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,
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.
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?
Oh that is horrible the way these doctors are treating you.. i think i would have smacked them already unfortunately the only cure for adeno is a hysto. but i think you have more than that and also even more technically speaking the only way to firmly diag. adeno is by hysto.
i can sometimes sound like a broken record but i always always suggest seing a reproductive endocronologist.
they primarily specialize in fertility issues so they have the most experience in anything that would hinder that. my regular gyno first found my endometrioma but i had my first lap and he removed it and about half of my right ovary and that was it. i still had pain it came back same side and i went to a RE and had another lap. and he found all kinds of crazy stuff. fused organs adhesions on my bowel bladder kidneys etc. the issue with alot of regular doctors is they honestly just may not know what to look for or what they are looking at which is why you should find one that specializes in endo/adeno.
the two diseases are similar in the way they attack and function they are just occur diferently. adeno is usually due to a previous surgery like a c-section where the endometrial lining beings to grow through the incision out side of the uterus and causes pain and inflamation where endo just happens and no one yet knows what causes it. continous bcp's is currently one of the only non invasive way docs try to control it and you would have to take it continuously. if you allow a period it causes it to flare when the body is trying to shed the lining which is why are periods are soooooo horrible. i do think like i said that yours is not just what they are saying and for a doctor to just let you be in pain is inexcusable. their job is to provide relief and assitance. if they do not want to be bothered they need to find a new proffesion. i am not sure where you are or how willing you are to travl but i can try to help you locate a more useful doc. that would be more empathetic to your issues you are having.
please let me know how i can help. you can email me if you want my email is in my bio.
That sounds horrible!!! I am so sorry for your incredibly long and difficult ordeal- unfortunately the only way they have to definitively diagnose endo or adeno is by actually going in and seeing it.
Brandi is right, reproductive endocrinologists are amazing. They deal with this stuff every day, and they know what they're looking for. They also tend to be more understanding, nicer, sympathetic, and willing to try new things to help solve your problems. If you can get your insurance to cover going to one, I'd say its totally worth it.
And it's hard to find a BC pill that works with your body, but when you get them, don't take the placebos. There is no medical reason for you to have a period, and when you're on BC pills the lining of your uterus is much lighter anyway. When you have your period, it signals the adhesions to cramp and bleed as well, which causes a ton of pain. I take my pills through without taking the placebos, and even though I'm always in pain, I am very grateful to not have period pain.
As far as your insurance goes, your doctor will need to write a special prescription, noting that you should not take the sugar pills at the end of the pack. You will need to call your health insurance and find out what you need to give them to allow you to fill the prescription early- usually a faxed copy of the doctor's written prescription from the pharmacy is enough.
Hope this helps! Good luck, and keep on your doctors. xoxox
I agree with the others, and can't believe that the Dr "diagnosed" Adeno when the only true way to diagnose is by removing the uterus and disecting it I know it can be SUSPECTED Adeno but never an actual diagnosis until the hyst is performed. I'm sorry you are dealing with this. It's very easy for a Dr to tell us its all in our heads! I hope by now you have found some relief/answers.
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