Hello! I've read that women with endo have a higher chance of developing lupus. Is this true? I was diagnosed with endo at 15. I'm 23 now and being checked for lupus/rhum. Arthritis. I'm just looking for info. Thanks!
I have never heard of the combination of the two ever. I was diagnosed with endometriosis about 10 years ago and then diagnosed with lupus sle on may 11, 2005. I know nothing about the two being related, sure would be great to find out more! How are you doing? Now, were you diagnosed with lupus or just concerned? Can't wait to hear from you, gena
I'm 25 and i've had endo for about 10 years. Recently my endo has become severe and i'm facing infertility so my partner and I are trying for our family now.
Then I got a letter from the doctor to say after 2 negative tests, i've finally tested positive for lupus. I get aching feet, sometimes sore wrists, sensitivity to light, and of course the rash.
Not very pretty for a flight attendant...
Would be great to hear other experiences, particularly those of pregnancy with endo and lupus.
I have had endometriosis for as long as I have had my period. I have always had horrible, painful periods. I have even had lesions removed from my fingers and back. When I was 20 they told me that I would probably never be able to have kids. However, my husband and I were surprised by our first of three children when I was 24. During all three pregnancies my endometriosis went into remission, but during my first pregnancy I became really sick with other symptoms that seemed to get worse after I had my daughter and with each subsequent pregnancy.
It started with swollen joints, aches and pains, constant infections such as recurring step throat and pleurisy. I seemed to come down with every bug in the world and I would be wiped out for weeks at a time. I was finally diagnosed with lupus and mixed connective tissue disease last fall. I have been doing a lot of reading about all three conditions and it appears that there is a lot of evidence that they are related. Ironically, the only thing that has offered me any relief from the endometriosis was my pregnancies, and my first one is what most likely brought about the lupus. They say it lays dormant in your system and stressfull physical conditions can bring it out such as pregnancy. That is why so many wonen in our age group are diagnosed with it.
There is one more thing you should know if you are thinking about becoming pregnant while you have lupus. It can be transferred to the baby. My second daughter was born with neonatal lupus. It isn't the same thing as lupus sle and most children out grow it by the age of 2, but it causes rashes and scary high fevers at about 3 weeks. Since they did know I had lupus at the time they had know idea what was wrong with my daughter. She had to have a spinal tap on her 3 week birthday. I was never so scared in my life. She is three now and continues to get her fevers and rashes. She has had a seizure and developed a heart murmur from the fevers.
They are having problems treating my lupus now because I get so sick with the endometriosis, so I am going to have a hysterectomy. At least then I will only have the one thing to deal with. I am sick so often that I feel like a bad mother and wife. I feel like it has taken over my life.
I don't know if this will help anyone. I hope it does. There is a ton of information out there on the internet. Make sure you check it out.
Interesting. I am 28 years old and was diagnosed with lupus at the age of 26. I too had arthritis, skin involvement,leukopenia,severe fatigue,and severe anxiety/depression/insomnia. My rheumatologist told me the anxiety/depression was not caused by lupus but maybe became expressed because physically I was so exhausted. Anyway, I have had difficulty becoming pregnant and am having diagnostic laparoscopy this week to evaluate for endometriosis. All the symptoms certainly fit and since diagnosis with lupus my symptoms have seemed to progress. I would like to hear more about other women with this presentation.
I was diagnosed with endo in 2006 had a complete hysterectomy 2007. I've not been pain free ever. I'm now being tested for Lupus as I have a positive ANA 1:640 w/speckled pattern. Because the docs can't find another normal lupus antibody like ss-a, ss-b,etc. they've tossed out lupus as a diagnosis. I have livedo reticularis all over,a light rash on my face,constant pain in my back, hips, legs, feet. Arms hand and facial pain. I'm unable to sit or stand longer than 15 minutes without increasing pain. It's horrable!!! I would be interested in which sub-tests done on you to signify lupus as a definitive diagnosis cuz my physicians are having a tough time.
