The pain of living with undiagnosed illness

A series of red Japanese tori gates.

For the last four years I have lived with a third, undiagnosed long term illness.

I have been getting sicker, and this had posed a new set of challenges and complications which could have possibly been triggered by treatment of my first chronic condition.

Living with endometriosis is one thing, but living with an unknown condition is equal parts terrifying, upsetting, frustrating and lonely. You can’t read up on condition websites, you can’t join support groups and there’s no treatment options until you have a name.

I want to raise awareness of the long-term limbo of being undiagnosed, as unfortunately having endometriosis seems to raise our likelihood of developing another long term condition.

Nearly ready for diagnosis

I talked about getting a second diagnosis of Joint Hypermobility Syndrome, well since then I’ve developed symptoms that aren’t endometriosis and aren’t JHS, so it seems another illness is on the cards for me. As soon as I know which one I’ll let you know.

What I can say is that I am closer than ever to knowing what’s wrong, I’d just rather talk about it when the little question mark next to the condition is taken away from my medical notes.

Getting a diagnosis after one condition is even harder

I am a seasoned pro at leaving specialists, remembering my manners when some people don’t deserve any. Thanking them for their time and effort as I leave.

I have lost count of the number of times that a consultant has said they don’t know what’s wrong with me, that I am a complicated case, that they’ve not seen someone with my precise set of symptoms before.

Two doctors have even gone as far to state that I can’t be in the pain in the areas that I am suggesting and my pain must be anxiety related. They then cannot explain how I ace their clinical tests for anxiety. Here’s a clue – it’s because I don’t have anxiety, I’m in pain.

I’ve lost count of the doctors who are so certain about what I have – when I am less convinced. It’s hard not to be cynical of the diagnostic approach at this point. What I can tell you though is that your instincts as a patient are normally right. Sadly, you have no choice but to submit yourself to a barrage of tests at the advice of your doctor to rule things out.

One doctor (when grasping for something to say) told me that at it least it wasn’t a serious problem. This didn’t help. By saying that they were also saying that the problems I already had were not serious (they are to me), and besides, how can they be certain its nothing serious when they don’t know what’s wrong? It makes no sense at all.

As such when I get my diagnosis, it will be a diagnosis of exclusion – so everything else it could possibly be has been ruled out.

The people who should be helping you can make it harder

If you’re in this limbo too then I really feel for you. Perhaps you’re trying to find out your first condition or your third. Either way it’s isolating and lonely.

Doctors want to help but have so many people to help it feels like they focus on the easier cases that have defined care pathways. I have seen more doctors, consultants and physiotherapists in the last three years than I have seen for endometriosis in my seven years of living with it.

I’d rather doctors were honest with me and said when they didn’t know. Rather than guessing and giving me false hope. They go through the same sense of excitement as me in our first appointment, thrilled to try and crack my difficult case. All of them excited when they think they can fix me. A few have called me cynical and negative for not being more open minded about their ideas – which are good ideas. I’ve just had my hopes dashed too often to get excited with them.

In the UK NHS patients face long waits for treatment and referral. Unfortunately I get the impression that some consultants and medical practitioners are finding it harder to believe I am unwell because I am still able to work. No one’s actually said this to me, but its come close to the surface of a couple of occasions, which is flabbergasting.

I am not unfeeling about my pain. I just can’t get upset about it anymore. Even if it would help me get treatment. I know how hard it can be if I fall to pieces because of pain and exhaustion. It might help me get treatment in the short term but it will take so much longer to put myself back together. I can’t afford the time to dwell, so I keep busy and it feels like being penalised out of what is my necessary coping mechanism for pain.

Don’t worry about it?

I don’t like it when people say this either. We can all feel how we want to feel about a situation. Feelings are unique to us so feel however you want to feel about pain and illness – including worrying. Worrying too much isn’t helpful, but a little worry with chronic pain can be helpful, and it will keep you safe, preventing you from physical injury. It’s also understandable to worry when no one can tell you what’s wrong with absolute certainty in the first place.

For example it’s reasonable to worry when walking on a frozen lake – this is not something I recommend at all but it’s a good visual metaphor for pain. We start to walk gingerly on the ice at first, even though others may tell you to speed up, you know what is a comfortable pace for you. Over time (and much testing) you realise that the ice is thick enough to support your weight and you relax, but never enough to forget that you could fall through the ice at any moment.

