Elaine Richard’s Patient Story

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Elaine RichardI am a married 39 year old mother of two.  A year ago my busy life was put on hold when I developed a blood clot in the renal vein of my left kidney.  I started feeling dull pain in my lower back at work, and I felt winded and tired.   I work full time as a civil engineer and spend a good portion of my day on my feet.  I remember saying to my coworkers that I just needed to sit down, which is very unlike me.  The pain got more intense each day, although at this point I had no idea I had a deadly blood clot.

At the time I was juggling many things, so I didn’t take time to take care of myself.  I was busy planning a retirement party, getting organized for a camping trip with my Girl Scout troop and caring for my aging and quite sick dog.  Days later the pain moved from my back to my lower abdomen.  I look back and now wish I had not waited so long to go to the emergency room.

I was concerned that the pain was not subsiding, so I went to a walk in clinic that weekend. The doctor thought my pain was due to a cyst on my ovary.  On Monday I called my GYN, who did not think I had an ovarian cyst because I was on hormonal birth control.  An ultrasound showed no sign of a cyst, so they sent me on my way.  They never investigated whether any clot was forming related to the hormonal birth control I was taking.

The next day I went to my internal medicine doctor, where my urine test showed elevated levels of protein and blood, so an abdominal CAT scan was ordered.  I had to wait until the next day for the scan, and by then the pain was so bad my husband had to drive me to the appointment. The scan revealed the blood clot in my left renal vein, the major vein of the kidney.  I was admitted to the hospital for 10 days where I was put on heparin, and dozens of blood tests where taken.

I did not have a clotting history, and my health was good to that point in time.  It is still unknown why my clot occurred, although doctors think it was a combination of factors.  I was on a hormonal birth control ring.  Doctors also noted compression that thinned my renal vein and made it more prone to clot.  Blood testing revealed that I have anticardiolipin antibodies and lupus anticoagulant, antibodies that attack plasma proteins in the blood, and see plasma proteins as foreign bodies or threats, leading to a higher risk of clotting.  An antibody associated with Sjögren’s syndrome was detected that may be another contributing factor to the clot formation.  However, my rheumatologist is reluctant to diagnose me as having any autoimmune disorder, since I do not exhibit the full spectrum of classic symptoms related to either Systemic Lupus Erythematosus or Sjögren’s syndrome.

I will be on blood thinners for life and the specialists do not foresee that the clot will ever dissolve.  My kidney function is good for now, but I need to check it regularly.

I also have pelvic congestion syndrome, a condition associated with varicose veins in the pelvis. These varicose veins developed because my left renal vein is blocked by the clot, and drains blood into my ovarian vein.  Blood engorgement in the vein near the nerves causes pain, pressure, and heaviness in my pelvic area lasting about 10 days a month around ovulation. It is ironic that the hormonal birth control that likely added to my clot risk was intended to prevent any pain from this pelvic congestion because it stops ovulation. I can never take hormonal birth control again, because it and the antibodies in my blood pose added risk for me to develop another clot.
I have never met anyone else who has a blood clot in their renal vein.  I have learned that it is essential to put my health first, no matter how busy life is.  I waited over a week before getting answers; this put my kidney function and life at great risk, but I am fortunate to be a survivor.

Take Home Messages

  • Listen to signals your body is giving you to stop and seek help
  • Take time to take care of yourself
  • Hormonal birth control is a risk factor for blood clots
  • Put health first

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Author: admin

21 Responses to "Elaine Richard’s Patient Story"

  1. mandi Mitchell
    mandi Mitchell Posted on July 15, 2013 at 4:25 pm

    Hi. I just got home from the hospital after suffering from an RVT also. I was 2 weeks postpartum when it happened. The doctors I talked to had never seen a case like mine and can’t rule out underlying causes for the clot since a renal vein clot is almost unheard of after giving birth. Just thought I would leave a comment since you seem to be in a similar situation, and I was feeling pretty alone since I don’t have anyone to talk to about it.

  2. Patti
    Patti Posted on April 10, 2014 at 9:55 pm

    You aren’t alone. I have a very similar story except that I was not on hormonal birth control or hormones. I had a hysterectomy but kept one ovary 5 months prior to developing a blood clot. They don’t believe the clot has anything to do with my surgery. At this point, I’m on warfarin but don’t have any answers yet as to why I have a blood clot. It is kind of weird to have it in a spot where not many people have one. My hematologist tested me for a bunch of disorders including lupus. Currently, I’m waiting for results.

  3. Michel
    Michel Posted on July 1, 2014 at 9:42 am

    I am in the hospital right now for this. I am getting no answers and this is my second clot. I was told hystorectomy scarring could cause this but I would like to know treatment and a plan forward. It is too painful for a third one.

  4. Monica
    Monica Posted on August 6, 2014 at 3:39 am

    I am 38, SLE since 12 years old. At Rheumatologist today. Lower back pain and now pain severe near my bikini area. Sitting in kitchen while my 2 year old sleeps. I am going back & forth on what to do. My legs hurt from the mid calf down & a every once in a while stabbing on my left side. Ty for sharing. Going to ER.