While I'm still not 100% diagnosed with Lupus or Endo, I'm sure I have both. My ANA's have come back positive quite a few times, I do really well with prednisone (except for the weight gain).
However, I've been trying the new birth control that allows 4 periods a year. I just got my first period in 3 months and I feel horrible! I feel like I'm in a flare but there are other things like nausea and I'm soooo tired. I think that there is definately a link between the two diseases! I've been feeling great for the past 3 months with the birth control and have managed to lower my prednisone.. we'll see what the future of lupus/endometriosis brings...
Hi, I'm 50, was diagnosed with Lupus in '86, but is was disregarded as I had a negative T-cell (RA) that I know was false because my mom had a false negative for the
RA that showed on her x-rays. I was in constant, agonizing pain for almost 20 years until a caring WOMAN doctor finally diagnosed my ENDO. Nothing helped, and a coupls of years later, I had to have a hysterectomy. Dr. Ballard said it was the most agressive she had seen; my left ovary was adhered to my spinal column by endometrial tissue. At the same time, the lupus symptoms have never gone away. Lately, I've been having some of the old ENDO pain again. I don't have health insurance anymore, so I'll just have to deal. The one good thing to come out of this is knowing that my pain is not imaginary, it has a name. I also know that stress is a lit fuse to both conditions, and I can help myself by hiding out in my room. If anyone ever does a study on the link, I would like to participate.
Wow, I also have endometriosis and a lot of symptoms of lupus. The doctors were sure I had it, but my test came back negative. I have been suffering with endo since 12 years old. I am like other the only relief is when I was pregnant or breastfeeding because I did not have periods. I was able to get pregnant after induced menopause at 21. Had a healthy baby, but three weeks after I swelled up and could not get out of bed for 2 months besides too nurse my baby while in agenizing pain. The pain killed me to move my fingers. Now they think it was a flare of lupus. My doctor said they will diagnose me by symptoms. Anyone else diagnosed with lupus by symptoms?
I had the same problems as many w/ several (but not all) symptoms of SLE; my rheumatologists locally are not aggressive. I was NOT wanting a specific diagnosis, but a confirmation that I was not crazy, and that there was something "not right." My labs were mostly normal except ANA 1:5,460 H (yes that's over 5,000!), wbc 3,200 L, and complements were both borderline low. My symptoms were profound, but the rheumys sent me back to endocrinology (history of Hashimoto's Thyroiditis, stable 10yrs).
Finally I traveled 8 hrs for a consult in Pittsburgh; I went to the Lupus Center of Excellence. I figured they have seen enough cases of SLE they can tell me if I am on the correct diagnostic path, or not. I now go for annual check-ups, and after two visits was diagnosed w/ SLE. I also made it clear that I didn't really want a diagnosis, just some help.
Physicians in general do not like rheumatological cases. They are complicated (often impossible to fix the problems with a pill) and require a lot of time. This makes them higher risk from a liability standpoint, and they take a lot of time. If your physician is already not interested in your case then you need to look elsewhere since it will likely get more complicated the more problems you have. I think initially it is more complex, and after you have an established GP/internist then it is easier since you have an ally.
If you have symptoms impacting everyday living AND physical signs (ones which the doc can observe) w/ ANA over 1:1280 w/o any other positive lab results see Dr. Koumpouras in Pittsburgh. He is extremely kind, and will give you an hour-long+ thorough consultation. He will also order extensive testing and refer as needed to confirm or rule-out other conditions autoimmune or otherwise. This is an aspect no one else was willing to offer; the other 2 rheumys said, "Your DS DNA is negative, it can't be lupus."
I am a 21yr old who is so tired of feeling sick and not having any answers. For as long as I can remember I haven't felt well. When I was only 13 I started to have extremely severe pain on my periods along with a heavy flow and horrible cramps that would cause pain throughout all of my abdomen and even into my legs/thighs. I went from doctor to doctor trying to figure out what was wrong, but no tests revealed anything. I have major headaches and migraines that started at this age and have continued without relief from medication, lifestyle changes, exercise, etc On average I get at least one migraine a day. I started to develop serious pain during urination and around the kidneys. This would happen on and off until a Womens health doctor decided it was probably most likely attributed to endometriosis.
