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Been in horrible pain for 7 months! Low back pain, pelvic pain, painful...
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Been in horrible pain for 7 months! Low back pain, pelvic pain, painful periods!

I will try to summarize as brief as possible. I really appreciate someone's insight cause doctors have been no help. I started to get SEVERE low back pain, flank pain- Dr's & I thought it was back problem. Got x-ray of my back- nothing abnormal, just normal wear/tear on joints, etc that comes w/age ( I am 38 yrs. old) This pain then progressed and changed; I developed pelvic pain, was real nauseas, super bloated, felt like i had to pee all time. ( did tests, bladder & kidneys are fine) The CAT scan at the ER showed I had OVARIAN CYST on left ovary. Was referred to OB/GYN, ( who was a jerk) told him I was in so much pain but he discounted it saying " you shouldnt be in so much pain w/a 5 cm Dermoid cyst..." He put me on Provera for 2 wks hoping to shrink cyst- didn't help, same symptoms/pain. He didn't think surgery was necessary.( I didn't have insurance!!) I couldnt take pain anymore. I didn't go back to him.
Finally got on payment program here in TX called Carelink to pay for surgery. Dr. agreed cyst had to come out. Had laparoscopic surgery July 2010, they removed dermoid cyst & ovary/tube.
I have WORST TIME recovering. It has taken me months! Developed several infections in incisions, which Dr. should have "caught", but they dropped the ball..... I had surgery at a "teaching hospital", which, sorry, but they are still learning and way too busy to really give you the time.
Since then I have had MULTIPLE problems: horrible pain around incisions, some pelvic pain, hip pain, super exhausted, and can barely walk some days. The 1st 2 months were the worst. Also, around my 2 incisions there is this "hardness" and slight swelling/bruising. The surgeon who did my surgery said " I dont know what that is.....maybe scar tissue/adhesions?" Basically they referred me to Pain Mgmt. cause they didn't want to deal w/me. I am outraged! It is 6 months later and I still have the "hardness" and pain around incisions.

What was interesting is my back pain DISAPPEARED right after surgery. I thought "okay, the cyst gave me back pain, cyst is gone, low back pain is gone."
NOT! Low back pain has returned ( last couple months). I now have extremely painful periods and in bad pain the WEEK before period also. I still have to take Hydrocodone during these times, that is how bad pain is. Before my surgery I DID NOT HAVE painful periods; I had a little PMS and cramps like any woman, but not like this.
What is going on w/my body? I saw a different DR. last month, he thinks maybe Endometriosis but he did not mention he saw indication of that on Ultrasound. He gave me birth control pills
which I could not tolerate ( severe MIGRAINES!) Had to stop after 2 days.
I don't know where to turn. Is it because I only have ONE OVARY NOW that I am in so much pain and getting these symptoms? As I recall back on my life I used to get pain w/intercourse but I never thought anything of it. I used to be on birth control pills all through my 20's, but haven't been on them since age 30 maybe.
( I am now 38) What can I do?? I need a specialist who really will get to the bottom of this.
I dont want to have kids but I want my life back; i cant deal w/this pain anymore. Thank you for reading this.
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Avatar_f_tn
Wow, sounds like you have been given the run around with doctors and experienced a terrible time. I would have thought that when you had your surgery, they would have noticed if you had Endometriosis? Endometriosis is difficult to pick up on ultrasound unless you have a Endometrioma cyst - which could be causing you the pain.   Maybe it would be worth checking the reports from the last surgery you had? I take it you are in the US (I am in the UK, and our healthcare system is very different). I would try and get a 3rd opinion.  Good luck & Wishes.  Yvonne
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Avatar_f_tn
I am so sorry to hear about your story and long term pain.  I can't believe the first doctor said that size of dermoid would not cause pain!  That is terrible! :(  I can relate to the pain and hardness you describe around your incision.  I am three and half years out from my surgery and I still have pain and hardness around my scar.  Each person heals in a different way and scar tissue is different for everyone.  

Sometimes women have multiple dermoids.  So, if your severe pain persists with your cycle...then you may want to ask for another transvaginal ultrasound to be sure you don't have another dermoid.  I wish I had a suggestion for you on how to make the terrible symptoms and pain go away.  One thing you may try is taking ibuprofen for the week before your period is due and continue taking it through the first few days of your period.  It is an anti-inflammatory and works best when it is built up in your system rathan than taking it for the immediate pain.  Heat packs and rest may be the only option during that time.  Hopefully, as more time passes, things will get less painful.  

You just didn't have any option other than to have that dermoid removed.  It is frustrating to have to adjust to the new body changes that result from the surgery.  Endometriosis can be a long-term pain issue that often doesn't show any signs on a scan.  The fact that you do only have one ovary may be leading to a hormonal imbalance that has contributed to these new symptoms.  Usually, over time the remaining ovary will adjust.  Six months is long...but it may take even longer for your body to adjust.  I felt considerably better a year and half after my surgery.  In the meantime, try to hang in there.

You know your body the best.  So, trust your instinct and insist on another transvaginal ultrasound to rule out another cyst.   I hope you feel better soon and each day brings more healing!  

Shelly
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Avatar_f_tn
Thanks so much for answering and for your insight. It has been a nightmare for sure! As far as the reports from my surgery, I just got my records yesterday. I looked at the Pathology and Operative reports and there is no mention of Endometriosis or cyst. It mentioned the dermoid on left ovary (which they removed both) and how the ovary had many follicles and small cysts within it. I dont know, seems like there should be other reports that I don't have. I went back for followups, had a couple more Ultrasounds and they didn't mention that I had another cyst. I dont know something still seems fishy to me. I am going to double check that I got all my records.
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Avatar_f_tn
Thanks so much for your support and your response! I am glad I am not the only one who has had pain and that hardness around incisions way after surgery. It sure is frustrating cause I can't wear jeans, lol. My stomach just still is really bloated. Anyhow, that is the least of my concerns. Since I now have insurance, I went to a private OB/GYN last month and he did another ultrasound. He said my uterus and Right ovary looked perfect. He DID see tiny (3mm cyst) but told me don't worry we all have cysts and they will go away. So, I guess if there was Endometriosis or dermoid, he would have seen it. He recommended me going on the pill, but like I said it gave me bad migraines. ( told him that prior but I was willing to give it a go) ; stopped the pill.  I haven't followed up w/him. I need a specialist. Are there any natural hormone things I could take? As far as ibuprofen, I have been taking LOTS for almost a yr. I think my body is reacting to it cause last few days I have been really dizzy/faint. ( I take other medications also)
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It's very difficult to see endo on an U/S. The only way to find out if you have it is to get surgery. The doctor who did your first surgery may have not known how to look for endo. I hate to say this, but it may be time for another surgery from a specialist to see what is going on. At least it will you give you some peace of mind!
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Avatar_f_tn
Thanks Diva2317 for your response. ugh, i really do NOT want another surgery cause I am still having bad pain from the first. There has got to be another way to find out and to find a treatment that won't cause me more medical problems. Anyhow i will do some more of my own research in the meantime......
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