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Low back pain tied to Menstrual cycle?

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Posted 4/19/2010 2:24 PM (GMT 0)

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.

Posted 4/19/2010 3:05 PM (GMT 0)
I'm so sorry to hear you are suffering so :( I can totally relate though. I would have very painful cramps with my periods - throwing up too. It was horrible and then as I got older the pain got worse and worse. It got to a point that it felt like someone was taking a red hot crow bar trying to pry my hips apart. I was in so much pain it was unreal. One time I even had cramps that made me fall to my knees with a 10 like pain. I had exploratory laproscopic surgery and the doc didn't discover anything other then a few small cysts on my ovaries. I then went in for an endometrial ablation and it has been heaven! I no longer have periods so therefore I no longer have pain. Do you know if you have any ovarian cysts?
Posted 4/19/2010 3:59 PM (GMT 0)
 

 

   Dear Carrie,

 

     Good morning. Welcome to the Healing Well community. My name is Dani. It is very nice to meet you. I hope you find this a fun & relaxing environment.

 

     I am terribly sorry you have so much pain. But, like Red mentioned... My first thought was are you prone to cysts? They can cause irritation and pain when the burst. It can take up to a week before your body absorbs the fluid. Are you prone to cysts?

 

     Also, just because a doctor can't find you pain right now... doesnt mean they wont find the culprit later. My biggest suggestion would be to continue to get "diagnostic" testing done on a regular basis if you can. IE ultra sound, pelvic exam, x ray. You will want to document what is going on as best as you possibly can just in case a doctor comes along that will be able to fit all the "pieces of the puzzle" together and give you a diagnosis.

 

     Though I am sorry for the reasons that brought you here.. I am very glad to meet you. I hope you can find a few moments to relax.

 

*hugg*

  dani

Posted 4/19/2010 5:15 PM (GMT 0)
I do know that red hot crow bar feeling. When I was younger, it felt like someone was pulling the lower part of my pelvis apart with their hands. My menstrual pain has changed completely since I got the Mirena IUD. It has become more abdominal than in my back with the cramps, but the sacroiliac dysfunction and sciatica started. Those things don't seem to be related to the uterus and I'm sure that's why no one can tell me how my period is making this pain worse.

I had an internal and external ultrasound before I was able to get the IUD and there were no cysts or fibroids. I have not had an ultrasound since. I have no history of cysts or fibroids that I know of. I am 26 and am not yet ready to sterilize myself, although the pain is so bad that the thought crosses my mind daily.

The pain I'm having, although exacerbated by my period, is not like any cramping or menstrual pain I have ever experienced in my life. It comes back with my period, but it does not go away when I am done bleeding. The only thing that has improved my condition has been physical therapy massage and exercise, but then the pain comes back when I have a period.

Have you ever known cysts to cause the sacrum to move out of alignment and/or sciatica? Can cysts or fibroids grow on or around the tendons that attach from the uterus to the pelvis?

Thank you both very much for your well wishes and advice.
Posted 4/19/2010 5:37 PM (GMT 0)
Carrie,
Have the low back pain but my culprit is a disc bulge. However the pain your describing sounds almost like the endometrial cancer that I suffered. I told DR's for years that I had more than just cramps and until my 4th child and I had to have a C-section that they found my insides full of endometriosis. All my paps and such up till then, even an internal ultra sound and a DnC still showed nothing. I seemed to only be better for a few months after delivery while I breast fed my kids. THe feelings I had were as if someone had a crowbar shoved inside me and swinging back and forth forever. Only thing that help was a hysterectomy. WHen the doctor opened my pelvic region it was attached to alot more than my female organs.

Rebel
Posted 4/19/2010 6:00 PM (GMT 0)
I did think that it could be endometriosis. I figured that if the endometrial tissue was growing on the tendons that attach from the uterus to the sacrum, that could cause them to not be as flexible and pull my sacrum out of alignment. If that were the cause, I wonder if it could be possible to only have endometriosis on the right side or for it to only cause pain on the right side?

My midwife told me that if I had endometriosis, two of the best treatments would be either the Mirena IUD or hormone birth control pills. I started having this pain while I had the Mirena IUD in (but it did not improve when I had it removed). Since I've started hormone birth control again, there has been no change in the pain either.
Posted 4/19/2010 6:11 PM (GMT 0)
Hello Carrie! Welcome to the forum! OK, I know I'm out of my league here with what is a female problem, but I wanted to share what little experience I have, or for that fact, what my wife had. She had lower back and abdominal pain for several months.
She was considered to have very heavy flow during her minstrel cycle, and I'm not kidding one least bit. The pain seemed to be tied to the monthly minstrel, and the Dr also suggested an Ablation of the uterus. While that helped the flow problem, she continued to have sever pain during her cycle's.
A trip to the ER found that one of her fallopian tubes had grown to the size of a small baseball, so it came out. It seemed to help, but she still has back pain to this day, and seems to be worse during the monthly cycle.

I wanted to mention that an Ablation may or may not stop a woman's period, and will in most cases at least slow down the flow. She still has periods, but the flow is not near what it used to be.

