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Chronic pain-low quality of life. I need advice!!!

Posted , 3 users are following.

marissab10
marissab10

Hi,

I've never used an online forum but I'm desperate and in need for some advice from women maybe having similar experiences. I'm 22 y/o and have had the same sexual partner for the past 2 years and have no STDs. I have a history of ovarian cysts. Last February I had a cyst the size of a grapefruit that nearly resulted in torsion, and was rushed into immediate surgery. I have EXTREMELY heavy periods that last anywhere from 7-10 days. After trying 5 diff birth controls and having horrible side effects, I no longer will take the birth control, and my gyno even agreed I should not be on it. Since last October tho I have never felt the same. before a camping trip I was having itching and burning and was told I had a yeast infection. however i also had symptoms of uti and was taking the combo of yeast infection meds and OTC uti meds. These symptoms continued to recur. I'm at the drs office at least once or twice a month. everyday that goes by I am in chronic, debilitating abdominal and pelvic pain, vaginally itching, strange discharge, frequency to urinate, and back pain. A few occasions I believed I had a yeast infection, my results came back negative, but some of the times they came back positive. I've been tested for STDs probably 5x in one year and do not have any. I have also had BV a handful of times. 2 weeks ago I ended up in ER again for the unbearable stomach pain. was told I had a uti and another ovarian cyst and again put on antibiotics. 2 weeks later and the pain is back. I have urinated 16x today. I took an at home pH test that said I had a uti and started taking cranberry pills again.

I have been seeing the same gynecologist for over a year now (he also was the dr that did my surgery) but I don't feel he is taking me seriously. He told me he believes my itching and vaginal discomfort is from dermatitis aka ezcema. I was on a steroid cream for a long time that only worked temporarily before symptoms came back worse. I have expressed to him that I am certain I have Endometriosis and that something else is going on that is causing these other symptoms. he says he does not want to do another surgery on me unless he sees something alarming. I asked why I continue to get the cysts but he seems to think this is normal and that none of the cysts are large enough to operate on. I've been desperate to see another gyno for a second opinion but getting an appt has been a nightmare and oftentimes I have to cancel because of my work schedule and commute it takes.

I would like to mention that I have done everything possible at home to prevent flare ups. I wear 100% cotton underwear and pads/liners. I use unscented detergent and body wash. I do not douche or use feminine washes or wipes. I pee after sex and as mentioned have only had sex with my boyfriend of over 2 years.

I'm not sure if the itching or pelvic pain is related to the cyst and period pain or the bladder pain. I honestly have no clue what is wrong with me. my quality of life has decreased. there has not been a single day in the past 8 months where I have not had some combination of the abovementioned symptoms. I am so depressed and in so much discomfort and pain I am at my wits end. I have been to the ER so many times to be practically laughed at and given another antifungal and antibiotic- or forced into trying a new birth control which I now readily refuse to take. I have researched about all sorts of scary things like PID, interstitial cystitis, PCOS, Endometriosis, vulvodynia, etc, etc. I've probably convinced myself I have all of the above but I truly do not know.

If anyone has ANY tips, recommendations, or ideas I would REALLY APPRECIATE any and all feedback.

thank you

0 likes, 2 replies

2 Replies

  • bill20925
    bill20925 marissab10

    Posted

    Its complicated. Long shot is a good Interventional Radiologist may be able to help. They deal with a lot of fibroid and pelvic congestion disorder. But find an experienced one. Usually in top hospitals or they have extensive track records. This is very advanced stuff. Good luck!!

  • denamj11
    denamj11 marissab10

    Posted

    Sounds like you may have an overgrowth of good bacteria, which could be cytolyctic vaginosis. Try a baking soda douche or baking soda paste. google it. it helped me one year when i was itching and burning.

    It also sounds like you could use pelvic floor therapy.

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