Roses of Endometriosis
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If you put in to any search engine ‘what is a woman’ the descriptor will place motherhood as a key element of womanhood. Endometriosis has robbed many sufferers of the ability to conceive or have a viable pregnancy. I have stage 4 endometriosis, and was diagnosed following 2 laparoscopies in 2009. Prior to my diagnosis my husband and I suffered 7 confirmed miscarriages. The moment you see a positive blue line on that white stick you fall in love; the tsunami that follows when you miscarry is indescribable. We suspected that endo was at the route of our troubles but nothing can prepare you for a confirmed diagnosis and the reality of what this means. We consider that we are lucky that our consultant concurs that there is a link between the endometriosis and the miscarriages, as this is a little known fact of this chronic illness. Endometriosis is described by many health professionals as an incurable debilitating disease which although not terminal has the same ravaging effects on the body as a cancer. Yet if you mention cancer people will sympathise, try mentioning Endometriosis and an assumption will follow that it is just painful periods. This assumption is obviously incredibly frustrating for a sufferer whose life has been affected in every aspect – personally and professionally.
Though it is incurable (it is a myth that a hysterectomy will cure this disease though it will ease some symptoms), early diagnosis and treatment can enhance quality of life, in some cases mean the difference between carrying and giving birth to a baby or not. It took 21 years to get a confirmed diagnosis by which time the disease had progressed to such an extent that it caused recurrent miscarriage and I am now in need of a full hysterectomy and possible bowel resection. Personally this feels like the ultimate sacrifice I have been robbed of the chance of doing the most natural thing that a woman could wish for.
Endometriosis is aggravated by naturally occurring female hormones within our bodies it is therefore ironic that my very sexuality is partly to blame for my inability to fulfil our ultimate dream. The weight of endo will always weigh on us, but with knowledge and understanding it is something which we have now learned to carry.
My life has greatly improved whilst on Zoladex, through changes in diet and regime, and other things which I do have control over. For it is not merely about being unable to carry a baby but the crippling pain and debilitating symptoms which can make everyday living so incredibly difficult. Thankfully now we can look forward to a ‘normal’ lifestyle which many people don’t even realise they take for granted. Look out life here we come!
I was diagnosed with Endometriosis at the end of October 2010. I believe that I have been living with the symptoms since the age of thirteen when I first started my period and that it has developed since. From the start of my teens I have had to put up with severely painful periods that led to me having hot flushes, passing out and sometimes throwing up, as well as heavy bleeding and fatigue. Many trips to the doctors never found me a diagnosis and it was believed that I was just going through puberty and that I was healthy.
By the time I was at college I was having pain during random times of the month as well as pain when I was on my period. I also had pain that would shoot down my legs to my feet. I developed IBS-like symptoms and so that became my diagnosis, although I wasn’t convinced by this. I would often end up sat in the toilets crying, being in too much pain to stand up or to sit down. I would nap frequently and feel completely exhausted a lot of the time.
I have found that Endometriosis has affected me physically and emotionally causing problems with my friends, partners, university studies and my ability to work. I found it hard to explain to people why I was curled up on the floor in pain when I had no diagnosis to understand. When people didn’t understand or believe what I was going through, I found it very upsetting and frustrating because I needed support.
I am now finding at the start of 2011 that things are looking up. I am receiving treatment and I am able to explain to people the disease I have. It is still surprising to me the amount of people who do not know what Endometriosis is but I am hoping we can raise awareness so that we don’t have to suffer in silence.
I was diagnosed with endometriosis just over a year ago. Looking back, I’m not sure when the symptoms started, but I’ve thought there was something “not quite right” for a long time, probably for about ten years. For the last few years my periods were becoming increasingly painful and unmanageable every month.
I was rushed to hospital in November 2009 with severe abdominal pains and was eventually told I had a torted cyst. A couple of months, and numerous scans later, I was booked in for an emergency laparoscopy and was diagnosed with stage IV endometriosis.
Since then, I’ve had the Zoladex, IBS treatment and am now awaiting my appointment for my next surgery, which will include possible resection of my bowel, removal of my appendix and removing nodules from my bladder.
