Swelling+Itching. Sharing my experience and also looking for remedy!
Posted , 7 users are following.
Never did I think I would post my issues online. But after reading everyones stories, I feel less lonely and more comfortable with sharing my unbearable journey. I want to share my story in hopes to find relief/help and hopefully lend a hand to others who are also going through the same problems.
My problems started approximately two years ago when I was diagnosed with HPV. The thought of my chances of getting cervical cancer scared the crap out of me and brought me to tears. The doctors told me that HPV had no symptoms and since I am young (I am currently 24), my immune system would eventually fight it off. A few months later I would sometimes have yeast infections or Candidiasis but nothing that interfered with my life. Four months after I was diagnosed with HPV I started experiencing swelling inside and outside of my vagina. I've gone to 9 doctors, all of which who told me that I had some signs of yeast infections or sometimes they diagnosed nothing at all and the symptoms definitely didn't come from HPV. They recommended that I change my shampoo/ wear cotton underwear/ exercise less to avoid sweat and moisture/ take probiotics.. etc everything a doctor would typically suggest but nothing has worked so far. One doctor also prescribed me fluconazole (take once a week for 36 weeks) which also hasn't worked. Another doctor I saw was shocked that I was on fluconazole for so long and told me to get off and prescribed me suppositories and creams which also hadn't worked. It has really taken a toll on my life. I no longer exercise in fear that I would make my symptoms worse. I cannot wear tight leggings/jeans/sometimes underwear (I feel a lot better when I don't wear underwear which then led me to think that it was the soap or material of the underwear I was wearing. I tried a few different soaps/ also bought countless underwear's but so far nothing has worked...). Sometimes I could not walk properly because of how swollen I was down there.
Four months ago I saw a Chinese chiropractor who told me that my back was crooked and had it straightened. I always thought my problems were somehow caused by my back because my swelling started a little bit after a boxing class two years ago, but all doctors told me that my vaginal problems have nothing to do with my back. Which I believe to a certain extent but I have found that my swelling has died down a bit and is not as intense as it used to be. Then three months ago.. as if it couldn't get any worse. I moved back to my home country and started experiencing severe itching/ stinging on top of the swelling. I come from a country that has hot and humid summers which could have added on to my problems. In the mornings I feel a lot better.. I think the swell inside my vagina doesn't feel like it's dropping due to gravity if that makes sense to anyone? The doctors at home told me there were little signs of bacteria/ yeast but nothing suspicious and no diseases/ same as my previous tests. One doctor prescribed me allergy pills which made my symptoms worse and I had trouble peeing. I still plan on going to different doctors and trying out different treatments and promise to share my process and the day I restore my health. The one good news I have currently is that my HPV has gone (I found out two months ago YAY but all other symptoms are still here)
From the past two years.. I have learned a few things. When you think something is wrong with your body. Something is definitely wrong. Doctors have told me not to worry and that it is typical for females to suffer from reoccurring yeast infections (which I understand) but when my tests all came back negative, they told me they found nothing and had no other treatment as if I have tried EVERYTHING and turned over all stones just by giving me a pap smear and that the swelling might just be all mental. They said I was stressed and I might be imagining all these problems. I was so angered by that response that I broke out in tears telling them that I've lived in my body for 24 years. How would I not know if something was so obviously wrong to which the doctor looked with a blank stare and said he had no answer. My advice to everyone out there with similar issues is to never stop searching. You know your body the best and by experimenting/ searching for different remedies we will find a way to become our normal healthy selves.
Here is a list of symptoms I have experienced currently.
- swelling inside and outside of the vagina.
- severe itching/ stingy/ burning feeling
- some days I would feel sore in my inner thigh/ legs/ lower abdomen (similar to the feeling when you are about to get your period)
0 likes, 26 replies
lynn41704 jacky06086
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Hi Jackie
I feel really sorry for all your suffering at such a young age. I am nearly 40 years older than you. I had many appointments with my doctor for vulva soreness and burning but no itching or discharge. I was given treatment for thrush although I had no thrush symptoms and various creams and lotions to help the soreness and burning but nothing helped. In desperation I made an appointment to see a gynaecologist who I had seen in the past with a different problem. He listened to what I had to say, examined me and looked at the box I had taken with me containing various creams and lotions and details of thrush treatments. What he said next was a shock, he told me to throw away all the creams and lotions, to only wash with warm water and that I would be better in two weeks. I left his consulting room believing I had wasted my money seeing him and felt very down. That was just over a week ago, I have followed his advice (although it was really difficult) and I now feel 75% better already. I know my experience does not help you but PLEASE don't give up getting yourself sorted, there is a doctor out there somewhere that can help you. You are only young and have a long life in front of you and need to live it to the full without your distressing health problems. Take care of yourself and don't give up.
jacky06086 lynn41704
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Hi Lynn,
Thank you for your advice! I haven't taken any medicine for a few weeks now but the symptoms are still on and off. I will continue to seek help and I hope you get better as well! Please do keep me updated as I would like to know if your method is working.
