Need a friendly listening ear or two...

[GreenViolin]

I'm really struggling today following a consultation with my gynaecologist. I've been desperate for this appointment as my pain and bloating is the worst it's ever been, and nothing I've tried with my pain specialist has worked so far.

The appointment itself went well, but I came away realising that because I have perimenopause symptoms this makes treatment so much more complex.

My latest ultrasound shows endo hasn't come back (good) but my adeno is getting worse and I now have fibroids in my uterus which itself is very enlarged. We were discussing having my Mirena out and going on Dienogest and having another MRI to consider surgical options until I mentioned I'm having perimenopause symptoms. I came away having agreed to try full HRT (i.e. oestrogen to complement the Mirena) to see whether that helps my perimenopause symptoms, which probably won't do much for my pain / bloating. Dienogest is not an option now and I can't have my Mirena removed given I need that for the progesterone, although there's a chance my body is reacting to that by bloating. If HRT doesn't help me enough, then I'll have another MRI and discuss surgery again.

I understand that we need to try one thing at a time and there's no guarantee any of it will work, but then I got the letter detailing our consultation, which said "I am pleased to hear that your pain is now almost manageable". One of the first things I said was the pain was worse than it ever has been so I was pretty distraught to have that documented. I'm sure it was unintentional but it's not the first time something like this has happened (and not the first time I've given feedback). I just find things like this have a huge impact when you're already in a super fragile state.

[Jazzransom]

That’s unbelievable!!! Although sadly not unusual, I’ve had that kind of report through from doctors before. I don’t understand it, it’s almost like they just switch off during the consultation and have an entirely different version of events.

When I had my NHS consultation she discharged me with a pill prescription even though I said the pain had been getting worse. I couldn’t even take the pill she prescribed because I get migraines so can’t have oestrogen.

These appointments can be such an anticlimax because as you’ve said, they just remind you that you can only try one thing at a time and they might not work.

Make sure you write or phone in to correct the notes in case it affects future consultations. Pain is NOT manageable!!!! Sorry you’re going through this and I hope this next treatment works better for you. Xx

[SavageGold]

Its awful when mixed up information is then sent out as record. I was on the list for a laparoscospy in October 2021. When I phoned for an ETA as my pain was worse I was told Id been removed from the gynae list, not added for surgery.Then this year I was at my new appointment and I was told I was put on the list again for my laparoscopy, I was also added to see an interventional radiologist incase I would benefit from pelvic embolisation and that they would write to my dr to increase my depo as I needed it more and to help me liase with another drs surgery where I work which refused to treat me recently.

Low and behold gynae sent a letter to my Dr saying I did not attend my appointment and I had been removed from the gynae list... again.

They make it up as they go along. I did refute this just before I made another complaint to the health board. And I got an apology. Hopefully the correct letter is issued for both of us shortly

[East_end]

Sorry to hear this, unfortunately, you’re not alone in this experience, it’s frustrating when Healthcare professionals document the opposite information you have. Because they’ll probably be believed. Hopefully your GP also has a record of you expressing your increased pain.

Getting these things rectified is also a mission.

I know your frustration from experience, I hope one day a light is shown on these things, and the psychological impact they might have on a patient going through so much mentally already due to endo/Adeno.

[MissMolecules]

Oh my word, isn’t it infuriating? I was recently diagnosed with stage 4 endo and adenomyosis after being told I had ibs for 30years. Adeno and endo are driven by oestrogen and make symptoms worse so I had to stop mine. My adeno symptoms are horrendous. Did you see an endo specialist? Lots of love, it’s rubbish isn’t it? x