Endometriosis Awareness Week 2011

// 7 March 2011

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This week is Endometriosis Awareness Week, and as someone who has the disease I wanted to raise a bit of awareness of it here.

Endometriosis is surprisingly common, and can vary in severity and symptoms from woman to woman. In my case I get extreme pain with my period, and very heavy and prolonged bleeding. I have not tried to get pregnant, so do not know for sure if it has affected my fertility, but I have been told that it probably has seriously reduced my chances of a successful pregnancy. But as a happily child-free person, that is not a personal concern.

So for me, it’s the pain. And when I say that I get pain with my period, you may feel you have an idea what that would mean, because many women get pain with their periods. When my periods first started as a teenager, I got period pain. It hurt, and I’d take two paracetamol and it would calm down. I had no idea what was to come for me! After 12 months of relatively normal periods I was on a family holiday in France when my period started. I had never experienced pain like it. It felt like someone was twisting a knife around in my lower back, and simultaneously punching me in the stomach, while tearing the muscles open in my right thigh. I couldn’t sit up straight, I could only curl into a foetal position and pray it would stop. On the fourth day I could finally stand up straight.

And so it remains to this day. The first four days of my period I generally cannot stand up or walk. I have to be curled up in an almost self-protective position, take codeine that makes no difference at all, and blank my mind so that I don’t add to the agonies with ‘why me?’ and ‘this is awful’, neither of which help.

I try to plan so that I don’t have anything to do on the first four or five days of my cycle, but it’s very irregular, and never works out as I intend it to.

The video above explains the medical side of things, but the personal cost to women is what concerns me particularly. I had surgery to diagnose the endo, but the treatment side of that did not make much difference to my symptoms. Hormone treatments lowered my mood dramatically, and I can’t take the pill. I was offered a hysterectomy, but at age 21, as I was, I felt it was too radical a decision to make at that stage.

It took me 7 years from first going to my GP about this excessive pain, to getting a diagnosis of endometriosis. At the time, this was the average length of time for all women. There are numerous reasons for this, but they mainly centre around women and girls not being taken seriously when they complain of period-related pain. As mine started as a teenager, I was told I would grow out of it. I was told it would be fine once I’d had a baby. I was told that *everyone* gets period pain. My friends who had seen how ill I got knew that there was something different about my period pain compared to theirs, but I was unable to convey to the doctors that it was not normal.

For me, it took dragging myself to my GP on the first day of my period. She saw me, unable to straighten up, barely able to stand, and she picked up her pen and paper and referred me instantly to a gynaecologist. He did a laparoscopy, and sure enough, found endo, as well as some other problems too.

If you have any of the symptoms – extreme pain before, during or after your period, pain during sex, excessive bleeding, difficulty conceiving, ovulation pain, bowel or bladder problems, loss of large clots of blood, and other things which you know are not right in your body – go back to the GP and do your best to insist on a referral to a gynaecologist. I wish I could tell you that from there, all would be well, but 12 years on I am still in the same situation as when i was first diagnosed. However, some women do have success with treatments, so they are always worth a try. I get on ok, as long as nobody tries to make me move, or threatens to take my wheat pad away!

This week, be aware of your body. You know what is normal for you.

For further information, see Endometriosis UK, or the Endometriosis She Trust UK.

(Cross-posted at incurable hippie blog).

Comments From You

Ros // Posted 8 March 2011 at 1:19 pm

I just wanted to add a ‘me too’. My doctor took me seriously straight away and I was quickly referred to a gyne. But I only went to her after a long time (years) because friends/ family had made me feel that I was overreacting to the pain etc.

For me it’s been much better since I started using a Mirena (which I know won’t suit all women). I’ve only had three days of stupidly bad pain in six months which is great.

Also a book that’s particularly good is ‘Endometriosis and other pelvic pain’ by Susan Evans. I found lots of the online resources unhelpful in that the focus tends be on how awful it is and not on ways to help or even what procedures might entail.

Chaldanya // Posted 8 March 2011 at 2:12 pm

I remember seeing a segment on a breakfast show last week about this. The long time between presenting with symptoms and being diagnosed was commented on but when saying why this was so not once did anyone say that it was because the woman/girl in question is not believed.

I think I was lucky, it ‘only’ took 6 years for my diagnosis to come through. The registrar I saw in the first instance basically flat out accused me of lying: “why has it taken you so long to get treatment if the pain is as bad as you say?”. It took my mum to tell him just how bad I was (because he sure as hell didn’t believe me) before he offered me anything other than the pill. I left his office confused, guilty and crying. I haven’t seen him since. I saw the consultant after that and she was at least understanding.


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