Because I was so young (at this point 15) I wasn't allowed to have lapro to check it out. So I simply went to birth control that lasted for three months at a time, which was often immediately followed by another treatment so I would go without a period for six months at a time. Then I started my treatments in lupron, depro, etc which mimicked menopause (not super fun when going to prom, etc) but better than the severe pain from my menstrual cycles. Eventually after a few years of these types of treatments I switched back to six month bc pills and finally back to monthly birth control. I was tired of the excess weight gain and swelling which seemed to be caused by the treatments, and was in really good shape (with religious exercise schedules, dieting) and my wedding was coming up.
As luck would have it I started to have horrible break through bleeding which started two weeks before my wedding and lasted through the honeymoon (awesome...). I was having issues with my stomach too, along with the typical migraines and mild diarrhea. I tried to ignore it as much as possible because of my lack of insurance and frustration with feeling like no one believed I was in as much pain as I felt I was.
In October I went to the dentist who said that I was doing an excellent job cleaning my teeth, but something was wearing them down such as extreme acid reflex. Since I was a kid I avoided acidic foods because they seemed to bother me but I had no idea that it was serious enough to cause the damage to my throat and teeth.
I went to a nurse practitioner who prescribed me large dosages of prilosec. This didn't ease the acid which continued to still bother me and I noticed would burn my throat. I also had break through bleeding which wasn't going away but was minimal enough to deal with. In february I went on a trip and started to have extreme pain in my lower left abdomen. This was also followed by diarrhea that started suddenly but continued for a very long time (from feb-august). When I went to the doctor she suggested I go completely off dairy (have been lactose intolerant since I was 13, but would on very rare occasions use dietary supplements) as well as all gluten, sugar, greasy fats, and red meats, as well as caffeine & alcohol.
My pain spread from only being on the left lower quadrant to my right quadrant too. This was followed by a new problem that I had horrible pain when I would eat anything. Eventually this pain changed in to upper right quadrant pain which was stabbing and would radiate to my back. I had ultra sounds which came out inconclusive (except for an enlarged liver) and were extremely excruciating when I had to fill my bladder for the tests. I started to hurt so much when I ate, and really dreaded the diarrhea which was constant. I began to lose weight and went from 135lbs to lower than 110 in a matter of only a few weeks. I visibly looked like a skeleton, was extremely weak and fatigued. My joined began to ache, headaches got worse, but the worst part was that nearly all my tests were negative or said nothing. I had a Hida scan which showed my gallbladder was only 17% functioning and nearly didn't make it for the length of the test.
I had every blood work, stool tests, urine lab, ct scan possible which didn't reveal anything. I had a colonoscopy and endoscopy which showed nothing either. Even though my painwas so bad my husband made me force myself to eat so I did start to gain back some weight. In June I had what I think was a gallbladder attack but wouldn't go to the hospital because of no insurance and absolutely no faith left in doctors. During this time I had a fever, was vomiting uncontrollably for over 24 hours, including even when my stomach was well over empty and drinking water would only cause the vomiting to start over.
I would like to also point out that I stopped taking acid reflux medication because I could barely eat, let alone take pills. After this attack occurred I could no longer stand not having insurance so I applied for every type of medical assistance known to man. The doctors from my endo/colonoscopy felt that I should have my gallbladder removed, but once I changed on to OHSU medical programs the general practitioner was not convinced. After all I was now back up to 119 lbs so I was apparently "perfectly healthy." he ran a few tests which I guess didn't convince him of a serious condition and threw out the ideas of the tests before. My joints still ached, my pain was spreading up to my upper left abdomen as well, making it a large torso of pain, and seemed to bother my heart and lungs for some reason?
