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(10 Posts)
monkeyblonde Thu 10-Nov-16 19:31:57

I have been diagnosed with this today.

There is limited information on the internet, just looking to see if there are any fellow sufferers out there?

kissmybumandsaychumchum Thu 10-Nov-16 19:39:46

Am about to head out but yes, I had this and had hysterectomy in March this year. I found a good support group on Facebook, but if there's anything at all you'd like to ask me, please do, happy to help if I can.

monkeyblonde Fri 11-Nov-16 14:08:43

Thanks for the reply, I think that I've found the support group you mentioned. My diagnosis came as a result of a scan post previously diagnosed ovarian cysts and fibroids. I rate my GP highly although she just wrote the name of the condition down (Adinomyosis) and said I should go and read up about it. Should I be under any sort of ongoing care? I am already booked to have a Mirena fitted (have had one previously) but now reading some of the stories around hysterectomy etc I am now much more concerned. I am 39 if my age makes a difference?

ChunkyMcBitch Fri 11-Nov-16 14:27:38

I was diagnosed with this 6 or 7 years ago as well as fibroids. I was offered a hysterectomy but the recovery time just wasn't doable for me so I had Uterine Fibroid Embolisation. The interventional radiologist who did this for me assured me it was very successful in treating Adenomyosis too - 2 and a half years post op I have to say I agree with him! I was also offered the Mirena, that seems to be the first point of controlling the symptoms.

Anything I can help with, please ask.

kissmybumandsaychumchum Fri 11-Nov-16 14:49:13

It really depends on how it progresses, some people manage with it for years without too many issues. For me, I had pelvic pain every day and was on constant medication for pain, ended up using patches and unable to drive, and couldn't work. I'm 44 and had already been sterilised so when they offered the hysterectomy, it wasn't a hard decision.
I would see how you go with the Mirena, it does help some people, hopefully you will be one of them!
Another treatment that gets offered is ablation, I had this and it bought me about 2 years respite before things came back with a vengeance, so it was worth it.
My hysterectomy though was a lot easier than I expected, had my ovaries out at the same time due to family history of ovarian cancer, was home the next day and the hardest part of recovery was being bored as I felt well enough to do things quite quickly!

monkeyblonde Fri 11-Nov-16 17:22:43

Do any of you ladies suffer from weight gain (esp around stomach area) as a result of this? I need to learn de some weight but because my tummy feels tender and I have no energy I just can't manage to get started....

kissmybumandsaychumchum Fri 11-Nov-16 17:54:24

I had dreadful swelling with it, some days I looked heavily pregnant. It might be that as much as actual weight gain. I found I could swim but other exercise just made symptoms worse.

Cocolepew Fri 11-Nov-16 18:07:03

I had this and the swelling was ridiculous, it was my womb getting larger. Everyone presumed I was heavily pregnant. I was in a lot of pain from it and had a hysterectomy within a year.
I had had an ablation a couple of years previously so didn't have periods. Personally I think it was the cause if my problems.

monkeyblonde Sat 12-Nov-16 17:43:41

I have been thinking about all this a lot today and it's scaring me! I have almost constant discomfort (I wouldn't say pain), my moods are all over the place (not sure if connected?), but I can't imagine it getting to the stage where I can see hysterectomy as the only solution. I'm scared about how things may deteriorate. Should I be?

kissmybumandsaychumchum Sat 12-Nov-16 19:16:02

Hysterectomy isn't usually offered until other treatments have been tried, and it may be that the Mirena gives you relief from symptoms. It is a progressive condition but you may be many years away from facing a hysterectomy decision . Some women get enough relief from treatment that it sees them through to natural menopause when things improve for them. I know it's hard not to worry but all you can do is take it one day at a time.
Having a good GP helps, mine told me there was no such thing as adenomyosis and I had to really fight to get referred to gynae.
Stress can make symptoms worse, so easy to say I know, but try not to worry too much about things, just concentrate on feeling the best you can right now flowers

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