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[sarahlou]

Hello!
I’m 47 and was on HRT for 8 months because of mood changes and sleep disturbances & anxiety (estrogen patch & progesterone tablets - then switched to evorel sequi because of water retention).

I stopped in June because I forgot to take them when I went away and I’d also been diagnosed with a thickened endometrial wall (11mm)

Since September, I’ve had acute pelvic & back pain mid cycle (4 days) and during period (5 days). It feels like my womb is being dragged out of my body and it’s completely dehabilitating.

December - the pain got a lot worse and felt like Labour pains - January it’s been pretty constant - pre cycle pain was a 10 in my pain scale and only codeine or oromorph could relax my pain - I couldn’t empty my bowls, wee normally, wear a tampon because of what felt like inflammation and acute pain.
I’ve had endless pain now for 15 days. Post bleeding ending (31st Jan), I was finally able to pooh normally and wee, but the pain is just not going away. If I get up and walk around, it becomes angony after half an hour.
I’m also off my food and feel sick (VERY out of character for me).
Im also unable to work, which is putting the family under extreme pressure. The kids have seen me in agony and on very strong pain killers and have said they’re worried I’m going to die 😢
My partner is very stressed, obviously.
I’ve had another ultrasound, that’s shows 11mm endometrial wall again (I think they’re not so concerned about this now). The MRI result came back yesterday and it showed nothing obvious.
So what could be causing such acute pain? (It’s still much worse mid & during my cycle) and what the hell can I do about it?
I’ve got a consultant gynaecologist appointment on 26th February. It feels like a long time to wait in extreme pain, unable to walk, work or take care of the family.
I’ve been to the GP 4 times and hospital twice (A&E & women’s unit, referred by my GP yesterday). But everyone keeps kicking me out with more opiates.
I’m desperate to end this pain and get back to active life.
Does the MRI mean it’s iunlikely to be anything sinister? Therefore they’ve assessed it as chronic condition - so have to wait on painkillers?
I’m frightened of getting addicted and I don’t like the state they put me in around the children.
Could this literally be my version of menopause?
Or coming off HRT too quickly? (I did gradiate a bit, but nurse said to stop as thick endometrial wall).
I’m so desperate, I’m thinking of getting a hysterectomy privately without paying for diagnosis investigations. It could all take years on the NHS here and I’d rather get in debt and earn it back when I’m strong again.
Any advice really appreciated.
I’m usually fit and well. Slightly overweight.
I’d normally exercise, but it hurts too much atm.
Thanks
Sarah

[Taz2]

Hi sarahlou. You've come to the right place and I'm sorry you are going through such a horrible time. You will find lots of support on here.

How were your periods before beginning HRT and did you have a bleed each month if you were on sequi? Also, you mention that you stopped due to being diagnosed with a thickened lining and I'm wondering why you had a scan or were you already experiencing pain etc? At what stage of your cycle was the last ultrasound carried out? I think that in the proliferative phase (day 1 to day 14 of a 28 day cycle) then 11mm is acceptable in pre-menopausal women not on HRT. Not quite sure of that though. 

Taz x 

[CLKD]

Awful.  I remember pre-bleed my bottom would feel as though it was falling out  with a dragging feeling throughout the pelvic area and pains down my thighs.  My period pains were excruiating.  'feminax' was my go-to, supposed to be taken 2 days prior to an expected bleed.

Does the pain keep you awake in the night?  Which opiate have you been prescribed?  U R unlikely to get addicted if taken as recommended, does it ease symptoms at all?

Could U take a cancellation appt B4 26th Feb., if someone doesn't turn up or no longer  wants their appt.?  Do ring the Dept if you are able to attend at short notice.  In the meantime make a list to take with you to discuss.

Could it be  .......... endometriosis?  I suspect that any hormone upheaval will cause intense nausea  .

Don't get a hysterectomy without getting a clear diagnosis, 2 check for endometriosis.  It is major surgery so you will also need to discuss any HRT that may be required after. 

I feel for you I really do. 

[sarahlou]

Thanks so much - I got a cancellation for this Wednesday! 3 sleeps 🙏
I had regular periods all the way through. Changes in bleeding pre evorel (very heavy, then very light)
I just want the pain to go away! And now I stopped bleeding on 31st Jan, I’m wondering whether to push myself and try to get through it with exercise, because I’m getting so unfit.
But could make it worse.
I just would have thought MRI & ultrasound would have shown anything growing.
So what on earth could be causing such intense pain?
Hopefully I’ll find out on Wednesday 🙏🙏🙏🙏🙏