Adenomyosis

[Tinkeebell]

Hi there,
Anyone living with Adenomyosis, how were you diagnosed? what are your symptoms? What treatment options have you had or are considering having?
Thank you

Hi,
I was diagnosed initially via ultrasound then via MRI which showed mild to moderate diffuse adenomyosis.
I have severe pain with even the slightest spotting and heavy bleeding with periods.
I also have severe stage 4 endometriosis and had excision surgeries x 2 for that which removed it all (may grow back though).
For Adenomyosis i decided against a hysterectomy but I am taking the mini pill to prevent periods, when I do get random bleeds I have to take strong painkillers to cope.
I have found dealing with my other issues eg endometriosis and other chronic conditions has helped me keep a lid on the adenomyosis.
Best of luck x

I was diagnosed when I had a laparoscopy for endometriosis excision.

For me the adeno causes a real heavy feeling in my stomach, like someone has filled my womb with large heavy rocks. It doesn't hurt as such but it is very uncomfortable.

My womb noticeable sticks out at the bottom of my stomach and is apparently now shaped like a football instead of a rugby ball.

No treatment options according to my gynae, other than hysterectomy. I was 29 when diagnosed so that's not something I want to consider for now.

I got diagnosed via ultrasound and symptoms about 7 years ago in my early 30s. I’d been having heavy periods with a lot of pain before, during and after it had finished. It’s changed in the last couple of years, now I mainly get pain and pressure after my period but it can last a week after my period finishes. The pain is in my pelvis, hips and thighs. I used to take prescription painkillers but they didn’t help too much. I was vegetarian and became vegan as I’d read it could help. I no longer get as much pain before and during my period which seemed to coincide with diet change but could be coincidence. I don’t take painkillers now, I just use a hot water bottle or heat pad and do sometimes have to be in bed for a few days as the pain is bad.
My GP was unhelpful, basically told me there’s nothing that could be done. I did see a private gynae but they said the only realistic option for me was a hysterectomy, which I’m putting off.

I have a pre diagnosis and hystereoscopy in October to confirm.

My symptoms were extremely heavy bleeding for weeks on end. Extreme pain, bloated ness etc.

Mini pill it got worse and 2 mirena coils I just bled continuously getting heavier and heavier until they came out.

I'm on northisterone now twice a day.

I still get awful pains and some spotting.

I'm hoping for a hysterectomy 🤞

Apparently symptoms will stop after menopause, so that’s something to look forward to.

I have adenomyosis. Dxd late 30s. Have had mirena in for last 7 years, for the first 5 years it was perfect no bleeding or pain, recently started bleeding and pain again (mirena is over 5 year time limit) getting mirena replaced in a few weeks and hoping that cramping feeling will go again.

I had adenomyosis and endometriosis as well as fibroids. Tried everything and had a hysterectomy at 39, best decision I ever made. Kept my ovaries so no changes there just no more haemorrhaging for ten days every month followed by two weeks of excruciating agony between ovulation and period. I used to get about 4/5 days a month when I wasn't bleeding or in pain. It's an absolutely horrific thing to live with.

Thank you for all of your responses.
I recently had endometrial ablation and mirena inserted at the same time. The doctor said this is only to control bleeding and won't help the Adenomyosis in anyway.
He also said that Adenomyosis only causes painful heavy periods and nothing else.
I totally disagree as I believe it causes a lot of other symptoms aside from that.
I'm not sure if a hysterectomy will free me from all of the pain and other symptoms but it will definitely cure the Adenomyosis pain, so I'm seriously considering it.

@LordFoofingtonismyMaster

I had adenomyosis and endometriosis as well as fibroids. Tried everything and had a hysterectomy at 39, best decision I ever made. Kept my ovaries so no changes there just no more haemorrhaging for ten days every month followed by two weeks of excruciating agony between ovulation and period. I used to get about 4/5 days a month when I wasn't bleeding or in pain. It's an absolutely horrific thing to live with.

That was my life before northisterone.

Now it's like that with no bleeding.

@LordFoofingtonismyMaster

I had adenomyosis and endometriosis as well as fibroids. Tried everything and had a hysterectomy at 39, best decision I ever made. Kept my ovaries so no changes there just no more haemorrhaging for ten days every month followed by two weeks of excruciating agony between ovulation and period. I used to get about 4/5 days a month when I wasn't bleeding or in pain. It's an absolutely horrific thing to live with.

If you don't mind me asking how long is it since you had your hysterectomy? Have you had any issues after surgery? It's so hard isn't there's so much to think about and it's hard to know what to do. I've just had it with what seem to be treatments that just suppress symptoms and don't get to the root cause of anything. I only know what's causing my issues because I pushed for tests otherwise every doctor was recommending the same thing of endometrial ablation or mirena or both at the same time.

I feel like that's what going to be my problem next because the ablation and mirena might stop the periods but won't stop anything else

@itsgettingwierd

I have a pre diagnosis and hystereoscopy in October to confirm.

My symptoms were extremely heavy bleeding for weeks on end. Extreme pain, bloated ness etc.

Mini pill it got worse and 2 mirena coils I just bled continuously getting heavier and heavier until they came out.

I'm on northisterone now twice a day.

I still get awful pains and some spotting.

