I keep meaning to write about alterations I have made to my diet and how I feel better for it and then another idea comes into my head and it is still sitting there waiting and looking sad in my half written folder. Oh dear. Anyway, the reason my food is being bumped yet again is this is Endometriosis Awareness week and as we know, that is one of the gremlins so I felt I had to talk about it and talk about it lots. And lots. Then some more because people DON’T talk about it because OMG PERIODS.
I guess I should start by explaining what endometriosis is and my first reaction is EVIL but that doesn’t really help. Firstly, it is complicated and not the same in every person that develops it. That is a factor that can make it so difficult to diagnose. Most of the time it is a gynaecological condition where mostly cells in the linking of the uterus, called the endometrium, appear outside of the uterine cavity. This causes the sufferer a lot of pain and is often worse during the menstrual cycle and is the most common cause of dysmenorrhoea, a fancy name for painful periods. It can impact those without a womb though, rendering most of this irrelevant, as explained later. Often this is all people will get diagnosed with, painful periods, and packed off being told to take more painkillers. This is a huge problem.
Endometriosis has many symptoms and not every sufferer has every symptom. Pelvic pain is common and can occur at any time and painful and heavy periods are also another common symptom. Other symptoms include pain during sex and urinating, urinating often, throbbing pain in the legs, rectal pain and one of my favourites which is where it feels like someone has shoved their hand up your rear and is trying to pull your insides out. That is not me being funny. The ‘feeling like your innards are being pulled out’ is an officially listed thing. Chronic fatigue, constipation and a higher tendency to develop other auto immune diseases and certain cancers are also known complications. The cycle can become very irregular in menstruating sufferers and the disease is common in fertile patients with a womb. There is no cure but there are various treatments such as pain medication, hormone treatments and surgery. What a barrel of fun right? Not really, which is why people with endometriosis are more likely to have depression too.
For years doctors would only give an official diagnosis if the patient underwent laparoscopy surgery and they could physically see the lumps of endometriosis. However, many people were denied surgery because it is dangerous. As a diabetic, my doctors won’t even have that conversation because the risks outweigh any benefit. My diabetes could easily throw a fit mid operation or I am more at risk of the wound being infected and such. Now, many doctors don’t want to operate but are more likely to diagnose the disease on the basis of a patient reacting to treatment. Non invasive tests such as ultrasounds can diagnose some cases but it takes huge lumps and cysts for it to show up and many can have the worst case of the disease and go undetected on an ultrasound. There is also the fact that cysts form and explode and for many this happens between ultrasounds, leaving no evidence but a lot of pain behind.
A combination of GPs not taking it seriously and society making periods a shameful subject so that many in pain never speak up, the average diagnosis can take up to SEVEN years. And that is only the lucky ones that DO get a diagnosis. So many are living with it and don’t ever get even that. Some people try and fail to get pregnant, are devastated and never see a doctor and get that diagnosis and reason that might aid them a little or the extra support and advice to get pregnant. Some just think ‘periods hurt, get over it’ like many people tell us with a womb and suffer in silence and yet agony when they don’t have to. Periods do hurt but there is a limit and if you cannot function and do daily tasks then you deserve a doctor looking to see if there is anything they can do. There is no cure for this disease but there are many effective treatments. Some are extreme and some are very simple.
The first thing a GP is likely to suggest are pain killers. For a start it can take a while to get your GP to commit to the diagnosis of endometriosis. Many symptoms of endometriosis are mimicked with painful periods but it is important to push if you experience symptoms outside of your actual period. It is easy to snatch at the paracetamol but if you have endometriosis you are better with ibuprofen first. The problem is you have cells that have gone walkabout inflaming parts of your body of anti-inflammatory are going to work better than general pain killers. There is a science based answer there but mostly that is a ‘I’ve been living with this for years and ibuprofen is why I’m still here’ answer. However doctors can give you far stronger painkillers such as mefenamic acid which will get in there and start deflaming things and breaking down the bad guys. They are wonder tablets and I love them. Plus many doctors will still prescribe them to you while you take other treatments. I would say though, if you are taking them alone or with anything else, the minute you see red in your underwear take them. They are not instant but if you can time them they make the world of difference. They are also really damn good on pelvic pain. However, they are huge so if you are someone that has trouble swallowing pills you might want to ask if there is a smaller pill, an alternative or cut them up before trying to swallow! I know they come in tablet form and caplet, both huge but if you find one easier again, just ask.
