Alexis Clayton – Endometriosis
After the surgery and not the laparoscopic kind, I had to have an actual old fashion surgery, like a C-Section. I found out that I’ve been suffering from severe Endometriosis along with the types of cysts that don’t go away on their own. My Doctor was able to remove the cyst and the wall of the cyst , that was almost as big as a baseball. Right around 6 cm and a cyst on the other ovary, burst right before surgery on its own.
I’m recovering well, even though it is painful and to be honest at times depressing. Being limited to what I can and cannot do isn’t easy, however I need to give my body the time and TLC it needs to recover properly. My scar is a strange new thing and I don’t like looking at it. I’m not cured and I still experience “healing” pain as well as the pain from the Endometriosis, so it’s been a rough road this far.
I have options and am exploring them all, however it’s a tough decision about what to do at times and I’m saddened by most of the news I got from my Dr. after my surgery.
I’d like to share this experience with you… Hopefully my story can help someone else. By my sharing treatments offered and information as I get it, with those of you who are going through the same thing I am. We can all share our experiences with each other and hopefully find a solution for each one of us. I will continue to update this journey as it progresses. I also encourage you to share your story with this illness, about how you cope and treat Endometriosis. We are not alone in this and can be a support to others who also experience this illness.
All my love,
|I began having a burning pain from the lower abdomen to the clitoris with a feeling of pressure on the bladder in 1985, when I was 33. Although continuously tested, no urine infection was ever found. When episodes of discomfort were too long, and because of a history of kidney stones, cystoscopies & ultra sounds of pelvis and kidneys were done to no avail, In between tests the pain would flare up on a regular basis, for a couple of days or half a day. It appeared after intercourse, sometimes when under stress or for no reason at all. Late 2001 I had a swollen right Bartholin gland as big as a golf ball (blocked duct it seems, which didn’t show any infection). The gland went down after a few more flare up (which coincided with intercourse). The discomfort increased with a vengeance and became intolerable, I couldn’t stand any piece of clothing touching the area. The pain was quite strong at the tip of the clitoris and my skin around the vagina was ultra sensitive, which made me think that it was nerve damage and not a urinary infection following another negative urine test. I visited the doctor four times in a row, was given two lots of antibiotics for more suspected urine infections. I was perimenopausal at the time. After a very long cycle and very painful period pain I had to visit the surgery once more with thrush and that clitoris pain that wouldn’t go away. The doctor took a swap to eliminated infection of the urethra. I mentioned to her that I felt I had problem with a nerve and not my urinary track. The pain was reacting right through my body; I could feel sensations on my extremities when it was at its worst. I was so desperate I searched on the Internet to find answers. My doctor agreed with me and said there wasn’t any real cure for what seem to be vulvodynia, and I asked her to give me a referral to see a specialist to get further advice. By that stage the pain wasn’t giving me much break. The pain around my pelvic flour increased. I felt a extremely burning pain in the vulva area and also painful tightness of the vulva and strong contractions of my vagina & buttock, especially when sitting. it affected also my thighs, my hips and my back. I felt the sensation going through my body even down my legs. Anything touching my clitoris would exacerbate the problem. but no sign of any skin problem or rash. I found it hard to go to sleep most night. I took the occasional sleeping tablet but when I woke up, it flared up again or It actually woke me up. I would have breaks, short one usually. The pain was not always at its peak. Sometimes if my mind was extremely busy (eg. talking to a friend for a long period of time) the pain would subdue a little. I was handling it but some days when it was too painful for too long I would despair especially at night. After more than three months of intense pain I saw a dermatologist. She examined me and could not find any visual problems and told me that I had a neuropathic pain with no other explanation. She gave me a prescription for Endep (Amitriptyline) to increase slowly as necessary. I was reluctant to take antidepressants but didn’t have much choice. I was very fortunate that it helped reduce some of the pain and I could have better life. 15 years later at 65 years of age, I still take Endep. I still feel pain some days more than others but I manage it not wanting to increase my medication higher than 25mg unless I can’t cope anymore, I then increase the dose to 50mg. I’ve tried to stop taking Endep a few times but within a couple of day the pain becomes so bad i have to get back on medication. Since menopause I have experienced tingling in my legs regularly and have a lower back problem. It helps if I sit straight on a firm chair without pressure on my lower back which triggers my nerve. Anything too tight around the pelvic floor also triggers the problem. I research regularly on the net about the latest on neuropathy around the pelvic floor as a lot more is written about it these days. I realise now that my nerve neuropathy is actually Pudendal Neuralgia. I don’t know how I have developed this neuralgia, maybe because I had an ovarian cysts surgery and two caesarean sections (with epidural) on the same spot. Following my second caesarean in 1981 I experienced terrible pain in my legs as my lower body woke up from the epidural, I wasn’t given any explanation to why. Otherwise I cannot recall any trauma or injury that could’ve have caused the pudendal nerve to react this way. I didn’t realise so many women & men were experiencing pelvic floor & genital pain, more medical research is needed. Having read the stories of other ladies who are suffering so much, I feel very fortunate with the fact that I can keep my nerve pain under control and I am glad these days that women are able to speak up and get help. Thank you for letting me share my story, it wasn’t an easy thing for me to do but I hope it helps a little.
