Back Pain and large ovarian cysts

[bnlp28]

Hi everyone, I guess to some degree you could say I am still in shock. I went to my Gynecologist recently after having noticed a swelling in my Uterine area, I honestly thought there was a possiblity I was pregnant. So imagine my shock when the Dr. informed me that I had two large cysts, one 5 inches in diameter, the other 7 inches in diameter, one on each ovary. This I found out less than two weeks ago, and the Dr. has already scheduled me for a complete hysterectomy on April 2nd. He said that the size of the cysts make a laproscopy impractical, so they are going to have to remove them c-section style.
     In the meantime, I already know that I have a tipped uterus, and have been experiencing imense amounts of back pain, part of it I attribute to the weight loss that I have indured due to an extremely affected loss of appetite, but I wanted to know if any of you have had any experience with this type of situation, and if extremely large cysts and a tipped uterus could cause the cysts to put enough pressure on the colon and spine to be able to cause the intensity of back pain that I am dealing with at this time.  

[bnlp28]

Thank you sweetie. I really needed that about now. It is just close enough that it is hard to not think about it. The meds help when they knock out my brain, LOL, but it is still difficult not to think about it, and naturally you think about all the things that could go wrong. It is good to hear just before you go it that everything can turn out okay. You just helped my day more than you know, or maybe you do know and that is why you said it. Either way, thank you so much. It is nice to know that there are others out there, having gone through this that can say everything will be fine.
    bnlp28

[bratty_girl]

April 2nd is right around the corner!
Just think after recovery how amazing you will feel. I noticed a difference right away!
My circumstances were horrid and I was stuck in the hospital for 13 days ( great nurses - just boring as hell!!) but you should be there maybe 4 ? You will feel so much better ,  the surgery is terrifying to think about and head into but after wards its totally worth it!  Sure noone likes being "ill" but the weight of carrying around cysts like we are/have is torture on the back and causing pressure on the other organs.
Good luck to you on April 2nd!  AND NO LIFTING !!!!
~bratty_girl

[Grandmere68]

I wish I could adequately express my gratitude to all of you here on this forum.  As I approach the revised date for my surgery later this week, the fear is nearly paralyzing.  It really does help to hear good stories of good results.  I will have a laparotomy, never had open abdominal surgery before, and am very scared.  Have a 10+cm cyst, which the MRI report said is probably on the right ovary, I'm over 65, but my CA125 was in the normal range.  Any more hints, tips from any of you are welcome.  I have a brand new robe that buttons up the front, and a new pair of slacks (huge) with a drawstring, and several jumpers left over from gall bladder lap surgery.  I'm expecting to have a spinal.  Any more thoughts anyone?

Grandmere (Lori)

[MarieMichele]

Yes, that is how cysts that are larger than the incision opening are removed via laparoscopy.  

Unfortunately, there are sad tales where cysts do have cancer and the bagging does NOT contain the contents and cells get released into the abdominal cavity.  Then the poor patient, who would have had contained Stage 1 cancer removed (in open surgery) and no need for chemo, was now at a more advanced stage of cancer that has spread and needs treatment.  

Laparoscopy is the less invasive procedure, yet some doctors are so worried about the above occurring they will refuse to remove certain cysts via laparoscopy.  That's how my doctor felt, and he is a gyn/onc with massive experience even though none of my US results or CA-125 indicated cancer.  I was older, post-menopause, with a large 10cm+ cyst, and that raised the doctor's concern level.  That plus the breast cancer risk in my family which raises the ovarian cancer risk (I learned that later by reading).

There are many things to consider when weighing whether to go for laparoscopy or laparotomy and a doctor should explain his reasoning when he wants to go for the larger procedure.  Laparoscopy has been used when cancer is suspected, too, and I suppose that option is chosen when a patient requests (or insists) on the lesser surgery, if the patient is not a good candidate for open surgery because of health, or if it's just the doctor's preference.  But sometimes a patient goes to the hospital expecting laparoscopy and wakes up to find it was a laparotomy because they had to do more work than expected for a good outcome.

Having been through the larger procedure myself, my thoughts, prayers and best wishes go to all the ladies that are still awaiting surgery or are agonizing over what to do.  I was petrified, but came through it better than I expected, and I'm eternally grateful to the wonderful medical professionals that got me through it all.

