I had always imagined I’d write a book or at least a chapter about my work in early years education, not about the ongoing relationship I have with my intimate skin conditions.
In my twenties I accepted my lack of fertility and constant misdiagnosed bouts of thrush. Having a pinhole cervix, fibroids and endometriosis didn’t bode well and after numerous years of suffering and trialing different treatment, monthly Zoladex implants and key hole surgery to establish the extent of disease, I ended up having a full hysterectomy. You get used to being uncomfortable and begin to label it as such, rather than acknowledging it as pain.
But after a couple of years after my op I suddenly experienced a normality, no bloating, no heavy bleeding and no pain! However, the continuing whiteness and uncomfortable vulva continued, with sex becoming increasingly painful. I recall being away on holiday when my GP phoned to tell me to stop using the pessaries I had been prescribed for thrush, as my swabs had come back negative, she was unsure what was wrong. They did every STD test they could but still drew a blank. I was living away from home for a while and with a new GP when they decided to undertake exploratory keyhole surgery prior to my hysterectomy. It was at this point that I was first diagnosed with a chronic skin condition of my vulva, Lichen Sclerosus. I was sent away with Dermovate the strongest topical steroid they prescribe and told to apply if I become sore. No other information, monitoring or advice! I kept up the steroid when I felt it was needed but also tried alternatives, but to no avail!
Then as I approached my five decade year I noticed a spot on my labia that didn’t heal with the steroid, got bigger and became ulcerated. My GP referred me back to gynae and although being told I’d been seen within six weeks, there was no need to worry, so after a five month wait I was finally seen and sent straight away for a biopsy of my vulva.
Within two weeks I was told my LS had developed into pre cancerous cells of a high grade, dVIN. So on my fiftieth birthday I headed for my pre op, having being reassured they had caught it early and a WLE to rid me of the nasty invaders was the way forward. The surgery was pretty brutal as they had spotted a bigger area that they needed to investigate. Nine days later hubby and I sat in a very small quiet waiting room, awaiting the results to say I had vulva cancer!
On reflection from that point to six months after my hemi vulvectomy and removal of groin lymph nodes, is all quite a blur! I was fortunate to stumble across the LS and VC Facebook support groups, which helped me understand and process all I was going through. Now three years on I thought that was the end of my story but no it’s a continuing journey. I was diagnosed with vulva Lichen Planus, on top of LS, surgery has caused me to suffer with pubic lymphedema, which means I have to massage daily, balance the length of time I sit still or exercise and I have physio for damage surgery caused to my nerves and ligaments. I did mange six months of being in control of the LS & LP but my recent gynae oncology review has informed me that the LS is in a flare up, the LP is beginning to travel in to my vagina and there is another area that will be reviewed in a month.
I’m an up beat and confident woman but these silent invaders wreak havoc with my emotional wellness. It took a while, due to the pandemic, to access counselling and it is something I have definitely needed. Theses experiences change you, a cancer diagnosis throws it’s own issues into the mix and although I’m extremely grateful I was naive to think I would return to a life without issues. Yes I’m lucky to have amazing family and friends but I have changed and don’t often like to show how I’m feeling as I now feel it’s a burden, it’s boring or it comes across as me being negative, even depressed! Rationalising this negativity comes and goes, a clumsy comment can trigger a stress trauma which I can find hard to deal with. There is also the huge effort and expense of the required self care; products, clothing and feeling of self indulgence for needing to ‘find’ time to undertake all the self care.
I don’t write to scare or worry others but to highlight the constant need to defend our rights, to shine a light on the need for awareness and to get through those dark days. It is an invisible ghost that haunts my sleep and thoughts in a way I could never have predicted. I have to accept although compliant with all my treatments, it’s incurable and won’t leave me alone!
I try hard to enjoy every moment and not allow it to take control of me, even though deep down the anxiety can be hard to hide. So what I have learnt is to know your body, fight hard to be heard and be seen as only you know what is going on, nobody else walks your path or shares your pain. Be bold, be brave be true to you! X

