Here is a selection of letters received in response to Bettina’s recent article on pelvic pain and the 7.30 Report segment on the subject. There are also some case histories to review on this site.
Good Morning Bettina, I would like to thank you for your article in The Sun Herald this morning re Lichen Sclerosus. I was diagnosed with this around 20 years ago and I am now 74. The Gyno told me that not in his or my lifetimes would they find a cure for it. That was the end of any discussion re LC. I finally decided going to the Gyno was a waste of time. All those years I thought a lot of it was in my mind. My husband found me crying my eyes out before I got to the end of the article. I couldn’t believe I read my symptoms in print. I still cant believe it. I am even crying while I write this. Straight away my husband got on the computer to contact the clinic you recommended. For however many years (or months) I have left, I thank you from the bottom of my heart. C.
Hi Bettina, I write this with a lump in my throat and butterflies in my tummy! Thank you for your article in the Sunday Age 6/1/13. I’m a 32 year old women who has suffered from Vulva pain for nearly 10 years. After a 6 year long and frustrating journey I finally ended up at the vulva clinic with Prof Vancaillie (thank god for him and his clinic). I went in to have Botox injections and started to feel “normal” again. At 24, when I first started experiencing the pain, it was a very sad place to be. Countless appointments that lead nowhere, other than being made to feel it was a mental problem.
So I thank you for helping thousands of women who read this article and had a light bulb moment! Knowledge is power, and it’s this kind of attention that will offer help in the long treatment path of vulva pain.
Hello Bettina, I know that my sister thanked you but I feel compelled to thank you also and let you know how much I appreciated your concern about my situation and the recommended specialists. My “condition” has plagued my life since November, 2011 and I wanted to share the revelation (finally) with a rational diagnosis. I teach Philosophy and Literature, so I feel my responsibilities deeply. It has been difficult to get through my classes standing through every lesson. I wanted to share my experience with you. Please feel free to use this information to help other women.
Firstly let me say that my lovely husband was the first person I trusted enough to share my anxiety about the increasing need for orgasms after a very quiet libido for most of my life. I am heading for 65 in April. He was so understanding he tried to comply with my needs but we found that the more we tried to release the nerves in that area the worse the pain became. There was no pleasure at all in the experience.
In 2005 I had my ovaries removed due to a cyst. Next, the polyps turn to be extracted. Finally, in October last year the uterus followed suit. Pathology confirmed that this was the cause of the pain (adenomyosis).
The relief was immense but month after month the pain increased. I was in tears most nights as it worsened as the day wore on. I slept with a hot water bottle between my legs and on my abdomen. I now carry permanent scars from the heat. For the past month I have waited and hoped but the fire down below and the knife like sensation continued. Six to eight Nurofen Plus did nothing to ease the pain.
Last Tuesday I ran out of a meeting at school in tears. I had sent your recommendations to my family doctor – a female. Male doctors did not take my situation seriously. She immediately diagnosed vulvodynia and gave me prescriptions for: LYRICA (150 mg caps) (expensive at over $60) and Nizoral 200mg tabs. For the first time in years I slept through the night and today I am pain free as the Lyrica is a nerve blocker shutting off messages to the brain.
So thank you again as I now feel I have the potential to be free of this debilitating and in my case, humiliating condition. A background in catholic education left me inarticulate and silent. But I am now free of the stigma and just spoke openly to my gym friends about the problem and was able to explain why I spent so little time talking to them over coffee as sitting was such an ordeal.
So thank you again and I hope that this information is useful to any other women who confide in you – K
Hi Bettina, A friend of mine, who is a doctor in Sydney, has just emailed an article entitled “The agony when things go wrong down there” which has prompted me to ask you a question largely because no one else seems to have any answers!!!!
My 8 year old daughter has had recurrent episodic pains in what she calls her “upstairs” which started just before she turned 6. It would wake her up at night screaming in agony and no one can touch her down there and she can’t keep still, constantly jumping about crying “make it stop, make it stop”. We have done the rounds of GPs, seen a paediatrician, a psychologist and have been to the RCH twice and they have just said it’s worms!!!! One GP even said it was all in her head which really made me want to punch her out!