[Novaries43]

Just a little notation re the laparoscopic approach to removing these cysts:
They actually (I found this interesting, anyways...) insert a bag through the lap tube and encapsulate the ovary/cyst (in case where cyst consumed the ovary, like mine), and apparently then use (laser, I believe?) to break it up inside the bag so they can remove it through the tube. This apparently then will not allow any suspicious cells to spread inside the body cavity.  In my case, although all my blood workups (ca125, tumor markers etc.) came back clean, they still couldn't know for sure until they were in.  And, because on the MRI, it didn't look like a typical Dermoid Cyst, it looked more completely solid.  However, if you have elevated blood test levels, they may have taken a diff approach, I'm sure.  But, anyways, just thought I'd share that as a little educational info for anyone who is interested.  Wishing you all the best in your surgery & recovery, and remember to review all your options re trad HRT vs Bioidenticals (Dr. monitored, not internet marketed...need to understand the difference and what "Bioidenticals actually are)

[bnlp28]

Hi,
     How great it is to have this forum, I feel so much better and so much more informed being here. Three weeks may not seem like a long time, but when you are not sure what is going on in your life it can seem like forever. This forum has made the last week much more bearable. (for both me and my fiancee - even if he doesn't realize it).
     I am having a vertical incisioin, I really don't care about the bikini line, and my fiancee said he really doesn't care, just wants me to be happy and healthy. My surgeon said that he prefered to do the vertical cut because he will have better visibility once he gets inside. I am all for him being able to see everything he needs to see to do the job right. I dont really care how the scar is situated afterward, as long as the surgury goes right.
      Thanks again Marie Michelle

[MarieMichele]

I don't think problems with the uterus are connected to cyst problems unless there's also endometriosis involved.  I do think the fact you have more than a cyst problem is adding to the pain you are feeling, so they are taking the step of removing everything so that you can be pain free and never have to worry about those body parts again.

How old are you? Post-menopause?  If so, you won't feel too much different after losing these parts.  If anything, you'll feel a whole lot better.  If pre-menopause, then you'll want to discuss your options for HRT or just allowing menopause to occur.

The cysts, even when benign, can also elevate CA-125.  They get extra cautious when the numbers are up (as they should), but that does not necessarily mean cancer.  They want to get it right with you and that's the sign of a good doctor.

I had a a lot of people praying (incliding high ranking clergy) for my surgery.....and I think it made a world of difference in my outcome and recovery.  Faith got me through this and it will do the same for you.  Supportive friends and family help a lot, too.  My husband was amazing and did things for me during the recovery period he never had to do in our 21 years of marriage.  Cooked every meal, etc.  Great man!

Are you going for a horizontal incision or vertical?  I know most want to go horizontal so they can wear bikinis again, but my surgeon recommended vertical because the recovery is easier for that than for horizontal.  My cut is 4-5 inches and starts below the belly button.  Frankly, I could still wear bikinis with that cut, not that I want to.  Not a big fan of bikinis myself.
:-)

Best wishes to you.

[bnlp28]

Hi,
     My tipped uterus is not really the problem and definately not something that the Dr.s are addressing in removing it. I was only wondering if this condition could further complicate the issues with the cysts. I believe they are actually removing it becuase of the heightend ca125's. As Novaries mentioned there are other conditions that can lead to higher levels of ca125, I believe if I remember right one of those conditions is uterine fibroids. If that is the case, since my CT scan came back and my lymphs were not enlarged, that may be why they are deciding to remove the Uterus as well, I also think with how quickly the Dr. jumped on this that it may be that at this point the uterus may be being squeezed between the two cysts. Either way, at this point I am comfortable trusting my Dr. I thank you for your thoughts. And I am praying for a good outcome from this myself, as I know my family, and my fiancee are.

[Novaries43]

Sounds like you are in good hands then. Oh, and by the way, as a glimmer of hope here: I was told that CA125's are often elevated for various reasons, so it doesn't mean it's definately cancerous, but it's good that they approaching it as such, just in case.
Good luck. Oh, and no, I don't think it was "okey" to mention being surrounded by good family/friends & faith...I believe the overwhelming prayer response of so many people (some even unexpected)  :)  got me through it with a good outcome!

[MarieMichele]

Laparotomy sounds like the correct approach in this situation, especially when you have elevated C-125 results.  The best way to remove the cysts is intact and that's best accomplished in open surgery (don't want to release any "bad" cells from cysts into the blood).  Most definitely, they can cause the pain you describe.  