Most doctors will go to hormonal birth control pills first though, possibly with mefenamic acid or the like or something else. They can regulate your cycle and lighten many people’s periods. A huge thing I hated with my endometriosis before treatment was that I never knew when my period would come. I could go three for four months without a period and then it would appear suddenly and within a couple of hours I would be unable to stand up straight. It was brutal and a source of constant stress because I never knew when it would come. Plus having to run to the bathroom so often to change my pads was a real stress too, and one I’ve seen others have with cups and tampons too. The pill took away that unknown, lightened my flow when it did come, and took away so much of the pain for a while. The thing is, endometriosis seems to adapt and some treatments only work for so long. Changing pills is common and if you do take the pill and find it doesn’t help, say something! It is absolutely your right to speak up. Just because it isn’t as bad as it was without the pill doesn’t mean you have to go on in pain. I moved on to depo provera injections after the pill’s effectiveness wore off. I was referred from my GP to a gynaecologist which while common in many countries is srs bsns in the UK. They felt injections would tackle more of my symptoms but it is all about personal preference. These injections are received every three months and work as a birth control but also manages endometriosis. Many people stop having periods when on the injections or have fewer periods. The majority certainly are not in as much pain and it generally gets good feedback on combating the chronic hip pain many experience so if that is your personal issue, I advise talking to your doctor about it. It is why my gynaecologist felt I’d be better on the injections. I do get some spotting towards the end of an injections run but that is as close as I get to a period and requires no more than a panty liner every few hours to deal with. It doesn’t really hurt either. It becomes more a mild inconvenience which is a new and wonderful feeling. Another hormonal treatment is a form of implant that goes into the womb itself. I have very narrow cervix so I pretty much rejected that the moment it was mentioned because it can be uncomfortable to receive. However it is active for longer, protects against pregnancy and many people with endometriosis report good results with it and it is definitely worth looking into. Of course all of these treatments come with their negatives. Make sure you research these negatives and have a good chat with your doctor about how common they are how willing you are to weigh up the pros and cons of each treatment.
Of course, the more drastic treatments are surgery. This can include a Laparoscopy where a surgeon uses keyhole surgery to open up the area in question and can see and at times remove endometriosis cells or cysts. The problem there is with that is one, not all these cells can be seen by the human eye and two these cells can simply reform. It can be a permanent solution for some, last years for others and prove very temporary for others again. It depends on your womb and your lining and how aggressive your endometriosis is. Another surgical treatment is a hysterectomy where the womb itself is removed, thus removing the cause of the endometriosis and the painful cells. This of course renders a woman infertile and unable to carry a pregnancy, and is a serious decision for the individual but it is an option that is there.
I have left it to last because I think it is the treatment that people with a womb may find scary and most intimidating and that is the option to use hormonal treatments to trigger the menopause. Some sufferers of endometriosis have physical and mental symptoms with some finding themselves unable to control their emotions, understand their emotions and struggling to connect with others because of their emotional outbursts. Forcing the menopause can stop the menstrual cycle and production of new endometrium cells that cause the pain and also help regulate hormone irregularities people are suffering with. Of course, this has to be done with hormone replacements but for people who feel very much out of control or out of balance this can be an option and a shining light.
As a side note, I do know that for many religion is a factor when it comes to birth control and birth control is often the easiest treatment to receive for this disease. I respect that many will not want to engage with birth control methods and to them I cannot rate mefenamic acid highly enough. It is just a painkiller. I really feel it does wonders when I am in pain and if that is all you feel you can consider, look it up and check it out.