Anyway, we tried the remedies suggested – salt baths, vinegar, etc, but they don’t work. At the moment, the “cycle” has finished again and she has been sleeping through the night. The current GP seems to think she could be constipated because she does seem to have wind with it but not always and she does go to the toilet regularly.
Is it possible that the problem you mention in the article, pressure with the pudendal nerve or something associated with that nerve, could be the cause of her pain? The clinics you list in Melbourne are only the Royal Women’s Hospital and the Mercy Hospital and I don’t think they would see an 8 year old. What do you think?
I am sorry to pose this question to you but no one else seems to know what’s going on. Everyone just says “there’s nothing there” and that’s it! We have even suggested they may want to consider some sort of test but all they did was an ultrasound on her lower abdomen and pelvis. Of course, the pain was not there at the time and she was fine because they “cycle” had finished by then. It can come and last for a week (the longest was the last time it occurred – 6 nights in a row of her waking up screaming the house down in agony) and then go again and not come back for a period of months or sometimes weeks.
Looking forward to hearing your reply and thanking you in anticipation, S.
Hi Bettina, After receiving a text from my girlfriend last night saying that the 7.30 Report had “my problem” on I quickly watched it on IView and couldn’t believe that they were talking about ME.
About eight months ago after staying in Brisbane for the weekend with friends we had a hot spa and after our spa and long after we were dried off, my husband and I had wonderful sex (not in the spa!) and that’s when my problem started full on. I had had a couple of twinges of something ‘down below’ not long before that after having my first one-off colonoscopy.
After the spa I got a UTI which took three courses of antibiotics to clear it up. It never really cleared up properly and after a few visits back to my GP I insisted she send me to a gynaecologist. I went to see the gynaecologist who took a quick look and said I had plenty of oestrogen and all looked good. I had my hormone levels checked and my oestrogen levels checked and it was 780 so no need for Ovestin. I had breast cancer in 2008 and had radiotherapy so no one really wanted me on Ovestin but my breast surgeon, said that if life was not worth living then she said I could try Ovestin. At the time wine, coffee and sex were affecting my life so I cut them out and the symptoms did ease but only minimally.
My symptoms were stinging on urinating and after intercourse about two days later I was having pain in my vulva region with lumps around the opening of my vagina and on my labia minora, and it took two to three weeks for the lumps to go down, they were the size of a small pea. I was using Canesten cream every day and night and it would be a band aid only. So in desperation I went back to see the Uro/gynaecologist again and he did biopsies of the lumps and high vaginal swabs and said I had a “pristine vagina”. I can tell you it felt far from pristine!! I might add I haven’t had children or been pregnant at all. My job is sitting all day and that was becoming unbearable. The gynaecologist said I didn’t need Ovestin so another month goes on with pain after intercourse where I was too scared to have sex. Fortunately I have a very understanding husband. I could not even put a finger on my clitoris or wash properly or wipe without severe pain. The gynaecologist also suggested I might have herpes simplex 2 but the biopsy came back negative and the blood test was negative also but he did suggest I take treatment for this. I was embarrassed by his suggestion to take this as my husband has been my only sexual partner. So I still haven’t filled the script. I live in a small town so would definitely not be filling the script locally!!!!
My husband and I were going to Japan in November for his 50th birthday so I wanted this fixed before then. Before I left for OS I had plenty of ammo to take with me, antibiotics, pessaries, cream etc. but on the Wednesday before we left I was in so much discomfort I went straight to the GP and demanded she do something before I go so we started Ovestin cream. She said get home and “get it up there” which I did every night for a week and then third daily. It worked like a miracle until the last week and I had a flare up of symptoms and the plane trip home was almost unbearable. So another course of antibiotics and then thrush!!!
My brain is in the shape of a vagina these days because it’s all I think about…
Over the last week or so I have been drying the area with the hair dryer and I have stopped all Ovestin and Canesten etc. I also get anal excoriation with the symptoms. I even changed my washing powder. I have a bit of urinary frequency some days but not often.
I am aged 49 and my husband just turned 50. I have worked for various specialists for the past 30 years but the last four years was spent caring for my mother at her home and our own home until the last eight months when she was in a nursing home. Invariably our sex life suffered. Our sex life was not anything to write about anyway in the past. We were very reserved!! I then started work again and now work in medical typing and type many gynaecologist problems similar to me.
