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Avatar universal

Chronic Pain in Sacrum & right hip

Any ideas, insight, or advice will be greatly appreciated.  I feel like I'm alone in my problem and my doctors are not interested in diagnosing or helping me.

I have been dealing with very low back pain on the right side for a year now.  I have a history of severe back cramps since I started my period but this is different.  I have never been able to handle hormone birth control because it makes me a different person.  Very irritable, unable to deal with slight amounts of stress.  I feel on edge all of the time and crying is uncontrollable whenever it wants to happen.

I got a Mirena IUD and thought it was the answer to my prayers.  For a year and a half, I had no period and no pain, no hormone trouble either.  In April 2009, I started having sharp pains in the right side of my sacrum.  It was on and off at first, and then became chronic.  I haven't been completely without pain (except for when on heavy pain meds) for a year now.  I had an x-ray in May 2009 and realized that my uterus was severely tilted to my right side because I could see the IUD was tilted.  My uterus is also slightly retroverted, so naturally I thought that might have something to do with the pain in the low right side of my back.  

I had an MRI, which showed my L4 vertebrae is very minimally slipped to the left.  No one thinks that can be the cause of the amount of pain I'm in.  My doctor told me that they would not do any more diagnostics because "the treatment for low back pain is the same no matter what the cause".  For months, they refused to listen to my concerns that my back pain might have something to do with my IUD and/or uterus.

I have tried accupuncture and a number of other treatments, including 3 different physical therapists.  I had my IUD removed with no complications and it did not change the pain.  The most recent physical therapist I worked with was a pelvic pain specialist.  She would adjust my sacrum and work out the knots in my muscles around that area, but most everything she did was only a temporary fix.  She corrected the tilt in my uterus.  I have been discharged because I was not showing any permanent improvement.  Every physical therapist I've worked with has improved my condition through exercises and/or soft tissue work, and when I have a period (or anything close to a period, even light spotting) all of the pain comes back ten fold with severe nerve pain and sciatica down the back of my right leg.  Always only on the right side.  I have been through this cycle for the last 4 months in a row.

I have done everything that all of my doctors have told me to do to fix low back pain.  I have lost over 20 pounds and am continuing with that, I bought a new couch, I wear good shoes every day (never heels) and I even bought a tempurpedic bed.  Nothing has changed the pain.  I always end up with sharp pains in the right side because my sacrum is tilted, and all of the muscles in the area cramp and seize up so bad it feels like I'm sitting on rocks.  I also have severe cramps only on the right side when I have a period, and severe pain in my hip.  Muscle relaxers are no help.  I have also tried various anti-inflammatories to no avail. A doctor even gave me lidocaine patches at one point, and of course that didn't help either.

I have a referral to pain management, which is my last resort.  I don't want to go to a doctor who is going to dope me up and not try to fix the problem.  I'm 26 years old and I'm not ready to resign to the fact that I'll be in pain the rest of my life.  I want to fix the problem.  

Should I have an ultrasound?  What could be causing this from inside me? My first thought was endometriosis, but two main treatments for that are the Mirena IUD and birth control pills.  My pain started while I had a Mirena IUD and has not been helped by hormone birth control pills.  Something inside of me is pulling my sacrum on the right side.  Any thoughts or advice anyone can give me will be greatly appreciated.  I wonder if I'm all alone in this or if someone else shares my pain.  

Oh, and to make this all a bit more fun... I don't have health insurance.
8 Responses
356518 tn?1322267242
   I am sorry for the late response.Are you seeing an Ob Gyn doctor? You could have any number of problems causing your pain. I would definitely have an ultrasound done. Do you have fibroids or was there and scar tissue when the IUD was removed?
As I said there could be a host of problems causing your pain. I do believe they are gynecological in nature from your symptoms.
I would see an obgyn specialist.
Have you applied for state medical help? This may help your medical bill burden and get you in to see a specialist.
Avatar universal
It still could be endometriosis even though you've tried birth control. I am 28, and a chronic pain patient, in a pain clinic on high doses of narcs. I was diagnosed 7 months ago by a laparoscopy. Endo can cause severe lower back pain, hip pain, sciatica pain, leg pain, pelvic pain, abdominal pain. Before my lap I tried several different forms of birth control and none of them alleviated my pain at all. My ob/gyn told me that BC hardly ever helps endo pain. You need to ask your ob/gyn about a diagnostic laparoscopy. It's same day surgery, only takes about an hour, and it is the only way to diagnose endo., and at the same time they could remove any implants, or scar tissue which could lessen your pain. No one listened to me either, it took three years of hounding multiple doctors before I got my diagnosis. Be persistent.
Avatar universal
I have heard that removing tissue via laparoscopy is only a temporary fix and can create scar tissue that makes the endometriosis worse when it does come back.  Have you heard that?

