Don't know where to turn - ? Vulvodynia ? Burns - bruising - freckle on labia - pain
Posted , 7 users are following.
Hi ladies, I'm having an absolutely miserable time at the moment and could really do with some friendly words/advice from someone who has gone through similar. Firstly, can I add that I've only had 2 sexual partners in my life, both long-term. Plus I have PCOS and long cycles. I'll give you a run down of my last 6 months. So sorry for the length of the post, it's impossible to tell you what's going on without what came before:
All my life up until July: Totally normal
End of July: Hospitalised with bad EBV (glandular fever) with inflamed liver and spleen. Warned it would be up to a year before I felt near normal again.
Late August: Allowed home to recover.
September: Started feeling sore, thought I had thrush, ulcers developed, then open sores. Diagnosed with HSV1 (herpes) genitally that I apparently could've had all my life, but were showing as my immune system was horrendously low. Have never been in so much pain in my life.
October: 5+ HSV1 break outs
Mid-October: More HSV breakouts - put on long-term anti-virals to suppress. Started using a new fabric conditioner somewhere along the line here. Started dealing with a horrific case of what I thought was thrush. Had weeks upon weeks of treatment (long-term fluconazole and cream). Stopped all exersize, couldn't walk far, horrendously sore, stopped my daily activities. Never examined by my male Dr - just treated. Literally it's all I could think about, I've been stressed out of my mind. It's so sore and uncomfortable, literally ruining my life.
End of October: Ongoing vaginitis/thrush/still being treated for it with long-term fluconazole. Smear test results come back with low grade dyskiraisis(?) and HPV. More stress.
November: More symptoms uncontrolled. Pulling my hair out. No progress through this month. Constantly red and sore.
December: Eventually had swabs done - came back positive for BV, neg for thrush, so I'd been treated for thrush 5-6 weeks. Put on Metronidoazole oral AND vaginal gel for 5 days over Christmas. Started clearing. Spent Christmas Eve getting myself tested at the sexual health clinic (all came back fine) and new year's eve having blood tests re-taken there. Finished the course, period came half way through the course.
January: Had 3 days of feeling totally normal as my period had just finished. The first 3 days since October and then started having symptoms again. Swelling, purple labia, discharge etc. Spoke to Dr who prescribed more antibiotic vaginal gel to take the same night - another 5 day course. By day 3, I was so pink and still inflamed. Not the same colour as when the BV was bad, but itchy like thrush. Used canestan but started getting burning and irritation and washed it right off. Also had oral thrush in this period. Fluconazole not touched it either. Used natural yoghurt (ON MY VAGINA - what has my life come to?), PH balancing wash and anything that would possibly help, but nothing. I thought I had thrush caused by the antibiotics.
It's honestly ruining my life. I've had 3 days partial relief in almost 4 months and my GP surgery seem to view that as normal because it's 'safe to live with' and 'common amongst women'. Plus all the usual soreness after sex etc.
The last 3 days
After finishing more metrogel, I was getting pinker and more inflamed. On Monday I rang the sexual health clinic back because turns out they can diagnose thrush or bv instantly under a microscope. They got me in with the sexual health consultant in under 2 hours. The Dr was amazing, spent 1 hour 15 mins with me as I was feeling so pushed aside and didn't know where to turn. He did a thorough examination (I've had more speculums in me this month than anything else lol) and checked the microscope, which showed NO bv or thrush. - WHAT?!
He did a lot of research whilst I was there, including blood tests for various things but especially blood sugar (still awaiting results). And then he came back in and says "you're VERY interesting!". Interesting is not the word I'd use but there we are.
So after everything I told him (20 mins of non-stop talking about the car crash that's been the last 6 months of my life), he picked up on the fact I seemed to feel bad after using creams (something I'd not thought about, despite stressing about this every waking hour since October). Also, that back when this all started in October, I'd had to switch from a new perfumed washing conditioner to non-bio because I had a reaction. Then I was potentially mistreated for thrush with creams that made me worse. This potentially upset the PH balance which caused BV. It seems like my skin in the area is damaged now and needs to heal.