Now.... my sister just had a hysterectomy because of abdominal pain, and the test after the operation showed that she had endometriosis, and that her uterus had attached itself to the large intestine. It is not very common, but is does happen. The surgeon felt that this was where most of her pain was coming from.

As you can clearly tell, I'm certainly no expert on the subject matter, but Im a hoping that some of the information here may jar a few thoughts on this.

My wife still has a problem, and we are in the process of checking it out. We believe that some of it is back related, and some of it is female related as well. It takes a long time to figure all of it out, especially if there is more than one cause or symptom.

If I have spoken out of total ignorance here, forgive me! This is not my forte at all. So again I apologize for my ignorance. Good Luck to you, and I sincerely wish you well.

SE
Posted 4/19/2010 7:18 PM (GMT 0)
Oh the endometriosis topic reminded me of something. One of my good friends has just recently been diagnosed with endo and one of her main symptoms was a pulling, burning type pain in her lower back. She had lapro surgery and they found that her endo was so severe that it was adhering to muscles in her back and on other organs. They detached it from her back and she seems to be better. Not the greatest but she was having a lot of difficulty with her cycles. Another one of my friends also has endo and she is on bc pills to help control it. Hers is pretty bad too and they told her that if the bc pills don't help that her only other alternative is a hysterectomy. Of course these ladies are older then you and past bearing children. But I just wanted to bring that up as a very real possibility. Bc options are supposed to help but it doesn't in all people.
Posted 4/20/2010 12:43 PM (GMT 0)
Thank you, screaming eagle. Your wife is lucky to have a man who is there for her and interested in her health. I am also lucky that I, too have a man who cares and I can not tell you how far that goes in the way of comfort. I do appreciate your advice, because it helps confirm my thought that I should at least have an ultrasound. I know that endometriosis is not always seen on an ultrasound, but there are other problems that could be causing my pain and might be seen. If I had a problem in one fallopian tube, it could cause pain on only one side and an ultrasound might be able to diagnose that. While I wouldn't wish this pain on anyone and I'm sorry for what your wife is going through, I'm also glad to know I'm not completely alone. I just wish that my doctors would listen and try to help but nowadays doctors are so overworked they just don't have time to care.

Also thank you, Red_34. I don't have any children and I can't say that I'm 100% sure that I don't want them. I have to admit I'm afraid to be diagnosed with endometriosis because I know the treatments are limited and most of them are not friendly to conceiving in the future. My physical therapist told me that she knows women who have had the procedure where they burn off the endometrial tissue only to find that it comes back worse within a few months because of scarring. She also told me that a laparoscopy does not always see endometriosis, especially if it is behind a retroverted uterus.

You are right that if BC pills don't help, the only other real alternative is a hysterectomy... I have also heard of a drug that basically puts your body into premenopause and stops your cycle. I would be hard pressed to find a doctor who would accept those as options for my treatment since I am so young.

Does anyone have experience with back pain that started while using a Mirena IUD? Any complications with this type of IUD? Any other problems that started during use and did not go away once it was taken out?
Posted 4/20/2010 1:03 PM (GMT 0)
HI Carrie,

I don't think we have 'met'...and sorry to hear about your chronic pain that brings you here...there are such a great group of people to help give you support and empathy when needed....Happy to hear that your hubby is caring and understands what you go through..that does make a big difference...

So am I understanding from your posts that you haven't had an ultrasound? I would definitely think that a trans/vag is important and would offer a good look at what is going on...

For me, I would have ovarian cysts rupture every single month around my period..when they first started...I ended up in the ER the pain was so severe...

After a few laprascopic surgeries, (one too many since it causes adhesions which then cause more pain) but two were necessary to remove the larger cysts and then my appendix...

But then a very smart Dr. actually had me STOP my birth control...and use other methods...this made the cysts disappear...as well as helped my adhesion pain...and I haven't had a single issue for over 15 years...

So, before you jump too far ahead about thinking you have to have a hysterectomy or other major issues...I would make sure you get the best OB/GYN you can find...recommended by your friends/family...and have all the proper testing...A PM or physical therapist are not going to be the type of Dr.s to diagnose something..

A good OB/GYN can even do an exploratory laprascopic sugery, if needed, to look further if ultrasound and other testing is non-conclusive...The newer way of thinking is to not jump to hysterectomies to solve the issue of endo which is good..especially with you being so young..I think if a Dr. pushed that right away, I would run to another one who is willing to look further..

If it turns out that it's not a birth control issue...it may be the lower back/sacrum issue which then you need a specialist of a Board Certified Orthopedic or Neurosurgeon to look at your MRI, (how long ago did you have your MRI done?) to get the best possible view of any issues...and just because they have surgeon in their title does not mean automatic surgery..they have dozens upon dozens of modalities to treat pain/nerve/disc issues if that is the case..

The Dr. who said that he would treat you the same no matter what your back issue...I would find another Dr. asap...again..Board Certified/Fellowship trained have many more years experience than regular Ortho's..

So, going to the appropriate specialist seems to be the necessary first step in determining your actual problem...your PM can certainly help with pain medicine and such while you are going to the other Dr.s for actual diagnosis..

