Coming to terms with your endometriosis diagnosis

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.

Stay positive

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.

You can find out more about how support groups can help endometriosis here.

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.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

23 responses to “Coming to terms with your endometriosis diagnosis

  1. I have lived with Endo for 22yrs only diagnosed at 27yrs old due to my own research. They waited to long to find it and I had deep infiltrating lesions. I have had a really hard time dealing with this disease and all the co-morbid diseases that come with it. Its hard to even talk to people about and I am just so tired of this journey and the will to fight. I dont even know what is causing my pain now, if its endo or something else. This disease truly does suck

    • Thanks for commenting.

      I should add that strictly speaking I’ve had chronic pain since the age of 14 (when my period started) and I’m 27 now. I only really consider the four years when my my endometriosis was “taken seriously” in my endometriosis story. It’s simpler that way.

      But we both know after years of symptoms, pain, fatigue and other problems that endometriosis is far from simple. I can understand and sympathize a great deal of what you have gone through.

      I’ll never forget my consultant reassuring me after my first bout of surgery that this wasn’t “all in my head”. It was comforting sure – but I already knew this, the diagnosis was just an affirmation of what I’ve always known. It was everyone else catching up on what I’d already established myself.

      So, yes this disease does suck, but I personally don’t see the value of letting it define me to the point where I can’t see how to go on. I would urge you to continue fighting and never give up.

      You’ve had the very worst hand from endometriosis, but that doesn’t mean you can’t get better, as you completely deserve to. Keep going.

  2. I know I should be more positive. I guess I get to these points where I am done, I cant go on like this, but reality comes and I know I have to. I have let it control my life and it has put me into a deep depression lately or maybe because of all the meds I am on. There is no value it letting it define me that I know.

    • Yes, we all reach that point from time to time, but as you say it’s very important to keep going. Coping with endometriosis is always, always harder when you let it win the battle of your headspace.

  3. I actually laughed at your comment about carrying around a big backpack of crap. Excellent metaphor for the unbelievable struggle endo is!

  4. I think the word “myth” is a bit strong for the pregnancy cure. It’s not certain, but it does work. My doctor said there’s something like an 80% chance that it will cure endo, and he’s confident it will at least make it less severe. That’s a trained professional and endo specialist talking, not me.

    • Hi Rachel, I appreciate your feedback, and I completely respect it.

      I do still standby my comment though, because conversely I’ve heard endo specialists argue the case against pregnancy curing endometriosis as recently as the endometriosis conference that I went to in October.

      I think you’re right to point that out though, the only certainty is uncertainty in my view. Simply no one knows definitively but..

      As an endometriosis sufferer we have a biological disposition for endometriosis. Whatever that may be in the individual.

      I think there’s good cause for endometriosis to come back after pregnancy. Perhaps some women are cured, and that’s great, but I worry historically (even prior to when the medical world knew what endometriosis was) that women were being encouraged to have children before they were ready as a cure. I’m speaking up against that historical belief which still very much presides in my experience.

      I’ve literally heard “have a baby it cured someone I know with endometriosis” on more than one occasion, we both know that it’s just not that simple.

      I think the same goes for the menopause for what it’s worth. I know it can cure women of endometriosis, but I know that a unfortunate few still struggle after the change. So I try not to assume anything with this illness.

      Hope that didn’t come across in the wrong way, just wanted to explain my thoughts 🙂 Thank you for your comment as always.

      • Well…since I’m currently trying to conceive, I really hope you’re wrong. It’s very upsetting to have put all this time, money, and faith into what I’ve been told is an 80% chance at a cure. I’m not like, mad at you or anything. But I am starting to feel hopelessness setting in.

      • I understand. I think it’s really important to realise that in truth there is no perfect cure for endometriosis, and no treatment should be described with a metric that might make it better than it actually is – after your treatment is the time to decide how well it’s worked and not before.

        That said, I’m really sorry to have caused you any distress with my bluntness about this. I’m trying to think about why your specialist may have said that – perhaps they were talking about your specific circumstances and how you personally had a good chance for recovery. Rather than a blanket statement for all. Is there a good chance that’s what’s happened here? If that’s the case then perhaps they are right. You have a better idea of your personal circumstances than I.

