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All Endo, PCOS, Adeno, Hysto's, Pelvic Pain this is the link to our new Exchange. It will take some time to get everything re-entered...but WELCOME ALL!!!
New here and looking for advice
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MaryPooh posted:
I've been having problems for at least 8 years and my Dr never seemed to take it seriously. I had a lump in my uterus and she would feel it and say she could feel something and said it was a nerve trapped in scar tissue. Then send me for a pelvic US and they wouldn't even check the area that the lump was at so it was pointless. I finally asked my family Dr about, and she sent me to a general surgeon and he ordered an MRI and it showed i had an endometrioma which he removed. I went and did research and found that meant I had endometriosis. The pain came back after less than a year, so I've been having severe pain during my period for 2 years now. I can feel the lump in the same place again, plus I am having pain on my left side and pelvic area. I have bad back pain during my period, which comes every 3 weeks now so I am really not getting relief from the pain at all. I decided to go back to the first Dr that told me it was a nerve trapped in scar tissue. I had to see an associate of hers the first visit but the Dr came in because they felt something in my cervix, and it was a piece of stitch I had in my cervix that was supposed to be taken out 9 years ago but they mistakenly left a piece in. Well, the Dr told me to go back to see her and we would discuss drastic measures to get rid of my pain. Finally I thought. I went to see her and she wants to put me on BCP but I'm not comfortable with that. I've been on them 2x and bled constant both times. I told her this and she said my body might do well. Then she gave me info on lupron & in the info it says BCP are not used for endo. Also did research on lupron and found that alot of people get worse with the first couple shots. After being in pain so long, I don't want to get worse. I am 44, and I am in peri menopause, and had really hoped she would just do a hysterectomy which I assumed to be drastic. Does any one have any info/advice/support? I'd love to hear what has worked, what hasn't worked. Thanks for any help you can give.
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brandib01 responded:
am sorry to hear about your problems.
the upside is you have taken the first step and are actively trying to help yourself.
the problem is most doctors are not familiar with endo. my ob flat out told me they spend 1 section maybe a class or tow out of their whole schooling on it so it is almost a fly by section.
i would search out a different doctor i do not know what area uyou live in and you mayneed to travel but there are a few specialists out there. also although i know you are probably not looking to have children going to see a reproductive endocronoligist is always a good move as endo is linked to infertitlity they always have more knowledge on it.
and BCP's are used to help control endo there is no "cure" for it so not even lupron will do that all are measures to keep it under control some women have relief for years some a few months. and i understand about the BCP's and it can be a trial and error with them i have found two that just make me bleed like crazy and so i have to make sure to steer clear of those. i suggest lupron as a last measure and only with a doctor who is very familiar with it. it does have side effect since it is a form of chemo. some women like with all medications do experience long term side effect from it. i did 2 rounds of it and found out i was pg and never took the third and i have not had an issue since other than the endo came back after having my son.
also please remember a hysto will not fix it. unless they took everything meaning ovaries uterus cervix then the endo still has hormones to feed off and there are sooooo many women who have it done being told it will "fix" it then have issues later and the doctors dont believe them then either becuase the doctors are misinformed.
since you say you are close to menopause the decision is yours. i would first and foremost find another doctor. then work oon a treatment plan with them. BCP's are the least invasive to try. if you find they are not any good for you which should be apparent right away call your doctor and have them changed. some women cannot handle the higher hormones which is why there are a few out there that are lo dosage pills.
then my doctor will not do lupron unless it os after a lap surgery to ensure the best possible chance and he always Rx medication for the side effects andonly do the 1 month shots do not accept the 3 month shots because everyones body absorbs differently so it may wear off too soon or not soon enough and the 1 month gives you the option to discontinue treatment.
Brandi 28dx'ed.endo lap 09'


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