Endometriosis pain after hysterectomy and... - Endometriosis UK

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

niknak247 profile image
6 Replies

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.

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niknak247
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6 Replies
Brownlow profile image
Brownlow

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

niknak247 profile image
niknak247 in reply toBrownlow

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

Brownlow profile image
Brownlow

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.

niknak247 profile image
niknak247

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......

ladybird7 profile image
ladybird7 in reply toniknak247

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

Brownlow profile image
Brownlow

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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