To say that being diagnosed with cancer is bloody scary would be a gross\nunderstatement. It’s like being hit in the head with a hammer and\nsimultaneously being kicked in the nuts, although in this case it might be more\nfitting to describe it as a kick in the uterus!
\n\nI was first alerted to something being wrong in late summer of 2018 when my\nperiods got very painful.
\n\nHowever, this wasn’t the first change to my periods: about 18 months or so\nbefore I went to the doctor, my periods had been getting heavier and longer.\nBut these changes were gradual, and I put them down to my age and changes in\nhormonal balance. I thought maybe I was heading towards an early menopause,\nespecially as I occasionally used to get what I thought were hot flushes. I\nknow better now that I have experienced what real hot flushes are like. I also\nnow know that any changes to periods, gradual or not, can be a sign of womb\ncancer. But I had no idea then.
\n\nThe pain prompted me to see a doctor. There are several doctors who work at\nmy GP and I chose the one who specialises in women’s health. I’d heard stories\nof doctors not looking deeper into the causes of changes to periods but just\nprescribing the pill or a coil, and I thought that perhaps someone specialised\nin the field would be more likely to investigate the cause.
\n\nI was right. She said before we decide what to do about the long and heavy\nperiods, she would refer me to a gynaecologist. In the meantime, she prescribed\nme medication to help with the pain and heavy bleeding. They didn’t work. What\nworked best for me at this point were painkillers called Feminax Express.\nNormal painkillers worked, too, but I had to take more of them as they were not\nas strong.
\n\nFrom the initial appointment with my GP, it took nearly three months for my\ngynaecologist appointment in which they could tell that I had a thickened\nlining in my womb. Since they couldn’t tell more from this examination, they\nreferred me for a hysteroscopy. This time I had to wait about a month for the\nappointment by which time my periods had got even longer and I was having pain\neven when I wasn’t bleeding. I was having to take pain killers every day.
\n\nDuring the hysteroscopy, the gynaecologist took a biopsy, and then we waited\nagain. Not so long this time, though. When it was time to get my results, I\nasked my partner Justin to come with me. Initially, I was going to go alone to\nthe appointment to get the results, but I had a gut feeling that I would not\nlike the news. I’m so bloody glad Justin came with me.
\n\nThe moment my doctor mentioned the word cancer, I could think of nothing\nelse. The word bounced around my brain, leaving no space for anything else\nexcept: I can’t have cancer! I don’t want to die! Because, let’s face it, we\nstill associate the disease with death despite the progress made in treating\nit.
\n\nEventually I focused on what he was telling me again: I would need to have a\nhysterectomy and possibly further treatment after the surgery. OK, hysterectomy\nI could handle, especially as after I got home I Googled uterine cancer and to\nmy delight read that hysterectomy is often the only treatment needed to remove\nthe disease. For now, I’d focus on getting through the surgery and then deal\nwith the rest. Hoping that there wouldn’t be ‘the rest’ to deal with.
\n\nWhen I got home, I had to make the hardest phone calls ever to tell my\nfamily what was going on. How do you tell your parents and your sister and\nbrother that you have cancer? I’m afraid I was quite blunt; I just blurted it\nout. But then, I was crying from the word go, so they knew something was wrong\nstraight away. And what made it harder was that all my family is still in\nFinland (I moved here 25 years ago) and during times like this you want your\nfamily close.
\n\nThey were ready to come over whenever needed and my sister came over for a\nfew days before the surgery and my parents when I got out of the hospital. And\nof course, I had my partner by my side the entire time!
\n\nI still can’t believe how quickly everything proceeded after the diagnosis.\nIn less than two weeks after seeing my doctor, I was getting ready for the\nsurgery. I was, as everyone would be, nervous about the surgery but knew that I\nhad an excellent, experienced surgeon specialised in oncology. He, and all the\nother staff at St George’s Hospital in Tooting, were nothing short of amazing.
\n\nThe dedication, the positivity and the care of all the staff throughout my\nstay at the hospital was incredible. It made me fully realise how lucky I am to\nlive in a country with free health care and such amazingly devoted nurses and\ndoctors.