I have a story with regards to woman’s health and I feel it needs to be shared, not only to raise awareness of the disease, but also to offer some hope to others wishing for more children after experiencing a molar pregnancy.A molar pregnancy (‘hydatidform mole’) is a type of pregnancy related tumour, or ‘gestational trophoblastic disease’ (GTD). This awful disease would have cost me my life 50 years ago before they knew how to treat it. For that I am so thankful for the advances in the modern medicine.In 2012 my partner Trent and I welcomed our first little baby boy Charlie into the world. Two years later in late 2014 we fell pregnant again. It was a perfect 3 year age gap for the baby to be and Charlie, we were thrilled.I was about 6 weeks pregnant when I noticed some vaginal spotting. I had experienced this during my pregnancy with Charlie so I wasn’t overly alarmed, but I made an appointment with my GP for a check up just to be on the safe side. Little did I know that from here my nightmare was about to unfold.
My GP ordered an initial ultrasound scan which turned out to be inconclusive, so I was referred to King Edwards Memorial Hospital for Women for a follow up scan in two weeks time. They hoped that during this time the pregnancy would progress so they could obtain some more conclusive results.
During that two week wait my anxiety sky rocketed, I was a bundle of nerves wondering if everything was going to be ok.
The doctor was lovely. He said he was terribly sorry that my pregnancy was not viable and that I would be scheduled for a ‘D&C’ (dilatation and curettage) the next day to remove the ball of cells that was growing in my uterus. I told myself it would be alright and that miscarriages are the body’s way of rejecting something that’s not quite right. That’s what I told myself it was – a miscarriage. If only that was all it was.
I was sent home with some information but found myself frantically researching online for answers to my growing number of questions. I discovered that molar pregnancies are rare, affecting approximately 1 in 1,500 pregnancies. There are two types – partial moles and complete moles. A complete molar pregnancy (the type I had) is a type of gestational trophoblastic disease which forms when a sperm fertilizes an empty egg – or an egg that has no foetal material in it. Hence no baby forms, and instead the placental material grows into a cluster of ‘grape like’ cysts. I realised that this was the ‘snow storm’ I had seen on my scan. In a cruel twist these placental cysts fill the uterus making you not only feel swollen like a normal pregnancy, but they also release large quantities of the pregnancy hormone HCG, adding all the other usual symptoms women experience in early pregnancy. It is only through an ultrasound scan that the complete absence of an embryo is discovered and the woman learns that she is not in fact pregnant as her body had tricked her into thinking it was. I learned that in most cases the diseased tissue can be removed with a D&C, and if necessary, a follow up course of methotrexate chemotherapy injections. As it turned out however, I had a much more aggressive and invasive molar which was about to make itself a very comfortable, yet very unwelcome home inside my body, and which would call for a much more severe course of treatment.
