I was hoping to get this update posted before now but ended up dealing with more medical drama. I can never get a break when it comes to this kind of stuff. I don't even know where to start because it has been such a nightmare again and I am not sure anyone really wants to read it but if I can help one person by sharing my story to not have to go through what I have to find help it will be worth it. I have mainly been dealing with vaginal problems again and have seen 3 different doctors about it since April. Each one had a different opinion. I also found out the NP I saw in February wrote in my records that she thought I should see a psychiatrist because all my blood tests were normal even though she saw the blisters. You can't mentally give yourself blood blisters. Crazy!! Below is a recap of what all has happened since then and it's a lot. If you would rather not read it I understand so just skip ahead to the good stuff.
I went to see another doctor after that in March. He was a primary care doctor and was recommended to me because he was supposed to be good at diagnosing hard cases. It turned out he had no idea what Vulvular Vestibulitis was and started Googling it. After reading up on it a bit the only thing that seemed to stand out to him was that it says it can cause painful sex and was just focused on that which I thought was odd and it was starting to make me very uncomfortable. Having sex is the last thing on my mind right now, I just want to be able to sit without pain and burning. He was suppose to find me a doctor that knew more about this and could deal with it but that never happened. I ended up finding a Vulvar clinic at the University Hospital here on my own and asked for a referral to get in but he was not able to help me with that. I ended up calling the office where the NP was that saw the blood blisters and got them to get a special referral for me to be seen there because they did not take my insurance. It was a 3 month wait but I still made the appointment anyways though.
In the meantime I went to see another gynecologist that could get me in sooner and was suppose to know about VV. After telling her my history and examining me she thought I had mucus membrane pemphigoid and wanted me to see a dermatologist she knew. She even made a phone call to her while I was there so I could get in sooner so I made an appointment with her the following week.
After seeing the derm she did not think it was MMP but thought I had LS and possibly LP too. She wanted me to try the Clobetasol again for 2 weeks which I had tried a few years ago but it just made the burning worse so I was not in favor of that and since I was going to see the vulvar specialist at University hospital I decided not to try it again until I saw her. This doctor also got very upset during the appointment because she thought Emilia was recording what she said. Emilia was doing that because I asked her to since it is really hard for me to remember everything that is being said during these appointments and I have never had a problem doing that before. Won't be doing that again now. Needless to say that appointment did not end well.
I finally got to see the specialist at University Hospital 2 weeks ago. It did not go well either. The only records she had when I got there were the ones from the NP which basically told her nothing except that they thought I was crazy. I did bring all the other records from the other doctors with me for her to look at but when she saw them she said she didn’t have time to go over them so I just tried to tell her what was going on. After that she started by looking in my mouth and was concerned with a bottom tooth on my right side. I have noticed that I can see the bone where the gum is there and it has been inflamed and bleeding a lot but she said it had a white spot on it that I had not noticed before. When I saw the dentist a month ago she never said anything about it. She had Emilia help hold my mouth open so she could take a picture of it which I found rather odd. She then looked at the skin on my back, stomach, arms and feet. After that she did the vaginal exam and used a speculum. She was concerned with the amount of discharge I was having but I told her that I normally get that during this part of my cycle but she wanted to look at it under a microscope anyways. She then did a qtip test and found the area that is usually the most painful on the bottom of the vulva where is it quite red. She also saw what was left of the blister I thought I had on the left upper lip and felt it was not a blister but something I could have had for a while and was not concerning even though I showed her a picture of what it looked like in Feb. She seemed to think that what is there now is different even though it is in the same area. She also said the blisters could just have been from biting and or friction which I thought rather odd. After that I think she said she did not see any signs of mucous membrane pemphigoid or Lichten Sclerosus/Planus but wanted to do a biopsy. I was really caught off guard by that so I asked her what she would be looking for then and she said to check for cancer since that area was not healing but I have had periods of time where it goes away so that does not make sense. If that area had been red and inflamed the whole time why hasn’t it continue to get worse or spread?? The cancer thing totally freaked me out because the other doctors I had seen before had never brought up cancer. After that she asked to take a picture of that area and called in a nurse. At that point, I was very upset and trying to hold back tears. She did nothing to try and comfort me. When she was done I told her that I said that I did not want a biopsy because what else was it going to show besides cancer and she said she could not guarantee it would show anything. I do not want to be cut there on the small chance that it could be cancer then be left with more pain and still no answers