\n\nWhen my surgeon came to see me he explained that he had done a long cut from\nunderneath the naval to nearly my breastbone to remove the tumour and all the\ninfected lymph nodes. I was in a such a drowsy state that it wasn’t until a\ncouple of days later when he came to see me again that I fully understood the\nextent of the surgery. No wonder every move I made hurt like hell!
\n\nMy surgery was on a Friday and they let me go home on Monday since I could\nget to the toilet on my own and my bladder and bowels worked ok. I lost count\nof how many times they asked me about my bowel movements.
\n\nMy hopes of hysterectomy being the end of the treatments crashed when I saw\nmy surgeon two weeks after the operation. He is amazing at what he does in the\noperating theatre, but his people skills are not on par.
\n\nEven though he mentioned again that the operation went well and they got the\ndisease out, he then launched into an explanation of how my cancer was of a\nrare, aggressive type more commonly seen in women over sixty. Then dropped the\nother C-bomb: chemotherapy.
\n\nHe told me I would need several courses of chemo followed by radiation. It\ndidn’t make matters any better that he would not give me a clear prognosis;\ninstead he said something about it being hard to tell whether I would be in the\none-in-ten group that make it. He said he’d know more after I’d gone through\nthe chemo and radiotherapies.
\n\nNot surprisingly, I thought there was only a 10 percent chance of surviving.\nThe thoughts of death I’d had after the initial diagnosis made a quick\ncomeback.
\n\nMy opinion of his communication skills did not improve when, a few weeks\nlater, I received a copy of a letter he had sent to my GP. In that he mentioned\nthat the patient, that being me, became very upset during the appointment. Too\nright I did! Who wouldn’t when being told they have a very aggressive, rare\ncancer! I bet there would not be many who could receive that news with a stiff\nupper lip and a poker face.
\n\nLuckily, I also met the oncologist who was going to be in charge of my\nchemotherapy and radiation treatments at the Royal Marsden in Chelsea. I have\nsince discovered that she is the Head of Clinical Oncology at Royal Marsden, so\nI couldn’t have been in better hands. She made me feel better and more hopeful.
\n\nShe emphasised the fact that the operation had gone very well and there were\nno signs of disease left. She also explained that the purpose of the therapy\nwas to prevent the tumour from coming back or metastasising. Because she emphasised\nthat there was no visual evidence of the cancer, I could leave the hospital\nfeeling more positive.
\n\nMy six courses of chemo weren’t too bad. I lost my hair and had trouble with\nlow platelet counts, but other than that I did not have serious side-effects.\nRadiotherapy got me harder. The fatigue that hit me after about ten sessions of\nradiotherapy was nothing I had experienced before. However much I rested and\nslept, I was still constantly tired. It has taken months to rebuild my energy\nlevels, but I’m getting there.
\n\nMy experience has left me with the desire to spread awareness of womb cancer\nso that more women would know to see a doctor earlier than I did. Had I known\nthe symptoms, I would have known to see my doctor sooner and the cancer would\nnot have had the chance to spread outside the womb. When womb cancer is\ndiagnosed at stage one, the survival rate is around 90-95% depending on the\nsource. At stage three, the rate drops to about 50%. So early diagnosis, like\nwith all cancers, saves lives.
\n\nThe main symptom of womb cancer is abnormal vaginal bleeding. This includes\nany changes to periods or bleeding between periods. It also includes any\nvaginal bleeding after menopause.
\n\nSymptoms other than abnormal bleeding can include:
\n\n- watery or bloody vaginal discharge
\n\n- long lasting bloated or swollen tummy
\n\n- feeling full quickly or loss of appetite
\n\n- pain in the lower tummy or pelvis most of the time
\n\n- peeing more often than usual or more urgently
\n\n- diarrhoea or constipation
\n\n- back pain
\n\n- feeling tired all the time
\n\nRemember, having any of these symptoms, even abnormal vaginal bleeding,\ndoesn’t mean that you definitely have womb cancer. However, you should always\nhave abnormal bleeding investigated.
\n\nYou can read more about my experiences in my blog Cycling for Cancer\n(https://cyclingforcancer.co.uk/ ). You’ll also be able to follow our (my\npartner and I) preparation for an epic cycle ride across Europe in Agust 2021\nto raise money for the Royal Marsden Cancer Charity.