I had my D&C the following morning and was discharged home from hospital the next afternoon. At that point I thought that the ordeal was over, and that we could start to grieve for the pregnancy we thought was to be Charlie’s sibling and our second baby. However a few weeks later I received a call from the women’s hospital telling me that the pathology results from the D&C were back and it showed that I had a ‘complete hydatidiform mole’. They told me I would need my HCG levels monitoring over the next couple of weeks to confirm that the hormone was reducing as it should (rather than increasing which would indicate that the molar cells were growing back).
I went in the following week to have my bloods taken and less than 4 hours later my phone rang – it was one of the lovely nurses from the emergency department. I remember feeling so confused as to why she was calling me. She told me that my hormone levels were rising and that I needed me to come back in for another blood test in a few days. My worst fear continued to unfold – the next blood test came back showing that my hormone levels had tripled, and I was told that I urgently needed to start a treatment course of methotrexate chemotherapy injections.
I instantly panicked and took to Dr Google to try and find answers to all my fears. I researched and read so much in those subsequent few days. I worried myself sick over the concept of chemotherapy and spent the next few days crying and in pure disbelief at how something that had started out as one of the most joyful moments in my life had so quickly turned into a living nightmare. My molar tumour had grown back and was growing fast. It was mimicking how a cancer would grow and they now needed to constantly monitor my HCG hormone levels throughout my treatment to track its growth. I was treated like a cancer patient. It was then that I suddenly realised how serious my situation had become. I will never forget that day when I changed the folder I had once excitedly labelled ‘Pregnancy File’, to my ‘Cancer File’.
I remember my trips into the hospital over those following weeks to have my methotrexate injections every third day, and then anxiously awaiting confirmation of my blood test results to see whether the treatment was working or not. Initially everything went well, it reduced my HCG hormone level down by half – an excellent and promising result. By this stage the wonderful nurses at the women’s hospital emergency department had become very involved with my journey and were a constant source of support with their encouragement and sense of humour.
A few weeks into my methotrexate chemotherapy however I received a call from the hospital telling me that while the treatment was bringing down my HCG hormone levels, the reduction was unfortunately not as significant as they had hoped for. They told me I needed to come in for more tests and would see how I responded to the next round of methotrexate injections.
It was at this point that everything took a turn for the worst. Up until this point I had felt sick the day after each of my chemotherapy injections – something I had been told to expect from the outset. I called it the ‘chemo train’. It would tend to hit me me 24 hours after my jab. But this time I felt a different kind of sick. It was an all too familiar queasiness… just like when I was pregnant. I knew this only meant one thing – my pregnancy HCG hormone levels were rising – my molar cysts were growing.
Completely overcome with panic, I took Charlie for a walk to the park to try and get some fresh air and gather my thoughts. No sooner had I started to push Charlie on the swing than I felt a gush between my legs as if I had wet myself, only when I looked down I saw it was blood, and a lot of it. I immediately called Trent who picked us up and took us straight to the hospital. Thank god he wasn’t at sea, I still don’t know how I would have coped that day without him.
I arrived at the women’s hospital emergency department and they immediately called in the specialist Gynaeoncologist. Within minutes of being examined he told me that I had two new tumours growing at the entrance of my vagina which had ruptured and caused my huge bleed. My blood test results also showed that my HCG hormone level had quadrupled. The molar tumour had grown back in my womb, leeched through the walls of my uterus and metastasised (spread) into my vagina. A chest x-ray also revealed that a small nodule was growing on my left lung. I had become resistant to the methotrexate chemotherapy and the tumours had grown back with a vengeance. The specialist explained that the disease had progressed to the ‘high risk’ category. I needed immediate hospitalisation to start an intensive high dose chemotherapy regime called EMA-CO.
I was devastated. My imagination went wild and I was gripped with fear. I was admitted to the oncology ward at Sir Charles Gairdner Hospital that afternoon and started on my new chemotherapy cocktail consisting of five powerful drugs. I remember sitting there being hooked up to all the drips trying to get my head around the nightmare that was unfolding. My tumours had spread; they were pumping me full of poisonous drugs; I was going to loose all my hair; my two year old son was going to watch this all happen; and my partner was leaving the next morning to work at sea for four weeks.