I'm hoping for a hysterectomy 🤞

Mine was found via MRI that I pushed for, I refused any treatment until I knew what was causing my problems. I think I'm hoping for a hysterectomy too

Diagnosed with endo and adeno during laporoscopy at 34 for fertility investigations, had total hysterectomy at 39 which was the best thing ever! Surgeon said the endo wasn’t even that bad (had been excised at that surgery when 34) but my womb was in terrible condition and causing the pain that used to cripple me all month from abdomen to knees, so am glad to be rid of the thing! HRT has been a godsend too. Good luck op, keep pushing for treatments as unfortunately it’s something that isn’t always taken very seriously but can be terrible for physical and mental health

@Annab1983

Diagnosed with endo and adeno during laporoscopy at 34 for fertility investigations, had total hysterectomy at 39 which was the best thing ever! Surgeon said the endo wasn’t even that bad (had been excised at that surgery when 34) but my womb was in terrible condition and causing the pain that used to cripple me all month from abdomen to knees, so am glad to be rid of the thing! HRT has been a godsend too. Good luck op, keep pushing for treatments as unfortunately it’s something that isn’t always taken very seriously but can be terrible for physical and mental health

Totally agree it's difficult to deal with both mentally and physically but doctors don't see that, of all the symptoms I've told my doctor I have the only one they seem interested in is the heavy painful periods it's so frustrating. I'm really struggling mentally since having the procedure and wondering if the ablation and mirena are going to cause more problems in an already diseased uterus.

MRI, and also have endometriosis so have had that removed two times.
I have two mirenas, that has helped a lot! I will get a hysterectomy at some point too, when my two year old doesn’t need so much carrying.
I was bed ridden with pain for two weeks per month before the mirenas. I still have a large uterus and pot belly because of it.
Good luck to you, it’s a curse!!

Oh and it took about 5 months for the mirenas to settle in. I had blood every day, but it’s now been 8 months and I’m no longer getting a period at all (though I did after the Pfizer vax).
I wasn’t sure it was going to be of benefit until I realised: hey, I’ve felt well for weeks now!!

Tinke I had an ultrasound. It showed very clear patches.

@Annab1983

Diagnosed with endo and adeno during laporoscopy at 34 for fertility investigations, had total hysterectomy at 39 which was the best thing ever! Surgeon said the endo wasn’t even that bad (had been excised at that surgery when 34) but my womb was in terrible condition and causing the pain that used to cripple me all month from abdomen to knees, so am glad to be rid of the thing! HRT has been a godsend too. Good luck op, keep pushing for treatments as unfortunately it’s something that isn’t always taken very seriously but can be terrible for physical and mental health

Agree.

I think the final bit of me that realised it wasn't acceptable was the day I was vomiting in pain but afterwards commented on how I'm going to have to find a way to live with it.

Actually - why should I!

I don't need my womb. Therefore it doesn't need to be here causing me pain.

I suffered terribly for years before having a hysterectomy last month and that was the first time I'd ever heard of adenomyosis. Nothing worked to stop me bleeding and I was exhausted. 5 weeks on, my energy has increased and the lack of back pain is incredible. I cannot tell you how much treatment I have had for back pain over the years. If I'd known I had it and what it was doing to me, I would have pushed for the hysterectomy years ago.

Isn't it awful what we are told to put up with and get on with it and we do because we have no choice. After a lot of research I know that the only cure is a hysterectomy, I don't want to have major surgery, who does, but it would seem that it's the only way to be free from this diseased uterus that is ruining my life.

@Youcancallmeval

I suffered terribly for years before having a hysterectomy last month and that was the first time I'd ever heard of adenomyosis. Nothing worked to stop me bleeding and I was exhausted. 5 weeks on, my energy has increased and the lack of back pain is incredible. I cannot tell you how much treatment I have had for back pain over the years. If I'd known I had it and what it was doing to me, I would have pushed for the hysterectomy years ago.

What type of hysterectomy did you have? Good to know you got relief and feel better. Hope your back to normal soon

Who told you to live with it?
Did you have a hysterectomy?

It was a total hysterectomy, uterus, ovaries and cervix and done via keyhole surgery. I felt a bit ropey for a few days but after 2 weeks was back in work, obviously taking things easy. I'd been seeing various professionals on and off for decades and no-one really gave a toss. It has changed my life already. I hope you get sorted soon, the mental effects are as debilitating as the physical ones

@Youcancallmeval

It was a total hysterectomy, uterus, ovaries and cervix and done via keyhole surgery. I felt a bit ropey for a few days but after 2 weeks was back in work, obviously taking things easy. I'd been seeing various professionals on and off for decades and no-one really gave a toss. It has changed my life already. I hope you get sorted soon, the mental effects are as debilitating as the physical ones

Good to hear your doing great on the other side of it. No the so called professionals don't care at all, I have yet to come across one that actually seems to care about helping. It seems to be very text book and everyone is dealt with in the same way. The physical problems are mentally draining so frustrating, I feel like I've lost who I am it's miserable and it feels like it's ruining me and my life.

I'm 3 weeks in post hysterectomy. I had my womb, cervix, tubes and one ovary removed. I feel fantastic. No more life ruled by wondering if i'm going to bleed everywhere, no more excruciating back pain. While it was somewhat bittersweet, losing my womb, it had served it's purpose wonderfully and i had no intention of having more children. So to me the decision to have it removed was a no brainer.
But i had to push to be diagnosed and then we saved and my parents helped out and i went privately. No way was i waiting for my menopause to kick in to 'cure' it.
Biggest thing for me now is getting over my quite bad anemia and building my ferritin levels back up.
It sometimes felt that because my bleeding was hidden away then it was something, as a woman, i had to put up with it. If i poured with blood and clots the way i did every month from my mouth would i have been treated better/sooner/more equably?
It's shocking the way women's health issues are viewed, belittled, undermined, undervalued.