This morning I received a message from my sister-in-law, directing me to an article in the Guardian about Endometriosis. My initial response was caution, as so often this condition that has blighted my life since my early teens is so poorly represented in the media, if mentioned at all. But as I read through the article I was pleased to see that it was well-researched, quoting leaders in the field, and clearly expressed the challenges faced both by women suffering from it and the healthcare professionals fighting to find a cause and a cure.
I was even pleasantly surprised to find out about the 45 centres across the UK that have been accredited by the British Society for Gynaecological Endoscopy, as this is something I have never heard of. Just recently my GP and I have been searching for an Endometriosis Specialist, as we seem to have come to the end of the line in terms of treatment options. Yet neither of us managed to find out about this, nor did the gynaecologist who saw me last year.
This is why it is so important that awareness is raised through every means possible, so that those who are suffering (and those who are treating them) can access the best possible care, including an actual diagnosis for those who have never been properly diagnosed.
I’m no stranger to misdiagnosis – during my pregnancy my Hyperemesis was never officially diagnosed (or treated), and TJ’s Small Fibre Neuropathy was also misdiagnosed for several years as possible Carpal Tunnel. But I had always considered myself “lucky” to have been diagnosed with Endometriosis at 21, around 8 years after I first developed symptoms. A lot of this came from the fact that both my mother and maternal grandmother had suffered from it, and so we knew how important it was to fight for a diagnosis, especially through all the years of being told it was “normal” to be in pain.
But what the Guardian article clearly showed me this morning is that many of my other “diagnoses” since have most likely been a side effect of the Endometriosis all along (something I have long suspected but not had the courage to prove). Take, for instance, my IBS… I never had any trouble with my digestive system prior to my first laparoscopy in 2005, yet since that day I have struggled massively with pain and nausea that have consistently been attributed to IBS. Over the past 18 months I have been submitted to test after test including a CT scan, Barium Swallow, Endoscopy and Colonoscopy, all coming back clear. The latter, however, was somewhat problematic, due to my “very loopy” colon, and I cannot help but wonder whether some of this may be due to the adhesions which have previously “glued” my uterus to my bowel.
It seems I am far from alone in getting these “misdiagnoses”, as GPs and gynaecologists refuse to accept that the symptoms you’re presenting to them could possibly be connected to Endometriosis. Yet as the article itself states, “One woman in 10 of reproductive age has endometriosis, it is estimated, and yet often their primary care doctors do not know what it is and the specialists to whom they are sent are ill-informed.” Did you get that? The specialists that women are sent to are often ill-informed – no wonder getting treatment is so difficult!
I’ve said this before, but I’ll say it again – I consider myself “lucky” that my current GP has tried to find an Endometriosis Specialist rather than referring me to a general Gynaecologist. We didn’t have any luck in our search, but the fact is my GP is trying his hardest to get me the best possible care he can. To be believed and have that kind of support is incredible, though it should, of course, be standard!
I’ve seen enough Gynaecologists through the years to develop a certain amount of fear around appointments with them. Despite twice having surgery that has clearly shown Stage 3 Endometriosis, with adhesions attaching organs to each other, I have still had Gynaecologists suggest that “nausea is not ‘typical’ of Endometriosis” and “well, you’re not in too much pain, so bear with it”.
Again, I feel “lucky” that, for me, the Mirena coil actually stops my periods and so the agonising pain that accompanied me through my teen years and early twenties is a thing of the past. I no longer suffer from the pain so great that I cannot move, throw up, and develop a raging fever to boot. When I say that labour and childbirth was a cinch compared to the pain I used to suffer every single month, hopefully that will give it some kind of context! But just because I don’t have that intense level of pain any more, doesn’t mean I don’t suffer.
I get “tugging” pains around my ovaries and “stabbing” pains in my rectum, so sharp that they take my breath away. I get mild “cramps” and the awful nausea that feels almost like motion sickness and reminds me of the horrific weeks and months I suffered with HG during pregnancy. And all of this happens completely at random, meaning I find myself suffering 2 if not 3 weeks out of every month. Add in the migraines and complete exhaustion from struggling to hold down a job, raise a son, and generally have a life, and the picture is grim.