Trent’s work at the time involved accruing sea time towards a qualification he was in the process of training for. He loved his work but it was a strict and inflexible roster, and as much as he wanted to, there was no way he could stay home for any longer than was dictated. The qualification he was working towards would ultimately open new doors for him down the track, but also meant a huge drop in pay in the meantime. Spending so much time in hospital and being so sick in between I was unable to work, and unfortunately being casual, I had no entitlement to any paid sick leave. All of this couldn’t have come at a more difficult time for our little family and we struggled hugely financially. We had a mortgage to pay and a young mouth to feed, on only half a wage.
The next few months were gruelling but somehow we got through it. I was admitted to hospital at the beginning of each fortnightly cycle for a 2-3 night stay where I was infused with a huge bag of methotrexate and would then have to wait for the levels to clear to an acceptable level before I could be discharged. This was often a frustrating and protracted process. I would then complete my cycle at the end of the fortnight as an outpatient having another three chemotherapy drugs administered. I distinctly remember one of them used to feel like it was burning all my sinuses when they injected it. I dreaded it every time.
Before long my hair started falling out all over my pillow. It was at this point that I made the decision to take some control over my situation and cut it all off. I enlisted Charlie’s help in the hope that involving him in the process would also give him some sense of control and understanding about what was happening. He was a jovial, confident little boy, but his world had been turned upside down and I could see he was carrying my illness too. He had been playing up at daycare and I felt it was important to involve him rather than shut him out. He was only two at the time and I just hope he doesn’t remember it as vividly and painfully in years to come.
We made a video together that day. Trent filmed while Charlie and I sat side by side in the courtyard of our little house, taking to my long blonde plait with a pair of scissors. Although my stomach was in knots there were no tears. I was determined to be brave for my son, and as always drew on my Scottish sense of humour to get through it. After that we headed to a wig store I’d found called Curly Sues. It was a sad day but I felt like I had taken charge of the situation. It was an important step in a journey that had taken charge over me. They shaved my head and we had fun choosing a wig together. Of course we tried on some ridiculous ones as well which Charlie absolutely loved. Trent also shaved his head in support that night (with Charlie’s help of course), as did my brother back in Scotland and a close friend in Sydney. It was a hugely emotional time but I felt a great deal of love and support around me. My mum flew over from Scotland to help during my treatment, and Trent’s parents who lived locally were an enormous support as well. I don’t know how I would have coped without them all.
We posted our video on social media and it was shared and viewed more than 40,000 times. So many people were in total shock. They could not believe what our little family was going through. Nobody had heard of a molar pregnancy. They could not believe that something so wonderful could end up so devastating.
In the weeks that followed I had CT scans, MRI scans, PET scans, and I was fitted with a PICC line (a long term central cannula for easy intravenous access). While I was in and out of hospital my family and friends juggled taking care of Charlie, cooking meals, helping with housework, and just making sure I was ok. I will be forever grateful for all the support I received.
I had six cycles in total of EMA-CO chemotherapy and my HCG hormone was dropping hugely in response to the treatment – it was killing off my tumours. I was in hospital having my final treatment dose though when I started to feel acutely unwell. Before long I was in excrucniating pain and called for a nurse who gave me some strong pain relief. I had sharp lower abdominal pains that were getting more and more intense. In no time at all I realised the familiarity of my pain – I was in labour. In the hospital bathroom that night I used a bed pan over the toilet and gave ‘birth’ that to the tumour that had made itself a home in my womb for the past five months. The nurses were baffled. They had never seen anything like it in all their years. They called in the doctors who were gobsmacked.
That was my final treatment – March 2015. It couldn’t have been further from how I’m doing pictured my pregnancy ending up all those months ago when I’d so excitedly discovered that little blue line on the stick.
That night we celebrated with a bottle of bubbly upon my return home. I had just gone through the most bizarre, awful time of my life, but it was over and we were elated. As you would expect, I feared for my future health and fertility – the chemotherapy drugs themselves were a powerful cocktail of poison that I worried would have wrecked havoc on my reproductive organs. For the next 12 months I had to have monthly blood tests to check my HCG hormone levels remained low, and we were advised to wait a year of being ‘cancer free’ before it was safe to try and conceive again. At the time I remember a year to wait felt like a life time.
