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adenomyosis, cysts and birth control, OH MY!
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DesperateandHopeless posted:
I'll probably have to make a few replies to fit my whole story on here. I want to start from the beginning, and hopefully someone will be able to help me. I am 29 years old. March of 2012 i was diagnosed with Adenomyosis by a pelvic pain specialist of Vanderbilt University Medical Center. I had been having pelvic pain since May 22, 2011, which started the moment i had sex for the first time with my wonderfully patient and sympathetic boyfriend. The pain was excruciating, deep and nothing i had ever experienced before. I thought maybe it was because i hadn't had intimate times with anyone in a while, and he is bigger than average He lived out of town, and so i only saw him once a month. So the following month when it happened again, I again ignored it, because i also had been checked for STD's just 3 months previously, so i knew it wasn't that. However, the 3rd time it happened, i made an appointment with my then gynocologist. I started feeling heaviness in my uterus, throbbing pain almost constantly, and terrible pain during sex. So my gyno had suggested i be tested for bacterial vaginosis, which i have had before so then i thought " yea that must be it" and he treated me for it with antibiotics while i waited on the results. Well, the antibiotics didnt seems to be helping, and when i got my results, i was negative for bacterial vaginosis. The following month (September) i had an appointment to be tested for interstitial cystitis, which i was also negative for. I had had enough tho. I was sick of being in pain. I demanded an ultrasound ( the ultrasounds were performed there at the office). I told my gyno the pain was just too much to take, and i felt like he was thinking i was making up my pain to get narcotics. I didn't leave the office, i waited about 3 hours, it was close to closing time, and then the ultrasound tech agreed to check me out. She found a cyst 3.5 cm. So my gyno came in and said that it shouldn't be bothering me but since i have had pain for, at that moment in time, 4 months, he said he would remove the cyst laproscopically. I was relieved. Finally, i was going to get rid of this pain. October 2011 i went in for surgery, and when i woke up he had discouraging news. He didn't find the cyst (sadness), he said perhaps it had burst prior to surgery. He removed my filshie clips that were ironically, placed in October 2010 ( is that the correct use if "ironic" or did i pull an alanis?). (HAPPINESS), but he informed me and my boyfriend that since the clips had been there for a year, there was scar tissue, and removing them was not the same as a reversal surgery (sadness). He said he removed them because the clips have been known to cause pain in some women, so hopefully i would feel better once i healed from the surgery. The following month, at my followup appointment, i told my gyno, not only was i not feeling better, i was feeling worse. He was very sympathetic when he said he was sorry he didn't have any other ideas or options, other than a hysterectomy (SUPERSADNESS!). I immediately broke down into tears and begged him to please help me. There was nothing he could do he said, maybe i needed to try all my other options, seeing a gastroenterologist to eliminate every possibilty before i made the decision about my uterus. I then moved in with my boyfriend, and began searching for a gastroenterologist. So January and February 2012 consisted of appointments with the gastro dr, and i had an Upper GI endoscopy and a colonoscopy. Nothin. The gastro dr did say he did detect a cyst in my uterus/ovary area, and he referred me to an Ob/Gyn. So it was the beginning of march 2012 i met with her and that was my last visit to see her. She was totally robotic and cold. She Was very rough during the examination, and i even began crying after she was done with me. She said she didn't understand if a hysterectomy would make me feel better, then why wont i do the procedure. I told her i wanted to have a reversal,
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DesperateandHopeless responded:
and she called me delusional. I then began crying more and she accused me of being depressed and i said yes of course im depressed, this pain has been going on too long without answers! i left and never went back. I went online and found Vanderbilt University Medical Center, and it was at my first appointment, March 19, 2012, i was diagnosed with adenomyosis by a pelvic pain specialist. Finally i had a diagnosis, but then i also had the same terrible news that the only remedy was a hysterectomy. I begged for other options, and she came up with Mirena, so i scheduled to have it place in. I started having bad left side pain, which was different, normally it was on the right, and i told my dr this when i was about to have the Mirena placed. She kinda nodded and went on with the placement, which was excruciating. my cervix wouldnt "cooperate" and she had to " manually open " my cervix. One of the most painful things i ever felt!! That was April 16, 2012. She sent me home with a prescription for lortabs for 2 days since i was in obvious pain. she said it was possible it may " fall out" and if it does, then to keep it, so she can place a new one back in ( something about my insurance needed proof?) Well, i kept hurting, and so i kept calling her back to tell her about it. it was a week before she called me back, and the only advice she had was " go to the hospital" if i was hurting. April 27, i felt i was in labor, and when i sat on the toilet i had a contraction, and the Mirena came out of me. My boyfriend took me to the hospital, and an ultrasound showed i had an ovarian cyst, 6.5 cm on my left ovary! i went home and the next day my gyno called and said she got the report of me being in the hospital, and that i could throw away my Mirena ( i still have it tho). I told her that i tried to tell her that i was feeling pain before she placed the Mirena, and she kind changed the subject by saying she called me in more pain medicine. May 4, 2012, i thought i was dying. Again we went to the E.R., and i was rushed to a room. Ultrasound showed the cyst had grown to 8 cm! so they kept me overnight trying to control my pain. did not work! so i was scheduled for surgery the next day, and when i woke up i was told i had to have my left ovary and tube removed, due to the cyst had grown overnight to 10cm, was hemorrhagic, and had ruptured, and blood was all over my insides,and had made things stick where they shouldn't have been. ( seems far fetched but thats what i was told). so then i go to my followup (june) and the only option that my gyno has at that time was Birth Control pills. So then i began the Lo-Ovral. July 7 was my last period ( after 5 days of placebo pills) and since my periods last 2-3 days, i started the Lo-Ovral again on July 9. July 14, i had a sharp pain on my right, and then began bleeding. Back to the ER! Best thing they came up with was i had a cyst burst. yay. I followup with another gyno, not my usual one, and she said dont take the placebo pills, just continue with the BC pills. well that doesnt work, since my insurance wont pay for it but in a certain amount of time. so i know it takes me 5 days of placebo to start a period, and it takes 4 days after im done with the BC pills before the pharmacy allows me to have it. this happens 3 times in a row. September 17, i tell her at my appointment that it doesnt seem to be helping either, im still hurting. so she just changes the birth control! Now im taking Microgestin, and she wanted me to continue to take it with out allowing myself a period. I told her that i think i should allow myself to have one so i can be "clean" before starting a birth control that she believes my insurance will pay for sooner so i can take the pills continuously. I thought i should jus tog ahead and have a period, being it takes me 5 days before i have one off of the birth control, and i ended up getting it refilled after 4 days. so my body was preparing for a period and then was halted, in a way.
 