        I did not mean to chisel away at your hope, but I also don’t want to you to have any false hope, that would break my heart too. All I want is for you to get better.

      • Yes, sorry for the freakout. As someone with endo, I’m sure you know all about the joy that is being hormonally emotional. I’m much more calm and rational at the moment, so this comment will be less distressing. Sorry if I’ve distressed you, I didn’t mean to.

        Anyway, when I was relating my overreaction to my husband, he reminded me that my doctor did say that my body specifically was inclined to react well to pregnancy. You hit the nail on the head! During my first surgery he reshaped my uterus a little bit. I wish I could tell you more, but the description of this process made me feel faint and I really don’t remember what he said. But after my second surgery he said the prognosis was much sunnier and it pointed to pregnancy really working wonders since his little tweak had worked better than even he thought.

        This is why you should always see your doc with a buddy, kids. Because when you’re irrationally freaking out about your health, their clear and level head can call back to memory important things like don’t take that medicine with food! Or are you really supposed to be drinking milk missy?

        Again, I apologize for my overdramatic burst of hormonal despair. The bottom line is there is no cure and nothing is certain, all we can do is try different treatments and see what works. I would honestly call pregnancy a treatment before I’d label it a cure – you know, when I’m in a decent state of mind. 😉

        I really cannot apologize enough for crying all over your lovely blog which I’m a big fan of and love a lot. *hugs your blog* I didn’t mean it.

      • Not at all, I was deeply worried I had upset you hugely. I’m so sorry, I think we’re both on the same page though 🙂 Thanks for the blog hug though, I’d rather hug you, damn the distance 🙂

        Yes that’s makes complete sense then, and it goes without saying, but I have all my fingers and toes crossed for you.

        I always take someone with me to all my appointments if I can and if not, I write to write notes preferably during or directly after I have spoken to my doctor or consultant so I can look back on the detail later – it’s proved very comforting many months later.

  5. I am going to put my two cents in. My Endo spread like wild fire after I gave birth to my daughter. Maybe it depends on the degree you have it? I already had stage IV for sure before I was pregnant and pregnancy made it worse. I almost lost my mind after it as well.

  6. Sarah

    I have to say this blog has been amazing to find:)

    I was diagnosed July last year after suffering with symptoms for 13 years.

    Unfortunately the lap has made my symptoms worse and the last year has been horrendous.

    I have tried the normal pill and double dose pill to try and stop my period and decrease symptoms/growth rate. Didn’t help. I had the mirena inserted beginning of this month and my body spat it out after 9 days. I’ve tried all lifestyle/alternative/natural therapies and am having no luck getting it sorted.

    I haven’t had children yet, but want them, so the treatment options are limited.

    Specialist is talking about going in and doing another lap as I have severe pain on my right ovary that’s flared up recently and won’t go away (ultrasound showed tissue was slightly heterogenous, but nil mass/cyst). What are your thoughts on how often laps should be performed and why?

    • The thing with laparoscopies is like all surgeries there are inherent risks, so I suppose the answer depends on the person involved and their quality of life and potential risk to them. I personally think that treatment for endometriosis shouldn’t just be about surgery, but should be a combination of treatments such as pain management and contraception treatments (although the latter wouldn’t help in your case).

      Treatment should (in my view) be about removing as much of the endometriosis from your system, and then doing something long term to reduce it’s presence in your system. There isn’t really a hard and fast rule about how often laparoscopies should be performed, so I would speak to your consultant about the possibility of your next one.

  7. Charity

    Hi I have stage 4 endo, I had surgery in October 2013. I have nausea and pain almost every day is that part of endo?and also very sleepy all the time.

  8. Michelle

    Hi, what a good website – thank you for sharing your experiences. I hope you don’t mind me sharing my story, I’ve recently been diagnosed after I’d say years of painful periods (since 18) but at least 8 years of severe pain and I’m at the stage where I’m processing acceptance of this and struggling a little.

    I’m 35 and throughout have been trying to maintain a full time career often being unwell at work or being sick out of my car on the way to work dosed up on heavy painkillers and at the worst working from home in agony in bed, cancelling on friend etc… I’ve always been quite a positive person and trying to maintain a positive lifestyle after 3 kidney transplants from 9-18 and 10 years on dialysis, that being said my transplant is on the right hand side of my stomach where I also have the endo pain which is also quite difficult as they can’t operate as it’s too dangerous.