I was diagnosed with cervical cancer and then found out that it had spread to my vagina, bowel, bladder, 1 kidney, and the lymph nodes round my lower stomach in 2012.

I had radiotherapy treatment, which worked and I'm all clear.

Both cancer and treatment have wrecked my body and I'm left with a few health problems, including lymphoedema.

A few months after treatment I was having problems walking. It really hurt and i felt like my hips and thighs were congested and could only move in little steps. I just thought it was probably just because the cancer was located nearby inside me.

I had been in contact with my Macmillan nurse, who are amazing and supported my every step from my diagnosis. And she suggested that I could go for complementary treatment in their centre at wythenshawe hospital.

I was assessed there and it was arranged a physiotherapy session with a physio-lymphoedema specialist nurse. She immediately knew what it was and what to do. She pretty much gave me all the information and made sure I understood every little point. It was so comprehensive that I still use all that knowledge to this day. She advised my doctor to prescribe medical support tights which I have worn every day since. She also taught me manual lymphatic drainage and skincare exercise etc.

I believe that if it wasn't for McMillan and their centre (which looks like a little log cabin) I would still be suffering with it now. They said it would never get better but I could stop it getting worse. I DID make it slightly better, though. My legs were regularly measured until they stayed settled.

I feel pain every day but I'm still aware that it could be so much worse. I try my best to not break the skin on my legs and keep my weight down and to elevate my legs when they swell. It's a pain in the summer when they get worse in hot weather but every year it gets easier because of all the techniques I pick up. I make a spray with cold peppermint tea that is brilliant!

I’m a glass half full kinda gal!
So when I had to have two lots of surgery to remove cancer from my vulva and lymph node extraction I put the lymphoedema leaflet in my ever growing medical file. I left hospital with a vulva the size of a small continent and one node site weeping! At this point no one mentioned that leaky wounds usually need antibiotics and to remain covered! So unsurprisingly I became very right side swollen as I had an infection. We all assumed that the swelling would go down as the antibiotics kicked in. However what then followed was a few months of a wound ejecting fluid in a very dramatic and terrifying way, swabs constantly taken to ascertain the correct antibiotic and pain in my pelvis, groin, buttock and pubis. Slowly the swelling subsided but my right side was , and to date still is painful and often swollen. It was at this point that lymphoedema was to be investigated. I had to be measure and probed for moisture levels to then be told yep I can confirm you have genital lymphoedema! Right I better dig the leaflet out and establish what this means.
In layman’s terms lymphoedema is swelling caused by a build up of lymph fluid in the body but if the lymphatic system is damaged or inadequate it cannot handle the usual amount of lymph and fluid builds up in the tissues.
So now I have to wear compression tights, slight issue I’ve been allergic to any materials other than cotton since I was a child! So I had to wait to have some special cotton ones made and when they arrive you get one pair, that you wear all day until bedtime. Pre operation I was a very flexible girl and proud that at fifty I could still do the splits and get myself in a crab position. Now I can’t even cross my legs! So getting compression tights on is like an Olympic event, coupled with the fact that half my vulva has been removed and I suffer from a chronic skin condition, vulva lichen Sclerosus. Which means I prefer to be commando and cool!
I’m only recently diagnosed so I’ve just started having physio, I’m to be taught massage techniques and my lymphoedema nurse is exploring the use of low light therapy.
I used to love driving but now it causes a dull ache and pain. Due to recovery time I am carrying more weight, which in itself does not help. To be honest it’s manageable but pretty exhausting and until now I’d been proud not to have had cellulite on my slim legs! I’m beginning to feel pretty gross about myself and everyday is a battle of what I can wear that’s comfortable and if I’m going to need pain killers to get through the days activities!
Zoe Breen aka ‘flumpy foof’