Now here’s where I’m going to sound like a broken record – I feel “lucky” that I still have a job. I have faced discrimination in the workforce before and had to put my career plans on hold many times because of how ill I am. In fact, I often make myself more sick by trying to ignore the fact I am ill and carry on just like everybody else. But the truth is I do have a job, I do have a son that I am well enough to play with most days, and I do have some life left to enjoy. Not much, but some. Many women are not so “lucky”.
[Edit: since writing this post, my health has gone downhill massively, which is caused by a combination of factors and health issues so isn’t just related to the Endometriosis. But it is a contributing factor in a complex situation that has left me unable to work and enjoy life with my family on a day-to-day basis. So even those of us who are “lucky” can be easily struck down at any time with worsening symptoms,]
But here’s the thing – this shouldn’t be what it feels like to be “lucky”… Every woman with Endometriosis should be receiving the best possible specialist care to ensure that the condition does not rule or ruin their life. That isn’t luck… it should be standard. But until we break this idea that “women’s troubles” should just be tolerated and actually begin to see it as something that we need to find better treatment for, “luck” is what it comes down to.
If you’ve read my blog for a while, you will know that I have campaigned tirelessly over previous years to raise awareness of and better diagnosis and treatment for Hyperemesis, because every woman’s health and wellbeing is important. But the percentage of women suffering from Hyperemesis is far less than that of women with Endometriosis, where an estimated 1 in 10 women (or 1.6 million women in 2012 in the UK alone) have the condition. To put that into perspective, “The numbers are comparable to diabetes – and yet there is only a fraction of the awareness of the condition and help for those afflicted.”
You may wonder why I am mentioning Hyperemesis in a post about Endometriosis, but to me it is all the same battle – women are being drastically failed by our society and medical profession through lack of awareness and lack of funding for research, development and education. Until we accept that “women’s troubles” are just as important as other conditions such as diabetes, women will continue to suffer, no matter what condition it is that they are suffering from. And that is why it is important that Endometriosis is in the news today!
DawnSeptember 29, 2015 at 9:05 am
It’s not the same, not at all, but rabbit owners have similar experiences: rabbits are a common pet but not many vets really know how to treat them. They can do the basics, but even something common like stasis can be poorly treated or misdiagnosed. Many will often elect to PTS instead of treating too, as rabbits are often seen as ‘not worth it’: many very caring owners have had to seek second opinions in this case 🙁
I’d like to say the same about stroke too: the statistics are similar to that of cancer but it gets about 10% of the funding as compared to cancer, but can be more life-changing in many circumstances. It’s not just about education and awareness, it’s also about the funding to support research so people want to do the research: you can’t live on no money! As you are well aware 🙂
M.CarrJuly 4, 2016 at 3:08 pm
I struggled from endo since I was 13 years old. Many health professionals dismissed my symptoms as separate issues. My pain was “just” normal cramping, my asthma is seasonally related, can’t gain weight because high metabolism, I had frequent naseau and I was in constant pain. But I was told to eat better and referred to see a counsellor.
By my mid twenties I was depressed, in constant pain and Nassau … and I couldn’t tell the doctors why. I was already told my symptoms were normal. So there was nothing physically wrong with me on the outside.
By my early 30s I have a history of anxiety and depression and a list of “unrelated” symptoms including constant lower back pain, ibs symptoms, painful utination, painful sex etc.
It took me 4 painful years to conceive (and a noticeable miscarriage). I had hypermesis throughout my successful pregnancy. People whom I loved and trusted told me I was “exaggerating” my morning sickness. My struggle with hypermesis is another long and gruling story of more silent suffering.
After my pregnancy my symptoms of endo came on strong. I was extremely fatigued, constant yeast infections, I couldn’t get out of bed and I never felt “ok” until about mid day. I knew something wasn’t right with my body. After 2 more painful miscarriages I bled for almost two months. I was then finally taken seriously.
I had an ultrasound to confirm a tilted uterus and a dermiod cyst on my left ovary. weeks later I had a laparoscopy to confirm endo and my left ovary was removed. The remaining endo scraped clear. (Only to wait for it’s evil return)
I’m still recovering from the surgery as I type this. Endo is truly debilitating. I was unheard for years and I silently suffered. I wish it was different for me and I had help sooner. I hope other women read this and seek help. You know your body best!