Have you tried the Mirena IUD or know of anyone who has?
Avatar universal
There were no problems when I had the IUD removed, and no pain during or directly after the removal.  I have been seeing a midwife because she is more affordable than a GYN.  I make just enough money not to qualify for any state or government assistance.  I could buy health insurance but this is a pre-existing condition and wouldn't be covered for 12 months.  I'm stuck.

I went to a gynecologist recently, because my midwife was unable to offer me advice about which birth control pill to try next because Yaz did not agree with me.  At that time, the doctor told me that continuing with physical therapy was my only option and did not believe that my pain could be related to anything gynecological.  I know that it has to be. The challenge is finding a OB/GYN that will listen and believe me.

Thank you for your reply and your advice.  I am definitely going to have an ultrasound next.  I also have a referral to pain management which I am going to make use of very soon.
Avatar universal
I personally didn't try mirena, I tried nuvaring, depo-provera, and several different kinds of pills. A dx. lap is the only sure way to diagnose endo. In most cases an ultrasound is completely normal, even if the woman has a raging case of it. A laparoscopy is only a temporary fix, and if you have any endo scar tissue depending on where and how deep it is, sometimes it cannot be removed. They remove what scar tissue they can, and any visible endo implants. There will still be microscopic endo tissue left behind, and your hormones will feed this tissue causing it to become bigger, and spread. When it spreads some endo implants will die off leaving behind scar tissue. Depending on how much micro. tissue is left behind after the lap. determines how long it takes for the endo to run rampant and cause pain again. The only permanent fix is a complete hysterectomy (everything), or a hormone called Lupron. They give it in shots, and it basically shuts down your ovaries, and sends you into menopause. If your planning on kids in the future this is a good option. It will keep the endo from destroying your fertility, and once you stop using it, you can get pregnant.

Be persistent, I was sick and in pain for three years getting progressively worse, and seeing multiple doctors before they found out what was wrong. I saw my ob/gyn several dozen times, and called every two weeks for a year before he finally did the surgery. The symptoms are as follows:
back, hip, abdominal, sciatica, or pelvic pain
irritable bowel like symptoms
diarrhea during period
frequent UTI's
pain when you pee or have a BM
blood in stool or urine during period
irregular bleeding or spotting between periods
heavy periods
passing blood clots during period

Those are the general symptoms, you could have more depending on where the endo implants are. Endometriosis can go ANYWHERE in the abdominal cavity. It can also implant on your sciatic nerve, or other nerves.

Avatar universal
Thank you so much for all of the information and for taking the time to try to help me.  I'm so glad that I found this forum because the people here seem to care about me more than my doctors do!

I have every one of those symptoms, which have been getting progressively worse for years and they worsen each month before and during my period.  I only have sciatica if I'm menstruating.  

I used the nuva ring for a year.  I had 7 UTIs in those 12 months.  I have a retroverted uterus so that changes the position of my cervix (which I have only recently found out), and I always thought that the nuva ring was not in the correct position in my vagina.  It seemed like it was putting pressure on my urethra. At that time my only doctor was planned parenthood and they denied repeatedly that the nuva ring could be the cause for 12 whole months.  They then refused to treat me anymore unless I went to a urologist.  I don't have the frequency of UTIs anymore but I feel like I'm more succeptable to them because of that.  Perhaps they could be caused by endometriosis.

I have also had alarmingly large blood clots for the last couple of years.  They last throughout my entire period.  My midwife and the gynecologist I saw did not seem to think that was a cause for concern.  Apparantly it is!  

Thanks again.  
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