To many of you, your endometriosis story is still very new. You might still be grappling with what endometriosis is, and how it might impact your life. You might be experiencing symptoms that are new to you, such as abdominal pain or chronic fatigue. You might have a case of suspected endometriosis, or confirmed endometriosis which is causing you no adverse effects at all.
Today I want to speak to those of you who are still coming to terms with your diagnosis, to explain what may, or may not be things to consider and research. Coming to terms with endometriosis, and learning to live with it may not be simple or easy, but crucially it is manageable – and you’re not alone.
I want to talk to you candidly and honestly about what’s ahead – in a rational manner (but importantly with some positivity and pragmatism too).
Find out what you’re dealing with
One of the first things I had to do when I got diagnosed was read what endometriosis was. I spent hours in the days following my diagnosis just reading about what was in store for me.
While many women are very appreciative of the treatment they receive from their healthcare professionals, lots of us found the support they received (directly after their diagnosis) quite poor. Even down to the basics like how to pronounce the word (end-oh-meat-tree-oh-sis) or what causes it.
So get your doctor or consultant to explain what endometriosis is, what the symptoms are, and it’s likely effect on you. Ask all the questions you need. Don’t leave until you have enough information to equip yourself with a sense of the illness.
Doctors only ever explain the medical definition of the problem, but rarely the emotional toil it could have on your body and relationships (but in fairness that’s the doctor’s prerogative). Start with the basic definition, and go from there.
Find out how severe your endometriosis is
The presence of endometriosis is measured in stages (numbered one to four). One is the mildest, four is the severest. These numbers don’t reflect the severity of your symptoms, just how much endometriosis is in your pelvic cavity and where it is. Knowing where the endometriosis is in your body may or may not explain some of the symptoms or pain you experience.
For example. I have stage two endometriosis. So I know from this that I have mild endometriosis presence (but quite severe pain and fatigue). The endometriosis in my case is scattered around my pelvic cavity in lots of different spots, but presents pain only on my left side and down my left leg. I was experiencing pain going to the bathroom, and this was explained by endometriosis in my pouch of douglas and near my bowel.
Bear in mind that your doctor or consultant many not know where your endometriosis is at this stage, only the fact that you’re likely to have it, so this might be a question for later.
I find knowing all the facts about my illness comforting, because I can size it up. Bottom out the extent of the problem and tackle it. You might not be the same, that’s completely up to you.
Research your likely treatment options
Sadly endometriosis is incurable. There are many myths about how you can get rid of it (such as having a child). Truthfully it’s a really complicated (but very common) disease that behaves differently in one woman to another. The ultimate goal is to keep endometriosis growth at bay, to stunt its growth, and to get you back to normal.
You’ll generally only be treated for endometriosis if it’s causing you problems. Many women live with endometriosis with no symptoms (knowingly or unknowingly) for years. Doctors will only intervene when its hampering or affecting your quality of life.
Endometriosis means we have a biological disposition for material to grow outside of the womb where it shouldn’t. Largely speaking there’s no escaping that biological tendency. However there are some strong, proven treatments to assist you through life with endometriosis.
Hopefully you’ll have a great consultant or gynaecologist to talk to. Ask them about your two to five year plan for your treatment. This checks they have:
- A plan to ease you out of the pain/problems you’re having now (this plan for treatment should be based on your fertility plans, age and severity of your symptoms)
- A number of back-up plans should plan A, B and C not work
There is no perfect cure for endometriosis, and obviously there are side effects and risks to each treatment, I’m not qualified to talk about them in any real detail, but largely it boils down to the following.
Hormone treatments such as combined oral contraceptives or hormone injections
Both of these treatments rely on pills, injections or implants that give you a combination of oestrogen and progesterone. This are the two main hormones involved in ovulation and the reproductive cycle. So treatments here involve tricking the body into thinking that it’s either pregnant or entering the menopause to alleviate the endometriosis symptoms.
This works by lessening the blood lost during a period, leading to less bleeding and less inflammation, and ultimately less endometriosis growth.
For example my treatment means I am on the combined pill (Norimin) back-to-back with no breaks, and I also have a Mirena. These two treatments stop my period entirely (to help stop the endometriosis growth). It’s not perfect and there are side effects (such as nausea, bleeding and headaches) but two years into treatment after four years with endometriosis. My pain and quality of life is much better than when I started, and the side effects are slowly waning.
Hormone treatments are often taken in combination with keyhole surgery, to “take away” what exists there now, using the hormone treatments to slow down or stop regrowth.
Keyhole surgery known as a laparoscopy (lap-pow-op-skop-pee)
Surgery performed under general anaesthetic using long, thin tools. A surgeon inflates the pelvic cavity with a little gas and makes a number of small incisions in the abdomen, bellybutton and groin, which form a sort of diamond shape. They use cameras (attached to the ends of the tools) to magnify the area they working on to either cut away or destroy the endometriosis, and any cysts or adhesions (where endometriosis may have caused some of your organs to stick together).
It’s not open surgery and as such has less risk and a speedier recovery time. Most laparoscopies are done as day cases. This procedure is also the gold standard for diagnosis too. This surgery heals up really nicely, and unless I specifically showed you the tiny scars, I doubt the untrained eye could tell I’ve had three.
You can find out more about having and preparing for a laparoscopy here.
Painkillers, lots and lots of painkillers
These may or may not become your best friends. Painkillers are my last resort for a very bad day of endometriosis pain, but many other women rely on painkillers (and very strong ones at that) to keep going each day. Hopefully you’re not in too much pain, or you’re pain free. I wish all of the women I know with endometriosis “good pain-free weeks and days” instead of “luck” or “taking care”. I genuinely hope you I don’t need to ever say this to you.
