Hi,I am new here. I am desperate for answers. I had a hysterectomy 21 years ago and it was only through recurrent UTI’s that I was eventually diagnosed with vaginal atrophy. I was put on Vagifem and a vaginal moisturiser but whereas my UTI’s stopped the intense burning ( as if someone had put a tube of Deep Heat inside me). I can feel it coming on and seem compelled to move my legs endlessly. When I get it I cannot sleep at all, often for days on end. I spoke to my new GP who diagnosed Vulvodynia but the pain is not specifically in my vulval area.
I have been researching constantly on Dr Google just to know I am not going mad and found something called Restless Genital Syndrome. It seemed to fit so well but my GP Pooh poohed it and tried to ridicule me. It would be such a relief to find someone who could help me.
Thanks for reading.
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CecilyParsley
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So sorry for what you're going through. I haven't had a hysterectomy but do have atrophy. Total pelvic floor failure, prolapse, various bowel conditions etc -But don't experience the burning. I just feel clueless as to be able to offer any helpful advice/insight
Typical doctor reaction though. And so unhelpful. Puts you off going back , but you must. Keep going back until you get a referral to a Gynaecologist. Or is there any other way around this? A walk in Women's Health Clinic or something?
I use NHS & NICE sites & sometimes NHS Hospitals come up after a Google search. So I'm careful & have some knowledge anyway.
Mention Google or Internet search to some doctors though & it can be assumed we're all unable to research properly & discern.
The last time a doctor said -
' keep off the Internet ' I replied that it had saved my life.
I'll have a look myself & see what comes up xx
So sorry you're in such pain x
Edit - do you test your urine at home with the urinalysis dipsticks?
Are you being treated firvthe UTIs?
Do they actually send the samples off to the lab for culture & sensitivity tests?
Hi Mary thanks for replying. I was in my last GP surge ery for 31 years and could ring and say I have an infection and they knew me so well they prescribed antibiotics immediately.Following boundary changes I was transferred to a more local surgery. They do not know me and look at the vast amount of medication I am on and judge me. I was diagnosed with Lupus in 2009, then Bechets in 2011. Since then no two Rheumatologists have agreed on a diagnosis. I take 26 tablets, three inhalers, a nasal spray and various creams on a daily basis. One Rheumatologist said and I quote “ there is nothing wrong with you except Fibromyalgia and Hysteria”. Since then it changed to UCTD, then MCTD no Fibromyalgia, now it is Bechets and Fibromyalgia and Raynauds.
I have been under a Urologist for years. I underwent so many gynae operations from the age of 14-40 I had lots of scar tissue and slight damage to my bladder from the procedures to unstick my organs to one another and my pelvis. I have stress and urge incontinence and the diverticulum in my bladder means it is never fully emptied. This burning inside was thought to be the atrophy but no one could account for the reason my legs twitch jerk and I pace for days. It is not all the time. I feel it coming on as a physical agitation. I am restless until it gets to the point where I cannot keep still and the pain of the burn makes my eyes water. The Vulvodynia diagnosis doesn’t seem to fit because the burning is entirely internal. Apparently there is no infection or ulceration. I wondered if I had internal ulceration from the Bechets. The new GP says she has referred me to a gyno -urologist but how long that will take who knows. Anyway thank you again for taking the time to comment.x
Sorry to take so long getting back to you.Something that came up when searching was - nerve pain .
Now, if you think about this & especially with the additional history you've just shared it makes sense that it us neurological/ neuropathic pain ( not sure of correct adjective - maybe just stick to nerve pain!).
The burning and the leg symptoms would suggest thus surely?
Apart from this, if you sit down and re-read ALL your patience information leaflets with each meds you're on for any particular side effects?
Some of the things some Doctors say ( and get away with) is appalling.
All we can do is rest up a while & then prepare for battle again.
Getting correct diagnosis & suitable, right treatment can be such an uphill struggle.
You know you're not alone though. It's unbelievable how many patients suffer.
I was left with untreated Hypothyroidism for years and could have died. Of course, I now live with all the damage that was done - stress & sudden urge incontinence; don't have normal bowel function either. Lots & lots of internal damage etc. I had to deal with many offensive remarks too.
I wonder if there's a Women's Health helpline anywhere?
What scans have you had? CT? MRI? Internal Ultrasound?
