Biopsy experience/my story and questions
I don’t even really know where to start but here goes..
I’ll start by saying I am 37 and I in the US and don’t have health insurance. I am working very hard to try to improve my life circumstances by working full time and going to school for my bachelors to get a better job to get health insurance and better pay, but I am in education, so of course I will never make enough money. I also have 3 children and I am trying my best but everything has become so much harder with my health issues getting worse and having no choice but to have to put yourself as a last priority.
I noticed a white spot on my labia almost 4 years ago. Went to countless doctors only to be told “it’s nothing,” it’s yeast,” “lets double check for sti/std,” “here’s some medication.” “we have no idea,” “good luck with that.” In the meantime I also developed severe urinary issues that lead to a “diagnosis“ of interstitial cystitis.
Finally within the last year, I found a doctor who listened when I said I think this could be LS. She had me try clob which did seem to sort of work but I don’t think I stuck with it long enough because my internal pain was also always so bad.
I also have a history of kidney stones and have had 2 emergency kidney stone removal surgeries in the last 3 years. So never sure how much is related.
I am also seeing an endocrinologist (out of pocket) because they are suspecting an underlying thyroid issue because it is a strong family history for me and I am symptomatic. Unfortunately my bloodwork is unremarkable but an ultrasound did show my thyroid being enlarged and multiple small nodules, so the endo is willing to try medication and monitoring to see if it helps or anything worsens and becomes more concerning. But it still feels like I am working in the dark. Its frustrating because my symptoms of vaginal issues may be related but since the specialists don’t talk to each other and coordination or care is so disconnected, it feels like you never really get the right answers.
4 months ago I went to Planned Parenthood and was found to have an overgrowth of lactobacilli and instructed on a treatment plan for that. At my 3 month follow up (one month ago) I had a yeast infection and was given treatment for that. They also recommended I do a biopsy for the skin area for my concerns that sort of come and go or I suspect flare. They generally seem to start out as linear paper cut type sores which are painful, turn into ulcer type sores with white borders and then “heal” into scars. While at the same time constantly having feelings of yeast/uti even though my tests don’t always show infections (Only sometimes)
My biopsy was Friday. The entire appointment was honestly a disaster. I arrived 10 minutes early for my 9 am appointment and was accidentally put into the wrong room. I was told “oops sorry” and had to move from the room and wait in the medical assistants little cubicle for hours. After playing musical rooms I was told there was an ”incident“ (another patient fainted - although I did not know this at the time and sort of freaked out) then after several more patients being taken before me, it was finally my turn around 12pm! By that point I am exhausted and overwhelmed. I still attempted to ask all the questions I had but felt rushed through my questions, given vague answers and felt rushed through the procedure itself. They had to give me two lidocaine shots (because the first one did not work to make me completely numb!) which hurt like hell but the actual procedure of the biopsy I didn’t feel at all. When all was said and done I ran out of there without even being given an aftercare sheet and didn’t notice (I called them later and had them send me one on the portal) and got home at 1pm and took a nap. *also adding that they biopsy was awful because it felt like they were talking about me as if I wasn’t even there. Like they forgot a patient existed and was attached to the body part they were examining. While I am grateful that they have been the only doctors to take this seriously enough and willing to help, it still really hurt my feelings (even if that sounds silly).
The next day as I’m looking over the after visit summary and clinical notes, I realize they took the biopsy in a different spot than they had originally pointed out an ulcerated area that was detailed on an illustration from the previous time I was there. I asked my husband to look/take pictures so I could see. I now see that I have two spots that look similar. The spot they took the biopsy from is a spot that causes me pain and is newer and is red and white. The spot they didn’t take from causes me itching and is older but whiter. So now I am completely confused as to why they didn’t take from both spots or why they chose one spot over the other. I plan to call tomorrow (Monday) but in the meantime I am so sad and stressed and feel like I just wasn’t given adequate information. I assume they issues are the same and that one sample was sufficient. But they did not tell me that. They did not tell me during the examination that “hey you have multiple spots” or “hey you have multiple spots and we will take only one specific spot because….” They also would not recheck to make sure my infection was gone despite my asking. Now I am worried I will have to go through this all over again to check the other spot, so I just don’t understand why they didn’t just take samples from both spots at once. Has anyone else ever had this experience??
Also now waiting for results is awful. Dealing with healing is awful. I am worried about hearing bad results but honestly equally worried about hearing results that are inconclusive or end up telling me absolutely nothing. I am also worried that there are internal issues that are being missed as well. I’ve been able to start low cost counseling services for my mental health but my health issues are making me feel so depressed and anxious and it’s just so hard.
*also adding that I have been reading other peoples experiences on here for years and it is gotten me through all I’ve been dealing with so far, but I’ve never felt brave enough to post.