Brain/kidneys

[mimilover]

Has anyone noticed weird pain / weird/numb/etc in back of your brain? On the Internet I was floored when I read where endo spreads and effects ….:it includes back of brain. 30 years ago I spent 1,200 cash (American ) plus whatever my insurance charged to have an MRI. It came back normal. A friend came with me when I was going to get my results in case it was brain cancer. I asked the BRAIN specialist several times until he got irritated and said “nothing is wrong …..:it’s stress and emotional “. And that was that. About 33 years ago. I still get this 33 years later but it’s tolerable . Also I’ve shared here many times that when I finally went off estradiol (estrogen) all my colon, pelvic,everywhere area of my stomach went away. The only thing left is my back and kidney area. Due to this site and a good dr I’ve recently found (the one who was horrified my endometriosis was being fed by estradiol no matter what age)……..so I dumped the rest of mine in the toilet……she has ordered all tests and a couple days ago I had an mri of kidney area where you get the dye and go in the tube ……..I get results in a week with this dr ……..endometriosis is hard to detect and she doesn’t think it’s in kidney area ……but the way I looked at her and told her about this site which includes doctors with endometriosis (that really gets drs to listen to you apparently) and she knows I had it at 62 (now almost 65)……I’m having every test possible. But the good news is all other pain is gone.

I know that most of you are in 20’s and 30’s and are trying to keep your uterus …..it’s very possible. I remember my dr 40 years ago saying you’ll have to remove your uterus or get pregnant. I didn’t want to get pregnant. I didn’t want kids. So I chose removing it. Damn. (I ended up foster |adopting two daughters (siblings) . But my uterus was removed at age 26.

There have been many changes since then. If you go to someone who gets it and knows endometriosis and takes it seriously…….they can watch you thru out your pregnancy. This is what my Dr is saying . I’m feeling so bad reading all the same stories …….especially the suicide one. I too had those thoughts many times . I was extremely defeated from so many Misdiagnosed visits to drs. Thru the years . I’ve shared here I know ..::: many times…..that I’m so angry!!! Never told about ROOTS. Ggggrrrrrr. I had NO IDEA my continued pain was from estrogen (estradiol!!!!). I must and I think have…..forgive all doctors . They didn’t know . That brain dr had know idea about endometriosis obviously. Neither did all of the chiropractors, colonoscopy doctors, etc………but really what upsets me the most is that I went back to my surgeon (she was my regular gynecologist) several times regarding estrogen and she got irritated with me . She said I needed it . All I was doing was saying I had pelvic pain especially when I drank coffee and all she said was “well they’re you go”. She retired many years ago . Actually a few months after my surgery with her when I was 39. Dum dum didn’t give me either 1) correct , 2) any, 3)WRONG info . The worst is NOT TELLING ME ABOUT it growing back. I didn’t know why it grew back after my first surgery at 26. Until this dr at age 62.

Girls !!!! I am sharing this with you like I have several times…..I’m glad we have the knowledge it has roots and grows back WITH ESTRADIOL. At age 62 I had horrible hot flashes getting off of it but I’ll take that anyday over the stomach and pelvic and back intolerable pain ……..now two years later I’m just dealing with back/kidney area . And BEING TAKEN SERIOUSLY. This site really helped . And by telling her that IM ON THIS SITE REALLY HELPED.

Apparently there are estrogens that don’t affect endometriosis……..but at this point my Dr is saying no estrogen for me.

Welp now I’ve had everything you can have …….images, then ultra sounds, then MRI 3 days ago on Thursday for kidneys. I have a dr appt next week. She doesn’t think it’s endometriosis. But at least this site helped me get her to order all of these tests: if it all shows up normal (all of the pictures of kidneys with the dye )……..that’s all i can do. I also have arthritis now in my back and thumbS . And neck. I sound like such a hypochondriac. Ggggrrrrrr. I can’t afford justified anger . 🙄❤️

[jadenew]

Oh my, reading what you went through made me actually quite angry myself. So sorry you had to go through it. I am not a fan of most medical professionals neither. I guess many are just exhausted or in the business for the wrong reasons and finding those who care is nearly impossible.

What got me was one of your very last sentences "I sound like such a hypochondriac" - this is precisely how I feel. But I think that doctors often forget that we live with ourselves every minute of every damn day and we get to observe all the various symptoms at once. They only get to know what they ask us and rely on our interpretation. There should be more trust towards patients and listening to us.

I think my endo travelled somewhere where it's causing me seizures. I started having them around the time when I started getting heavy periods a few years ago - it happened around the same time. But apparently there are only +- 3 people on record with endo in the brain. I wonder if it's because it wasn't believed to be possible in the first place, so docs are not really looking. But I too feel like a hypochondriac - you can't help that! My last seizures left me a changed person and I am panicking whether I'll ever go back to who I was. I want to say all of these things to my GP but I can already hear her how dismissive she's going to be.

So glad I found this forum. Feels reassuring that I'm not in this alone and other people feel frustrated too - although I'd prefer it wasn't like that! Anyhow, I'm glad you got off estrogen and it's helping! Perhaps there is a proverbial light at the end of the tunnel. But trust me - I understand the frustration and it can not be underestimated.

[mimilover in reply to jadenew]

HiThank you for that reply.

You have seizures? Oh my gosh I wish I could go with you to your GP.. if she acts the LEAST bit irritated (I’ve had it with that) tell her “Do NOT act irritated with me . I won’t have it . I wouldn’t waste my time coming here . Your bedside manner is terrible. Maybe someday DOCTORS will validate and know more answers to what I have. I have been on a site where over 60,000 women including doctors who have it . Thank god I finally feel validated. I don’t feel validated with you acting irritated “.

[mimilover]

Hi Wow. You just validated a few things for me . I am being tested for all of that. My doctor does not think it’s endo in my kidney but I’m not stopping until we know what it is. They don’t ache always now . Also I wear a tens machine . Look them up . They’re life savers.

I can’t believe you too……had an MRI on your brain. This made me think . Hum…..gosh there’s a reason we did this . I’m so sorry about your migraines.

And everything.

❤️