Adenomyosis

[Naunet]

Posting for traffic. I’ve just been diagnosed with adenomyosis, a 5cm ovarian cyst and a fibroid. I knew I had the fibroid, but I’d put all my symptoms down to that and had hoped once removed I’d be back to normal. Now I know that’s the the case and am feeling a little defeated. I have PTSD from childhood sexual abuse so these appointments have been really hard for me, and I’d been telling myself once the fibroid was removed, it would all be over, so now I’m just overwhelmed.

I just wanted to ask for your experiences with adenomyosis so I can know what I’m in store for. Was it life changing or just inconvenient? Did it make sex painful? Did you find you had a tendency to get cysts?

Thanks.

I have endo and ando. There was a time when they were causing me a lot of pain but it is pretty under control now.

I appreciate it is scary. I hope that you have a good gynaecologist and you feel better soon. All the uncertainty before diagnosis can be the worst part.

Thanks, I did read it gets better with menopause so at least that gives me one ‘symptom’ to look forward to! Did you do anything to get it under control, or did it happen by itself?

I had surgery on my endo and I am on a combined contraceptive pill.

I used to pop a lot of Naproxen and co-codamol but don’t need them so much these days.

Adenomyosis is endometriosis in the uterus wall itself.
I have this. IVF to get pregnant. A lifetime of continuous oral contraceptives or the Mirena. Only bothers me if I have ovulatory periods, which I don’t. TTC wasn’t fun however.

Just been diagnosed too. Symptoms are heavy bleeding, recent spotting and bloating. GP suggested Qlaira COP but I'm concerned that my oestrogen levels should be checked first.

Just finished up breastfeeding my youngest so I thought the heavy periods were due to breastfeeding hormones. Lucky my GP is brilliant and referred me for TVUS. The appointment came through very quickly, had it on Monday and GP called with results on Thursday.

I'll see gynea soon but wondering what's ahead!

Diagnosed with endo and ando, my fertility doctor assured me it shouldn't affect TTC too much but turns out that was bullshit - I've had a hysteroscopy and laproscopy last month and while sex is less painful than before it still is at times painful and I still haven't conceived after 3 years so I'm likely looking at IVF

I too have been diagnosed with this at 43 I have no advice I am afraid as I am having a complete hysterectomy to deal with it once and for all.

I had a hysterectomy in my early 30s due to Adenomyosis (I was losing too much blood each month, with 16 day very heavy periods), and honestly it was the best thing for me.

I’ve since realised I had other issues due to the Ando, such as weekly Migraines, a lot of hair loss, tiredness that have now gone since having the hysterectomy.

I have Adenomyosis only diagnosed at 44 after years of thinking this pain was 'normal'. I had a hysteroscopy, d&c, ablation & biopsies a few months ago. Definitely helped with the bleeding but I will be having a hysterectomy after Christmas due to a combination of other issues. My children are older teens though - they won't do an ablation if you are younger or your family isn't complete as getting pregnant after ablation is quite dangerous.

I have severe adenomyosis. Got the diagnosis in my 40s, but by then it was quite advanced and I must have had it for many years. In retrospect I was lucky to be able to conceive several times and to carry 50% of the pregnancies to term.

After each pregnancy my periods got worse and worse each month. The Mirena coil kept the symptoms under control for a few years, but the adenomyosis kept slowly progressing.

My uterus gradually became so bulky and mis-shapen that a Mirena wouldn't stay put, so a couple of them became dislodged and travelled about (painful). The current Mirena is embedded in the wall of the uterus and is staying there for now.

The bleeding has now reached the point of becoming concerning; I get sudden haemorrhaging where I can lose a pint or more in a short space of time.

I was offered injections to induce a temporary menopause for six months and these really helped, but the pain and bleeding returned when the treatment stopped. I've just had approval for a second round of this treatment.

I would like a hysterectomy but my gynaecologist is reluctant; I think he is stalling in the hope that I can cope until (natural) menopause.

Hey, how did you all get on? I’ve been TTC since a MC at 19 weeks 2 year ago and no luck! Got diagnosed with adenomyosis last October just as I was getting all my IVF paper work and bloods and scans etc sorted! Fresh transfer failed in Jan as expected and now I’m on a 2 month down regulation which I had to push as my Dr only suggested 1. Any luck with FET and down Reg? Xx

I have both endometriosis and adenomyosis. I was unable to have children - multiple rounds of IVF with no success. I also found penetrative sex uncomfortable rather than painful. And of course pain, hideously painful periods and often pain at any other time too. Now I'm well into peri-menopause it's starting to ease off. If I'd known that IVF wouldn't work I would have opted for a hysterectomy years ago and spared myself decades of pain.

I have adenomyosis. Diagnosed at 44, by which time my periods were debilitating (couldn't leave the house for 3 days of a 7 day period as would soak through a tampon and pad in 20-30 mins), I was so anaemic that I developed alopecia, and generally felt awful. A Mirena coil was suggested. I didn't want it as had read many horror stories on here. After exhausting other options, given the choice between a Mirena, an ablation or a hysterectomy, I tried the Mirena. Life changing! I have no periods at all now and wish I'd got it ages sooner.

Hi everyone,
I'm new here...
I was diagnosed with adenomyosis in 2019
I did a full IVF round which failed and then an FET which led to the birth of my son who is 2.5 years old now. I am now pregnant (13 weeks) after another FET.

I found out in my first pregnancy that I was the only one who was concerned about the adenomyosis, my consultant believed it didn't pose any risk. I have been really quiet about it in this pregnancy so that I don't sound like a broken record; I have done three scans now and so far everything looks okay

@Loz2467 all the best with your IVF

@Mamash congrats on your second pregnancy! I had a lap and dye and hystereoscopy yesterday to check for endo but there was none and my tubes are open so it seems like my whole week of brown pre menstrual spotting and the spotting after my period is all my adeno. I just have a severe form of it if it’s this much before and after my period and much more severe than my clinic think! The 2 month down Reg didn’t work for me so now I’ll be trying longer but I feel so worried that it’s so severe and my clinic aren’t helping me.

@Loz2467 Thanks!
I have my two tubes blocked, PCOS and hypothyroidism (all of these with adenomyosis)!
I'll say keep the hope alive! There's light at the end of the tunnel!
Praying all your treatments work and you have your good news soon 🤍🤍

Is anyone still around?

I was diagnosed 2 months ago, I'd not heard of it before.

@vanillla yeah unfortunately I’m still here! My FET after a down regulation didn’t work so I’m back on more down regulation before another FET in September sometime but feeling very apprehensive. I have diffuse and focal and my focal is impinging right on my lining but cannot be removed :(

where are you up to? Sending hugs.