Tag Archives: Endometriosis

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,

LPHS – new posts

from Lauren ([email protected])
Overwhelmed at 17.

I think talking to people that have pain just like I do and understand the way I’m feeling will empower me. I was just diagnosed with LPHS in October after about a 1 and a 1/2 of not knowing what was happening. Kidney stones were what started the process off and I had several procedures for that and some spinal injections to try to alleviate the pain but it didn’t work….

from Melissa ([email protected])

I just got diagnosed with this year. Ive had problems for over 10 years during which time I was seeing a urologist. He referred me to the nephrologist who gave me this diagnosis. He didnt offer up any hope just pain meds.

from Sherry R-V
Answers to my questions…do you have any?

I was diagnosed almost 2 months ago. I’m 58, but now have realized that I have had this disease for many many years. I can’t count how many doctors have told me “there’s nothing I can do for you.” Or MY ABSOLUTE FAVORITE “Maybe you should seek some phychiatric help.” Knowing now that I actually have something wrong with me is a relief, but for it to be a rare kidney disease, only confuses me more.

from Kat
Overwhelmed and in need of advice

Hi, my name is Kat. I’m 34 and was diagnosed with LPHS a couple months ago after a biopsy revealed thin basement membranes — and seemingly every other test known to medical science showed nothing more telling than “hey, there’s lots of blood and stuff in your urine.”…

from kiki ([email protected])
23 years old and uncurable

…please watch out for sick people who pretend to be in pain but there are only giving false hope ! please i dont want anyone to be given hope when its not there!…


– Dorene

Endometriosis – Getting the word out.

What is Endometriosis?

Endometriosis is a painful, chronic disease that affects 5 1/2 million women and girls in the USA and Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus — usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.

This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation — and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.

What are the Symptoms of Endometriosis?

Pain before and during periods

Pain with sex



Painful urination during periods

Painful bowel movements during periods

Other Gastrointestinal upsets such as diarrhea, constipation, nausea.
In addition, many women with endometriosis suffer from:


Chemical sensitivities

Frequent yeast infections
Diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices. What Causes Endometriosis?

The cause of endometriosis is unknown. The retrograde menstruation theory (transtubal migration theory) suggests that during menstruation some of the menstrual tissue backs up through the fallopian tubes, implants in the abdomen, and grows. Some experts believe that all women experience some menstrual tissue backup and that an immune system problem or a hormonal problem allows this tissue to grow in the women who develop endometriosis.

Another theory suggests that endometrial tissue is distributed from the uterus to other parts of the body through the lymph system or through the blood system. A genetic theory suggests that it may be carried in the genes in certain families or that some families may have predisposing factors to endometriosis.

Surgical transplantation has also been cited in many cases where endometriosis is found in abdominal scars, although it has also been found in such scars when accidental implantation seems unlikely.

Another theory suggests that remnants of tissue from when the woman was an embryo may later develop into endometriosis, or that some adult tissues retain the ability they had in the embryo stage to transform reproductive tissue in certain circumstances.

Research by the Endometriosis Association revealed a startling link between dioxin (TCCD) exposure and the development of endometriosis. Dioxin is a toxic chemical byproduct of pesticide manufacturing, bleached pulp and paper products, and medical and municipal waste incineration. The EA discovered a colony of rhesus monkeys that had developed endometriosis after exposure to dioxin. 79% of the monkeys exposed to dioxin developed endometriosis, and, in addition, the more dioxin exposure, the more severe the endo.

Endometriosis Association
8585 N. 76th Place
Milwaukee, WI 53223 USA
phone 414.355.2200
fax 414.355.6065
©2005 Endometriosis Association
All rights reserved.