THEN… I met Christian Grey and our sex life has never been better. In fact I and a lot of my friends felt the same. The best most adventurous sex we have ever had. My husband was ecstatic. Now I have this issue which has dampened our sex life incredibly. I am not getting answers and going around in circles and suffering in the meantime. Do you have any solutions for me or is there someone in Brisbane that I can see about this problem? After reading your website about it I used Vaseline today to stop the burning of the skin from my urine. I also have shares in Ural!!!
I hope I haven’t waffled on too much about my problem but there it is. Looking forward to seeing someone who can at least help with the symptoms. Many thanks, R.
Dear Bettina, My daughter was diagnosed at the age of 5 and ½ with lichen sclerosis. Like most women, I hadn’t heard of it. For years, on the advice of GPs and maternal and child nurses, I treated her ‘nappy rash’ with sudocreme, bepanthan and any other creams I could find. We tried Ungvita, Dr Wheatgrass superbalm and finally a GP suggested sigmacort cream. Nothing provided her with any sort of relief. One doctor suggested I was not keeping her clean and that I was applying too much cream to the area. She had terrible fissures around her anus and would get large sores on her vulva that looked like blood blisters. As a result of her discomfort she became badly constipated and would not eat properly. I was at the end of my tether. I think at this stage I had been trying to solve her sore skin for around 3 years. We were eventually referred to a specialist to deal with the constipation. Fortunately this doctor was able to solve the constipation problem relatively quickly (by this stage she was unable to feel when she needed to pass bowel movements and was leaking faeces) but she was puzzled by the skin not healing.
Finally we were given a referral to a dermatologist who took one look and said that she had lichen sclerosis and that he could help us. I could have kissed him I was so relieved (and he was quite easy on the eye!).
Now my daughter eats well, sleeps well and has normal bowel movements every day. For years we thought that the skin problem was as a result of the constipation but the dermatologist told us that it was actually the other way round. The lichen sclerosis caused her so much discomfort that it led to constipation therefore lack of appetite etc. Really, I think it affected her whole life. Since we started using the Advantan Fatty Ointment which the dermatologist prescribed her skin has healed and she is no longer uncomfortable. We’re not sure how long she will need to use the ointment and on advice from the dermatologist we occasionally stop applying the cream to see if her skin stays healthy. It doesn’t. The likelihood is that when she hits puberty the hormonal changes occurring will help. He is not sure if it will reoccur after menopause as there have not been any long term studies.
What he did say, though, was that lichen sclerosis is not that uncommon in children. He said that GPs etc will say that it is rare but that in his field he sees many children who suffer from it. Little boys get circumcised and that often solves the problem for them but of course girls are different (thankfully). Because we are treating my daughter it is unlikely that she will suffer from any of the horrific long term effects lichen sclerosis can have and we’re not overly concerned about the steroid cream as research shows that although it can thin the skin it quickly recovers once you stop using it – and the alternative to not treating it is much worse.
There does need to be more research, though. And there needs to be more awareness within the healthcare industry. My poor little girl suffered for 3 years. More articles like the vagina dialogues can only help. Regards, J.
I read your article in the Sydney morning herald ‘The agony when things go wrong down there.’
My 7 year old daughter has had severe pelvic pain since she was 3. We have been to so many doctor’s, tried lots of pain med’s, she’s had a few operations with nothing found apart from a small bladder which doesn’t grow as she grows. We tries to get a referral to a gyno for a long time and no dr would give us one until we went to the royal children’s hospital.
We got in to see Sonia Grover at the Mercy Hospital finally and she has been great. It was only about 5 months ago they think they found the problem, Vulval Erythromelalgia. It’s a rare condition in its-self but in the area she has it it’s even rarer. She was on Tofranil for 6 months with no relief, she is currently on a high dose of Gabapentin and Tegretol plus Tramdol for pain as well as panadol and nurofen. Exercise and the heat is the worst thing for her apparently. I’ve done lots of research on this condition but I’m still having a hard time. The dr’s in Melbourne have been great but they don’t know a lot about this disease. Our daughter has spent a lot of time in hospital over the years and has missed lots of school.