He's given me a one month treatment plan before seeing him again. If I get no relief, he thinks we're heading down the road of Vulvodynia/Unprovoked dysaesthesia (this terrifies me).
The plan is:
A week of Daktarin hydrocortisone if tolerated. - I tolerated it for about 4 minutes before I had to wash it off due to burning and inflammation.
If not tolerated, 2 weeks of Eumovate ointment. - Managed a day and a half before it made me swell and BURN.
Then 2 weeks of Cetraben ointment. - I am trying this tonight.
Plus 1 strong, high-dose antihistamine every day for 30 days.
I have also seen a small brown spot developing on my inner labia over the last 4 weeks - almost like a freckle, and there is a large, blue bruise now developing too. I'm ringing the clinic back in the morning with hope they can see me due to changes. I'm fed up, panicking and worrying all the time, I just want my life back.
Before I left he said "horrible for you, but intriguing for us", which gave me confidence that they were committed to tackling whatever the hell is causing me this grief. I have a colposcopy next week for my abnormal smear so let's hope they can shine some light too.
I don't really know why I'm posting - just looking for someone who's gone through similar I suppose. xx
0 likes, 9 replies
Jeanieboots 24andworried
Edited
Hi
So sorry to hear about this, I went through the whole 'we have no idea what's wrong with you' for two years- I had biopsies, creams, tests, specialists, and was eventually sent to an oncologist (which was obviously terrifying.) He said "do you get a rash when you wear cheap metal jewellery?" and I said yes. He said "I think you have a nickel allergy." It turned out my big problem- constant soreness and itching in labia, an open sore, and agony wee-ing, that nothing cured, was down to the nickel allergy. There is nickel in all kinds of foods- but very high concentrations in pules, soy and green veg and nuts, which is what I was CONSTANTLY eating as I was a vegan (because I thought it was so healthy!) The body doesn't absorb nickel so it was all concentrating in my urine and every day it was making the reaction worse. I was so infinitely grateful for a diagnosis after 2 years in the wilderness. So, I'm not saying yours is the same issue- but it could be an allergy. Keep researching, and demand specialists- they will find out eventually. I had a patch test in the end, and it proved that I am very allergic to nickel. This would never, ever have occurred to me, so thank god for the oncologist.
Suki_girl Jeanieboots
Posted
Thanks for the reminder Jeanieboots. A lady on my post about my vulvodynia said that her vulvodynia was due to an food allergy too - in her case it was the nightshade group (potatoes, peppers, chillies, tomatoes, aubergenes), specifically the chemical found in these foods called solanine.
24andworried Jeanieboots
Posted
I just want to thank you for leaving this comment. I was reading it in work today and sat racking my brain.
It occurred to me that just before this started happening, I tasted pickles for the first time (gherkins and pickled beetroot). I had them ever other week around the time I was a little sore, and then at the end of Oct (when it got bad) I was having them with 4-5/7 meals a week and introduced them into my daily diet.
On researching today, I found that Balsam of Peru (which is used in the pickling process of veggies) is linked with vulva dermatitis and allergic reactions. Apparently Balsam of Peru is one of the most common allergens.
I'm shocked and can't believe I didn't think of it sooner. I'm just praying that this is the answer.
Now that I think of it, this week's diet has impacted my vulva state:
Monday: Pickles for tea, aggravated, red, sore
Tuesday: No pickles, woke up with huge improvement
Wednesday: Loads of pickles and I was so 'burnt' afterwards and today. So burnt that I rang the Dr again today and went in to be examined.
He told me to persist with the Eumovate and mix it with Cetraben and try to keep going. But now that I know this, I can cut pickles totally. Ironic because literally yesterday I had a 10 minute conversation with my other half telling him how thankful I was that he introduced me to pickles because I love them so much haha.
