You may or may not have heard the word Endometriosis before. Despite statistics showing 1 in 10 women suffer with it, (the same statistic as those suggested are suffering from type 2 diabetes or a debilitating anxiety disorder for example) it is grossly misunderstood with far less research than is needed and knowledge within the medical field. Women are consistently misdiagnosed which can sadly lead to such drastic outcomes as infertility.
Endometriosis is when tissue similar to the lining of your womb grows in other places. When you have your period the abnormal tissue can also bleed, often causing chronic pain, nausea, extreme fatigue and pain during or after sex to name but a few. These symptoms can show up at any time and not solely during your period.
It may sound strange to say, but I have actually been very lucky with my endo journey. It takes an of average 7 years to get a diagnosis however I got mine in just 4. I know how that might sound, “just 4 years”. That is an insane amount of time to spend in pain, desperate to know what is wrong with you. But I know of women who have been left for over 20 years before receiving their diagnosis, so my experience doesn’t seem so bad.
I first began feeling unwell about 4 years ago. I put this down to exhaustion after having a baby and that my periods had changed because of that too. However when my symptoms started to interfere in my daily life I knew I had to look into it. Unfortunately for many women little is done when presenting with the issues I had and I certainly experienced a difficult time in being taken seriously. It took many visits to my GP to get anywhere. I was always told that I just had “bad periods” and I simply “had to get on with it”. Eventually I was referred to gynaecology although that is where my real battle began.
Sadly there is no test for endometriosis and the only way it can be diagnosed is through laparoscopic surgery. Although a very safe procedure, there are always risks and doctors aren’t keen to simply cut you open without exhausting all other “treatments”. These mainly consist of hormonal treatment so in short, contraceptives. Apart from the fact that switching these drugs on a pretty regular basis causes havoc to your mind and body, they can’t be taken if you wish to conceive. However conceiving is often an issue if you have endometriosis. Bit of a catch 22.
I was asked to do a pain diary for 6 months which I felt was a waste of time as I had pain every single day. I also had multiple scans which all came back clear, bloods tests, again clear. I was even at one point questioned about whether it could all be in my head!
Nearly 4 years of various scans, tests, appointments and admissions to hospital later, my consultant said he would like to perform a laparoscopy. At this point endometriosis had not once been mentioned to me. My mother in law however had done some investigating via Google and had suggested I might have it. When I read what she showed me it was like a switch went off. Every symptom I lived with was listed and I couldn’t believe it had not been brought up during all the years I had been suffering. Long story short, I had the operation and I got my diagnosis. Endometriosis was removed from the outside of my womb, my bladder and a few other spots but was left on my bowel as my consultant did not feel qualified to remove it. The bowel is extremely delicate and the risk of something going wrong without a bowel surgeon there to fix it was too great. That was over 2 years ago. I have since been moved to York where there are specialist in this disease and so are better able to manage my case. I had another operation in October last year and recently got the green light for my bowel op which will be a major surgery but will hopefully bring me some peace.
Although I am so grateful to know what is wrong with me it is also devastating to live with. There is unfortunately no cure. I am also not the person I used to be and endometriosis has robbed me of the life I once lead. I feel guilt all too often because I can’t do as much with my children as I wish. Or because my husband has to do more than his fair share at times. Or that my mother in law helps collect my girls from school when my pain is so awful I can hardly walk. Often I have to cancel plans because I am too ill to do much although these days I rarely even bother to make them as I cant help but think what’s the point. As a result my friendship group is now smaller than ever.
It is extremely easy to let endo take over your life and only those very close to me know the extent of what I go through. On the outside I look perfectly normal but my insides are shrieking in pain and sticking together where I have lesions. There is also a level of embarrassment to explain it as these are symptoms still discussed as “women’s problems” and who wants to admit they can’t leave the house because they are bleeding so heavily! So for now I will wait for my surgery and hopefully a new lease of life will be the outcome. This will be my 5th and I have no doubt there will be others due to the fact endometriosis is cruel enough to return even when removed. The next step is to be put into chemical menopause which at 36 fills me with absolute dread but I am running out of options.
For those that have read this and see similarities in their own lives, book a GP appointment and say you think you might have endometriosis. You will likely have a long road ahead of you but better to start walking it now.
There are some good support groups out there too, so you don’t have to walk this road alone. I probably learned most about endo from the Facebook group. It is a great and supportive place for any sufferers and even women who only suspect they might have it. Trust your instincts and what your body is telling you. And seek support, don’t do it alone.
Guest blog by Sarah-Lou Harper
