Endometriosis is a disease which causes the tissue which normally grows inside the uterus to grow outside it. Nobody really knows exactly what causes it and there is no definite cure. The symptoms are chronic pelvic pain and, in the worst cases, infertility. It affects one in ten women of reproductive age in the UK. That makes it the second most comon gynaecological condition in this country. It's estimated that around two million women in the UK are affected by this, most of them between 25 and 40. Endometriosis is so badly understood that it takes, on average, 7.5 years from the onset of symptoms to diagnosis.
I first started to experience the symptoms of it when I was 13. Here's what I know:
**1. It took 17 years to be properly diagnosed **
At 13 I had, unsurprisingly, never heard of endometriosis. I was in my early 20's when I fist suspected I had it, but when I was 24, was told no I did not have it. I was not until I was 30 that I was actually told, it most certainly is endometriosis by two different specialists. Today, at 30 years old, after 17 years, I am still waiting for the operation that will treat it.
**2. The pain is relentless **
The pain is like a thousand tiny hands inside grabbing my abdominal muscles, back muscles, and bowels, pulling and twisting them, the pain is so strong it causes me to vomit, sweat, and near pass out. It comes in very strong contractions, they are very intense and then it lessens for maybe 20-30 seconds before coming back. You cannot speak, sit still or do anything, just scream and crawl around in pain…literally clawing the walls!
It’s relentless. Most bad attacks last over 6 hours, followed by about 12 hours of manageable pain, and by ‘manageable’ I mean lying in bed but not screaming. By the end of it I usually pass out.
When you are in pain for such a long time, it really is like torture, and it can make you feel suicidal. In that moment, it seems more desirable to kill yourself than it does to live another second with that much pain.
I feel terrible saying that because I know there are people far worse of then I am, and I have a great life, but the pain is just so unbelievably awful. I am lucky because I do have a great partner who is always there in my hour of need. I also have great friends who I know would come if needed, but what if you don't have that level of support? What happens then? I really don’t know how I would cope if I knew I had to face that level of pain alone every few weeks.
3. You are casually told 'when you have a baby it will be so much better'…
My doctor said this to me when I was 13, as though that somehow made it all OK. I remember my mother and I looking at one another, our jaws practically hitting the floor.
We pointed out to my doctor that, what with me being 13, this was pretty unhelpful advice to offer given how much pain I was in. He promptly prescribed painkillers and sent me on my way. I was constantly told by specialists 'you just have painful periods', 'you will grow out of it' over and over and over again.
The great irony is that endometriosis can cause infertility, so this magical cure of childbirth helping is actually made very difficult by the condition itself...
4. Diagnosis and treatment are delayed by masking the condition with hormonal contraception
I probably tried about 10 different cocktails of painkillers, before, at 15 I was finally referred for a scan and tests. Even then I wasn't really told what to expect, nobody really said much about the condition itself and I didn't really understand it.
I was popped on that magical go to cure-all: the contraceptive pill. A miracle cure, I thought, and it was: the pain and other symptoms stopped, it was bliss! I had had tests, scans, and invasive examinations, all of which showed nothing.
I was fed up of being sent home from school in crippling pain, missing events with friends, and explaining why I was vomiting, near passing out, and crawling around on the floor in pain on a regular basis. Had my symptoms not been associated with my 'period' and dismissed accordingly, I am certain I would have been taken far more seriously.
Sometimes I would have a gap in between the pills and implants to see if the pain had got less with age, each time devastated when the pain returned with a vengeance. There were many times where housemates or an ex-boyfriend wanted to call an ambulance as the sight of me in such pain, screaming, sweating, vomiting and partially delirious was quite disturbing. But, with the voice of all those 'specialists' in my head, I had normalised this level of pain as something I had to put up with.
Three years ago, with huge support from my now husband, I decided enough was enough I had my contraceptive implant removed, and I have not looked back. The pain and other endometriosis symptoms have got worse, but I feel like I am tackling the issue and moving forward rather than masking symptoms.
5. The only way you can have a certain diagnosis is with an operation called a laparoscopy
I am currently waiting for a laparoscopy operation to treat and 100% diagnose me.
The terrible thing is that, although I have been in all this pain for so long, the only reason it seems to now be being pushed for is because the doctors and specialists are pretty certain it is making me infertile.
I am married now, in my 30s and I can’t conceive. My husband and I have had to have all sorts of tests done, and they have ruled out everything else before finally treating for endometriosis.
It’s complete madness, if I did not want a family would I be expected to just put up with this level of pain for the foreseeable future!
**6. Support is out there! **
There is, in my experience, a terrble lack of knowledge about endometriosis, which means there is also a lack of support and advice out there.
I just got lost in the system for so long.
It just seems to be deemed acceptable for women to suffer this way. But our partners suffer too, because they support us. My now husband has stayed up through the night with me countless times and then got up and gone to work.
Last year I felt more able to chat with friends and family about the condition. I looked to the Internet to find advice and support. I spent many years thinking I needed to accept the pain and was a bit embarrassed about it all, that I rarely spoke about it. Since opening up and looking online I have found it much easier to focus on sorting the issue. Do not be afraid to reach out to people for help, no one should have to go though such pain and discomfort alone.
If you suffer from Endometriosis you can find advice and support on the Endometriosis UK website.
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This article originally appeared on The Debrief.