TTC with Adenomyosis

[KayC19]

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?

@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!)

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

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!

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 ☺

@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.

@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.

@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.

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 💕

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

@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 😔

@Gillseybear oh my gosh, missed after four years? How bad do you suffer with it? I can only hope the sickness and late AF are a positive sign! I have everything crossed for you 🤞🤞🤞

@KayC19
So they found a cyst while doing the scan that suggests that I have adenomyosis. I have been fighting for four years to get it looked at. The gynaecology back home where helpful but since I moved to come back down to uni they have been useless and have just left me in an awful lot of pain.
The pregnancy thing is completely out of the blue. I had to stop taking the pill as it made me unwell. So me and my partner decided to go careful and keep on eye on things. Due to never having consistent AFs because of my issues I never know what it going on.
I hope you get answers you need soon and here to chat if you need anybody

@Gillseybear that’s really bad of them, but glad you were able to get it spotted in the end, even if by accident!

Thank you, that’s really kind. I’ve just called the clinic as I’m impatient and the doctor has gone home so can’t chase until 10am tomorrow 🙄 so hopefully tomorrow I get them and then I’ll call my normal doctor to share the notes with and take from there

@KayC19 thank you very much and I hope that you can figure everything out aswell

@KayC19 Oh, It can be so annoying when they take their time and you just want answers! I'm sorry they're just adding on your waiting time...

I finally got my results! So confirmed it was “mild adenomyosis” they found, but one thing they didn’t tell me in the call that’s on the written report is that I also have some tiny cysts in my uterus. As they haven’t put any emphasis on it or advised treatment, I hope that means they’re nothing to worry about. But if AF does arrive this weekend (I’m 10dpo today and usually have a 12 day luteal phase) then I’m calling doctors next week to share the report with them.

They’ve advised to keep trying a couple more month and if no luck, have an endocrine assessment (ever heard of it before) and a HyCoSy test to check my tubes.

@KayC19 I am so happy that you got that diagnosis today OP. I honestly hope that you have some luck and that you get your BFP soon.

Thank you @Gillseybear 🙌 will keep you posted if AF does arrive this weekend or not!

@KayC19 same here although I am hoping that it doesn't arrive for either of us

Hi! I had an ultrasound scan earlier this year for heavy periods (worse than normal after my Covid vaccine) and the sonographer mentioned the posterior uttering wall was thicker than she expected suggesting adenonyosis. I spoke to a gynaecologist about this and she did an internal exam and a speculum - she said the womb ‘felt fuller’ and it was mildly tender. I’ve always had heavy, painful periods and thought this was the norm! She said mainstay of treatment was contraceptives to regulate hormones but as I am trying to conceive, I should just get on with it and refer myself for fertility tests early should I be unsuccessful (been trying since July for first baby).

This won’t be of much help but I just wanted to say unless you do a hysteroscopy and have a tissue sample, it’s difficult to diagnose. It’s a condition where cells from the womb grow into the muscles and has a higher risk of miscarriage but lots of women will have it and have a normal pregnancy too. So try not to let the scan results worry you, keep trying and I hope you get your BFP soon! 🤞🏾

Thanks @hopeful777 and so sorry you suffer with this! I feel very fortunate that I have very minimal symptoms.

My temp has been on the downtrend for the last 4 days and today hit my coverline, so I think AF is on her way 😔 I’ve been trying since March this year, so after this cycle I’m definitely calling my doctors for further tests and want my tubes checking, these cysts checking, and I also want a blood test to show vitamin levels as I worry I’m not taking enough of something too.

I hope you get your bfp soon 🤞

Sadly, AF arrived today 😔 been an emotional wreck all morning - each day she arrived I wouldn’t normally get emotional, but the last 2 cycles I have as it’s just hitting me harder each month now. Trying to remain positive and I’m still thankful I don’t have painful symptoms or anything like that, just feels like it’ll never happen!

Fingers crossed we hear a bfp from someone else!! 🤞🤞🤞

@KayC19 I’m sorry. It’s a horrible feeling when you want something so much and get thwarted every month. At least you can look forward to a nice mulled wine over Christmas and enjoy trying again for 2022. May it bring the good news we all are hoping for!

I am so sorry @KayC19 I feel for you so much. Did a test after I brought them today and was negative. Going to try with my FMU in the morning

@Gillseybear @hopeful777 thank you both. Definitely going to have a chilled one with 2 weeks off this Christmas and enjoyed the wine and Baileys! Fingers cross you both get your bfp!! 🤞

@KayC19 thank you so much and enjoy Christmas.