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Newly diagnosed with Adenmyosis help please?

(8 Posts)
UnbalancedMum Fri 22-Nov-19 14:32:55

Hello Everyone,
Bare with me as this may be a load of waffle.

I’ve been having chronic pelvic pain for over a year. I’ve always had irregular periods and on/off pain especially around ovulation and before my period. I have four children (9,7,5,3) so I put the irregular periods and worsening pain down to this. A year ago the pain became more frequent and more intense and I started tracking my pain and cycles, we aren’t having anymore children (DH had the snip feb 2018) I realised my cycles were still irregular and because of the chronic pain, it affects everyday life now I really struggle,I went to the gp and was sent for a scan in Feb. I was told I had cysts on my ovaries and due to my pain I needed to see gynae. A failed referral, incompetent doctors surgery and nearly 9 months later I was seen today by the consultant I also saw for my pregnancies! A lovely man and very good at his job.

He told me my ovaries are heavy because of the cysts and hanging down causing me pain and that my scan showed I have a bulky enlarged uterus and along with my pain this means I have adenmyosis. He explained that because I’m young (nearly 28) he doesn’t want to rush into a hysterectomy. He gave me an injection called zoladex and said I need another in 28 days and again 28 days after that then he’ll see where things are at but ultimately I will need a hysterectomy as that’s the only fix for adenmyosis and injections cannot be taken long term.

I had my youngest with me and I was shocked to have someone actually take me seriously and give me an answer and do something for me (after various doctors and a&e trips telling me it’s in my head or just a bad period!)

Am I right in thinking if this injection helps my pain then I’ll be going for a hysterectomy ?
Also does anyone have any experience of the injections ? I just want the pain to stop😫

Thankyou

OP’s posts: |
MyBeloved Fri 22-Nov-19 20:42:21

Hi @UnbalancedMum

Sorry you had this news. The positive with adenomyosis is that it is restricted to the uterus, unlike endometriosis.

I had adenomyosis very severely and suffered for over a decade. I ended up having a total hysterectomy, including remival of my cervix and ovaries, as my ovaries were bleeding as well. I feel a million times better.
I refused zoladex because I did not want any more children and by the time they diagnosed me I was in my 40s. See how it works for you - it might be a good compromise. But ultimately, hysterectomy is the only cure.

Best of luck.flowers

UnbalancedMum Sat 23-Nov-19 07:24:54

@MyBeloved thankyou so much. I am glad you finally got some relief! flowers

OP’s posts: |
Toomuchgoingon Wed 11-Dec-19 23:04:01

I have been having lots of stomach pains/bloating etc and following a scan, they believe I have this too. Now waiting for a referral for a gynocologist .
I felt so relieved when they said they had seen this on the scale. as I was beginning to think they thought I was making it up. I'm not menopausal yet though in my late forties but not having periods, It will be interesting to see what they say. It's driving me nuts

Toomuchgoingon Wed 11-Dec-19 23:05:04

Flaming auto correct. Scan, not scale

VisionQuest Wed 11-Dec-19 23:19:26

I have similar issues and am soon to have a laparoscopy. How were you diagnosed? Also did you have pain all over or was it mostly on one side?

ViveLEntenteCordiale Wed 11-Dec-19 23:27:40

A hysterectomy is the only cure for adenomyosis. Does he suspect endo as well because of the ovarian cysts?

I only have endo and have had three surgeries, the last with a very experienced specialist gynae. After that I was put on a similar drug to zoladex called Synarel. I was 44 when I started and because I had a good response - pain reduced and bleeding stopped - I have stayed on it long term. This is a bit off label I think and there can be downsides but I feel fine - essentially I had an early medical menopause. My greatest fear is that I will stop it when they think I'm past the menopause, but there's no way to tell without trying!

Anyway this could be an option for you longer term - it could at least buy you some time and you could have the hysterectomy when you're ready. If you have a hysterectomy and they take your ovaries too (which is important if you do have endo too) then you will have an early surgical menopause anyway, so you're looking at the same potential issues either way.

vics26 Wed 11-Dec-19 23:50:11

I've recently been diagnosed with this after yrs of super heavy painful periods that got worse after 3 children, and increased constant pelvic aches. Possibly endo too. Have been given mirena coil which although doesn't work for everyone seems to be helpful for me. Something to do with the progesterone does directly applied which helps reduce the thickness of womb lining. Maybe mine isn't severe but has definitely reduced the size of my stomach

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