Just a survey: How many of you had endometriosis and are taking HRT?

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Originally Posted by leisha For all of you with endo, just thought you might like to know that I read a article recently where doctors found endo in infants after an autopsy was performed. I found that very interesting. I know that there are many differnt theories as how it comes about in our body, but to me, this suggests that we are just born with it and then when our hormones start to change at puberty it begins to grow and cause pain.

Leisha,

That is very interesting!

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Originally Posted by shegunner_wales Here in the UK (or at least in my area) we dont have post op check-ups, just go back to GP if there any problems or worries, You know sometimes i wish i had gone private, if only i could afford to have done so! i was seen by GP monday but my hospital notes have not arrived yet, i dont even know what stage my endo was, I've suffered with it for nearly 12yrs if that gives any idea, last laporoscope, 4yrs ago proved the endo was very widespread outside the womb & tubes as well as inside, but consultant told me there were 4 'patches' of endo after i had the hysterectomy, i queried this because of the results of last laparoscope, and as i had been on medication to stop the periods, he reckons it had died back a bit, yet it was still giving me as much pain as ever! I am on Climaval 1mg oestrogen only, tablet form, tho my consultant told me they have to be to monitor me carefully as some HRT can aggrevate & feed any remaining endo outside the womb, which was something i did not know. Cattitude, im so sorry you have been through so much, and had such an awful experience with HRT, i can only imagine how horrible it has been for you, you were diagnosed the same year as me, i was January 1994. Ive also heard that a herbal remedy called Black Gosh (sp?) is meant to be fantastic for flushes, does anyone have a take on this?

Shegunner_wales,

I have read about Black Cohosh. I am taking 40 mg a day but have seen that some recommend 80 mg a day...I do believe it has helped some but I am still getting frequent hot flashes...not as many as before though...

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Originally Posted by slc Likes Cats I also had severe endo, chocolate cysts, adnomyosis, enlarged uterus, and severe hemmoraging. I started on HRT about a week after surgery. It was awful not being on the HRT. I am now on the Vivelle .1 and compounded bioidentical estrogen, Prometrium, and compounded testosterone. I feel so much better than before. My gyno told me (when I expressed concern about hormones and my endo) that it is rare for women who have hysts with prior endo to have it return. Good enough for me! Also, I know some women have problems on hormones, but there are many women who don't. Quality of life is where its at as far as I'm concerned. Everyone is an individual. Try everything to see whats best for you. Good luck! XO Sue

Sue,

Thanks for the encouragement! I am taking calcium and magnesium to hopefully help prevent osteoporosis and have started OTC progesterone cream. I'm sure it is not as strong as the pharmacy "mixed." I am just trying to be very careful about developing more adhesions...I've seen people with bowel obstructions and its no picnic....the dr had to do alot of work around my colon because of the adhesions....don't want to cause any future problems....

I had a small amount of endo (very mild) and am on Estradiol. I feel great and am not having any problems. I have always heard that with the more severe cases of endo that taking estrogen after a hyst can cause it to reflare up again.

Good Luck!

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Originally Posted by Witchy Ria Hi Leisha - I didn't have any endo removed... the doc told me trying to remove it would have chanced damage to my organs (bladder, ureter, bowel, etc.). Most patients have great recoveries with less pain than before surgery. I should not be having this pain at 10 wks. I have a feeling it is due to the adhesions. He did lysis some of them to free up some organs, but there was a lot. Did your doc cut out your endo? It sounds like you still have some. I'm glad the OTC drugs help you, Percocet barely takes the edge off mine. It's a bummer because I was in so much pain before surgery that I was sooooo hopeful this would be the answer and I could get back to my very active lifestyle. I will give his suggestion of no estrogen a try and see what happens... thanks for your post! Hang in there!!

Witchy Ria,

I hope you feel better soon! At 7 wks I am also having tenderness where I believe some of my endo was...but nothing like you describe...

Hello fellow sisters
I am a bit confused here - I have had endo for 7 years and had my (hopefully final) surgery almost 4 weeks ago. My Dr removed "everything" - we had hoped he could save the ovaries but once he was in there he knew he couldn't. I do not see him for my post-op until next week, but he told me in the hospital that it was one of the worst cases he has seen (no idea what stage, but he is an endo specialist). He also told me he would not put me on anything yet for fear he was not able to get the entire last piece of one of the ovaries (it was attached to one of my ureters). He said he will order blood work when I see him at my post-op to determine if he was able to get the entire ovary - if so he can put me on something, if not, we will need to discuss my options because he said endo the 2nd time around is 100% worse than the 1st time. But from what I am reading here, many of you are on something already, even with some endo remaining - guess that's where my confusion comes from.
Also, I should add that (PLEASE, don't let me be jinxing myself!!) I have not had too bad of the hot flashes / night sweats yet, at 4 weeks out).

Witchy Ria- My doctor lasered all of the endo that I had. He said that he burnt it as deep as he could go, but there is never any guarentee that he removed it all. If there was any left, I'm sure the estrogen I'm on is making it grow. Hopefully the pain I'm feeling is just everything healing. I hope that stoping you HRT will help you feel better. Hang in there! Hope your better soon!

Leisha