Gillian1956 jacky06086
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jokow22 jacky06086
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jacky06086 jokow22
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Hi Jokow22,
I recently read about vulvodynia and the symptoms do sound very similar to mine. I plan on seeing the doctor this week. If you don't mind me asking.. how long will you be on the monthly pain injections? I read that there are multiple treatments for vulvodynia. Did your doctor recommend the cream/pain injections as the best option for you?
jokow22 jacky06086
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jokow22
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jacky06086 jokow22
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This is very good to know! Thank you for sharing with me! I'm glad you found a treatment. I should probably look for a vulva specialist as well.
samantha1970 jacky06086
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I would try and find a vulva dermatologist. With the itching, swelling and yeast like (although it's not yeast) symptoms.... you may have lichen sclerosis. If you don't mind me asking, which Country are you in?
Annie5000 jacky06086
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Hi.....I have just read your post and all the replies and I think you may be interested to hear what happened to me. My experiences were very similar to yours but once I got totally healed I posted on this forum to share with others what I had been through. I am in the U.K. and am 40 now but this started many many years ago. I was having thrush symptoms and a dreadful time down there pretty much for 20 years. In the end it was just the norm for me to use pessaries and creams etc. I ended up having a loop excision to remove the bottom part of my cervix and every smear test I had came back abnormal. I was in so much burning pain that I was bed and house ridden and my amazing husband went to work then came home and looked after the kids and me for many months. I was tried on all the meds and creams under the sun and still I was burning inside. To cut an extremely long story short one day I saw a new doctor. She took one look at me and asked me to tell her exactly how I cleaned my vagina. Weird. Well I proceeded to tell her EXACTLY how often and with what I cleaned....simple fragrance free stuff and I thought that would be fine but it turns out that is where I had been going wrong all these years. She told me the only problem I had was that I was too clean. What? Well yes the vagina is self cleaning. All my cleaning inside and then the constant flucanzole, pessaries, creams, clotrimazole etc etc was removing all the good bacteria and making me very sick. Like another reply to your post I left that Dr thinking what on Earth was she talking about. But I listened to her. That evening I had a shower and totally left things alone down there. I shut my legs and quickly just let the water run down and didn't touch a thing down there. I wore no pants if I could or cotton ones and after wearing Lycra at the gym I went home and again shut my legs and washed my body and then opened my legs and let a bit of water run over my bits. I didn't touch at all down there. When I had a wee I just dabbed quick with the toilet paper. I thought I would be smelly and I felt very unclean but my husband encouraged me and day by day I got better. Two years on and I have probably only had one bout of thrush. I don't wash down there at all just wipe in the shower the outside bits of my vagina with a flannel and water. That's it. All my smear tests come back normal and I don't even wash there before the smear,...just a wipe with water. It sounds vile but it's not. The less you touch the better. I think you sound a lot like me and the constant barrage of creams and meds has made you worse. If you can leave alone then I'm sure in a very short time you will see an improvement. Like you I had not posted before but my husband was so supportive and suggested I post on the forum to try and help others get through what we have been through. I know you will be fine it will take a little time but once the body starts to sort itself out and self clean itself down there you won't have any issues. Love Annie
lynn41704 Annie5000
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Thanks for the great reply. I am still improving and feeling more positive but still have the occasional time when I feel the burning for no reason but it does go away without any help from creams etc. I hope our experiences can help others suffering in the same way. Take care of yourself and be happy.
jokow22 Annie5000
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Great story, thanks for sharing. I completely agree with what you said, because since I've stopped being messed about by drs trying to give me all sorts of lotions and potions, i have been feeling better just leaving down there alone. I was even being burnt by the toilet paper because I realised my husband had accidentally bought a fragranced one. I have had numbing injections down there which did work, but my consultant went on holiday and then kept cancelling my appts. So I'm 3 months overdue for my treatment but I now, by just leaving things, don't even need it! Long may this continue!!
lynn41704 jokow22
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I know what you mean by getting the wrong toilet paper, the same applies if you use a panty liner or change your washing powder or fabric conditioner.
Take care of yourself.