Again..welcome to the boards:)
Posted 4/27/2010 6:01 PM (GMT 0)
Thank you for all of the information.  I'm limited as to what and how much I can do in a period of time because I have no insurance or medical assistance and am paying for everything out of pocket.  Surgery is not an option for me because I can not afford it.  I have also heard that burning off endometrial tissue can do more harm than good.  Right now I'm faced with the problem of finding a doctor who is willing to listen to me and I'm finding that the best doctors who really care and are interested in helping their patients only take patients who have medical insurance.  I didn't know they could do that, but it's true.

My last resort is a referral to pain management that I got when i first started seeing the MD who told me that the treatment was the same no matter what the cause... at least she did that much for me.  I thought that pain management was nothing but drugs so I was trying to avoid that at all costs.  I had to send my referral to the only doctor in my town who would accept a self-pay patient and cost less than $1,000 per visit.  I make enough money to not qualify for any government or state assistance, but surely not enough to afford that kind of treatment.  I also have now been branded with a pre-existing condition so that now that I can actually afford some insurance, it wouldn't do me any good if i did purchase it.

I'm waiting to go to pain management to see if they can refer me to a good gynecologist with perhaps some experience with my situation, or to see if the pain management clinic might be able to do an ultrasound at their location or save me some money by having the lab bill through the PM clinic.  Otherwise an ultrasound would be around $300.  I have had one ultrasound but that was before I got my IUD and a year before I started having pain.  I was told that there was "nothing abnormal" at that time.  I haven't had a doctor tell me that a hysterectomy was even an option for me.  I'm 26 and if I were to make that decision I'm sure I'd have a hard time finding a doctor who would even do that for a person my age.  I've just concluded that is probably the only thing that would completely take my pain away.  It's possible that I could find another treatment and that's what I'm trying to do.

What I need to find is something that can just help me get by until I can find an insurance company that will take me, and then I will have to wait out the period of time where they will not cover anything having to do with my chronic pain.  Right now I don't have much of a diagnosis and haven't been treated much other than physical therapy, but I am afraid that if I actually do go to pain management it will look worse to an insurance company and I might be denied coverage altogether.  I signed up for americans 4 healthcare, which is a discount program.  It is $60 per month and provides a 40 to 60 percent discount on all medical, hospital, and pharmacy costs.  I really hope that will help me and that it is not a scam.

I also need to find a good gynecologist.  I was heartbroken when my mother's OB/GYN, the man who delivered me and my sisters, retired.  I have been seeing midwives since then because I feel like they listen and spend more time with their patients, but sadly they're not as knowledgable as a gynecologist.  It's so hard to find a good doctor. 

My body does not deal well with hormones.  They make me very irritable, unable to deal with stress, and depressed.  I feel like I don't have many more options when it comes to birth control because my boyfriend is unable to tolerate condoms, and my uterus is retroverted so that changes the position of my cervix and makes me unable to use cervical caps, the nuva ring, or a diaphram.  I thought that the Mirena IUD was the answer to my prayers and was wonderful for a year, but then this pain started and I had it removed.

The issue IS definitely with my sacrum.  It always tilts forward to the right.  I think that this has to have something to do with my internal organs, because there is a tendon that attaches from the sacrum to the uterus.  I have been through months and months of (painful) physical therapy and the pain improves for a month and comes back full force when I have a period, and then does not go away unless I go through more physical therapy. It is very strange.  I have had doctors diagnose me with sacroiliac joint dysfunction, but if that were my problem then physical therapy would provide me with more permanent relief.  Since the pain returns with my period, my physical therapist discharged me because she thinks she can't help me.

Again, thank you for taking the time to reply.  You are right that this is a great group of people.  I wish you guys were doctors!  :)

Posted 7/3/2012 3:11 AM (GMT 0)
Carrie123456:

The circumstances you are describing sound exactly like mine, even the tilting uterus (to the right). I had a Mirena inserted last June, and two months later I had incredibly bad pain in the sacrum area in the middle of my cycle. It felt like severe muscle spasms or something. The pain is so bad all I can do is scream, cry and try to lie still. I do not have the pain every month. I had an ultrasound done and the doctor thought it was associated with a leaking cyst from my ovary and the fluid in my sac (area behind the uterus) caused the pain. However, I have been feeling sciatica too, and had an MRI of my back and have two bulging discs in the lumbar region. I am making an appointment with a neurosurgeon tomorrow.

Have you had any success with your pain? I find it really interesting that you and I experienced this pain right after getting a Mirena. I have not had mine removed because my Gyn said that it was perfectly placed (even though it tilts to the right with my uterus.

If you have any updates, I would greatly appreciate hearing them. I do not have the pain constantly, but when I do, it is unbearable.

Susan
Posted 7/3/2012 4:43 AM (GMT 0)
Hello Susan! Your reply here is on a post that is over two years old, and the member you are referring to, is no longer with us.

I will lock this thread, and hope you start a new thread of your own, and introduce yourself there. You will get much more attention that way and hopefully some good replies.

Thanks!

SE wink
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