Support thread for chronic pelvic pain and those waiting for a diagnosid

[Redandbluespots]

Following 3 years of severe pelvic pain, I had a hysterectomy last year for fibroids/adenomyosis. They said I didn't have Endo, after various tests.
I've had painful/heavy periods my whole life.
For 8 weeks after the hysterectomy I was painfree but the menopause symptoms were brutal, so I started on estrogen only hrt. My pains returned with avengence and they now believe I have Endo, due to the pain being hormone receptive. I am awaiting to see a specialist.
I have since left my job due to the emotional and physical strain of being in crohnic pelvic pain. The pain is deep in my pelvis and radiates to my back and down my legs It also affects my bowel and bladder. It would be nice to connect with others in s similar position. I am 50 x

I'm afraid I have no advice but understand what you are going through.

Following decades of gynae issues and endless procedures (including a failed uterine ablation) I have been diagnosed with endometriosis and adenomyosis. This was via a pelvic MRI back in December 2023 when I was 50.

I am on a waiting list for a laparoscopy (god only knows when that will be) and I will probably need a hysterectomy at some point.

It does sound very much as though you have endo, my bowels are terrible and I have regular pelvic, lower back and hip pain. I imagine the oestrogen has exacerbated the growth of the endo deposits.
My endo gynae says hrt is very hit and miss with menopausal endo sufferers. There should be more research out there, it seems to be all based on younger women.

My friend had a full hysterectomy 5 years ago, in her late 40s where endo was found everywhere and she's still struggling with it all.

Thank you for your reply. Our stories do sound very similar. I am so sorry to hear you are suffering too. What pain relief do you use? I use Paracetamol, Naproxen and Co-dydramol when it gets really bad.
I really hope you don't have to wait too long for your hysterectomy 🙏

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