I couldn’t tell you when this journey started for years I had this itch, was treated for thrush with cream and tablets that didn’t help.
Then I had my routine smear and they had to retest as there was a lot of bacteria there so they said I had bacteria vaginosis and put me on antibiotics, I thought great at least now they know what it is and they are treating it.Unfortunately not the itch went and by this stage it was doing my head in and thought I’m just going to have to live with it.
Months and years went on and this itch got worse and then a open sore developed. By this time I was back for my next routine smear the nurse looked and said we must keep an eye on that broken skin you could have eczema and gave me a mild steroid cream which didn’t help much. Another few months passed and I decided back to the doc to see about this open sore. Well the doc didn’t even look and said could be due to starting menopause and gave me HRT suppositories, had my answer yes this will be the end of it. This was coming up to Christmas 2017 and had been going on for over 5 or 6 years. I used the suppositories all through Xmas and repeated my prescription in January but it wasn’t helping it was actually getting worse. It hurt to sit it hurt when I walked and the itch was so intense it kept me awake at night. February came and one day I was sitting in work nearly crying in pain got up rang my doctor to make an appointment and told my supervisor I was going. Saw the doc that afternoon she gave me an examination and said I needed to be referred straight away for a biopsy. Three weeks later I got my appointment to see a gynaecologist he examined me and said didn’t think it was too serious but would biopsy it anyway. Got my date for April for my biopsy after my procedure my gynaecologist came to see me and said didn’t think it was anything sinister and he would see me in a few weeks. Four weeks later I was sitting in my gynecologist office to get my results he said your biopsy came back you have vulval cancer. No words just tears , said we need to bring you in to have a radial vulvectomy this was double dutch to me.
I cried all the way home in the car on my own. Got my phone call three weeks later to come in for my operation had a CT scan the day before my op on Tuesday 5th of June my 48th birthday. Had the op on Wednesday and gynaecologist said all went well they took some of my lymph nodes and he said they looked a bit nobly. Stayed a week in hospital and home to recover told me they would see me back in a month. A week later got a call could I come in to see my gynaecologist today. I knew this wasn’t going to be good news. He told me cancer had spread to my lymph nodes and I would need 25 sessions of radiation. Radiation was a nightmare first two weeks were ok but after that the burn started I could barely walk coming to the end of it. My dad brought me to all 25 session and said he could see me getting slower walking as the days went on. After it was over I had to go back daily to get the burns cleaned and dressed. Went back to work on the first of October thinking I could put it all behind me. But it’s always there in the back of your head I don’t think there is one morning I have woke up and not thought about what If it comes back.
So June this year a year after my surgery I felt a small sore. It’s starting all over again went to check up and needed a biopsy went back for results and they told me there are precancerous cells . This is called VIN Vulva intraepithelial neoplasia. Also told me I hadLichen sclerosus which could of been the start of it all but was never diagnosed.
So as I stand I’m waiting for my next operation and hoping and praying 🙏

I first became aware I had this terrible disease when for no apparent reason I couldn’t stop itching and burning out of the blue one week almost exactly a year ago! I remember the time because we were due to go on a celebratory cruise for joint 50th and 60th birthdays for my husband and I and also as a delayed honeymoon.
In recent years intercourse had been problematic for us for quite a while, my husband has prostrate cancer and after having biopsies, it had left him with erectile dysfunction. I would also need an antibiotics every time to stop the reoccurring urine infections that I would get every time we made love. I also have Fibromyalgia and am registered disabled so am used to unusual pains etc.
However this burning and itching was something else, I also noticed one side of my labia seemed longer and thicker than the other.
I booked in to the GP, she didn’t say anything but agreed to send me to see a consultant gynaecologist . As I have a private health care scheme and was going away in 7 days I told her I would see someone privately first of all.
My first appointment was at a BMI Hospital. I saw my consultant, who barely spoke to me. She asked me to pop up onto the couch, had a quick look. As I was getting dressed she told me I had Lichen Sclerosis , that I needed to apply this steroid she was going to give me very liberally, all over 3x a day that I should get through 3 tubes in about 1 month when she would review me for a biopsy to make sure there wasn’t any cancer, and off I go! My head was swimming!! I had just been given a diagnosis for what? What is it? What happens now? Will it go away? Why do I need a biopsy? What was this medication?
I came home and cried. Then I looked up the words Lichen Sclerosis and found the name Jane Lewis, I messaged Jane on messenger and explained what had happened, she gave me the details of the the Lichen Sclerosis UK support group on Facebook. This turned out to be my lifesaver. Thank goodness I listened to my wonderful friends/family on there who said” how much dermavate”!!!!!! You will be red raw!!!!! So I only put on the normal twice daily etc.and was guided by my wonderful experienced ladies and pharmacist.

