*i posted this in another group but thought this one would also be good for a second opinion!
Hi everyone,
I haven't posted on here in a while but this has been a long term condition I have been suffering with for a few years at this point. Feel free to check out my other posts in case I missed something. It has put a strain on my relationship - which has (thankfully) lasted throughout this whole ordeal; but I need to get this sorted and would like someone's thoughts on what to do next.
Symptoms
- Itchiness and burning all over my groin - especially around the opening to the vagina, the clitoris, and my anus (noticeably more after going to the toilet). The itching around my anus has got really bad in recent months with it being very painful to walk, stand or do anything sometimes. I have mentioned this to several doctors where one diagnosed me with thrush that had "spread to the back passage" because she said it looking inflamed. I applied cream and used a pessary tablet but there was no improvement.
- Peeing is painful right on the opening to the urethra, sometimes with a lower stomach cramping associated with it.
- Back pain (especially when on my period and after peeing) particularly on the left hand side of my lower back which sometimes feels similar to the kidney infection pain I had a few years ago.
- Skin irritation with comes with the itchiness, I thought this may have something to do with the type of detergent/pads I use which had fragrance but it has lasted so long and I have this irritation even when not wearing any underwear! I end up getting red and swollen down below especially on the opening to the vagina.
- Painful intercourse (dyspareunia), it has become almost impossible. I have been tested frequently for STI's and have had a long term boyfriend throughout this as mentioned.
The worst symptom is the irritation and itchiness. I can't live with it anymore and I don't know if maybe it's my pubic hair that is irritating, should I get a wax or something? Shaving has been irritating in the past. Also the painful sex is the worst part of this for me emotionally. My mental health has really suffered because I am a young 21 year old girl at university with a boyfriend and it's really put a strain on our relationship - and we've been together almost 4 years.
Procedures/Referrals.
- I've been referred to gynecologists and urologists. All my recent swabs, examinations, and urine tests have come back clear and unremarkable.
- My GP found candida in the summer of 2018 from a urethral swab which I took fluconazole for, for about 2 months with no change.
- In November 2018 I had a biopsy which came back with nothing in particular but they did notice inflamation of my urinary tract. My urine has been clear since my last suspected UTI in 2017.
- I had an MRI in July 2019 which came back clear.
- In September 2019 I went to see a new gynecologist which diagnosed me with vulvodynia which she prescribed me amitriptyline for. I had been using that up until recently going as high as a 30mg dose but with no improvement at all.
- Since September 2019 I have been having a cystistat which is a instillation of fluid into my bladder to support the lining of my bladder as they couldn't find anything from the biopsy or MRI so thought this might help. I have seen maybe a little improvement but by no means are any of the above symptoms "cured".
I'm sort of at my wits-end and want to cry and scream all the time about how I'm feeling and how uncomfortable I am. What I would really like to know is who to go to next. I was wondering if it was worth going private and what kind of specialist I should see. Also what kind of tests I could ask for? Like should I get another blood test and more swabs/ urine/ stool samples? I really want to see this treated in the new year and I would be grateful to anyone who could help!
Thank you for reading,
Emma
Written by
emma_jk
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To be honest I feel like what you may be experiencing are nerve issues and something like gabapentin or cymbalta which deals with nerve pain /itching may be needed ...you also should think about going to a pelvic floor physical therapist because they know all about these kinds of issues and they see both men and women for it every day.... If you're in the UK your primary care physician will refer you just tell them you need to go to a pelvic floor physical therapist I really think that's the best person for you to go to... I have been going for 6 months once a week and she has really helped me enormously. It sounds like you've done every test known to man as far as that goes and believe me we all go through many doctors many test many procedures before we get any kind of diagnosis and even when we get a diagnosis it's an ongoing problem that we have to manage but you must get yourself some antidepressants and/ or some anxiety meds which all will help with the itching /burning.... I have pelvic floor dysfunction and I have had all of these symptoms at times but I've had it for a year this time and it's really difficult to deal with however I have a team of doctors who help me ...you may want to go to the interstitial cystitis website and they can help you too ... You can get miniature icy hot packs that you can put inside of two pairs of underwear and they help...you can message me anytime you want and I'll help you if I can because I've done a lot of research spoken to a lot of people and I even started my own chronic pain and illness group in my neighborhood... I am older but you are too young to have to deal with this so let's get you some help!!
Yes, threadworms in the past gave me an itchy back passage and strangely, what seemed like a urine infection, even though the dipsticks were clear. It wasn't until I read something online, that I put it altogether, took the medication and felt better.
I really feel for you! Your story sounds a lot like mine, except I'm 20 yrs older and all the problems started after having kids.
I have flare ups every now and again, but not as many as I used to. I was diagnosed with vulvodynia and given steroid creams and numbing creams for bad flair ups, alongside the advice of washing your underwear in non biological powder and rinsing it twice, wearing loose clothing, not eating trigger foods e.g. citrus fruits and tomatoes. Using unperfumed toilet paper, or just rinse with water. I was also given some underwear on prescription that was made specifically for people with problems such as ours, it's made from a special silk?? I found that after a while all the thrush medication etc made me worse, so stopped taking anything like that.