Endometriosis has repeatedly been thrown out as a cause, but he concluded ibs. When I explained that they are often mistaken for each other he was sone listening to me, so he prescribed me amitryptilene. Unfortunately I had already been on this medicine for migraine control for some time, but he was convinced it would help my pain. He also started me on Zantac and Seasonique.
After a few weeks my diarrhea stopped but now it turned in to extreme constipation where i wouldn't have a movement for over a week at least. I developed this new problem which started to really scare me. Entire portions of my body would go numb (mostly hands and feet), would feel like they had no blood flow and would turn purple or blue colors. I went back to this doctor who told me that I had too many symptoms to treat and since I was still able to work that I was perfectly fine. I wanted to say "I've been dealing with pain my whole life because of irresponsible doctors like you" but I held myself back and resolved to consider the fact that maybe I actually am crazy. My fatigue at this point was so bad that every second I had off I would sleep. Oh that's another situation, after I eat I become so overwhelmingly drowned that I basically pass out until I should eat again and the cycle continues. If given a chance I literally will sleep at all times and seriously envy bears in their ability to hibernate.
My pain was terrible and now I was constipated, too. My acid reflux was so terrible that I could barely stand it so I had to take tums even though I was positive it was making the situation worse. I went back to this doctor who told me that he would only write a prescription for more anxiety types of medicine like amitritypline (one day I'll be able to spell that word...). Frustrated and angry I canceled the next appointment I had with this doctor and felt that the best idea was to wait for my gastro appointment. When I went to this doctor he basically told me that he was reversing all the problems caused by my doctor before since he was prescribing all the wrong medication which caused my constipation absolutely.
This doctor decided to put me back on to prilosec since it shouldn't cause constipation and was a much more effective form of acid reduction. Well of course I knew what it was since I took it for many months but now my symptoms if diarrhea have come back. I am beginning to lose weight again and am starting to resent food all together. I'm so tired that I feel like a walking, famished zombie and the stabbing lain as well as atrocious migraines have more than consumed me. I don't know what to do or where to go from here. I had never though of lupus as being a possibility but some of the symptoms that are associated with the disease I have been living with without realizing they were serious or not knowing their cause. I've had red skin on my face since I was 13. It was acne at first but the redness is so obviously nit from acne at this point. Mostly it's free from raised infectious type issues but is extremely sensitive from sunlight. My eyes have been really starting to bother me and I worry about my vision which used to be extremely good. I get the red issues on my scalp at times and very noticeably on my chest (the areas exposed to sun). My joints and muscles have been hurting for some time now, and the headaches are still over bearing. I dont like to complain about all my issues because I honestly can explain them all before the doctor gets annoyed or thinks I'm a hypochondriac (who knows, at this point I don't think I can rule it out either). I use to exercise and function even through my pain but the last time I tried I blacked out while on a tread mill. I am considering lupus to be a potential cause for maybe some of my symptoms, still am pretty convinced about the endo, and am curious what might be going on with my gallbladder and liver. I didn't write this to complain but to hope that maybe there is someone else out there in a similar medical limbo.
Any advice would be greatly appreciated, and thank you for your willingness to get through this novel of a post. I've tried acupuncture/eastern medicine, enzymes like pro biotics, went to many types of doctors, two who were gastros, and have checked for things like hpylori, hepatitis virus, celiac disease, stds (however lifestyle really limits this as a probability already) thyroid problems, etc but I can't be sure of the validity of the tests, or which exactly were done for blood, urine and stool tests. When I was 19 also was found to have mono which supposedly went on for a few years and took a while to recover from (but never took tests after to see if I over came it. This is sometimes relevant to certain medical conditions such as gallbladder issues.
Please let me know what you think, or if it's just too frustrating to read I can delete the comment . Thanks for any input! - The Overly Frustrated Patient.
