Hi everyone,
I was diagnosed with adenomyosis today. The gynaecologist has sent my scan results to another specialist for further checks. She didn’t really tell me anything else. I suffer with bad nerve pain because of the condition. I was wondering if anyone else has being diagnosed with this and if you could share your story. I’ve never heard of it before.
Thanks
Steph x
Hi sorry to hear this
I was diagnosed at 22 2 years ago after having my daughter. I was told after some ultrasound results and nothing was done now I’m suspected endo Also. Some scan pick up my adenomyosis and done don’t which is strange. My gynae said to see that basically with adenomyosis your womb is how your face would look after a boxing match with mike Tyson!
All bruised and scarred
Hi I got diagnosed during a laparoscopy 2 years ago but nothing done to cure. They dont know much about it even the diagnosis is not certain until they do hysterectomy and send the uterus to the lab!For so many years they thought its a fibroid until the second lap in 2019 and still they are not sure but bcuz uterus is very bulky and cavity distorted they say its Adenomyoma which I believe means it is a mass not everywhere but still no surgery to remove it bcuz they are not that skilled I believe!
We did several rounds of IVF but only embryo banking not a transfer bcuz RE says with Adeno it wud be disasterous most probably a miscarriage as per RE even if it takes so the best option is going for surrogate which is not an easy n cheap option!
The other alternative she said is to try going on Visanne for couple month before transfer to try to decrease uterus size! But considering we have very few embryos frozen it wud be very risky to try!
So we’re undecided and very exhausted put a hold on everything for now!
Hi Jasmine,There' a useful video about adenomyosis on the Endometriosis UK website:
endometriosis-uk.org/adenom...
I found it very helpful to understand what it is.
In my case, I suspect I have adenomyosis because the notes from my ultrasound say I have a "bulky" uterus" (I looked it up).
I am now using the Mirena coil (hormonal treatment), which I read is often recommended for adenomyosis. When I had a laparoscopy for endometriosis, I requested that the Mirena be put in at the same time because I would be under general anesthetic anyway (years ago when I had the copper coil placed, I just had ibuprofen, and having the coil put in place did make me forget to breath because the pain was very short but impossible to ignore).
I've only had the Mirena for about 2 wks, so I can't report much - except that in terms of the sensation, I don't feel it (which is great for me because years ago I had the copper coil, and it was always somewhat uncomfortable and I was aware of it sitting in my uterus). So far, so good! I am hopeful that this will work in my case . It can be removed, so I am glad I can change my mind if I want to.
Hey, I've not got a diagnosis but when I went for an endometrial biopsy and Mirena fitted to help with all the issues I've been having, they commented that my womb was quite large. I asked after if it could be Adenomyosis and all she could say was 'possibly, but the Mirena is one the best treatments anyway'. Can I ask you what nerve pain you have? I've started having hip pain on one side that seems related to my cycle. Hope you can get some more answers and help x
Hi JasimeLeah!I was diagnosed last year- Well, I say this - I was talking to the Doctors about my endo and my symptoms - She concluded that one of my symptoms was probably down to my Adeno rather than my endo - I'd never even been told I had it!!
I had never heard of it before this occasion however the particular symptom that was in question was a pain in my groin line - This sometimes gets so bad that I find it difficult to place my foot on the floor when walking due to the muscles moving and irritating it! I have had lumps in my groin lines that hurt when I am run down or on period etc.for years but I always put them down to my glands!
Laura x
Hi I have just been today and the doctor did an internal scan and said adenomysis. I have to go back and have a biopsy also .. did you also have one if you don’t mind me asking
I had an MRI scan in the end and then a hysterectomy. If you’re on Facebook there’s a great page called adenomyosis support uk and another called hyster sisters uk, both with lots of people who have suffered badly with adenomyosis and will be able to answer any questions. I’m also happy to answer any more questions on here if you don’t have Facebook x
Thank you that’s a great help - the doctor did say to me today ultimately it’s a hysterectomy.. I’ll go have a look at those pages it’s always good to read other experiences
Anyone had the same?
Removal or not of ovaries
CA125 level 89
Is this fair according to NHS Constitution ?