  5. Enid
    Enid Posted on September 23, 2014 at 5:21 pm

    You are not alone, last Thursday was diagnosed with a right ovarian vain thrombo after I presented similar syngs and symptoms. At the time waiting for answers since these type of blood clots can be associate with cancer. So far all my test are indicating that I do not have neoplasm anywhere in my body, therefore, the next step is to see a hematologist next Thursday. I’m currently in anticiagulants until the problem resolves. The process of waiting for answers is scary and frustrating but at this time and praying for a good outcome. Thank you for sharing your story.

  6. Vicki
    Vicki Posted on October 8, 2014 at 11:53 am

    Definitely not alone! I am currently in the hospital on blood thinners, and antibiotics for right ovarian vein thrombro. My Dr in emerg yesterday said it is very rare, especially for someone postpartum. I have a one week old gorgeous baby boy at home, and it’s killing me I can’t be with him right now. The dr’s are going to be doing more tests this morning to determine our next course of action, although I was told I would be on pill form anticoagulants for the next 6 months at least. I’m always so up to date about my health, and usually know when something is wrong. I hate the unknown of this, so much. Here’s to a speedy recovery for us all ladies 🙂

  7. Joan
    Joan Posted on December 4, 2014 at 4:26 pm

    So glad to read your story. My clot cut off blood to my right kidney. My pain was so bad that I eventually went to the ER and they shipped me off to a larger hospital. No cause has been found yet, but I have been scanned head to toe. I am 63 and in good health with none of the underlying conditions that can cause a clot. Thanks for sharing this. I thought I was alone.

  8. Christine
    Christine Posted on January 6, 2015 at 3:53 am

    It’s been a year and half now since the Doctor at urgent care took my pain serious enough to send me for a CT. After the CT the Doctor called me himself to let me know they had found a blood clot in my left ovarian vein he and the doctor reading th CT results and never seen a clot in this area before. I was sent to the ER and sent home on blood thinners which my Doctor kept me on for a year. I did not have any of the listed risks no recent surgerys or given birth. They had no answers for me. My clot was on my left side which is also very rare. So remember to trust your body when it’s telling you there is something wrong. I was very lucky to have had such a great doctor that day!

  9. Miranda
    Miranda Posted on January 9, 2015 at 11:24 pm

    Okay I’m 18 and I’m having very bad back pain it’s gets so bad to where I can hardly stand, I just want to cry because how bad it hurt, and on the lower right side of my stomach it feels like someone is staving me with a knife, I’m not sure if this is the same thing but I was at the health department today and the lady told me to go to the hospital if the pain gets any badder I’m a the birth control shot (depo shot) so what should I do?

    • L F
      L F Posted on January 20, 2015 at 5:13 pm

      Miranda – Please check your email. We sent some information directly to you. Thank you, Admin.

  10. Kelly Bergeron
    Kelly Bergeron Posted on January 19, 2015 at 2:29 pm

    I also had a clot to my right kidney. I was sitting on the couch and got this pain in my lower back and in my lower abdominal area ( bikini region). When the pain did not subside by the next day I went to the ER. Ended up in the hospital for three days, while the ran a variety of tests to try to find a larger clot somewhere in my body that splintered off to my kidney. They did could not find a larger clot or a reason for this. They said I will have some minor pain until the nerve endings died in the area of the clot. I have been put on blood thinners that I will have to be on for a year.

    I was glad to see your post Elaine. I think it is very helpful to others and a great reminder to stop and take the time to take care of yourself…All the other things can wait. If you don’t take care of you then the other things you are desperately trying to get done may never get done!

    Thank you!!

  11. Ann
    Ann Posted on January 23, 2015 at 6:18 am

    Hi Elaine – thanks for sharing your story. Due to the anticardiolipin antibodies in your blood combined with your clotting history, did your rheumatologist make a diagnosis of antiphospholipid syndrome? If not, please look up this autoimmune condition, it’s also known as Hughes syndrome or sticky blood syndrome. It is a key cause of clotting yet so often doctors often lack awareness of this condition. Good luck!

  12. Nikki
    Nikki Posted on February 19, 2015 at 4:17 pm

    I have just been diagnosed with my fourth PE the emergency sent me home with xalto wihtin 24 hours I also have possible CIN 2/3 which I can’t get checked as the gyno couldn’t find my cervix so they have to do it under which I can’t have with a large clot in my lower right lung the pain in my thigh back and pelvis is becoming unbearable and they wouldn’t give me any pain relief I’m desperate and don’t know what to do I’m also scared the longer they leave the precancerous cells it’ll turn into stage 1 cervical cancer .