Rather randomly, have you been tested for endometriosis? I didn't have the classic symptoms, but after 14 years of random stomach pains, I FINALLY got granted a laparoscopy. Lo and behold, my right side was COVERED in it. I had it removed, and all my symptoms seem to be a lot better since.
The only thing I seem to have now, is the back passage itch. I have had thread worms in the past, which also gave me an overactive bladder!! The medication took care of that, so that's good to try.
But now I don't have worms,but this itch has been with me for 6 months. The doctor thinks it might be my external piles, or my skin tags getting irritated. Have tried anusol etc. But they've sent me to a colorectal surgeon to check...shame the waiting list is 6 months long!!
Don't know if any of that was useful, but you're not alone...just irritated. X
Hi Emma! I have the same, vagina entrance itch, mostly around the clitoris, sometimes anus as well, and occasionally burning everywhere from the lower abdominal area to down into the vagina. And pelvic pain. I have 3 STD test negative, urine tests negative, vagina swabs negative, blood tests negative, ultrasounds negative. My story started with vaginitis which got better with the pessary but left with another kind of itch and occasional burning. It is from June. The itch got better with the period.
I am so sorry you are struggling with this awful issue, especially at your young age. It seems like you have investigated the problem with many different doctors. I have to wonder if something in your diet is triggering a sensitivity and causing some of your problems. Have you tried eliminating all dairy from your diet for a couple weeks? How about eliminating all chocolate, tomato products, citrus and berries for a couple weeks to see if it settles down? Keep a food journal every single day and see if you feel better any days. I appear to have reactions to oats, tomato products, citrus and chocolate...disappointing, but at least I feel better when I avoid them completely.
Experiment a little and see if you notice any improvement at all.
Hi Emma, so sorry you are suffering like this, especially as you are so young. I have similar pain, but it's more like a knife constantly stabbing at the entrance to my vagina, just on the inside. I have had this for years on and off. I had a cystoscopy, and it was found that my bladder entrance was inflamed. I kept off eating acidic fruits, vinegar etc, and drank plenty of water to calm down the inflammation. More recently, I was diagnosed with pudendal neuralgia, and had a nerve block, which irritated everything. What I think is wrong is that I ha a small tear just inside, and when that is irritated, the nerves play up, and the pain radiates everywhere. In desperation last Monday I went into our chemist and she suggested lidocaine. I bought some vagisil, as they didn't have any lidocaine. Vagisil is 2% lidocaine. I sit in a bowl of hot water about 3 times a day, and rub that on everywhere, night and morning, and in between, I put lucas papaw ointment (online) or aqueous cream on the sore bits.
I have decided not to take any tablets other than paracetamol or an ibuprofen if it gets really bad. This gives my body a chance to eventually recover. I am not a medic, but I have had this problem on and off for 30 plus years. It's gone before and it will go again. Just have a simple plan and try not to worry, as I am sure you will get there. All the best.
Thank you so much, I’m so sorry you’ve been suffering with that for so long! It’s just so annoying that so much effort and time has to be taken to managing symptoms when I have so much life to get on with! All the best for the new year Amber xx
Strangely my friend had very similar symptoms and was diagnosed with an allergy to a lot of dyes you find in clothes. Prescribed cream for inflammation and itch and now checks what materials are used regarding clothing especially within underwear. Hope you find a treatment that is good for gou.
Your very young to be having these problems. It could be thrush (try canesten from chemists) or a urinary tract infection (UTI) which you would need Nitrofuratoin anti biotic prescription. My new younger doctor said sex can cause UTis and one can have a standby Nitrofuratoin for after intercourse (didn't know this before wish I had. Also try and not drink too much coffee or eat acid foods which make the urine too acid and dark. Drink plenty water to flush out bacteria. Lemons and cranberry juice reported to help. Uti's re-occur because some of the bad bacteria survives and waits until conditions are right. Keep everything very clean. Perfumed soaps seemingly can be irritating.
I suffer these problems but I'm 68. I had thrush at your age but was very sexually active just got canesten to apply for a couple of weeks and it cleared up. Guys can get this too. Its a fungal infection.
I had this really bad last year at the same age as you, the itchiness was so raw that I couldnt even walk because the pain of my legs rubbing together made my eyes water. I tried stronger and stronger steroid cream, vaseline, slept with socks on my hands and no pants on just to try and get some relief, and I found the only thing that helped was a very strong steroid cream. Once I stopped scratching, the itch went away and now only returns when I'm under stress. Similar with the stabbing pain, I find it only gets bad again when I get stressed or ill, and the utis too, I had 8 in a year when I worked in a very stressful job and now nothing. Its frustrating feeling like theres nothing that can be done and the itching is the worst thing I've ever experienced but there is help out there even though it's an absolute srse trying to find it ! x
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