I’m emailing you as I thought you might have heard of this disease or have any information on how to help her deal with this life-long pain disease. J
Hi Bettina, I live on the Far North Coast of NSW. The problem started in around April last year when I became ill with chest and back pain and chronic fatigue. This was diagnosed as Barmah Forest Virus. I spent most of each day lying down with fatigue. I completely lost my appetite , lost a lot of weight and had severe insomnia. Then I noticed unwanted sexual arousal and this got worse. My genitals were swollen, I couldn’t sit down or stay still or get any kind of relief. It was extremely distressing and I became quite depressed. I became overwhelmed and couldn’t cope.
After 2 months of this I felt I had completely “lost” myself. I took an overdose of anti-depressant and spent a week in Hospital where they put me on Mirtazapine . The chest pain and fatigue disappeared and I got my appetite back but after a while I noticed the pelvic pain return. It seemed very random, was sometimes like severe period pain, sometimes a burning internal sort of pain and sometimes a strong feeling of arousal which seemed external and was centred around the clitoris.. I have one sort of this pain every day, varying in intensity. I have had it for the last 7 months but it is not as severe as the pain I had when I was really ill with the chest pain etc.
I would be grateful for any advice or contacts you can give me. I exercise, keep fit, meditate and watch my diet but would give anything to just have my normal life back. I’m lucky I have a very loving and supportive husband… still! Regards, D.
Hello Bettina, I missed the 7:30 Report on ABC last night, but fortunately, although over 70 years old, I do not belong to the secretive generation! There is no such thing as “too much information” and so all my friends (male and female) know about my affliction. And thanks to the sharing, one of them told me about the 7:30 Report.
I reported the night itches to a GP in 2009 who did not ‘diagnose’ the problem but recommended Hydrozole Cream. Within a matter of two applications this ‘cure’ ripped the skin from my genital area. Once healed, I continued to suffer the genital itches and tried various creams with no result. In 2011 I went for my final pap smear when a female GP actually diagnosed lichens visually. She referred me to a gynaecologist who performed a colposcopy and took biopsies of the vulva and cervix. The pathology report read (in part) “this raises the possibility of lichen sclerosis, however it is difficult to reach a definitive diagnoses due to small size of biopsy sample”. So that was $400 well spent :). Despite my reporting to this gynaecologist that I had a reaction to Hydrozole, he immediately prescribed Diprosone Cream (another corticosteroid). After several applications of this management technique, I went into shock (shortness of breath, vomiting, severe shaking) and presented with orange blisters all over my body. The gynaecologist got shot of me very quickly and referred me to a dermatologist who prescribed Prednisolone tablets – weight gain of 8 kg in four days, followed by Eleuphrat and Sigmacort. I was smart enough to test the latter two corticosteroid products behind my ears before applying to the genital area. When I phoned the dermatologist to report swollen, weeping ears, “I find that hard to believe” was the response.
Four to five months after the blistering I was referred to another dermatologist for patch testing. Guess what? I am highly allergic to corticosteroids (duh!). At this point I had a small vulval ulcer which I assumed had been caused by the inappropriate chemical bombardment. The patch-testing dermatologist prescribed Tacrolimus, a Protopic used when there is an intolerance to corticosteroids. Before application I insisted on another biopsy which confirmed lichens but no malignancy. I then applied the Tacrolimus whereupon the small ulcerated area spread all over the vulva.
I returned to the dermatologist who told me to increase the amount (“whack it on”) and frequency. After five more days the area was much worse. I did not return to the man. I went to another women’s health GP who referred me to two hospital clinics (three gynaecologists).
The score is now three GPs, four gynaecologists and two dermatologist. In the words of the last (female) clinic gynaecologist “Sorry sweetheart, you will just have to live with it”. I have given up playing tennis and going to the gym and cannot sit or walk without pain. That is what is called “living with it”. A poultice of weak solution Condy’s Crystals (permanganate of potash) before bed allows me uninterrupted sleep. I am now living with not only lichens sclerosis but the damage caused by the medical profession’s inept attempt to deal with it. My fridge is full of pointless medications. My bathroom cabinet has a ready supply of painkillers. The taxpayer (Medicare) and I have wasted nearly $2,000.