Treatment takes time
I urge you to have patience when it comes to your treatment. You will be brow-beaten, tired and perhaps desperate before you get better, but remember the facts. Endometriosis is affected by monthly cycles, so truthfully waiting for relief means watching each month pass, seeing how you do with one treatment for a number of months, then waiting through another. There’s no instant cure, only short term relief in those first few months when you first get diagnosis. Getting better is something that has to be worked on carefully and gradually. It will be frustrating, but hopefully you’ll get some comfort from knowing why it could take so long.
This wait is caused by the fact that we all react differently to endometriosis treatment. One woman’s revelation doesn’t dent the symptoms of another. Endometriosis is ruled by stuff like hormones, organs and time, and they are anything from simple.
Endometriosis can effect everything
Sadly endometriosis can bleed into everything you like and enjoy. Simple things like working are effected, key relationships and friendships. All impacted in some small way by this disease. Illness changes us for better or worse. It’s a great litmus test for friendships, but better that the people not worth your time and love leave now, to make room for the incredible people around you that will become your bedrock.
This certainly can’t be boiled down to as something as simple as “mind over matter”, but the mind does have a very important bearing on your recovery. It’s really, really easy to fall apart with endometriosis, or give in and sink. I urge everyone with it to keep their head high, you are still the brilliant, complex and remarkable person you were before. You just have a bigger backpack of crap to carry compared to everyone else. Somehow, between us we find the energy and the will to keep on through each day despite ridiculous odds.
Endometriosis will bring out a genuine tenacity in you that you didn’t know you had. At the heart of this is your emotional core, powered by motion, bootstrapping and willpower. Stop for a instant and it’ll be a hundred times as hard to put yourself back together. I’m not asking you to ignore all the (quite frankly) difficult information above, but I am encouraging you to master it in your own time. Come to terms with the impact endometriosis has on your life, and learn to swing with the punches and you’ll be far better equipped for the long road ahead.
Don’t bottle things up
Talk to people. Don’t be ashamed to start talking to your friends and loved ones about your very real fears and concerns. You need to use the support networks around you to take some of the strain off yourself. Let the words pour out of you when you’re ready, or find somewhere or someone you can trust with it. I can recommend a pain diary to help track your symptoms and treatment. You’ll instantly forget the information at your important appointments, and this information will be useful in the months and years to come. It’ll also be a comfort to you to see how you’ve improved, or what works (however small) compared to when everything was lost and hopeless.
I found starting this website very cathartic. I didn’t feel (even six years down the line) that I had mastered endometriosis until I had created something positive from it. I’m not cured, but I am certainly in a better frame of mind to cope, and start helping other people.
I feel my endometriosis pain all the time, I’ve learnt to live with it, to adjust enough so that I have carved out a new definition of “normal”. I also talk about it often so people are less shocked about chronic illness, and more aware and understanding.
Some specific next steps
If I was diagnosed with endometriosis all over again, here are the things I wish people had told me to try. A lot of these suggestions should be covered in your own time and discussed with your health professional. Some of this advice may be UK-specific.
Find a good doctor and consultant to organise your ongoing treatment
If you’re not happy with the treatment you’re receiving from your GP – find another one and get a second opinion. This is vital for saving yourself a great deal of time. It’s takes an average of ten years for women in the UK to get a diagnosis for endometriosis, and if your doctor isn’t putting you on the right path quickly enough then push back. We know the pain we’re experiencing better than they do, and it’s not good enough that you have to suffer additional pain while some doctor dithers around.
Similarly, find a good consultant (who knows about endometriosis specifically) and your battle is halfway there. Be tenacious, and stay tenacious when it comes to your treatment, you often won’t get the care you deserve unless you fight for it.
Find a local support group
There are lots of women out there with endometriosis, it’s as common in this country as diabetes. The difference is people aren’t talking about it as much as they should. Find your local Endometriosis UK support group.
Speaking to other women with this illness is extremely cathartic and does help. If you’re not near a support group (I’m not either), then try calling their helpline (manned by trained volunteers with endometriosis just like you). Endometriosis UK also run virtual support groups on Skype and run annual information days.
There’s a whole endometriosis community able to support you online on both Facebook and Twitter. We help each other through each day.
Start helping yourself with pain management
When you first become ill with endometriosis there’s an expectation that your doctors alone should fix you. Living with a long-term illness like endometriosis isn’t as simple as handing over your treatment to someone else. Your doctor and consultant can only be with you a certain amount of your time, so it’s really key that as soon as you feel able that you start researching how to self-manage your endometriosis pain to help you help yourself for the rest of the time. Please look at my pain management update here, or read the magnificent Pain Toolkit to get started.
If you’re looking for courses to take, I really recommend the Expert Patients Programme (it’s free).
Getting better is your goal
Illness effects us all in different ways. There will be days when you feel awful, days when you feel like your insides are black, and your heart is heavy with sorrow. This is perfectly normal. It almost always passes, even if it takes hours, weeks or years. Take hope from the fact that you will get better, make it your overriding goal in life. You’ll find yourself appreciating the moments when you are well more than anyone can ever know.
Life is a gift granted against already supreme odds, and those of us with illness have to work that much harder for the rewards, but our rewards are greater than any healthy person can ever appreciate.
That’s when you’ll know you’re getting somewhere, when you slowly see the days where you are well greet you more often – like a old friend – who slowly, but ever so surely guides you back to normality.