I don't know anything about tipped uterus...is that not something that can be surgically corrected rather than total removal?  Complete hysterectomy sounds extreme, but I'm not a doctor.  Removal of cysts/ovaries seems the most urgent.  Gyn/Onc is the best type of surgeon for this.  I'm not sure about the combo you are getting since onc. is such a diverse/specialized area and you want someone with vast knowledge of female pelvic cancers on the case (not saying this is cancer, just saying a gyn/onc knows how to detect benign from cancer better than anyone else).

[bnlp28]

Thank you for the information, one of my cysts measures 16+ cm, the smaller one is just over 10. The Dr. informed me that they are going to have to take our everything, ovaries, cysts, falopian tubes, lymph nodes and uterus. My ca 125's were elevated, and because of that fact they are doing the surgery with the assist of the head of Oncology at Yale Medical, just in case they find anything else while they are in there. They did a CT scan, which did thankfully come back clean, but because of the speed that these grew, he did not want to risk any thing. These are growing at a rapid pace for some reason, to the point that I honestly thought I has a baby growing inside of me. I could tell the difference in size from week to week. I am sure that had something to do with the decision to do the open surgery. I have been forwarned of what to expect post op, and I have researched it on the net too. I have a good family ready to assist me during recovery, and I have my faith. I know that may sound a little hokey, but there it is. My Dr. has been practicing for over 16 year, and as I said, will be working with the head of oncology from Yale, so at this point, I trust his judgement. If he was a newly practicing Dr. I would have asked for a second opinion. Thank you again though, I will keep your comments in mind, and if anything happens to cause me to question his judgement, I will use your suggestion.

[Novaries43]

Don't have a ruler in front of me to convert inches to cm, and don't know all details of your circumstances, but I can tell you this: Mine was 10cm+ in size, and the weight of it made it fall down in the cavity behind my uterus, against the spine (just so you have idea how complicated it was). I CAN TELL YOU THIS: Get a 2nd opinion. My Gyn was "man enough" to pass me off to a specialist, a Gyn Oncologist, who was very skilled in laparoscopic surgery of these things. Mine was a dermoid cyst (fairly solid) and yet, amazingly, he was able to do it. He removed this huge mass via laporoscopy.  I did lose the ovaries & tubes due to the size. I have two very small 1/2" incisions on my bikini line, a small incision in my belly button, and another 1" incision on my prev c-section "bikini-cuts".  Don't get me wrong, still some post-surgical pain ( body cavity gas they put into you to see your insides, mostly), but NOTHING like my c-sections. I was home next day. A full-blown lapartomy (cut open) is 4 days min in hospital, painful & much longer recovery time.  Have you had C-sections before? or abdom surgery? You'll know what I mean.
Also, if you haven't had c-sections, you could ask about having laparoscopic hysterectomy done through your vaginal canal. Explore the options. Why have all that pain and major scars afterwards. Just make sure he/she has a very good track record doing laparoscopic surgery, as it is a special skill, not every ob/gyn can do.
GOOD LUCK!!    PS: Yes, sciatic back pain was the initial health complaint (and mid-month bleeding) that led to this shocking diagnosis for me as well. two weeks post-op, still have some sciatic pain, but believe it is due to post-surgical trauma...hoping for less & less every day.

[bnlp28]

Thank you so much for your response, I had originally thought that the size of the cysts might have something to do with it, then when so many of my friends and family started noticeing how much weight I have lost, I was beginning to think that it might be a change in weight distribution that was causing it, either way I am in a lot of pain. It is helpful to know that it is not unusual. This is all still so new to me that I am unsure what to think about anything my body is going through right now, not sure what to bring up to the dr? Whether something that I am feeling is real, or in my head? Wheather something is realted to the cysts, or if it is something else? I am very confused still, but I do consider myself lucky to have Dr.s that jumped right on this to fix it as quickly as possible, and a good family willing to go through all of this with me, and put up with all my mental, emotional, phycological, and physical flip flops.
     Thank you again for your answer, it did help me to feel a bit better.

[bratty_girl]

Hi there,
I do not have a tipped uterus, nor did I have cysts on *both* my ovaries. I did have a very large cyst on my left (  you can read my journal entry if you want more information on the size - I dont want to recap it here lol ) that caused me alot of back pain. I think it was mainly due to the size of the cyst. Its alot of weight low on your body and one of my doctors said it simply causes stress on your spine, thus the back pain. Ive since had the mass removed and the back pain has been gone. Hopefully after your surgery you will notice a difference in the level of pain . I was getting rub downs from my husband and when the pain would get really bad I would have to take pain killers, hot showers, heating pads etc.
Sorry to hear you are in so much pain :( Just think April 2nd is coming soon!