plus I can’t afford it insurance won’t pay for anything until I meet the $2500 deductible. She then thought it would be better to see an oral pathologist there instead and biopsy my mouth where the white spot is?? I once again told that that I had just seen the dentist and they never said anything about it to which she said she was not going to argue with me but I was not arguing with her. I asked her about trying another steroid cream that was less potent than the Clobetasol but she said she could not prescribe anything without a diagnosis but even if she biopsied that site she still could not guaranteed I would get one? At that point I was becoming even more frustrated, confused and upset so she finally agreed to let me try the another steroid cream I had heard about called “Triamcinolone” being less strong and not as likely to burn as much. She said to try it for 2 weeks and not use it on the lips but never said anything about coming back to recheck the area. I also tried to tell her that the derm I saw before her said it was LS/LP but she didn’t care and went on to tell me they are very different things but can’t really remember what she was saying after that because I was so upset. She then decided not to look at the slides because she said she didn’t want me to have to pay for anything else and threw them in the garbage which was really odd. I asked her if she could send me a summary of the visit since I was so confused as to what was said at this point and she said I could sign up for the patient portal and that was the only way to get it to me which I said was fine. That was it. I left there feeling very confused and even more discourage and defeated than when I walked in because now I have to worry about having cancer now. The thing is I have been dealing with this problem for a long time now and have had periods of time where it feels normal down there so I really don’t think it is cancer but it will be in the back of my mind now. When I got home I called the gynecologist I saw that said she thought I had MMP but when I told her that the University Doctor did not agree with that or the LS/LP diagnosis from the derm she went me to and wanted to do a biopsy she agreed with her even though she never said anything about this possibly being cancer when I saw her. I am just so confused as what to do now. Even if I agree to the biopsy I would never let the University doctor do it because of how unkind she was towards me. I have to find a doctor that I can trust and feel comfortable with before anyone is cutting me. I started to use the Triamcinolone ointment but it made me burn worse just like the Clob did so I am in a full flare now.
I finally got to see the specialist at University Hospital 2 weeks ago. It did not go well either. The only records she had when I got there were the ones from the NP which basically told her nothing except that they thought I was crazy. I did bring all the other records from the other doctors with me for her to look at but when she saw them she said she didn’t have time to go over them so I just tried to tell her what was going on. After that she started by looking in my mouth and was concerned with a bottom tooth on my right side. I have noticed that I can see the bone where the gum is there and it has been inflamed and bleeding a lot but she said it had a white spot on it that I had not noticed before. When I saw the dentist a month ago she never said anything about it. She had Emilia help hold my mouth open so she could take a picture of it which I found rather odd. She then looked at the skin on my back, stomach, arms and feet. After that she did the vaginal exam and used a speculum. She was concerned with the amount of discharge I was having but I told her that I normally get that during this part of my cycle but she wanted to look at it under a microscope anyways. She then did a qtip test and found the area that is usually the most painful on the bottom of the vulva where is it quite red. She also saw what was left of the blister I thought I had on the left upper lip and felt it was not a blister but something I could have had for a while and was not concerning even though I showed her a picture of what it looked like in Feb. She seemed to think that what is there now is different even though it is in the same area. She also said the blisters could just have been from biting and or friction which I thought rather odd. After that I think she said she did not see any signs of mucous membrane pemphigoid or Lichten Sclerosus/Planus but wanted to do a biopsy. I was really caught off guard by that so I asked her what she would be looking for then and she said to check for cancer since that area was not healing but I have had periods of time where it goes away so that does not make sense. If that area had been red and inflamed the whole time why hasn’t it continue to get worse or spread?? The cancer thing totally freaked me out because the other doctors I had seen before had never brought up cancer. After that she asked to take a picture of that area and called in a nurse. At that point, I was very upset and trying to hold back tears. She did nothing to try and comfort me. When she was done I told her that I said that I did not want a biopsy because what else was it going to show besides cancer and she said she could not guarantee it would show anything. I do not want to be cut there on the small chance that it could be cancer then be left with more pain and still no answers plus I can’t afford it insurance won’t pay for anything until I meet the $2500 deductible. She then thought it would be better to see an oral pathologist there instead and biopsy my mouth where the white spot is?? I once again told that that I had just seen the dentist and they never said anything about it to which she said she was not going to argue with me but I was not arguing with her. I asked her about trying another steroid cream that was less potent than the