Hasn't anyone mentioned the scarring from any of the procedures possibly causing this or nerve damage?
yes I have read a lot about nerve damage what I don’t understand is that it took so long to manifest. Maybe it is because I am sitting a lot now? No one has really looked into it for me. It is so hard to explain. I have been given thrush treatments, Valium but the Urologist wasn’t interested in the vaginal area only the bladder and my Rheumatologist says to see my GP. Now I seem to be diagnosed with Vulvodynia when I really don’t think it fits me. I just hope whoever I see, whenever I eventually get to see them will have an interest in helping me not blaming everything on my obesity. One Urology Registrar actually said it is no wonder you are getting UTI’s with the amount of fat between your legs. I was mortified. The nurse present caught up with me and urged me to make a formal complaint. I didn’t because I could not bare to put it in words at the time. We have some wonderful Doctors but sadly we have some dire ones too x
Isn't that horrendous? What that Urology Registrar said ?I should have made a complaint about the doctor who wouldn't believe I have Intussuception last time I was in A&E. Even though I recited dates & names of all my scans & investigations.
I was admitted by the Out-of-Hours GP.
She, the hospital dr, (without warning) struck me in the groin & slapped my file together & said THIS is a tendon injury not SAU (surgical assessment unit). I do have an old groin injury the same area where she administered her violent blow in temper. But I was admitted with left abdominal/ pubic pain & raised temperature.
I'd like to ask that Registrar of yours why I don't have UTI s then - as I am 5st overweight & have Lymphoedema . So my thighs & legs are hugely swollen.
I was prescribed Valium for pain once. Problem is, it's only effective for about 2 nights. Helpful in the emergency as a muscle relaxant though.
Has anyone suggested any medication for neuropathic pain?
I wonder if you should see or at least have a phone call with a Neurologist?
You really need an understanding GP.
Have you had blood tests to eliminate Autoimmune Thyroiditis & Hypothyroidism?
EDIT: I've just looked up Bechets as I hadn't heard of it & am wondering what blood tests you've had done?
Do you get print outs of your blood tests results?
Have you had CRP tested ( C-Reactive Protein)?
Are you on prednisolone as that would cause weight gain , wouldn't it?
oh my God she slapped you in the groin? That is disgraceful treatment. Yes of course you should have made a complaint but often these things occur when we are at our most vulnerable. I am truly sorry you had to experience that. As I was diagnosed with Lupus I get regular Autoimmune bloods taken as well as the usual screening for most things. Since I became sick my thyroid became under active, I developed foliate anaemia, macrocytosis, Pernicious anaemia, Spleenamegaly, vitamin D deficiency, hemiplegic migraine, urine incontinence, chronic fatigue, IBS, Raynauds, mouth ulcers, genital sores. Every time I visit a doctor I get more diagnoses. My ANA is always highly positive, my DS dna is weakly positive, my ESR is raised intermittently especially during the regular UTI, Pleurisy and Cellulitits I get. I have such poor balance, I fell 23 times last year, breaking my nose again and several toes. I am not currently on steroids apart from asthma pumps and nasal sprays. I have been under a Neurologist several times but not about this issue. The problem with AI is that it is systemic and affects so many parts of the body so you are compartmentalised and there seems to be no liaison between Consultants although my Orthapaedic Surgeon said that he would need to consult with my Rheumatologist before I get my replacement knees due to the medication that I am on. I really am a “ comp,ex case” as they so frequently label me lol x
No, she struck me in the groin - didn't even ask if she could "examine' me there. How can I explain - with her hand straight ( fingers closed) she thrust her hand into my left groin . Of course I physically reacted.
She then sat briefly, wrote on my file & in one movement shot to her feet slapping my file closed , aggressively declaring
Has anyone ever prescribed estriol cream for you. This happened to a relative of mine who was just prescribed moisturisers but never had the cause treated ie thinning of the skin.
Could be the Vagifem is causing the problem, I used it for years then it started to cause burning, tried a few others which did the same as I’m sensitive to some ingredients. I also have vaginal adhesions which cause awful symptoms and stop topical treatments getting to where they work.
My new Gynae put me on Ospemifene oral tablets and the difference was amazing. Might be worth looking at what you are using and the ingredients that you could be sensitive to and ask your Gynae if you could try Ospemifene.