After returning from our cruise I decided to see another consultant as my LS was still out of control and my Vulva was looking very strange. I researched and found a lovely consultant locally. When I saw her she was indeed excellent and it was such a different experience. She took the time to explain what LS is, where exactly I have it, she then gave me a whole leaflet on the best ways to look after it how to get into remission. Then she said that she didn’t think I needed to go through a biopsy as it was too stressful and that someone like her was experienced enough to see and judge it. I explained to my consultant that I couldn’t afford to see her any more privately and she said that’s not a problem as she would ensure I could see her on her NHS patients list. A fabulous, kind doctor who even took the time several time’s to follow up with emails sent home. I left with more knowledge on how to use the dermovate and on a strict regime of using it with moisturisers etc.

Finally my NHS appointment came through, at this point my LS was again out of control due to going through an incredibly stressful time. I went along to it, only to find I’m under a different doctor yet again. He takes one look, says “ hmm not sure what that is, but don’t think it’s LS ( even though I showed him the letters from both other consultants) then he calls in a more senior doctor who then agrees with him! They then decide I need a vulvoscopy and to be seen by a Vulva specialist. But this again can take time and if I could go privately I should.

Again I’m bleeding with an incredibly sore Vulva my shape is changing rapidly, so I ask my private Gynaecologist who she would recommend. Then I go and see this fantastic lady a Vulva specialist. . Again this lady takes one look, says it’s LS with moderate -severe vaginal atrophy, this is actually the first time anyone had said these word. I knew this, but no one had confirmed it!. I felt sick, now it had been confirmed, my worst nightmare. She says she doesn’t need to do a Vulvoscopy straight away but can do it later on, as I’m booked in on the NHS I may as well have it done there anyway. . I get the pricing for it privately anyway just in case, and I’m covered. But she also says I can see her in the NHS. She gives me loads of advice, everything from diet to what to wear. She has now also included 2x a week vagifem into my meds to help with the VA and said to use coconut oil in the morning and dermovate in the evenings only now.


My appointment for the NHS arrives, for my vulvoscopy and to see the consultant. I’m expecting to see my consultant but alas it’s to see another doctor but someone who I’ve heard is excellent. As before however they need to change the appointment. When they reschedule it, I make sure there are the two appointments together, vulvoscopy and consultation.
I go along and wait for over 90 minutes for a 09.10 appointment. I see this lady who asked a few questions, re what meds am I on how long have I had symptoms, I try to bring up my vaginal atrophy and my menopause symptoms to see if she can suggest extra Vagifem or HRT as has been pointed out in the groups. Her reply is simply “ I’m only here for your Lichen Sclerosis, you can ask your GP about those things”!! I honestly couldn’t believe this.
She then asked if she could “take a look” and that she had a student with her so would I mind? At that point I was so pissed off if the entire Welsh Guards came in I just didn’t care. She had a quick look, did an internal where she said my vagina was extremely tight as well as the pudental nerve suffering from being over stretched . She followed that with a “you can get yourself dressed now and we can talk over by my desk”.
She told me that she wasn’t entirely sure if I had lichen Sclerosis, but that I was extremely tight and that my pudendal nerve was overstretched! She also said if I wanted she could organise some physio for my tightness, but it was up to me at this moment in time? Then she showed me how to sit and loosen my pelvic floor muscles which are way way too tight! “ By now I am so fuming I can barely speak, not only has she refused to answer my questions on my vaginal atrophy but she also hasn’t done the vulvoscopy which I was booked in for… plus she is guessing about my diagnosis!
I couldn’t get out of there quickly enough! I mumbled something about not taking up the physio yet, then she simply gave me a piece of lined paper with dates on which she asked me to record what I used each day for the next six months, before handing me a sheet to book again in 6 months time.
I was in and out in about 10 minutes.
After this awful appointment I telephoned the secretary to ask to be moved from her clinic to one of the others clinics. Her secretary actually had the Gaul to argue with me! When she said why, I replied that I was supposed to have had a vulvoscopy and it wasn’t done. The secretary answered “ do you even know what that is? She had a look at you didn’t she”? To which I replied” A vulvoscopy is where they place an avid over the Vulva and look through a special microscope! She went very quiet, and simply agreed to remove me from her list and hand me over to the others.