Clobetasol but she said she could not prescribe anything without a diagnosis but even if she biopsied that site she still could not guaranteed I would get one? At that point I was becoming even more frustrated, confused and upset so she finally agreed to let me try the another steroid cream I had heard about called “Triamcinolone” being less strong and not as likely to burn as much. She said to try it for 2 weeks and not use it on the lips but never said anything about coming back to recheck the area. I also tried to tell her that the derm I saw before her said it was LS/LP but she didn’t care and went on to tell me they are very different things but can’t really remember what she was saying after that because I was so upset. She then decided not to look at the slides because she said she didn’t want me to have to pay for anything else and threw them in the garbage which was really odd. I asked her if she could send me a summary of the visit since I was so confused as to what was said at this point and she said I could sign up for the patient portal and that was the only way to get it to me which I said was fine. That was it. I left there feeling very confused and even more discourage and defeated than when I walked in because now I have to worry about having cancer now. The thing is I have been dealing with this problem for a long time now and have had periods of time where it feels normal down there so I really don’t think it is cancer but it will be in the back of my mind now. When I got home I called the gynecologist I saw that said she thought I had MMP but when I told her that the University Doctor did not agree with that or the LS/LP diagnosis from the derm she went me to and wanted to do a biopsy she agreed with her even though she never said anything about this possibly being cancer when I saw her. I am just so confused as what to do now. Even if I agree to the biopsy I would never let the University doctor do it because of how unkind she was towards me. I have to find a doctor that I can trust and feel comfortable with before anyone is cutting me. I started to use the Triamcinolone ointment but it made me burn worse just like the Clob did so I am in a full flare now.
I week later there was still no records from
University Hospital so I called to see where they were. They had no record of my visit
when I finally got through! I had to be transfers to the right place and had to
leave a message for someone to call me about it but no one every called.
Someone from the dentist school did call that afternoon though. They said they
had gotten a referral from the Dr to be seen there but I told them I had
no idea what for. The lady that called tried to read the information that was
sent to them but I was still very confused as to why she wanted me to go there.
They also told me they don’t take insurance and it would be between $129.00-$200.00 just to be seen. I don't have the kind of money so I am not going there right now. They lady I talked to
said I have until September if I change my mind.
I called University Hospital again the next day to see where my records were since I still had not heard from them. Once again I had to leave a message and wait for a call
back. I finally got one a few hours later and talked to a nice lady. I found out
they sent my summary to my home supposedly on Sunday the 11th. The doctor I saw never said anything about mailing them. She was adamant that I go
through the online portal to get them but I didn't have them. When I asked what
address they sent them to she told me my old address How in the hell did that
happen??? I don’t live there. I think I
remember them asking my address when I signed in and it was the correct one. At this point I was very upset. She was very
understanding though. I told her I still could not access the records online
either. She gave me a number for website help and told me to contact a patient
representative because she agreed that none of this should have happened. I
contacted both parties. The website guy said he would try to have it fixed by
3:00. The patient representative seemed to be willing to help after telling her
what happened. Not sure what she is going to do though. She is suppose to look
into my options and get back to me. I never heard from her again though. I was
finally able to access the records from the online portal that afternoon. I
still didn't have copies of the photos though. The lady I spoke to that morning emailed and told me they
could be sent but would be in black and white how is that supposed to help me
figure out where the problem is since the problem is redness and irritation. I finally got a copy of them a few days ago and thankfully they were in color. There
are so many things wrong with the summary she wrote. She obviously did not
listen to what I said very well. How did this go so wrong?? I wish
I had never gone there!
I made an appointment with a new primary this week. I pray she will be able to help me. If not I don't know what I am going to do next. I am in a lot of pain right now so If anyone reading this has any suggestions or thoughts please let me know.
One a happier note Emilia decided to try something new and is going to Esthetician School. If you don't know what that is, an esthetician is a specialist in the cleansing, beautification and preservation of the skin on the entire body but particularly the face and neck. She is learning about facials, waxing, makeup, as well as more medical types of treatments. Starting in July, she will be available at the clinic in the school for discounted rates. Right now she is able to offer natural, medical or oil-based facials and microdermabrasian treatments. Let us know if you are interested in have a service done.
Finally, a new recipe to share with you. This Whole 30 Shepherd's Pie. You would never know it's good for you. It's a bit of work but worth it as the whole family loved it.
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