Does anyone on here have adenomyosis? Can I ask what your pain feels like?

[ShoopShoopBaDoop]

I was diagnosed with diffuse adenomyosis in late 2023. I was 50 at the time.

I've struggled with gynae issues for decades. Very heavy periods, never that painful but super heavy. Any pain always came during ovulation, this would last a full week and the pain was to the point it hurts to sit.

Always told these things are normal for some women and the only thing ever picked up during ultrasound scans were uterine polyps and a thickened uterine lining. I have had many hysteroscopies over the last 10 years to removed the polyps but nothing helped so I had a uterine ablation in 2022. It cured the heavy periods but the heavy bleeding was replaced by very very painful periods.

I put up with this for a year as thankfully the pain only comes during ovulation and my 'period' (although that is a good 12-15 days per month), I say 'period' as I no longer bleed due to the ablation but still (even at 53) have a cycle and the pain is every month during that time.

In 2023 I asked my gynae for a MRI as I could not understand why I was getting so much pain, this is when the adenomyosis was detected. Endometriosis was also picked up but I feel the pain is probably being caused mainly by the adenomyosis although during my period my pain radiates up to my stomach area too so I think nerves endings etc are involved?

How does the pain feel to you? The only way I can describe it is it's as though my uterus has swollen and it and all other organs in that area are being squeezed tight inside metal teeth. The pain is in the front, deep inside and radiates to my lower back and hips and during my 'period' my stomach area bloats and the pain radiates right up from lower to upper abdomen.

I can't have a mirena as my cervix is shit right by the ablation, I can't take hormones as I suffer from aura migraines and they exacerbate these so I just get by on a tens machine and co-codamol.

I am due a hysterectomy which I'm gutted about as I dread surgery and had opted for the ablation to avoid such a big op but nothing I can do about that now unless I want to live in pain forever 😞

If you have adenomyosis so you have a similar pain and how to you manage it all?

I suffered much as you are suffering, and the only relief I found was to have the hysterectomy. I now no longer have any pain, swelling..nothing! It's amazing

This sort of pain is common with endometriosis. Excision is the way to treat it. The hormonal route is Prostap, which shuts everything down. If you want to avoid hysterectomy, you could ask to try a couple of months of Prostap and see how it goes. You might find it alleviates the symptoms to where you don't need to do anything else. Hysterectomy won't cure endo, it grows elsewhere.

That's really good to know because I'm dreading the surgery.

massinsaln

I should have mentioned they will excise the endo at the same time as the hysterectomy.

I've tried prostap and most of the other options but they all exacerbated my migraines and made me feel quite unwell. So sadly I don't think I have no other choice now but to have the surgery.

As I'm now 53, my gynae is hoping menopause will relieve me from my endometriosis post surgery. He says most of his post menopause patients get relief after menopause, not all but most so I live in hope I will be one of those 🤞