For those that don’t want to take any medications? Heat pads. There are heat pads that are expensive and last hours or you can splash out £20 on one that you can wrap around yourself and put in the microwave. My own one lasts 8 hours and goes unnoticed under my clothes as I go about my business. Life safer.
So basically, endometriosis is a horrible disease and it often impacts on everyday life. People don’t know when they will get shooting pains in their rectum, stomach, hips, or ovaries. Many people with this disease can tell you exactly where their ovaries are and when they ovulate because they feel chronic pain when they do so. Chronic bouts of pain can happen at any time and with no warning. It is hard to explain anything when in such pain but harder still when it involves the womb or the results of other medications. It is harder still when perhaps you are an individual no one would expect to have a period and the associated pain. Trans* men and gender queer people may find it very difficult to live with or explain this disease and general ignorance of it as a whole make it all the harder. Periods can be unpredictable and can leave people bedridden when they do come. Plus, people don’t know about it and when they hear a little they certainly don’t want to talk about it. A period is merely a sign that certain people’s bodies are attempting to ready themselves to conceive a child. That is it. It doesn’t say that you can, will or want to. Yet, we create such shame around them. From the moment a person starts their cycle it is something to hide, not to mention, and consequently to be ashamed of. Think of high school. Did you ever see someone look at the clock, realise the time and pull a tampon or pad from their bag before asking to be excused? I think few of us have that experience because people slide things up their sleeves, rush off to lockers or end up with too much blood in one sitting because they are shamed into doing nothing when they need to. How many people have taken a detention without a word for being late to class when they had to change a pad, a tampon or empty a cup? I know I did. Periods come with shame and silence and that is why there is 1 in 10 with a womb diagnosed with this disease and 1 in 4 suspected of actually having it. That is why it takes seven years of pain, cysts and damage to fertility for people to receive help.
That is not acceptable.
Another important thing with this disease is that it does not solely effect people with a womb. Some people treated for certain cancers can develop endometriosis as a side effect. I am not overly knowledgeable on this but I just want to state that it is possible, and can be just as painful. There is not enough information out there though for those that may develop this disease as a consequence and there is a lot of shame around it. There shouldn’t be.
There are options, treatments and there is the reality that we will always suffer in one way or another. It might be that the treatment doesn’t rid of us of all the pain between periods and it might be taking hormone replacements for the rest of our lives because we had to have a hysterectomy. There is no true happy ending but there is a light at the end of the tunnel and there are many options.
However talking about it as people with the disease is one thing. We need to talk about these things in general to make steps forward though. We need to remove the stigma of periods and period pain. We need to recognise that periods can be painful and difficult and require time off work, many painkillers and a lot of support. We need to allow people to say ‘I’m having a heavy month and it is difficult’ and ‘I need to sit down, I’m losing so much it makes me lightheaded’ and not be judged for these natural occurrences. People DO everything they can I’m sure. No one wants to have everyone looking at them for passing out over blood loss. People take iron tablets and more painkillers than the packets say and hassle doctors. They try. We need periods to be normal so that pain can be normal and abnormal periods can be spoken about. We need to know that athlete had a heavy period when they won that gold medal or that singer thought about pulling out that concert due to cramps. Periods, menstruation, wombs and endometriosis are not things to be ashamed of or pitied for. I spent so many years lying to my diabetic doctors insisting my cycle was normal when maybe if I had admitted I was so irregular and in pain and spoken against my mother saying period pain is normal they might have clicked and I might have been treated earlier They are challenges we need to take and we need support to do that but we can. We can take those challenges and we can do it. Whether that doing it is getting out of bed one day earlier than you thought or making it to work every day you bled or being able to go to the doctor after cancer treatment and talk about this new pain you have developed. We can do it. All of us.
The pillow fort is a great place for people with chronic illness, as endometrioses is, so I’d encourage you to check it out. It can provide a real sense of support and a cheerful brightly coloured website to go to on bad days. They also have a FB community of Pillow Fighters which again, provides so much support and a right laugh too. Plus they sell all sorts of heat pads which are wonder to those with endometriosis as well as other chronic illness inspired treats. Great site, great mag, worth a shout.