Annie5000 lynn41704
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Yes you are totally right. If our posts encourage and help just one person then they can get on and enjoy their lives. It makes me so mad when I see adverts for all these fragrances vaginal washes and wipes and femfresh etc etc. In my opinion they cause a lot of these issues that women are having. I used to think I wasn't clean until I washed but I now realise that it isn't the case and my body has probably never been healthier down there since I started leaving it alone! Take care, Annie xx
Annie5000 jokow22
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Hi there...I'm glad you agree with my post. Your numbing injections made me remember.....I was also a couple of years ago prescribed Lidocane ointment which is a topical numbing cream for things like tattoos and injections. Oh my God that stung even worse but i put up with it. Then it was too bad to manage and so I had to rescrub and rewash to get it all off and then the initial problem with the pain and burning got even worse. Maybe it was a blessing the consultant went on hols as maybe if things are left alone they will all sort themselves out. It does take a good few months but your body soon starts working as it should and you become self lubricated and this stops the dryness which stops the itch and the soreness and the burning......anyhow do take care look after yourself. Love Annie
jacky06086 Annie5000
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Hi Annie,
You're story is amazing and I'm so glad that you shared it with us! Thinking back now I may have paid too much attention to washing and trying to keep clean down there. I definitely will try to leave it be for a few weeks and see how it goes. I've been staying away from the doctors for almost three weeks now to see if I can self heal.
Annie5000 jacky06086
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Ed It's definitely not easy to wash down there. Some days I struggled and just had to keep telling myself.....leave alone. My daughter is 10 now and I am very careful that she doesn't poke around or scrub or use the shower gels down there. I suspect that every time you went to the Dr or the clinic or for a test or whatever then you would clean down there really well and of course that was making things worse. No one wants to go and see a Dr with smelly bits lets face it.....but unbelievably water works just fine. No one seems to talk about this things I mean it's not something we chat about without friends but if everyone knew that they should just clean the outside bits of their vagina with water and totally leave the inside bits alone then there would be a lot more healthy women around and I'm pretty sure that a lot of these women who have been diagnosed with vulvodynia or other illnesses wouldn't have any problems at all. Please don't think I am pooh poohing women that do have actual health issues like excema or things down there as I'm not but I truly believe that in a lot of cases if women were taught how to wash properly down there it would be better all round. I just assumed from a young age that I had to clean inside my vagina and now I know that's not the case. Well I will stop going on now. If my post has helped you then that's lovely as that's all I want. As the Winters coming up you can try wearing light cotton trackies without knickers. No one will know and you can keep aired. Love Andrea
jacky06086 Annie5000
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How long did it take for you to get back to normal since the doctor told you to leave it alone? I want to get checked for vulvodynia but hopefully I don't have anything serious and just need be "less clean". I do agree with you that many women are uncomfortable with sharing these issues with friends and even family. Every women should know how to properly take care of their body. I'm glad that I found this forum and I'm very grateful for everyone who has responded and shared their stories as it is the best way to help each other. I'm also happy to hear that you are well and it gives me so much hope for all our health.
Annie5000 jacky06086
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lynn41704 Annie5000
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I have looked up zerodem and there are several different sorts. Is it possible for you to give exact name?
Thanks.
jokow22 jacky06086
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I agree, it took a couple off months to feel right again and occasionally I do still get burning but i can usually trace it back to what I've done. E.g. used different loo roll, too tight trousers, bit too hot and sweaty etc.
Annie5000 lynn41704
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Hi there Lynn. If you are in the U.K. then Boots sell the Epaderm and most good pharmacies also sell it. My daughter has the 500ml pump which is Epaderm Cream for dry skin, excema and psoriasis as she does have the latter mildly but I am also paranoid that she doesn't end up washing herself dry like I did so I keep her using it. It's about £12.50 for a pump dispenser. This is what I was always prescribed until two months ago when the Dr changed to me to a cheaper version which I actually think I prefer. I have looked it up and www.helloskinshop.co.uk sell it and I was amazed to just find out that it's only about £6 with free delivery for a huge 500g pot which is what I have. So thanks to you I may be able to save myself some pennies and get it online and save on the prescriptions. I must look into that. Well the one you want is zerodeem ointment in a 500g pot. It's like Epaderm and it's s 3in1 emollient, soap substitute and bath additive. It's almost like a Vaseline and you only need a small amount on a sponge then just sort of mix it up with a bit of water and smear over yourself. I then rinse but I also use it neat on my legs in the Summer so it's quite weird in that it doesn't need to be rinsed. It takes a while to get used to as you feel a bit slimy after the shower but then your skin will start to feel so smooth and if you just let it run over your bits in the shower then it will do its job. Hope you are able to get it from the Internet but if not I'm sure your pharmacist could get it.
Annie5000 lynn41704
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Hi.....it seems my huge response is now waiting to be moderated....am wondering whether it's cos I put on an email address of where you can get the Zeroderm. I will make this short as am hoping the moderator allows the original post! So you need the 500g Zeroderm Ointment in a big tub. If you look up hello skin shop on the internet you will see it and it's very cheap in my opinion. Let's hope the original post will be allowed on the site as I have written in detail what the zeroderm is like. Take care, Annie
lynn41704 Annie5000
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lynn41704 Annie5000
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