EmilyNovember 24, 2016 at 8:34 pm
This is all so interesting…. I’ve had HG (Hyperemesis) & was in hospital a lot, it started at week 5 of my pregnancy and carried on until 2 weeks after the baby was born this year!!! My periods are now back, (although still breast feeding exclusively, they started back within 8 weeks!!) and the ovulation pain, sickness, stabbing pain, exhaustion and stress back too…. I’m worried…. even on the coil my pains would leave me clinging to the office desk crying and my manager insisting I go to the doctors there and then. No pill or contraception type, has worked for me, causing migraine, constant bleeds or achne…. my periods at school age could be so heavy and sore I would have to lay down on a floor as lost so much blood and so much pain (& I was a shy goody two shoes who would never choose to do such things!)
So…. if anyone can help, or if I can be of use for a study, I am keen…. my sister had it without symptoms and has had surgery, but went private to get this… what is in the UK, and how do I help my doctor take this seriously??
AmandaDecember 7, 2016 at 12:21 pm
Hi Emily, thanks for commenting! I’m sorry to hear that you have suffered so much too, it really is life-altering in many, many ways. Keep talking to your doctor – I know there’s often no answer, but never feel you have to just put up with it.
HeleneNovember 20, 2017 at 11:37 am
This is so interesting reading all these comments.
I’ve got stage 4/5 endo, adenomyosis and adhesions surrounding. Also suffered with severe HG for both my pregnancies. It sounds like there really could be a link between hg and endo? If only there was more research on this.
I had my 2nd laparoscopy 3 weeks ago and I’m in more pain now than before the Lap. Not sure why this is. I’ve got to make a decision on treatment and don’t know where to turn bc the side affects all seem so awful. Mirena? Visanne? Hysterectomy ? The pill?
AmandaNovember 21, 2017 at 9:14 pm
thank you for your comment, and I am so sorry to hear how much you are suffering right now – Endo is so hideous! Have you spoken to your doctor about the increased pain? I had pain for a long time after my first laparoscopy, but I didn’t really know any better and so never followed it up. The pain from my second and third ones calmed down much quicker. So if you’re having prolonged or increased pain, do check in with your doctor if you can!
In terms of treatment options, unfortunately there is no right or wrong answer here, and none of them come without negative consequences. I’ve tried most options (in fact I think I’ve tried all options short of a hysterectomy) and the only one I didn’t have major side effects (that were as debilitating as the Endo itself in their own ways) was the Mirena. But I know others have had similar relief from things that haven’t worked for me, and struggled with the Mirena. It really is a case of trial and error to see what works best for you. But it’s never an easy choice.
I really hope you’ve got the support you need to look after yourself as much as possible and make informed choices over your treatment options. Take care xx
ChrissyFebruary 12, 2018 at 3:47 am
I was just diagnosed myself, suffered so many years. Sorry you are going thru it too. I too suffered with severe hyperemesis with all four pregnancies, unfortunately with one loss. Being nauseated with endometriosis is awful, lots of flashbacks to the HG times. Torture! Be well everyone!
AukjeFebruary 24, 2019 at 5:54 am
Hi – what I start wondering reading these posts is whether there is a link between hyperemesis gravidarum and endometriosis. I have endometriosis and adenomyosis and suffered from hyperemesis during my pregnancy.
AmandaFebruary 24, 2019 at 9:27 am
I’m sorry to hear that you’ve suffered with both endometriosis and hyperemesis too.
There is such a massive need for research in this area, and hopefully over time it may start to look at potential links such as whether women who suffer from various gynaecological conditions are more susceptible to suffering from hyperemesis. Unfortunately, I suspect that kind of research is a long way off, as both conditions are poorly funded in terms of research.
There are many women who suffer from hyperemesis, having never heard of it before (so there is no family history of it). There are also many women who suffer from it, having never had any issues with their menstruated cycle either. So it’s always important to remember that whilst there may be a link such as women with a family history of hyperemesis, or a personal history of gynaecological disorders, being more likely to suffer from hypermemesis, we must be careful not to confuse it as a causal link.
You are right, though, it is definitely something we need more research in. Let’s hope that by the time our children have grown up there is more understanding of these conditions.