Now that I think about it, I was home for Christmas at my mam's and had no pickles. This was when my BV was clearing up after the antibiotics. Then as soon as I got back to my normal diet when I got home, it flared up again.
Praying this is the answer. Thank you again xxx
24andworried Suki_girl
Posted
Just posting this again below so you can see it Suki_girl xx
Thank you so much for commenting.
It occurred to me that just before this started happening, I tasted pickles for the first time (gherkins and pickled beetroot). I had them ever other week around the time I was a little sore, and then at the end of Oct (when it got bad) I was having them with 4-5/7 meals a week and introduced them into my daily diet.
On researching today, I found that Balsam of Peru (which is used in the pickling process of veggies) is linked with vulva dermatitis and allergic reactions. Apparently Balsam of Peru is one of the most common allergens.
I'm shocked and can't believe I didn't think of it sooner. I'm just praying that this is the answer.
Now that I think of it, this week's diet has impacted my vulva state:
Monday: Pickles for tea, aggravated, red, sore
Tuesday: No pickles, woke up with huge improvement
Wednesday: Loads of pickles and I was so 'burnt' afterwards and today. So burnt that I rang the Dr again today and went in to be examined.
He told me to persist with the Eumovate and mix it with Cetraben and try to keep going. But now that I know this, I can cut pickles totally. Ironic because literally yesterday I had a 10 minute conversation with my other half telling him how thankful I was that he introduced me to pickles because I love them so much haha.
Now that I think about it, I was home for Christmas at my mam's and had no pickles. This was when my BV was clearing up after the antibiotics. Then as soon as I got back to my normal diet when I got home, it flared up again.
Praying this is the answer. Thank you again xxx
Suki_girl 24andworried
Posted
i really hope you have found the answer. Please let me know how you get on after stopping the pickles.
Suki_girl 24andworried
Posted
vulvodynia can be caused by repeated trauma to that area due to infection and bad reactions to treatments. Back in 2013 i had repeated and persistent thrush and became highly sensitive to any medication used on that area. That evolved into vulvodynia. It sounds like your poor vulva has been through a lot of trauma. All those speculums dint help either - they will be traumatising the area too and aggravating the vulvodynia. I think that you need to ensure that you are clear of all infection then embark on the long journey of curing the vulvodynia, whilst trying to avoid anymore trauma to the vulva area.
Gillian1956 24andworried
Posted
I if I was you I would stop all creams and just wash with warm water nothing else get a perfume free wash for body in shower avoid the area were your sore keep it cool with cotton underwear get a small jug that you can put water in to wash down there after going to toilet take a small bottle of water when you go out don't were tight clothing buy one or the washing powders that are recommended for sensitive skins they have no harmful ingredients leave underwear off as much as you can including when you go to bed
Zuzeth 24andworried
Posted
I suffered from Vulvodynia for about 15 years. I'm 41 years old and my life was so miserable at that time. After so many years of sufferering and trying different treatments, God sent me an angel. A doctor from Phoenix AZ; Believe me you and the ladies in this forum need to call to make an a appointment with him. You need to stop using regular soap on your vulva area or anything with perfume. The doctor will tell you to buy Grandma's soap which is a natural soap. You can even buy it online .
He is a retired dr. from MAYO clinic but believe me he specializes in Vulvodynia so he will do several tests and will give you the correct diagnosis and treatment. Let me give you the link You will find all the information you need. Read the testimonies and all about this condition. Good bless you.
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Suki_girl Zuzeth
Posted
For a healthy vagina i would recommend not using any soap at all - the vagina is acidic and soap is alkali. The Ph is not compatible and can encourage overgrowth or yeast or bacteria. In fact our skin in general is acidic, but the vagina more so. It takes the skin a few hours to recover its normal Ph after washing with soap.
My gynaechologist told me to only use pure water on the vulva area.