The last year has been tough emotionally as I have tried to come to terms with the physical and psychological issues that endometriosis can pose. I am now trying to be proactive and positive about the way in which I deal with the day to day management of the condition, including volunteering to be a group leader and becoming involved in fundraising for the charity Endometriosis UK. Feeling that I am doing something positive helps me to feel that I’m in control of the disease as opposed to the other way around. I’m committed to taking each day as it comes and not letting the disease stop me achieving the things I feel passionate about.
I was diagnosed as having endometriosis in August 2009 after many years of pain and countless visits to my local GP. It was not until I moved from Kent to London that someone took my unusual periods and pain seriously. Within a few weeks of first seeing my GP I saw a consultant gynaecologist who performed a laparoscopy.
After the procedure the doctor presented me with a photograph taken of my insides showing red blobs everywhere, she explained that these were endometriosis. It was fantastic to have an explanation after all those years of discomfort. She did warn me that I may never be able to have a baby, this broke my heart especially as I had just moved in with the man I wanted to spend the rest of my life with.
Time passed and in January 2010, I became extremely tired and sick, thinking this was a winter vomiting bug I spoke to one of the doctors at work who jokingly asked if I was pregnant. I laughed the suggestion off although deep down I knew that this was highly unlikely.
On the way home, feeling absolutely awful, I decided to buy a pregnancy test to rule it out and to stop me from wondering. Once I peed on the test BOTH lines appeared straight away. In shock I ran out of the bathroom and told my partner- we were so happy but completely overwhelmed. I repeated the test about 8 times until I actually accepted that I was pregnant. It was the best feeling in the world.
Maximilian was born on 2nd September 2010 by C-Section weighing in at 8 pounds exactly; he was perfect in every way.
A few weeks after giving birth to Max I was bleeding heavily and it was painful. I went to the GP who I expected to say that it was a result of the endometriosis however, she advised me to travel up to the local hospital and have an ultrasound. The results from this showed that not only had I have significant endometriosis that I also have extensive polycystic ovaries- the consultant said she was surprised that I had managed to conceive in the first place. She expressed concern that I may not be able to conceive another baby without medical intervention- so Max is truly our miracle baby. It is amazing that something so beautiful can come from such an evil and debilitating disease.
My problems started when I was 17 and experienced a 3 year non stop period! Doctors constantly dismissed it as being young, despite having regular periods since starting Dianette at 14 (maybe this masked my symptoms?). The next 3 years just followed constant pill changes and trying the injection.
My main problems were bowel related. I was treated with anti spasmodics and various laxatives for ibs, although they did not seem to make a difference. As the problems prolonged I eventually underwent dietician visits, ultrasounds, internal ultrasound, MRI scan, sigmoidoscopy, endoscopy, colonoscopy. All to be told there was nothing wrong with me and it was "just IBS". During this time I had mentioned endometriosis to my doctor, who said that was just painful periods, so I didn't have it. Despite me explaining that I was always on a period so it was hard to tell if my symptoms were combined. It wasn't until this time last year (and a change of doctor) when a friendly nurse in the emergency room printed off pages of information about period problems when the doctor finally said "it might be endometriosis".
I had my lap and diagnosis in June, was put onto a different pill (can't remember the name but apparently it's similar to microgynin?), which worked apart from the crippling migraines. I was gutted to be told I had to try something different. Was then put on cerazette, which also worked, until about November, so I decided to stop taking it as I had enough of the side effects. I felt better for a few weeks until the symptoms returned.
I am currently under an endometriosis nurse, and have just had my first conversation. I am now waiting for her suggestions to be received by my GP so I can try different pain relief and the mirena coil. I met her at an Endo Support Group and have found both the nurse and the support groups very helpful! I rely on the support of other sufferers to keep me feeling sane when I'm having a difficult day.
I was diagnosed with endometriosis after 12.5 years of trying to find help in managing my cycle. I had been "fobbed off" by a variety of doctors and medical staff. Remarks such as "It's normal"; "All lady's have it" and my particular favourite…"It will be better once you have had a baby" were received along with countless trials of analgesics, and antispasmodics.
As a young woman it was almost an embarrassment to admit how awful the symptoms were. I went to extreme lengths to disguise it. Pain so bad that I would be sick morning, noon and night. Bleeding and blood clots so heavy and often that I became anemic and cramps so intense that one doctor called them "false labour pains". (I was 14 at the time and was asked if I could be having a miscarriage).
