older living in horrible pain forever....... - Endometriosis UK

Endometriosis UK

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older living in horrible pain forever......whole life.

mimilover profile image
10 Replies

being 65.....I am so angry. I had my first surgery at 26 for endometriosis. In the early 1980s my doctor gave me some wrong information including not mentioning it can grow back. My second surgery was age 39. Many years of unexplained pain. I had endometriosis everywhere. Up the rear and on and in bladder, other organs and stomach walls. I even got to watch the surgery with an 8 track tape they made.. Stupidly I thought ok that's it. no more. surely it's over. No one told me it has roots. No internet like this to look up places like this article etc. Unexplained pain has driven me crazy and to be honest very depressed and to be BLUNT don't want to live anymore. A couple years ago I went to a doctor who was the first to say ... WHY ARE YOU STILL ON ESTROGEN??? well no one told me it made (the worst was the one I was taking) your endometriosis roots grow .... a plant hormone estradiol. The worst offender. I had even doubled it with my primary dr. to make me feel more sexual. Screw that it wasn't worth the pain so as soon as I got home I flushed all estradiol town the toilet. I of course at age 62.....started having the worst ever hot flashes. It's been three years. My whole stomach and pelvic area pain is gone except around kidneys. HORRIBLE INTOLERABLE back pain. Now at 65 im too tired to continue going to drs only to leave with nothing other than my check book being opened. Im so over it. Pain pills are looked down upon by AA. I have third degree burns on my back from 24/7 heat and ice. I'm going to try one more time going back to one more dr. I keep reaching dead ends. I'm a bitch now with my world getting stronger and more and more despondent. Truly. I won't kill myself because of my daughter and 84 year old mom and also partner and animals. However , due to most this physical and also terrible emotional pain..... I want to. I should not have this pain. I don't know where to turn.

Laurie

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mimilover
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mimilover profile image
mimilover

oops I meant smaller not stronger. ha.

LisaAmazona profile image
LisaAmazona

What a nightmare. Decades of pain. But this time when you go to the doctor you'll be armed with knowledge. So much on this forum alone. I wish you all the luck in the world for getting some results this time round.

mimilover profile image
mimilover in reply toLisaAmazona

Thank you so much. Well next week I’m going back to the dr that said why are you on estrogen! I swear I want to get to the bottom and if I need one more surgery it may just be scar tissue . That’s what a chiropractor said . So I will now make this dr follow thru . I will get a referral for a gynecologist. And then ultra sound and bla bla. Thanks again for your sweet message. What have you been thru?

Helena45 profile image
Helena45

You sound desperate after years of pain. I don't know whether you have ever considered chronic pain management or been offered it where you are based but it looks at various psychological techniques, including hypnotherapy plus acupuncture to control the brains response to pain rather than look for a cure when the neural system has become hypersensitive to stimulus. I've had lots of patients with various medical conditions which cause severe chronic pain who have found these interventions useful. It might be worth considering once the oestrogen levels have subsided if you still are suffering.

Best wishes

mimilover profile image
mimilover in reply toHelena45

Hi That’s something I haven’t done. I have a dr appt in a week with the dr who said why are you still on estrogen ? This time I will follow thru with that. Thank you.

You have endometriosis?

Helena45 profile image
Helena45 in reply tomimilover

Yes I've had it for almost 40years unfortunately. Various treatments in that time and now hoping that with menopause things will subside. I have been advised by my gynaecologist to wait until I'm through the change then he will consider operating on my endometrioma and bowel/urethral endometriosis if it is still causing issues.

mimilover profile image
mimilover

Yes I’ve tried acupuncture many times. Ug. Of course I don’t want pain pills . And I know there’s no cure . I get what you mean with my back and the brain response . I will try and follow thru with referrals for that . Thank you.

mimilover profile image
mimilover

Well because all female parts are gone (from two surgeries……I’ve been told to not take progesterone if you don’t have a uterus.I will re ask . I need prometriam . I need to ask about that next week Becaise I stopped taking that long ago. That is for women that without…..I’ll be going to a gymocologist with a referral from this dr. Yes thank you I won’t open the check book ever again walking away with nothing but pain and no answers . Gggrrr….thank you!

mimilover profile image
mimilover

Hi yes I have a tense machine and yes it works . I go thru a lot of batteries ha. Thank you for saying this post op stuff . I will look into HRT but natural didn’t work for me . I finally found the estrogen that worked (to make me not want to kill somebody I swear I was just a mess) and it really took away all that tense feeling everywhere etc etc…….but who knew . Yes I was f……g feeding a garden inside me. Well I am really glad for this support . It validates me and now I know why my resent (2 years ) ago IMAGES showed NOTHING. So thank you. This time I won’t stop . I am so thank ful for this info.

mimilover profile image
mimilover

I will ask about Prometrium . Even though I stopped taking it ( I forget why I stopped)……..💜💜💜thanks for this.

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