    I’m at the angry stage really as I used to visit a colposcopy doctor 6 monthly for invasive tests, I’ve been to see my GP about pain and all I was given was codeine to control the pain which as well all know makes you feel really sick and sleepy and no one diagnosed this!!! Why did they not check? About 8 months ago something shocking happened and the pain was that sever I was screaming for around 3 hours, I couldn’t cope or control the pain, it was horrendous and I hate my husband saw me like that I thought I needed an ambulance – instead he helped get me to the emergency doctors and I was given tramadol which to me was not a long term answer, I didn’t take this as it’s no quality of life taking medication that would ‘knock an elephant out’ and I pushed to see a different gynae doctor a month later. She did some examinations internally and externally and said she could see cysts, my tumour level in my blood CA125 was nearly treble so they were talking about worst case scenario’s – cancer and put me on Microgynon (I’ve stayed away previously as I take enought meds). This pain was clearly my body’s way of screaming out for help! I’ve had pain that’s stopped me in my tracks before but nothing like this ever! Thankfully it’s really helped with the pain is a lot better and the CA125 level came back to normal which she said is a clear indication I have endmetriosis and I’ve had it for years judging by the size and scar tissue and cysts. My specialist struggles to see what’s what due to a kidney being there and all the other scar tissue and two weeks ago I had a MRI which confirmed 2 x 4cm cysts which she says is endmetriosis.

    I think my current anger and it’s not long lasting as I know it’s a wasted emotion stems from this being missed, I’ve had bad diagnosis’ previously and mishaps in care so I can almost cope with this but we tried for two years to have a baby we accepted it wasn’t meant to be and actually adopted a real common sense approach knowing that it could put my transplant at massive risk and basically if I haven’t got this third kidney I haven’t got life so we made the decision to have a good life and not leave my husband and a baby without a wife and mother (said very subjectively, this was a very tough decision as I’m sure you can imagine). However maybe the endo also prevented us conceiving. I’m not dwelling on this I’m just more upset at the years of pain I’ve had, years of attending appointments and possible incompetence (if any). I’m sharing this story just as I’ve been so scared to read on the internet about endo and I’ve had pain and swelling for a week now which is getting me down a little and it’s been good to read a real account of the experiences I’m going through.

    Sorry to hear there are people out there suffering but helpful to also read I’m not on my own and a lot of what you talk about is how I’ve felt, symptoms and good descriptions of what is happening. Thank you

    • Thank you for sharing your story Michelle. I’m sorry you’ve had such a terrible time. Anger is a perfectly normal reaction given the long period of time that this disease takes to diagnose. We all have our individual stories of missed opportunities and things that could have been improved.

      The anger won’t last forever, but it’s important that you replace it with something constructive that helps you with your care. When anger leaves I’ve seen people transition into immense sadness as the anger gives you a feeling of strength for a while. I hope you can use your energy to help the medical professionals around you improve your care and do give anyone you can the feedback on your experience – it really is the only way things are ever going to improve.

      I hope you continue to be as well you can be.

  9. Pingback: Coming to terms with your endometriosis diagnosis | The Girl At Harvey road

  10. Bryanna Lackey

    I find this to be extremely helpful. I definitely agree that relationships are affected by this disorder. I have no one to talk to because people do not believe the severe pain that I am in. Like it is all in my head. I am 23 years old & have been dealing with this since I was 13 years old. Got my first laparoscopy surgery at 17 years old, now I have a consultation on Friday to see if I can get a hysterectomy. Mind you I have two small children 5 years old & 10 months old. I am anxious to feel better. My endometriosis pain is constant, the pain when I have a BM is horrible. I sometimes feel like I am giving birth to a child the pain is so intense. I cry a lot because I feel bad that I am sick all of the time. I cannot pick up my 25lb baby when I have a flare up. I have cut out soda, & most sugar out of my diet.. To see if that helps & to also lose weight.. I also have polycystic ovarian syndrome. Do the diagnoses ever end? 😦

  11. emmaĺ

    How do I find out what stage of endometriosis I have as I have never been told

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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