosis.

I've never heard of this before, as I don't suffer any symptoms. I don't have painful periods, just the usual cramps like any of us get, no bleeding/spotting outside of my period, I have regular periods, they're not extremely heavy etc. The only symptom I do notice from time to time is that I get mild cramping occasionally (or pinching which may be a better description) throughout my cycle - not just during the two-week-wait or during my period.

All the doctor said was: it's associated with painful periods and if you don't experience that, then I'm sure you're fine. I've not found that very reassuring due to lack of information given to me and Google searches pretty much make out your best shot is IVF when you have adenomyosis, and even then it can be difficult - but there's no clarity of whether there are different levels/extremes of this condition - it's so overwhelming!

I'd love to hear from others who are either TTC or have successfully conceived and also have adenomyosis of any severity. How long did it take you to conceive? And were there any specific supplements you were advised to take, diets to follow etc. to help with implantation? Smile

OP posts:
Original poster
KayC19 · 07/12/2021 15:21

@IsabelHerna not received the reports yet 😔 I’ve chased a couple times so going to call them tomorrow so I can share with my doctor and just get a second opinion.

@Duchess379 I’m so sorry to hear this! I do feel very fortunate I don’t suffer with any symptoms, as like your own experience, I’ve heard so many bad experiences and I really do feel for the women who experience this 😔

OP posts:
Gillseybear · 07/12/2021 12:06

Hey OP

I am not sure if this is any help but I have recently has an ultrasound where they discovered they I have the symptoms that suggest I adenomyosis. They have suspected that I have endometriosis for four years now and so I finally got the evidence while I was in hospita for something unrelated last month. My Af was due yesterday but no sign of it and been feeling incredibly nauseous over the past couple of days and am constantly tired.
I would love an update is you have an update

Duchess379 · 07/12/2021 11:43

Sorry, this isn't a positive story. I suffered horrendous periods. They were non stop. Sometimes they were so bad, they would soil my clothes. And the pain was awful. I literally couldn't breathe through the pain. Gynaecologist fitted me with the coil, an implant in my arm, different variants of the pill, nothing worked & I was still bleeding heavily, but no-one knew why.
I finally had enough & demanded a hysterectomy because it was ruining my life. I couldn't have sex so there was no chance of conceiving. After a lot of wrangling & signing paperwork, I had the hysterectomy a few days before Christmas. Best present I ever had. They contacted me a few weeks later & told me I had adenomyosis that was so severe I would never of conceived anyhow. It would appear you are the lucky one with very minor complications. I hope it all works out for you 💕

IsabelHerna · 07/12/2021 11:30

@KayC19 How is it going dear? I found this thread and wanted to check-in.

Did they give you a written report?

I have PCOS and I had blood tests to check all the vitamins' levels. Now, I am taking D3 + K2, folic acid, magnesium, zing, general prenatal vitamins (they have everything), and my doctor said that the metmorfin is going to help with the cycles.

dutchessmom · 30/11/2021 22:55

@KayC19 Oh I am glad and thank you. 🤗 Reading threads and posting comments is what keeps me sane the past few days.

I agree with you about the tests, have them checked out now, why wait? Sometimes I get mad at doctors. If it weren't for a poster here, telling me the ugly truth as it is, I wouldn't have proceeded with more tests, I would be still waiting and trying alone.

I do understand that it can be expensive and painful to have unnecessary tests, but sometimes it's painful not to have them. Check the tubes, the womb, the eggs, everything that needs to be checked, check it, at least you'll have peace of mind.

Original poster
KayC19 · 29/11/2021 19:17

@dutchessmom I appreciate any comments, so don’t worry about advice or no advice! I’m waiting for the written report from the private doctors so I have it all in writing and then think I will just call my normal doctors just to help understand the diagnosis more and maybe have another ultrasound to see what they see. I was advised after another 4 months of TTC to get my tubes looked at in case there’s blockages, but part of me thinks I should ask for that now just to get it out the way and check there’s definitely no blockages.

OP posts:
dutchessmom · 29/11/2021 19:03

Hi there dear, I am sorry I don't have any advice to give you for adenomyosis, but what I can tell you is to ask for another medical opinion. What you can also do, before getting a 2nd opinion, maybe call their nurse with a set of questions? Now that you've had time for the information to sink in I'm sure you've got more questions than when you were at your doctor's office.

I wish you all the best ☺

Original poster
KayC19 · 29/11/2021 13:04

@Shortmamashortcycles thanks for sharing this, that's really reassuring! But also really sorry to hear about your recent mc Sad

Between June and September this year I had painful periods on the day of it starting and sometimes lasting until the day after it starting, but that was it and then it's been normal since. I actually put that down to the Covid vaccines during those months as I noticed my cycles change during that window before settling again over the last 2 recent cycles.

Yeah, I've definitely tried to not read into it too much, but a small part of me wishes they never mentioned anything if they felt it shouldn't be a concern. Or at least give me more information on it when telling me I have something I said I never heard of before haha.

We said we'd keep trying for another 4 months to see what happens (fingers crossed) and if no luck, we'd take it further with our own doctors rather than go private again and hopefully they can advise the best next steps. As we know we're still within the 12 month window they advise before getting doctors input. I know deep down I'm probably worrying about nothing and need to treat this diagnosis as a very minor thing, but always reassuring to hear other's stories, so thank you! Smile

OP posts:
Shortmamashortcycles · 29/11/2021 12:44

@KayC19, not sure I'll be huge help, but during my recent mc, the sonographer said she thought I might have adenomyosis.

Now, that sounds super depressing, but I have a healthy 2 year old and got pregnant quickly with the bean that miscarried - and that was a missed miscarriage, i.e. my body was doing all the right things to support the embryo, but the little bean wasn't to be.

I used to have extremely painful periods and heavy ones when I was younger and had a laparoscopy and hysteroscopy to investigate for endometriosis and they didn't find anything. Now my periods are less heavy and only a bit painful.

All in all... I'd take it as an input but don't assume you'll only conceive via IVF. You could push for a laparoscopy to look for more certainty, but in my case I've conceived twice naturally and hope to conceive again!

(By the by, it took 10 cycles to conceive my daughter, so I remember how frustrating this all is. Push your doctor for more info if you're confused or worried about the diagnosis!)

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