I read somewhere that 20-30% of women who visit gynaecologists and dermatologists suffer from lichens sclerosis. Gosh… I hope you don’t hear from all of them! Thank you for your patience in reading this. D (Lichens sufferer of Western Australia)
Dear Bettina, Thank you for your article in today’s paper.
I am about to start what I suspect will be a long journey to repair damage to my vagina due to intensive radiotherapy. I haven’t been officially diagnosed as yet, but the condition is likely to be vaginal stenosis.
Prior to commencing the radiotherapy, I told the oncologist that I was sexually active and that I wanted to know how this treatment would affect me. He referred me to the nurses, who provided me with three sizes of vaginal dilators and an instruction sheet. It was evident that they had little to no experience in this area of treatment or side effect. Their expertise – the nurses and doctors – in managing all other areas of side effects from chemotherapy and radiotherapy was extraordinarily good and I am very grateful for that.
However, there was, and is, a big silence about the effect on the sexuality of women from this treatment. Pelvic radiotherapy is very, very common.
I used the dilators as per instructions, re-opened my vagina, stopped using them and eventually we attempted intercourse. The pain was agonizing.
We are only in our fifties and not ready to call it quits. I will be tempted to slap the next person who says there are other ways to enjoy sex and that penetration is not the be-all. I used to love intercourse. My partner, who is pushing sixty, is easy about it either way but it is not fair to expect him to simply forgo it for the rest of his life!
So, I’ll be having words next visit to the Olivia Newton John centre, a much heralded cancer and ‘wellness’ centre, about this major gap in their treatment for women with cancer in the pelvic region.
Finally, I had anal/rectal cancer. This is becoming increasingly common although still relatively rare. It is related to one of the HPV viruses. The treatment, to avoid surgery and a permanent stoma, is chemotherapy with intensive radiotherapy to the tumour. Very, very painful. I’ve almost got over that, and now the next friggin’ hurdle! Regards, G.
Dear Ms Arndt, Thank you for the opportunity to be able to contact you. I have followed your articles, publications and television appearances for over 30 years. I was prompted to write to you after reading the article that appeared in todays Age, regarding matters relating to the vulva, and conditions endured by women such as painful sex and ‘lichen sclerosus’.
I am a 52 year old mother of three adult sons age 25, 23 and 21 all delivered by caesarean section and at the age if 35 I underwent surgery – a radical hysterectomy including oophorectomy (the latter occurred without my instructions or knowledge and I later successfully sued the gynaecologist who performed the operation). I suffered from endometriosis as a nubile younger woman and the reason I agreed to have the hysterectomy was that I was told endometriosis had returned and the symptoms were likely to be unbearable.
There were never any discussions between the gynaecologist, GPs, and myself about the impact this operation would have on my sex life.
I had no idea that the cervix was removed and that the vagina was stitched to a section of the bowel which would help it stay in place!! As previously mentioned I did not give permission to have my ovaries removed and as a consequence (of both of them both being removed) I went in to premature menopause 6 weeks after the operation – and apart from the physical changes and problems I had to endure I was in total shock and remained so for many years.
I had multiple episodes of mental impairment, including feelings of paranoia, feelings of failure feelings of loss., loss of woman hood etc I did not resume regular sex again with my husband after the operation due to feelings of imperfection, feelings my womanhood had been destroyed.
3 months after the operation I refrained from sex with my husband for many many months. 6 months after the operation I withdrew from any sexual activity at all.
My marriage of 16 years broke down, my husband left our family of 3 little boys aged 12, 10 and 8. I noticed many similarities between myself and my situation some 15 years ago and the women who were featured in your article. There is most certainly not anywhere near enough information for women who undertake the type of surgery I had. Part of me wants to know more about the impact this operation had on my sex life, and of course part of me doesn’t want to know.
Perhaps this is due to shame – perhaps due to regret.
Perhaps you may consider writing a piece about the impact of a radical hysterectomy, orephectomy on young women or indeed any aged woman. I am still a single woman and will remain so for the rest of my life. I have never had satisfactory sex since the surgery and have lost a number of potential life partners due to my reluctance to be involved in a sexual relationship. There is no doubt that the surgery I had as a 35 year old woman has had a shocking impact on me both physically and mentally. I hope to hear from you, D.