  13. Sarah Winogrocki
    Sarah Winogrocki Posted on February 24, 2015 at 6:33 pm

    I have been battling Lupus symptoms since my early teens. I missed half of high school due to having chronic ITP. I went in remission at 18. Then in my early 20’s I was diagnosed with Lupus, IC of the bladder, Rheynoids, Snojeans, and IBS. Also Fibyromiligia. I had a severe kindey infection on my left side a year and a half ago. For the last few years I have suffered from severe pain during ovulation and periods. It has gotten to the point I end up in the ER almost every other month. I have had 3 surgeries to remove cystic tumors on my ovaries and uterus. I can’t take birth control due to my lupus. I felt like I was getting no answers. Last month I had a laporoscopy (pardon ny spelling). During the procedure they found no cysts, they ruptured before the surgery. They did however find a very enlarged blood vessel in my pelvic area. The cat scan the month before revealed enlarged veins in my pelvis but no one said anything. All they said was my cyst was hemmoragging. I just saw a vascular surgeon last week and he does not seem to be very familar with Lupus. My gyno thinks that my lupus caused the problem. He wants to talk to his colleagues because he says the amount of pain I am in does not match how enlarged my veins are. He took a copy of my enlarged blood vessel from my surgery. He said he wants to consult his colleagues before he decides if he wants to operate and possibly insert the coils into my pelvic pain. He doesn’t understand my highened pain due to all my hyper active nerves. This literally makes me bedridden for over a week to the point I can barely walk. Praying I get the answers I need this week and I can hopefully get on to the path of recovery. My gyno is going to be putting me on the Lupron Depot injections to try and prevent me from having cysts in the future after this is resolved. I am scared about taking them with the Lupus. Also trying to find a rheumatologist that accepts my insurance so I can get back on immune modulators. So tired of all this. It feels good to know I am not alone in this crazy battle. It feels good to know I am not the only one who was treated like a hypocondriac.

  14. Gloria
    Gloria Posted on May 29, 2015 at 3:22 am

    Thanks for sharing your story Elaine. I started having significant back pain a few months ago and went to an orthopedic surgeon. He didn’t see anything in my MRI and suggested I go to my GYN as he thought it could be a female problem. My GYN recommended a hysterectomy which I had in March this year. I developed a fever so my GYN had me have a CT scan to see if there was an abscess from the surgery. I had an abscess and they also discovered a blod clot in one of my ovarian veins. I am on blood thinner but I am still having back pain and some abdominal pain though it isn’t too bad. Now I’m wondering if the back pain has been because of having a blood clot. God bleed to all of you ladies going through this.

  15. Peggy
    Peggy Posted on March 3, 2016 at 12:49 pm

    I would like to ask if anyone has experienced what I am, and if i should be concerned. About a month ago, I started being woken up at night from a dull pain in my left kidney every time I would roll over. As the weeks went by, I just started feeling tired all the time and just not good. I could see no blood in my urine, nor any pain in urinating. I finally went to my primary doctor and they tested my urine and said my white blood cells were high, which meant I had a UTI. Now I have a long history of UTI’s, and this sure didn’t feel like one, but that was what I was told. They put me on Cipro for a week. Today is is my last day of taking it. I have been feeling better, until this morning, I wake up and have this dull ache again in that left kidney. Don’t know if I should run back to the doctor or not. .

    • Amy
      Amy Posted on March 24, 2016 at 9:00 am

      Look up nutcracker syndrome. It involves compression of the left renal vein (near kidney). I Have been doing non stop research about it and will be tested on Friday. I had a very similar experience with my dr telling me I had a uti.

    • Karen
      Karen Posted on June 6, 2016 at 8:19 pm

      Hi Peggy I had same problem, my doc was really good and sent me for a ct scan and mri, keep complaining about the pain until you get the right care.

  16. Karen
    Karen Posted on June 6, 2016 at 8:17 pm

    Hi I too have just been diagnosed with right ovarian blood clot. I started having pain in my stomach about 7 weeks ago and in my left side and shoulder, I was diagnosed with kidney infection and I have never felt so ill. I had constant pain in the centre under my ribs also in liver area and in left side of kidney, I had no energy to the point that I couldn’t get my little boy ready for school in the morning and couldn’t walk upstairs. My doctor did bloods and sent me for ct scan and then Mri scan which came back with this clot. Apparently my stomach pain was caused by my spleen which became overworked and enlarged fighting the infection in my body. I am now injecting blood thinners every day and are on these for 6 months I’m also having more bloods done and are under haematology. I have no symptoms of pain in my pelvic area and my cycle is normal maybe a bit lighter than usual. I am freaked out at minute as I thought I had gallstones and I am now worried about cancer which to be fair hasn’t shown in my bloods. Just a waiting game I suppose.

  17. Whit
    Whit Posted on July 5, 2016 at 3:08 am

    I recently developed RVT. I have Factor V Leiden mutation. This is my second blood clot. And I just had a baby not even 2 weeks ago. I just came home from the hospital yesterday. They performed angioplasty and put a balloon in to open up a vein for the blood to flow properly. I was wondering if anyone else had this done as well and if they experienced lower back pain after the procedure. And how long it lasted. It hurts when I take deep breaths and wanted to know if anyone else experienced these symptoms too. Love to hear back from anyone.