LPHS and Endometriosis

Yesterday I was diagnosed with LPHS as a 28 year old female. In 2007 I was also diagnosed with endometriosis and have since had 4 surgeries to remove nerves and the endometriosis that has grown rapid in the right side of my body. I always had kidney pain, on the right side, that I just figured was pain that radiated due to the endo. However, after having had another surgery in October, I ended up back in the hospital with severe kidney pain. Again no stones or signs of a UTI, so the easy answer for my doctors was to blame the endo, put me on meds and send me home. This time the pain has gotten worse and even the medications are useless. I just got back to work from having been on leave and I was in tears yesterday from all the pain in my back. I finally went back to my primary doctor who also specializes in neuphrology and due to my urine cultures and symptoms was diagnosed with LPHS. My question to him was, what do I do? The look on his face was very alarming as there isn’t much to be done. He knew of some patients that were placed on ACE inhibiters but my blood pressure is super low so I’m not eligible for such option. I’m looking for guidance as I want to know if anyone else has the combination of LPHS and Endometriosis (Stage 4). Also, suggestions on what to do and how to make my quality of life better. I’ve been on narcotics before for the severe endo pain and I really don’t want to go down that same road. I feel as though my pain reacts to nothing, so why bother being on something when I’m going to be in pain anyways. I’m also scared that since I’ve been in the hospital so many times I may be labeled a “drug seeker” as when I enter the first thing they do is give me dialudid through the iv to try and take the edge off, which is prob the only thing that helps but I can’t live on that! AND the iv works but when I took the meds, it helped very little and keep in mind this is extremely heavy narcotics. I’ve also gained 40 lbs in the last year, I was very skinny to begin with, but both diseases have made me feel self concious and I barely eat because I’m so very nauseated. I feel I’m way too young to give up. I’ve dealt with the endo and will deal with this just as well. I’m just at a loss on what to do next, some said (including my doctor) a possible kidney biopsy, pain management, accupuncture, excersie but I’m just exhausted and don’t know how to handle all of this. HELP!

Warm Regards,

2 thoughts on “LPHS and Endometriosis”

  1. I also have battled endometriosis, and had a hysterectomy for the adenomyosis in July 2012. I had 6 wonderful months until I started having LPHS symptoms (that could no longer be attributed to my endo/adeno, which was also stage 4). We’re wondering how much of my endo/adeno were actually LPHS (I had some urinary bleeding and lower back pain prior to my hysterectomy), and how much was LPHS written off as endo. If you’d like to “chat” let me know 😀 I’m on some amazing treatments (thanks to an amazing medical team that was willing to try meds off-label). I’d love to discuss these with you 🙂

  2. I too suffer from endometriosis :(( and I’ve had kidney stones a few times as well which one of the times the ingestion had went thru out my whole system and was very very sick inamsoutof hospital !!!Thats the only time I’ve been in hospital for myself!!!I have Cronic pain every single day from beck Spurs and sciatica ,my back l4-l5 are jacked up lover back :(( so I know pain and it’s horrible ? That they figure out meds and take pain away and to bring comfort thru daily dealings !!!

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