Omg I know this post is very old but if you still read this please post back as I really think we should chat ... I read your story and it was to a large extent like reading my autobiography!! I hope this message finds its way to you in good health keep well and I will keep checking this forum as I finally feel Like I am no longer alone in this terrible trap of pain and unsupportive doctors ... Do not worry .. You are not crazy as I am not.. Infact they are.. If these Doctors expect us to just grin and bear the pain and some how function within normally society without their understanding, care or true support!! Stay strong and keep smiling .. It's the only thing that has kept me going all these years!! with love and care x
Wamber, I have been definitely diagnosed with both Lupus (by +ve ANA and symptomology, no anti-DNA present) by a Rheumatologist and also with Endometriosis (incidental finding during emergency Apendicectomy) . Your post is my symptom history, my story. I have gained control of symptoms and pain of Lupus on 300mg Plaquenil, 3gm Fish Oil and 150mg Co-enzyme Q10 daily.
Now dealing with the Endo issues. Trying the Endo dietary suggestions, planning another Lap' with some excision of the endo implants.
I am 49yo and they won't do a hysterectomy due to nearing of menopause and bowel adhesions.
Actually things have gotten pretty strange for me . I was going to a doctor at OHSU who diagnosed me with somatinization (basically saying it was all in my head). Not that I don't realize this is a true disorder, but my symptoms were increasing substantially and I was starting to have dizzy spells with extreme vomiting. My gastro was very concerned and said that I needed to be seen by my primary as soon as possible (since he was unavailable). When I went in to this doctor he literally told me that the only thing he could offer me was a psychiatrist. When I asked about being tested for lupus/autoimmune disorders he said "I can tell you right now, you don't have any symptoms" without inquiring at all what was wrong. He refused to refer me to a Womens health specialist because I was simply "complaining too much and if I didnt stop he would take my license away". While I know he can't legally do this I feel so alone and abused by the medical system this issue stems greatly from some hippa violations which I will hopefully be able to pursue legally after I can atleast a bit healthier.
I went to a specialist outside of my coverage who was equally concerned as my gastrologist was. He is convinced that much of my abdominal issues are caused from endometriosis adhesions due to family history, my own history and current circumstances. I'm schedules to have the lapro in a week from now, and I hope hope hope this is the answer. I'm starting to lose weight again, can barely eat more than a meal a day (a very small one...with digestive enzymes...and often can't finish it) and the pain pretty much dominates my life. I'm having a really hard time trusting medical professionals after such blatant mistreatment, but the doctor specializes directly in this condition and I have confidence he will make sure that I get the care I need. He luckily knows a good deal about lupus and fibromyalgia so I think that if I continue to exhibit signs we will seriously investigate those possibilities after my surgery. Thanks for the imput, I'll update after my proceedure!
One note that is interesting: Endometriosis is sometimes regarded as an autoimmune disorder. You're more likely to have one autoimmune disorder if you have a different one, very generally speaking. According to my doc, they tend to cluster. For instance, you could have lupus and celiac, and it's not at all uncommon for people with RA to also have lupus or lupus-like flares, especially in cases of JRA. So *if* endometriosis is autoimmune (which is not agreed upon by all medical professionals as far as I understand) it would make sense that there would be some link between it and lupus. However, that doesn't mean that every woman with endometriosis should worry about Lupus, or everyone with an autoimmune disorder has to worry about every other autoimmune disorder creeping up on them. I have to remind myself of that a lot. I have what my rheumatologist calls "concerning signs of early lupus" and I've been in the process of getting that checked out, plus now my primary care doc says I probably have endometriosis (she would know, she has it herself) so I have an appointment to deal with that soon. On the bright side, being a medical mystery has taught me a lot.