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DesperateandHopeless replied to DesperateandHopeless's response:
So i allowed myself to have a period, and for 2 weeks it was black and tarry, never red. October 1 i started the Microgestin and after a week i started feeling sharp stabbing pains on my right side, in the ovary area, in the crease of my right leg, and down my right thigh. so i called my gyno/ pelvic pain specialist again and she schedules an ultrasound october 11, since i have 2 girls, and my boyfriend was working out of town, it was easier than going to the hospital. so during the ultrasound the tech finds a white splotchy place. She cant say what it is for sure, but she says it could be a fibroid or something else. My gyno/pelvic pain specialist called me the next day and said it was a new place where adenomyosis is forming? weird ive seen my ultrasounds and ive looked at some online and adenomyosis is a black circle lookin thing. i havent been able to find an ultrasound that shows a white splotch. so when she told me it was the adeno i told her i was in pain and that aleve wasnt helping. she says i only have a follicle on my ovary, it shouldnt hurt, and if i hurt that bad go to the hospital. she knows i do not have license, so in pain, i took my girls with me, on the bus, to the ER and waited for 5 hours in the waiting area, and by the time i got back there i told them i had the ultrasound, and it was my adeno pain, and i had to get my girls home and in bed. so they gave me a prescription and sent me on my way. im still hurting, sharp stabbing pains on my right side ovary area, and sharp pain in my right leg. what the heck? please someone tell me what the heck is happening to me? what is that white spot?
 
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Anon_6061 replied to DesperateandHopeless's response:
I was going to reply a few days ago but don't really have much to offer. It's good that interstitial cystitis was ruled out. I know women who've had hysterectomies for what ended up being IC which of course the hysterectomy didn't fix.

I know adeno can be hard to diagnose but according to Mayo - http://www.mayoclinic.com/health/Adenomyosis/DS00636/DSECTION=tests-and-diagnosis - u/s or MRI is sometimes used. But I have no clue what it looks like on imaging.

I've read that sometimes some of the adenomyosis can be removed kind of like they can remove fibroids (myomectomy) instead of removing the uterus. But having this surgery can result in hysterectomy if not explicitly stated on the consent form that no organs are to be removed. Also, there are probably a limited number of gynecologists that can do this more delicate surgery.

The gyn who was very rough with your exam and said she didn't understand why you wouldn't agree to a hysterectomy and called you delusional sounds downright mean so I can understand you not returning to her.

I wonder if you get settled on a certain birth control pill if it will stop the pain. Your doctor should be able to write the script for your insurance to cover continuous use (no placebo pills). Sometimes it takes a few months or more for the body to adjust to a certain birth control med.

Let us know how things are progressing.


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