Thursday 30 September 2010

Rapid response to British Medical Journal article.

Dear Samuel Engemise, Cerys Gordon, and Justin C Konje,

I thank each of you so very much for your fascinating article about endometriosis being missed. To read those words from medical professionals gave me back some faith that was lost, that some doctors do understand that endometriosis is a remarkably troubling, baffling and highly distressing disease to have to live with.

From the age of 12, I have had to suffer agonising periods, fatigue, and depression. These symptoms have worsened in the 16 years since my periods started and I now have chronic pelvic pain and sharp, breathtakingly sharp pains around my right ovary, as well as depression lingering in the background.

I was diagnosed with extensive endometriosis in March 2010, and am now (end of September 2010) at the end of 6 months’ treatment of GnRH agonists and HRT. I have felt terrible on too many of these days, with severe nausea, migraines, and oft-unbearable pelvic and ovary pain, along with the severe pain of post-operative recovery.

From a patient’s perspective, dealing with almost constant pain, seeking help for it, and being told it is nothing to do with one’s reproductive system but, perhaps, a bowel or problem is insulting, to say the least. Several women have expressed this opinion to me. We know our bodies, and we know the pain we feel.

I have forgotten the amount of times I have been to see a doctor, of whatever level, about my “bad periods” and been stopped mid-sentence while trying to explain how and what I feel, or the times I have felt ignored and belittled by those meant to help me. This is not true for every doctor, I know; my GP is excellent and is the only one who believed in me, and that my pain was not, perhaps, psychological or a mere hormone imbalance.

The Royal College of Obstetricians and Gynaecologists states in its publication “The Investigation and Management of Endometriosis”, released in October 2006:

"5.3 What is the ‘gold standard’ diagnostic test?
For a definitive diagnosis of endometriosis, visual inspection of the pelvis at laparoscopy is the gold standard investigation, unless disease is visible in the posterior vaginal fornix or elsewhere.

It also states, "A normal scan does not rule out endometriosis." Indeed, not seeing something on an ultrasound does not mean it is not there. Again, several women and I have had countless ultrasound scans and been told all is normal. Perhaps it was not “normal”, but simply unable to detect the endometriosis? For example, just 3 months before my laparoscopy, my pelvic cavity was apparently “normal” after an ultrasound scan, and yet on the day of my operation, endometriosis was found on the posterior uterine wall, and pelvic side wall, along with endometriomas in both ovaries. I don't believe that kind of damage occurs after 3 months.

In my opinion, using these methods to rule out endometriosis after it is simply not detected is a way of ensuring thousands of women and girls suffer perhaps not just pain, but untold internal damage, including depression. As said by Geraldine O’Sullivan-Hogan in reply to the article, "A Patient's Journey: Endometriosis" published 10th June 2010 in the British Medical Journal, some doctors are "confusing late diagnosis with late onset". That is certainly the way for so many women I have spoken to about their experiences, as well as me.

From first seeking help with my periods until a diagnosis that was (in my opinion) finally true and very, very late, there were 10 years. TEN long, painful years. I think endometriosis is underestimated and belittled in so many ways. It is assumed sometimes to be only “there” with periods, that the pain is actually manageable, or that a laparoscopy will cure endometriosis or that we want attention. We just want to be well. That is all.

According to Sobia Ashraf Sand – a doctor, "any pain killer will do", which was also in response to “A Patient’s Journey: Endometriosis”. This is a very unhelpful comment to make, I think. There are many painkillers that I, for example, can not take, as they clash with other medication I am on. There are also several I have tried which do not work any more, such is the tolerance built up in my system over years of taking them. Again, this is not unique to me.

I seek to ensure changes occur regarding diagnoses of endometriosis; I believe doctors and other medical staff ought to be more aware (if not already) of what it is, and that they ought to realise how gravely it can affect women, and girls, and their families.

So many people do not know what endometriosis is, or have even heard the word “endometriosis”. For a health condition which affects roughly 2 million people in the United Kingdom, I think this is a damning reflection on the unwillingness of some people to publicise and talk about ovaries, vaginas, wombs, tubes, cervices and other women’s bits and pieces.
How are women and girls to know anything is wrong if they don’t know that they ought to feel different, to feel “normal”? If they don’t know what endometriosis is, why would they visit a related website? Information is not there, often, to help them find out there might be something that can be done to help them. This is one of the reasons I think all hospitals, clinics and GPs’ surgeries should provide the excellent leaflets and posters from Endometriosis UK.

Endometriosis must not continue to be the “hidden” or “missed” disease it has been for so long.

Yours painfully,

Lucy Palmer.

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.