I don’t think it is the Vagifem. I had it for years before. The strange thing is that it is not all the time either. I can feel it starting, I feel agitated in my body. I truly believed that the Bechets ulcers I had outside were inside too until I got fed up and brave enough to let the Sexual Health Doctor have a look. She said my cervix, left even though I had everything else removed in my hysterectomy 21 years ao, was absolutely healthy and no ulcers and areas that were inflamed could be seen. I am waiting to see a Uro- Gynaecologist so it will be interesting to see what they say. I will make a note of Ospemifene though so thank you so much x
Unfortunately as my Gynae told me sometimes there is no definite cause or treatment for symptoms, another Consultant once said “we are very good telling patients what it isn’t but can’t always say what it is” sometimes they just don’t know. No help when we are suffering but what more can we do, oh for a magic wand 🤦🏻♀️
If you are near Somerset I can recommend my Gynae at Sulis Hopsital Bath, no guarantees she can cure the problem but she certainly goes out her way to help.
Its not quite the same as whilst moisturising it encourages the skin to thicken which stops atrophy. This is because of the presence of estrogen in the cream which moisturisers alone don’t have.
hi, I’m sorry to hear you are suffering, I too haave a similar problem but the burning seems to come from my bladder / urethra area ,sometimes it feels vaginal as well. Eostriol has helped but yes sleepless nights also. Hysterectomy for cancer ,thought it had gone ( burning) but it still comes back. I take sleeping tablets if it’s bad , urologist says it might be a diverticulum and is organising a scan, I wish you well.
I am so very sorry that you get this too. The pain is something else isn’t it? I live with a lot of pain but nothing touches this intense burning, I take morphine and Gabapentin, Mine goes on for days. I have a diverticulum of the bladder too so I will be very interested to know how you get on. Good luck x
hi Cecily, did you have a surgical op for your diverticulum? My urologist has warned it can have complications so not going any further at the moment, I am 67 and fit otherwise ,the eostriol has helped and the burning is less frequent but boy I know what you mean by sleepless nights. I used to have restless legs but take multi vitamins and that side of things has settled, have raynauds also, how strange!
Hi Nessie, no they did not recommend surgery on the diverticulum itself but the Urologist did say they could remove the bladder totally and give me a pelvic portal. I decided against this as I am comp,etely into,erantlerant of plaster so any stoma would cause more issues. The Urologist thinks it is gynaecological , my GP thinks Vulvodynia but I have no burning on the outside except when I get the Bechets ulcers. X
I too had the horrific burning. It took a ObGyn to help. He gave me steroid shots in vagina area. Also vaginal suppositories with 2% dizapan . I haven’t used them for a long time…but they helped at the beginning. So far I haven’t had much burning at all. (USA)
Supposedly Vulvydania.. Not sure of the milligrams that he used. I did hold onto the nurse’s hand squeezed actually. I have not had a problem since. And I suffered for 6 years. I occasionally uses the vaginal suppository if the burning seems to be starting up again.
WholeWoman.com has many different approaches to pelvic organ problems, for atrophy they recommend raw honey, local, topically applied to the vagina every day - I mix with food grade coconut oil (50-50). The idea is that atrophy is actually caused by a low microbiome in the vagina, and the honey feeds the beneficial bacteria. You might think its worth a try? If it stings to start with, this is usually a sign of low beneficial bacterial flora, but most women find it relieves fast. Would you consider herbalism? or homeopathy? Vaginal atrophy can be terribly uncomfortable, I hope you find healing soon.
Hi. I would say find a good urogynaecologist who specialises in treating vulvodynia and chronic pelvic pain. Perhaps even a neurologist, if you suspect the burning is caused by an irritated nerve.
Thank you I have been referred but who knows when I will be seen.I was researching Pelvic Floor Dysfunction last night. After two nights with no sleep it is miserable x
I get internal burning as part of my endo pain. Around the ovaries where i have adhesions. Can also get in pouch of douglas area. Could it be your adhesions?
Hi Kylie. It could well be as I had an awful lot of surgery to unstick, bladder, bowel, womb to the pelvis. Lots of adhesions. The Doctor in the Sexual Health Clinic said it all looked healthy so I am stumped and just a bit desperate. Does your burning come and go? X
Yes. It can flare up. Then settle. Thankfully my endo symptoms are well settled at the moment on the low estrogen combined pill. If i eat any of my trigger foods it can flare though. Have you looked into anti-inflammatory diet and castor oil packs?
