Endometriosis pain after hysterectomy and oophorectomy - Is there anything that can help or am I stuck with the pain forever?

I have had a radical hysterectomy and oophorectomy last September. I was initially put on HRT patches when I came out of surgery - I noticed that I felt better as the patch was wearing off. After a couple of weeks I ditched them altogether. At that point I was coping with the menopausal symptoms. By January the hot flushes were getting worse - so went to the GP - she put me on Estrogel. Within a week the pain had returned to my pelvis, bladder and chest - I went back to the GP who suggested I lower the dose - which I did, however the pain continued to increase my migraines returned last for over 2 weeks - the pain was so bad that I was hospitalised. I have since come of HRT altogether - the pain however is still there - to the level it was prior to my surgery. So now I have horrendous pain and hot flashes appx 2-4 per hour leaving me completely drenched then cold and shivering.

6 Replies

  • Oh dear, you poor thing. I'm just wondering if going to an endocrinologist might be better than your GP 'trying' things.

    Wishing you well. x

  • Thank you - Yes, that sounds like a good idea. I will ask. x

  • Have you ever thought of chinese medicine with acupuncture or seeing a herbalist or naturopath? The more I experience conventional medicine for women the less impressed I am. Understanding of complex women's issues and how best to treat them is often lacking and doesn't consider the who,e person. It might be a case of trial and error getting the support you need but it might be worth considering alternative or complimentary avenues even if just to alleviate some of your symptoms.

  • Funny you should mention it - was just reading about acupuncture - I've had Severe chest pain along with the endo and adenomyosis - they have only just put the two together and told me that it is likely that I have endo on the lung or diaphragm. As they don't like to do surgery there - I was told I would need to manage the pain with meds. Given that I don't have ovaries anymore - I don't understand why the pain is still around - I get that the HRT has woken it up - but I have not had any for 6 weeks - I assumed the pain would go - but its persistent - will it just fade or remain the same - I can't seem to get a definitive answer......

  • I have been having acupuncture for about 5 months now, I really like it. It is a good painkiller although not always for very long. I find it incredibly relaxing as well though which can often help with the pain just as much. I originally got it on the NHS but after 10 sessions I had to go private (student rate £25 - fully supervised so exactly the same).

    I tried Chinese herbs too but kept getting diarrhoea... I would stop them, take a herbal tonic for a week and then restart but always the same so I gave up. It seems I have a diarrhoea problem though cos it hasn't stopped since 5 weeks... Good way to lose weight but .... Got a blood test tomorrow to see what's up!

    Take care xxx

  • I'm no expert but I should think that it might take a while for the oestrogen to fully leave your body even though your flushes have returned.

    There are a few women on the forum with endo on the lung and they might be able to help you with ideas for pain relief.

    Hope you find a way through all this. x

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