The stress that came with my monthly blood tests and the fear of my HCG levels rising again was unbearable. I often ended in panic attacks waiting for a call from the hospital after my blood was drawn to hear whether or not I was still ok. I became so familiar with the nurses, they had become so involved with our journey, I don’t know what I would have done without their reassurance and support. I am still in touch with some of them to this day.
A year eventually passed and to our absolute delight we fell pregnant again. Joy quickly turned to fear though as I panicked that this was going to be another molar pregnancy. I was acutely aware that having already had one I was much more statistically at risk of having another. Desperate to find out if we had a viable pregnancy we had an ultrasound scan at five weeks and two days. I was told that it might be too early to see anything, but almost immediately we saw the flicker of a strong heart beat on the screen and I burst into tears. We could not believe it.
We welcomed Charlie’s gorgeous sister, and our beautiful daughter, Indi Olivia Welburn on 3rd February 2017 by emergency C section, four weeks early – delivered in the very same hospital the journey for our second child had first begun – almost two years later.
She is a delight, and we are so blessed to now be a happy, healthy, family of four. Trent has since proposed, and my hair has grown back even thicker and more beautiful than before I lost it. It goes to show that after such a hard time we truly got our rainbow after the storm.
Ending a stigma. It’s easier said than done, right? End the stigma or #endthestigma is a community launched in 2017 targeting mental health awareness. An excellent community I have previously used to help with my negative thinking patterns and anxiety at the time of a health scare I was experiencing.
My health scare was possible cervical cancer.
Each year 3,000 cases of cervical cancer are diagnosed in the UK and in 2018 930 females were diagnosed in Australia. Sexually active women aged between 30 to 45 are the highest risk.
I emigrated to Melbourne, Australia, for work nearly 2 years ago as a healthy 29 year old female. I was originally living in Manchester, UK and working in an acute healthcare setting so I was pro-active when it came to health checkups. I felt happy, settling into my new job and life in Melbourne, so my health checkups we’re pushed back a little. I felt fine, so that’s ok, right?
I finally found the time to do a routine health check and everything was all good. It was just the routine smear test to go, which was only 2 months late anyway. The age to have your first smear in the UK is 25 and I had my very first appointment on my 25th birthday, so being 2 months overdue was out of character for me.
I attended the appointment and didn’t give the results a second thought. Then the phone rang. It was my gynaecologist requesting further investigation by means of a colposcopy, biopsy, swabs and another smear. I was reassured I was now in good hands (which I still believe) and these tests are necessary as we need to be vigilant.
The anxiety started and my thought pattern was like nothing I had experienced. I couldn’t bring myself to tell anyone. Out of shame? Not to worry them? Humiliation? Looking back I feel a little silly for not telling my close friends and family. Not to mention my family who were over 10,000 miles away. In the end a small handful of friends knew the loose details but I could hardly bring myself to say ‘further investigation’ ‘gynae’ ‘the big C’. I didn’t recognise myself.
Thankfully further tests were carried out and I was given the all clear. I had to have the words ‘you’re completely fine and healthy!’ said to me to actually believe it. I hadn’t failed my friends, my family or myself and especially not women. I was one of the lucky ones, but there are women being diagnosed every day who aren’t.
The people at GAIN (Gynaecological Awareness Information Network Inc) are here to help. GAIN is a non- profit organisation run by volunteers who dedicate their time to creating a world where every woman has the opportunity, knowledge, confidence & support to obtain optimal gynaecological & sexual health.
As someone who has now been through this, it’s an awful feeling when you hear a potential diagnosis of cervical cancer and its even scarier awaiting results – believe me when I say your mind will wander. If you know of anyone needing guidance or support through this challenging time, please assure them its ok to talk about it and they are only a phone call away.
Comment: I was twenty five when I was diagnosed with lichen sclerosis (LS), shortly after giving birth to my daughter. My obstetrician was the first to notice anything unusual about my vulva.
