Sunday 26 September 2010

Hell hath no fury.

Before I was diagnosed with endometriosis, "officially", my heart ached for the women's accounts of their experiences, of their being told nothing was wrong on account of “normal” or “clear” test and scan results, that it was probably a bowel problem or other. I've felt the very physical pain of emotional distress and trauma in very many ways, like when my brilliant Little Nan died in 2006. When it became obvious I was extremely depressed for the umpteenth time, and my heart genuinely hurt from the fear of it, of what I know so well. When my Mum was diagnosed with cancer, and when she had to have a mastectomy. When I heard and saw her sobbing from the pain of her operation.

On Monday 15th March this year, when I became one of those “ignored” women I think my heart did break. I started to say “we”, instead of they. It was “us”, instead of them. We were told, essentially, nothing was wrong. We feel so hurt, and betrayed, and insulted, and neglected. Not all women and girls with endometriosis have had a rough time, however; some are extremely fortunate and have been told promptly and respectfully there is endometriosis within them and have received very good care and treatment. Would that it were so among the women to whom I have spoken about their experiences.

I know some people don't believe I am as ill as I sometimes am. Some of those people are family, some are friends. Some are, I'm sure, medically trained. To a point, I don't care. I don't care if they don't believe me, because my conscience is clear, and I know how I feel. I have to care about whether some the medical people believe me, else I mightn't receive the correct treatment and “Pain management” medication.
Some people, though, do believe me, and while they don't physically understand and never will, their empathy is enormously appreciated. They can't believe how we have to wait so long to be helped, how we are dismissed, how we are sometimes still not helped, even after a definitive diagnosis of endometriosis. That's not easy to say when tired.

If you've found this blog while searching for endometriosis-related stuff (I am so eloquent), or if you're a reader already (thank-you!) or a new reader, you can, if you want to, help me. If you have endometriosis, for a long time or a little, and have reservations about how long you waited for a diagnosis, if you were told you didn't have it pre-laparoscopy, and then incredibly were told you did, post-laparoscopy, I want to know. I want to gather as many accounts as I can of your experiences. I want to know what symptoms, how long they were or have been present, how many times you visited doctors, what you were told, what tests you had, what you were tested for, what the results were, what treatments you had that didn't help, because they were for something other than endometriosis… you get the picture, right? I have suffered for 16 years with the same symptoms. I've had periods that have been heavy, lasted a long time, been unspeakably painful, irregular, pain at the end of periods, with bleeding between periods, pain between periods, almost constant fatigue, aching all over, depression, and ohhh, so much more.

I don't believe the way things are now should be allowed to carry on. In my opinion, some guidelines of the Royal College of Obstetricians and Gynaecologists are being violated. I want to know WHY they thought we DIDN'T have endometriosis; "A normal scan does not rule out endometriosis", according to The Royal College of Obstetricians and Gynaecologists. It also states, for example, that "Serum CA125 levels may be elevated in endometriosis. However, compared with laparoscopy, measuring serum CA125 levels has no value as a diagnostic tool." If this is the case, how and why, I wonder, are these kinds of tests even used to rule out endometriosis when levels fluctuate in the menstrual cycle and do not give definitive readings, regarding (among other conditions) endometriosis?

If you agree with me, and want to help me help other women who've been through a living hell, you can email your account of what happened to you to You can join my new Facebook group, Endo United and send me a message with your words on there, instead, if you like.
If you want to send your account and remain anonymous, tell me and I'll leave your name off. I want to collate them in to a file, to print out your words of what has happened to you, to show that it isn't just me who has suffered so appallingly badly.

I can't do this on my own. I need you to help me. If you don't have endometriosis or know anyone with it, you can still help. If you know people who can help, if you know people who know people who can help, let me know! Please. This is SO important. There is probably someone within a mile of you suffering, whether from having endometriosis or by watching someone they love so much being torn apart, literally.

We don't have to put up with this way of being "treated". We CAN change this.


  1. That is just a brilliant way to sum it up for most women out-there, very well written. It is so true what they say people will never fully know or even begin to understand the pain that is associated with this horrible disease unless you have it. I have always said to family/friends that for me in the past the pain has been worst than actually having my son. I have been a suffer for over 20 years and didn't relise it, just thought i was unlucky to suffer with my periods. I suppose i didn't have anything to compare it too. I am now due for a Hysterectomy soon as i have severe Endo. So glad to know that more awareness is now out-there or though not enough i say.


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