It takes a minimum of three months of regular use before vaginal estrogens such as Vagifem to be effective. And if your atrophy is severe like mine is, it can take much longer.
If after 3 mos you don’t feel better, ask your doctor if you can switch to a different form of vaginal estrogen. (Creams, Estring, inserts) I love the Imvexxy soft gel inserts. They don’t burn me like the estrogen creams do.
You not only need to use vaginal estrogen internally, but you also should be given a vaginal estrogen cream to apply externally to vulvar tissues, the urethra, etc. You can use generic vaginal estradiol cream or Premarin conjugated estrogen vaginal cream. If they burn, you can mix them with a gentle moisturizing cream suitable for vulvar use such as “VersaBase Cream”, which you can buy from a compounding pharmacy.
Some vaginal moisturizers can burn atrophied vaginal canals, including hyaluronic acid suppositories that many doctors suggest. You might need to use something really gentle such as vitamin E oil or suppositories (look up Carlson Labs Key E supps on Amazon). Use on the days that you don’t insert your Vagifem as you don’t want to inhibit absorption of the estrogen.
Keep your external tissues regularly moisturized as well. Many gynos recommend CeraVe Healing Ointment or Aquaphor Healing Ointment. Don’t use the latter if you’re allergic to lanolin. I use both of these. They are inexpensive and great emollients. Very soothing. You can also use pure liquid vitamin E oil as an external moisturizer.
Hi thank you for that info. I have now been on Vagifem for four years, the irritation I had has dissipated. I was fine initially with Hyalofemme moisturiser but then it started to burn. My GP told me there is no alternative. After a while I went to her for a smear as I hadn’t had one for five years because the pain was too intense and I bled. She half heartedly tried to do the smear and lot of puffing and panting and sighing and then announced I coukd no longer have a smear at the surgery as I was too far retracted. She promised to refer me to Gynaecology but did not do it so I referred myself to the Sexual Health Clinic. The Doctor there did my smear in minutes with minimal discomfort. She said my vagina and cervix looked normal, no ulcers or inflammation which could be causing the pain. She told me to discontinue Hyalofemme and use Sylk. It does not burn me when used but neither does it extinguish the intermittent fire up inside. I have no idea as to what sets it off. I used to get it about twice or three times a year which was distressing but manageable. Now I am getting it monthly. Although the severity of the burning is painful it is the severity of the agitation that it causes that is so debilitating. I cannot keep still. I have tried distraction and have actually jumped and thrown my book in the air. My legs go like pistons. I cannot rest or sleep or sit still. For as long as it lasts I pace my heart races and I feel nauseous. My vulva feels swollen and I have little control over my bladder. GP’s look at me as if I am mentally ill. They prescribed Diazapam it did nothing for me. It really is hell. I have to be careful what I use on my vulval area as I have Bechets and get regular ulceration. Any type of moisturiser causes stinging. I know it is complex but surely I cannot be the only person like this?
One word: Intrarosa. My urogynaecologist just prescribed this because it finally received approval in Canada. My story goes back many years. I had surgery for a prolapsed bladder, but the vaginal pain came back. I was misdiagnosed - I.C., Vulvodynia, etc. My vaginal pain would start pretty much every time I urinated. The pain was unbearable. At first they were not sure if the urinating set off the pelvic floor spasm? I tried pelvic floor therapy, but it didn't help. I was on various prescriptions including Gabapentin (up to 2300 mg/day) and Lyrica (a great pain killer, but side effects were nasty). Elmiron & Nortriptyline didn't help enough to warrant the side effects. Once she put me on 10mg Cyclobenzaprine 3 times per day (which I am still on) and the pain did stop for a few months. But it eventually creeped back. I also tried CBD/THC gummies. They helped somewhat ( I weaned myself off the Gabapentin). But now this. One week after starting the Intrarosa, the pain is completely gone. I am 63 years old and may have finally found a medication that will end this nightmare.....
Hi and thank you so much. I will definitely ask my GP about this in the UK.I am delighted that you are now pain free. My pain isn’t all the tine. It comes and goes but it is getting more frequent now. The worst part for me is the inability to keep still or sleep when it goes on for days I get exhausted. Xx
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