Adenomyosis

[JoolieGeoff]

Hello, I am looking for some advise from other Women who have been diagnosed with adenomyosis.

I am 32 years old and have not yet had children. I have started to experience pains, so strong they make me sick. It happens at a certain stage in my menstrual cycle, lasts a short while then it goes and doesn't come back till next month. However when the pain arrives it is debilitating.

The ultrasound has come back showing I have adenomyosis + PCOS. I need to arrange a doctors appointment to discuss this. I am looking for advise on what to push for. Should I push to see a specalist / gynaecologist, in which case what is the reason, what would they offer to help me? Everything I have read online is contradictory, there is no cure for this but also no treatment could lead to infertility. I am concerned about simply being fobbed iff by being put on the contraceptive pill or some sort of contraceptive as a 'treatment' as I do hope to have children one day and I feel this is just masking the symptoms.

If anyone else has been on this journey with the NHS i would really appreciate some insight. Thank you

If you have adenomyosis then, along with the symptoms you describe, you almost certainly have endometriosis as well. Ask for a laparoscopy and then excision of whatever they find.

So sorry. I remember googling and getting more and more panicked and confused.

I have adenomyosis and endometriosis. This was uncovered at aged 29, having moved countries. I started pushing for treatment in the UK from the age of 21 and was fobbed off. I saw multiple specialists btw.

I had surgery for endometriosis and I have two children conceived via IVF. We went down that route as I was told I would have a short window before the endometriosis came back.

I heard from my gynaecologist that adenomyosis can make miscarriages more likely, but they're not entirely sure of its impact on conception/fertility. Endometriosis (which you may also have) definitely does have an impact on fertility.

Go on the pill (no estrogen) and ask for a lap. If you have a partner (not trying to scare you), I would bring forward any ttc plans. You may have no issues, but you may and at least that way you have more time to sort any issues out.

@MissEDashwood19 out of interest, how long were you told the window was, before the endo would come back? If you can remember…

I have just been diagnosed with adenomyosis. I am 48. I have very heavy painful periods every three weeks, spotting the rest of the time, and a big belly. Periods are manageable with ibuprofen and codeine.

My question is, is this likely to get worse or stay the same? Wondering if I can last out til after menopause without extra treatment. I can’t take hormonal medications because of other medication I’m already on.

I also have endometriosis, fibroids and ovarian cysts…