Why is everything such a battle for us. I’m now waiting for my new appointment to come through and with any luck it will be with my lovely Vulva specialist, but then again in my experience. Who knows. Meanwhile I’ve been back to my wonderful GP who has put me on HRT so for now I’m just hanging in there.

I had grown up with endometriosis and the lack of GP knowledge over “just sore periods” and being told to have babies as that would fix it! Roll on to a ruptured ectopic and 9 miscarriages, none explained but possibly down to my endo.

At 44 I decided to get sterilised as I could not go through any more emotional or physical losses. GP said no but referred me to gynae who agreed. I was told that my remaining ovary (remember the ruptured ectopic) was cystic so they removed it. Nothing else was explained.

About two years later I felt awful, it was like I had 3rd degree burns in my groin, all around my vulva and going all the way back to my bottom and beyond. GP took swabs and gave me steroid cream. It didn’t work, I was in severe pain and my marriage and work were suffering. Eventually I was referred to the Colorectal unit! Why I asked? Well it could be piles!! After very invasive and painful examinations such as colonoscopies etc the consultant said there was nothing he could do,oh by the way are you in the menopause yet?

You could have slapped me! Menopause? Surely not! I feel stupid because although I know a lot about my reproductive system, I would wouldn’t I, it had never occurred to me that the loss of that final ovary would have sent me down that rabbithole to Menopause land. I started investigating and went back to GP who insisted on blood tests! Pointless if I have no ovaries but what the hell, had the tests, yes you are perimenopausal. No advice, nothing. I was so low, no sex, felt like I had the flu, my genitals were on fire and obviously this was sending anxiety sky high!

It took me two years to get HRT, sequential to begin with which flared my endo so I demanded combined as I still have this useless uterus, see I was now educated in HRT? My GP and nurse weren’t, this HRT was going to shorten my life according to them! Poppycock!

The burn and cuts on my vulva were still making my life a misery, to the point of suicidal thoughts. Pain on sitting, pain on standing, pain on lying down. An excruciating need to scratch so I ended up wearing mittens to bed, like a bloody baby!

Eventually I self-referred to the Sexual Health Clinic. In the Highlands we no longer have a Menopause Clinic! So off I went, in disguise, surely only STI patients need sexual health? This consultant actually examined me! She was shocked at how severe this thing called Atrophy was! Atrophy I asked? Well now with a brain full of even more knowledge and a nice hospital prescription of Vagifem pessaries, antibiotics, steroid cream and lidocaine off I go. Things started to improve, it was a bloody miracle finally! Then it came back. Multiple appointments later I’m told vulvodynia. Nope I know it’s not, check me for LS please. Biopsies and swabs show no LS thankfully but what is happening? Just use the numbing Lidocaine to re=educate your nerves!!! I’ve been going round in circles!

GP is now fighting me over HRT, Vagifem and Estriol cream, the things that make my life liveable. Through groups of other women I have found out that Lido thins the skin even more! I can’t get transdermal gel in my area so I’m taking oral combined HRT, no surprise the GP is trying to scare the life out of me. It is a daily struggle to be a wife, do a job and not just give up. The physical pain, the mental torture and the constant thoughts of “is this going to be forever?” It hurts to pee, itkills to poo and my inner vixen has run away. I jump in meetings often, like I’m stabbed, I make excuses, die a little inside and just get on with it, this miserable existence focussed on my genitals that no longer even allow me to be myself.