I ate codeine tablets like tic tacs just to have the energy to smile and walk into school or work. I wore a mask everyday, trying to hiding my true feelings and symptoms from my family, old friends and from new friends I was making at further education and then university. It affected me socially and emotionally.
In September 2007, extremely debilitated from the constant pain, I found that could no longer work and after begging signed off with depression, my GP finally heard my request and sent me to a gynecologist.
After a full history and an examination (which was so painful the Doctor stopped after only a few seconds) I was booked for both a Laparoscopy and Hysteroscopy. At no time was any suggestion made that endometriosis or any other condition might be a cause.
It was shocking to be still groggy from anaesthetic and to hear the Doctor asking if I have a partner and looking sad when I said "No". He then said it was "A case of sooner rather than later..." It dawned on me he was referring to my fertility and I suddenly felt numb. This was serious.
It was explained that after two and half hours of surgery two very badly damaged ovaries, a D&C and extensive laser surgery, it was Stage 4 Endo. The Mirena coil was my best cause of treatment and was given my 5 year window for a child. How ironic that the very process that Drs had recommended would relieve my symptoms, was now the one thing that may never be available to me.
Post surgery I had so many questions and I was left feeling angry, sad and lonely. After years of being told "It was nothing" I honestly expected them to find nothing. However, now there was a reason for my pain, it was not in my head nor was I feeble. Although there are times I am still raw, I am learning to accept the diagnosis and finding ways to support others and myself. I am defiant attitude in living with this condition, its chronic pain and emotional stress; I will continue to be as strong as I can and not let endometriosis define me.
I was a very young starter aged 8 two weeks before my 9th birthday, from day one it was hell, but being so young I had no friends to compare with, I never heard my mum complaining so just thought it was 'normal'. When I got to about 10 things were getting slowly worse, every month for 10 days I was bleeding, first 4-5 days being the worse, I was always having time off school to and through the doctors, where unfortunately like many of us I was getting palmed off with, its normal period pains your grow out of it, Its IBS ect ect, if only! When I was 13 I went on the pill, although this slowed the bleeding and shortened the periods it done nothing for the pain. I went on for 4 years like this, trying different pills, for pain, bleeding ect.
In august 2009 I moved and therefore had to change doctors! Little did I know this was the best move I was going to make. In the September I had my 18th birthday and a few days later the dreaded period came! I made an appointment with my new doctor and within a few minutes of explaining he said it had gone on too long and he was going to refer me to a gyne doctor. Within 4 weeks I was sitting in the gyne room explaining, he decided to do a diagnostic lap.
In the December I got a phone call with a cancellation appointment for January 2010. When I came round from the lap and was back on the ward my consultant came round and told me I had stage 3 endometriosis! Of course my mind went swirling.
My consultant wasn't very helpful when I asked what it was, his response was to go home and Google it. So that’s what we did, the only words I remember reading were “NON CUREABLE”. That set me off thinking the worst, after some research I found out what it basically meant. When I returned for a follow up he showed me what he had found and where, I was shocked to say the least. Unfortunately, the pains didn’t get any better, and my consultant kept cancelling my appointments at the last minute! So I changed hospital and consultant. On the 19th November I had another lap and more endo spots removed.
I was lucky enough to find a local support group and from there have made a fantastic friend! Without her and the other ladies I have spoken to I really don’t know how I would have got through the past 11 months.
I am truly thankful to all the woman that have helped me come to terms with this horrid illness, and pray that one day a cure will be found.
It all started when…
My name is Kaye and I have endometriosis. This page is the result of a personal passion to raise awareness (back in 2011), shortly after I was diagnosed after many years of distress.
This project has been created and funded entirely by myself and supported by Endometriosis UK.
The photoshoot was a wonderful experience, full of emotion. For some of us, it was a day to embrace the condition, come to terms with issues we were facing, or simply a chance to meet other women like themselves and to see that they were not alone.
I am so delighted to have met all these amazing ladies. They gave their time, energy and some travelled a great distance to be there. We laughed, we cried, we hugged and we gave advice and tips to each other. Thank you Roses.
You are all beautiful, strong and inspirational. Wishing you happiness and health.
Love Kaye xxx
To make a donation to Endometriosis UK please click on one of these two links.