I can relate to all of your postings. I am amazed to meet so many women with Lupus and endometriosis.I was diagnosed with endo at the age of 15 because of heavy painful periods. When I was 17, I had a laproscopy to see why I was hurting so bad. Once we knew what it was, we treated it with Lupron and birth control pills and a few more laproscopies. Once my husband (I met him when I just turned 17 and was having all these problems) and I got married, we tried for a few months w/o success. My doctor open my fallopian tubes (very painful) the started me on fertility drugs. Finally after 6 months, we took a break. The medicines and the break finaly worked. We had our first duaghter in 1995. We did not prevent pregnancy b/c I started hurting again. Even w/ breastfeeding and no periods. I go pregnant fast. My girls are 15 months apart. I had a scary difficult pregancy...so scary we tied my tubes to be sure I did not get pregnant again. in 1997, I had a partial hystercotmy (just the uterous). As for the endometriosis, I was pain free for 14 years.
I was diagnosed with Systemic Lupus in 1998. It's been a struggle, but I finally have a set of good doctors. Along with my medical dotors, I have an aryuvedic ractioner. She has made y life more liveable and comfortable. I follow a diet protocol and take supplements. Now my flares usually last 1-2 days where I can't get out of bed,but nothing so serious anymore.
I decided to go back to school for another masters degree. I have the desire to teach middle school math. I just started this tremendous program. My life is taking a new direction..SO I thought. Now, my endometriosis is back to haunt me. My right ovary is full of endomertosis a my left has a growth on it. I am waiting until the semester end to have surgery since my doctor cautioned me that I would have major surgery because of the severity of my disease. I don't mind losing one ovary, but 2 makes me sad. And on top of it all, recovery will take up to 8 weeks before I can sit for a class. It just totally screwed up my education plan. On the upside, I am still better of than 1/2 the world"s population...I live in a free country where we have the right to take charge of our health management, we have food on the table, we have a plethora of options for clothing, dining, entertainment, etc. So while I am holding a pity party for one, I stop and realize ho lucky I really am. God has blessed me with the most amazing husband ever, the best daughters we could have, and amazing parents, sisters, and in-laws.
Surgery in May and I can't wait to see how bad my insides look,
I am convinced there is a connection between Endometriosis and Lupus and my heart goes out to all of you!
At the age of 15 I was getting abdominal pain on my right side. I remember one day it was so bad I couldn't move. My doctor thought it was appendicitis, but the tests were negative. My pain eased after a while and since no one had an explanation for it I just got on with life. Over the coming years I would only occasionally feel the pain, mostly during sexual intercourse.
About 18 months ago, at the age of 35, I started getting muscle aches in the hip and lower back as well as the old abdominal pain. My life went down hill from there and the roller coaster ride of constant pain, countless doctors visits, medical tests, frustration and depression began.
I had been quite fit at the time, doing a lot of running, but soon the pain got so bad that I had to stop exercising completely. I struggled walking and standing for any longer than 5 minutes at a time, even sitting was difficult. I saw a Chiropractor, Physio and Osteopath hoping they would be able to help me, but no luck. When I started getting fainting spells, I went to see a doctor who ordered every test under the sun to figure out what was wrong with me. One of my blood tests came back positive for Lupus SLE (ANA 1:2250) so I got referred to a Rheumatologist. All of this happened within a period of 12 months - very painful months, which nearly ruined my relationship.
Long story short - I started taking anti-inflammatory medication and doing physio therapy for my hip, which helped a little, but still didn't get rid of my lower back and abdominal pain. As a last resort I went to a Gynecologist who instantly suspected Endometriosis.
Last week, after 18 months of suffering, I had a laparoscopy and they found Endometriosis - a very severe case of it in fact. My left ovary was completely covered in tissue and there were a lot of lesions which were pulling my hip out of place. They were able to remove most of it. I am still recovering from the operation, but I'm already feeling like a new person. All my back, hip and abdominal pain has disappeared!
I really wanted to share my story, because I know how desperate most women are when they are browsing the internet and end up in this forum looking for answers - I was one of them. Keep smiling and keep posting!
Hello ladies, boy am I glad I found all of you. I was diagnosed, per lapro, with endometreosis when I was 14. I have had one other surgery and at that times I was told that both my fallopian tubes were closed with scar tissue and I was not going to have children, at least not the conventional way. Otherwise, I have just been on birth control for 14 years to control the spreading.