It has not been proven, but general consensus is that LS is an autoimmune condition. LS can run in families and is much more common in females than males. It usually affects the vulva and often also the anus. Only rarely does it affect other parts of the body. Onset is most common in postmenopausal women but can occur at any age, and it is a lifelong condition. Childhood onset often begins around age five. LS can be asymptomatic but usually causes intense itching. It presents as white patches of skin, sometimes with small purple spots. Over time, if left untreated, LS can change the structure of the vulva and increase the risk of vulvar cancer, which is why it has to be monitored regularly, with at least six monthly appointments, and treated thoroughly with steroid ointment.
You can find more information about LS on a clear and reliable website called CareDownThere, founded by Dr Gayle Fischer and Dr Jennifer Bradford, members of the Australasian College of Dermatologists and the Royal Australian and New Zealand College of Obstetricians and Gynaecologists. http://www.caredownthere.com.
When I received my diagnosis, the gynaecologist drew a diagram for me and explained that I had no labia minora. A lot of people with LS notice a reduction in the size of their inner labia; mine had disappeared altogether by the time I was diagnosed. As a teenager I checked my breasts for lumps but, (as I have largely asymptomatic LS, without itching), I never knew that I should check “down there”. I wish I had known, before I lost a private and pleasurable part of my body. Not even my GP noticed anything during my pap smear and didn’t ask me any questions when I found the procedure highly uncomfortable and was barely able to relax enough to get through it – at the time I felt guilty for being an inconvenience.
Initially, I was treated at the hospital where I gave birth, but in doing my own research I found a dermatologist specialising in vulvovaginal disorders and requested a referral. She examined me and knew immediately that my current treatment was not sufficient to keep the condition under control. She could see where I had been experiencing splitting during sex and recommended surgery to divide a fusion of skin that had left the opening to my vagina about half the size it should have been. Despite having been seen by numerous gynaecologists before this, no one suggested surgery. I was told to use dilators to stretch so that sex might become less painful.
My surgery went well, though it was confronting to see my vulva looking so “sliced open”. It has made a significant difference – for a period of over a year I was barely able to have sex at all, due to the reduction in size of my vaginal opening and involuntary muscle spasms. I am currently seeing a physiotherapist to help me relax my muscles that have grown tight in response to the years of skin inflammation and uncomfortable/painful penetration.
I think the fact that LS is a predominantly female disease, often affecting older women, in the part of her body that relates to sexual pleasure – an area so taboo I don’t think I even knew the word for vulva prior to my diagnosis – has contributed to a real lack of understanding, awareness, and knowledge in both the medical and general communities. It is an unseen and not-talked-about disease.
For a long time I felt ugly, incomplete, and abnormal. I was a new mother and, with my beautiful, healthy baby, I felt guilty for being so desperately sad. I wasn’t sure if my vulva was a valid thing to grieve over but I did feel grief. It felt so lonely and isolating to be dealing with something I could not speak of, except to my closest friends.
I still sometimes struggle with feeling less attractive and womanly because of what I know is missing. However I am also empowered. I know the names for the parts of my body that were before just “down there”. I know my clitoris is fine and I intend to follow my treatment plan. I believe that a woman should know and understand her body, without shame, and that no part of it should be a secret from herself. Every woman should own a mirror.
I know one other person with LS who was diagnosed shortly after me. She had reason for concern, asked her GP to examine her, and the GP declined, saying that it was so very unlikely and they should wait until summer to do a full body check then. I think this was unacceptable. She felt the need to see a different GP who immediately referred her to the dermatologist.
I hope that in the future GPs will more readily identify the signs of LS.
I hope that more doctors will realise the significant psychological and emotional distress that is often associated with vulvar conditions, and that patients won’t have to experience additional distress from incorrect information, or insufficient support.
I hope that women will feel empowered to know their own vulva, what is normal for them, and if something changes. And if women experience any kind of discomfort I hope they feel confident asking questions and asserting their right to be heard – and even seen.
If you would like to be better educated about the vulva, as well as http://www.caredownthere.com.
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