kidney Pain

[Warriorspoonie]

What’s others thought on Kidney Pain linked to Endo, It occurring more regularly now. I used to call it my side back pain, which I never had until I was put on HRT for PMDD, I never reacted well mentally to Oestrogen, but then I also learned the Oestrogen makes Endo grow, this was pre diagnosis. I believe I have been carrying Endo since I was a teen as it’s so obvious when I look back through my medical records. I’m now 44, that’s a lot of time to spread to other parts of my body. My Gynae want me to have a hysterectomy, I also have Adenomyosis. The thing is I know a hysterectomy I’ll not cure Endo higher up my body. I think his ego thinks he can fix me with this op, I don’t believe so, I also have many other health problems that I’m scared will be further exasperated. Any advice on a UK (London and surrounding) that understand Endo in the Kidneys. The pain is really getting to me. I can barely look after my children. I’m a single mamma

[EndoSuckss]

In respect of the adeno, the hysterectomy will help! However, you're right that it won't sort the endo! Your consultant will have to excise all the endo alongside the hysterectomy for you to get relief xx

[Princesspeach84]

Sorry to hear that you are in so much pain. I would look into endo specialists in your area. You may have to pay private for initial consultation as I did but it was worth it, I was then put back into NHS and was fast tracked as my endo is in a tricky spot. A lot of gynaes are useless when it comes to endo. It is possible to have endo on kidneys and it’s important you get it treated as soon as possible as it’s a bad place to have it. Good luck and I hope you get sorted soon x

[My_adventures]

Hey

Your comment "his ego thinks he can fix me" made me laugh.

I couldn't agree more!!

I don't have experience of this necessarily but I have two large endometrial cysts that have caused kissing ovaries and been put on zoladex as the size and weight are killing my right kidney apparently. I didn't know at all.

Apparently it's really common.

Push to see a endo specialist, it was kind of life changing for me but I'm in the north - I have to travel 2.5 hours to see mine as well. I'm currently waiting for robotic surgery.

Also someone suggested on here Nancy nook on FB there is loads of info on there - don't ask questions mind it's a bit militant. But good for info - if you have the time to read it all.

Also a single parent so if you ever want to vent please message me. This disease is lonely.

Take care

Abby

[Fipp]

Dear warrior spoonie I had to reply just because you are spoonie! Which many people call me fondly- though having said that - where are they when I need them!! I’m so sorry for your experience- I can relate. I have adenomyosis finally diagnosed and still suspect endo but no lap as yet. I have kidney pain/ bladder irritation often . I feel bruised all down my left side often,back, shoulders, under my rib. I’ve had maybe 12-16 years of this and have only just been diagnosed with adenomyosis after years of being fobbed off! I finally have a face to face appointment with endo specialist next week but from calls I’ve had this year and contradicted test results( said mri was negative- then months later after transvag scan found adenomyosis - then said it was on mri too!) shocking really that I have been left with chocolate cyst ruptured new cyst and told different things by gynaecology. Am so small in my life now as pain most days. I hear you re hysterectomy fear and still being in pain with endo. I’m not even sure if my pain is bad enough for a hysterectomy and often still feel hysterical with the way I’ve been made to feel by docs and others. I don’t have any advice as I’m struggling to know for myself but just wanted to acknowledge . I feel pretty low and lost with all this last week wondering if it will always just be like this as I’ve never even been offered hormones or coil or pain killers! Also am so confused re adenomyosis not getting any press really on endo forums. I just do not understand when it is the same embryonic tissue how they separate it all out as different when one can easily join up with another. Even on the endo uk site the gynaecology video re both the doc states it’s hard to know where one ends and one begins. I wish you well warrior spoonie and us all. X Hoping soon that this disease will have a test developed so that we can all have less procedures, waiting times for treatment and support to get well. I often feel sad joining up the dots of the past pain and how I soldiered on through so much pain and was told it was my mental health, what I eat and triggered ibs and other. Now many of my symptoms blamed on fibromyalgia- yet they feel more like kidney, endo, cyclical tight chest. Grrrr .