Last year I asked my OB if she would perform the Hysterosalpingography so that my husband and I would know without a doubt if we should even try for a baby with envitro being an option. It is a very painful test but after 8 years of thinking it was virtually impossible my fallopian tubes were fine and we were pregnant a month later. WOOHOO!!! We now have a beautiful little girl.
Since my 6 week check up intercourse has been the most painful things I have ever experienced. I was diagnosed with TMJ 3 weeks ago (no relief) and for the past 10 days I have had constant joint pain (hips, ankles, Achilles tendon, knees, ribs, neck, elbows). Last week I made an appointment with my primary doc and my OB. I saw my OB and she was expecting me to need estrogen cream for dryness and send me home. Oh did I mention my Endo pain has been the worst I have felt in years. She was very concerned by her findings. Intercourse is hurting because my pelvic bones are tender and my muscles are swollen. I told her about my other pains and of course her first thought is systemic inflammatory response. Me being a nurse I had already done research, mentioned Lupus, and she went ahead and ran a couple of tests to give my primary a head start. She will also be calling my primary tomorrow morning before my appointment to tell her about my findings. Needless to say she did not like what she was finding. I asked about my Endo pain, her response, if I am having an inflammatory response then my Endo pain is going to flare.
So tomorrow I go in and I am very prepared to have a Lupus work-up. I am also still having severe hair loss (my baby is 5 months old) so is that still hormones or something else. I am extremely tired, something I have experienced for years probably related to the Endo. My scalp is tender, weird. Shortness of breath, check.
What a thought that the two of them go hand in hand.
I want to say thank you to all of the women who took the time to share their stories so that we know we are not alone. I was diagnosed with lupus in 2002, fibromyalgia this year, and endometriosis finally a month ago. (I had long suspected.) My blessing is that I am under no pressure to start a family, have excellent physicians that I adore, and am covered by COBRA for three more months. My question is this: my ob/gyn claims Lupron is a safe approach for active lupus patients, my rheumatologist vehemently disagrees, but doesn't have any recommendation to deal with the overwhelming pain caused by the endo. Any advice?
When I was a teenager I suffered bad cramps and nausea every month. My girlfriend's mother told me that after I had a baby it wouldn't be so bad. She was right, after three successful pregnancies it was fine. But as I got older, in my forties, the pain started getting worse again. Then I started having what doctor said were bladder infections (no infection, but some blood and lots of pain) which were treated with antibiotics. The actual bladder infections that I did get progressed rapidly to kidney infections and hospitalization. In 2004 I finally saw gynecologist and was diagnosed with fibroids and prolapsed bladder, and she suggested fix bladder and think about hysterectomy. I was 50 years old and said go ahead if this will make me feel better. After longer than anticipated surgery she told me she had fixed bladder and removed everything, except one ovary, because of endometritis which had attached everything, including bowels, together. Once I had recovered from surgery, life was great, no more pain, no more wetting my pants everytime I sneezed, and great sex. Two years ago I had another kidney infection. In March, 2011, I got rash on face and felt crappy. After several visits to doctor and trying all kinds of creams, in May my ANA was tested and was positive 1:320. Saw rheumatologist right away and on examination and history she said probably SLE, let's watch. She put me on Plaqeunil right away and started Prednisone treatment . In August I was still 320, sore large muscles, hair falling out, and still fighting but winning very persistent rash. By December, 2011, rash gone, still losing some hair, upper abdominal and chest pains, but feeling not bad, ANA > 1:1280 Homogenous .
Now the reason for my post: the last 4 days I have had very bad pelvic pain radiating to lower back, hips and legs. There is no infection showing on dip stick but Bladder is sore so frequent urination, lots of pain when having bowel movement or even passing gas. So, is endometritis related to Lupus? Does endometritis come back after hysterectomy even with just one old ovary? I would say yes on both of these, after 58 years of knowing this body it is speaking to me loud and clear. Just have to see if doctor can hear it?