I want to find what’s wrong because I am worried. I am focused on it in the way that only you can be when it concerns your body.

Lastly, but most importantly, If a doctor or consultant can find nothing wrong with you and you’re still in pain – this does not mean that there isn’t something wrong, the cause just hasn’t been found yet.

About endohope

My name is Michelle B. I've lived with endometriosis and Fibromyalgia for around a decade. I'm trying to live and work with both illnesses as best I can.

7 responses to “The pain of living with undiagnosed illness

  1. I identify with this so much. I’m working on undiagnosed illness as well, which will be my third diagnosis. Everything you said rings so true. Hang in there, because you are certainly not alone.

  2. Jordan

    This has got to be the most helpful, rational and spot on story I have EVER endured in my life!!! Much like you, I live with an “unknown” illness and chronic pain (to say the least). I grew up with an abusive step father that always called everyone hypochondriacs if they expressed any sort of medical abnormalities. In 1986 my mother died a horrible death, after laying in the bath tub for 4 days straight, bloated as if she were 9 months pregnant, my step dad finally took her to the hospital. 2 months later, she died. Cancer had infested every organ from her uterus to colon- kidneys- liver and stomach. My sister (when we were in our 20’s) was a chronic ER goer, always complaining of abdominal pain! I would take her every time, dreading the day someone finally took her seriously and diagnosed her with cancer. In April of 1999, that day came! In a short 5 months she was dead! For all those trips to the ER no one ever “noticed” the grapefruit sized tumor in her 25 year old colon! In 2008, my oldest sister (whom I was not very close with), finally went to the ER, immedietly diagnosed with colon cancer, she revealed that she had been having rectal bleeding for years… although a calastomy could have allowed her to continue being mommy to her 4 very young children, she merely expressed that she couldn’t live like that being 36 years old… unbelievable.
    Me being left with no family (blood family or otherwise), have battled this world alone since 2008! I’m horrified about the abdominal pain I experience and moreso of this “mystery” disease that I live with on a daily basis! Although, much in comparison to Lupis and more so Steven Johnsons Syndrome… still no clear diagnosis nor treatment or relief!
    In 2015, I had an episode of the most excruciating abdominal pain I have ever experienced. It was worse than the worst poopy cramps and yes worse than contractions and labor (I have 4 children)! It was so scary being I was home alone with my children. I remember sitting on the toilet praying for relief, sweating more than I ever had in my life, throwing up in the trash can, shaking and dizzy. Finally able to yell out to my daughter to call her dad or grandma or anyone, I needed immediate help. After arriving at the ER, and being pacified and dismissed with the generic “constipation” etc, I demanded more, something was wrong! They ordered a sonogram and informed me I had a cyst on my ovary… it had burst and there was nothing they could do that the pain would eventually end… a prescription for hydrocodone and off they sent me!
    The same situation occurred last night, and is still going on. Dreading finding care for my children only to merely be dismissed at the ER as constipation… I am forced to go anyway and pray that there is someone who will help me!

  3. Sarah

    Sounds like my case! I was never diagnosed with endometriosis but apparently I’ve had it for 13 years? And now I’ve been tested for everything but ms for my chronic pain. They too say it’s mostly mental. I understand this 100% and wish for one memoment they could feel the pain. And then they would understand.

  4. Renee Janine

    My now 18 yr old daughter was finally properly diagnosed after chronic terrible pain and bleeding since her first period started. Unfortunately she has stage 3 endo, PCOS with insulin resistance and adymosis. She had her first lap for removal of the endo in April 2016 when 17 years old. That’s when she was diagnosed with stage 3 endo. She also had 4 hernias that had to be repaired by a second surgeon. The damage to her uterus has been significant due to the adymosis in her back uterine wall. The suffering continues. Her pain continues also. In November 2016, she started bleeding heavily again and had severe pain (and her pain n never went away, even though they also clipped the sensory nerve to her uterus to try to interrupt pain signal for the adymosis ). She was in for emergency ultrasound, given estrogen tablets for two weeks. It didn’t stop the pain or bleeding so another ultrasound confirmed polyps. She begged for another laprospic surgery. She had her second surgery dec 9, 2016 after her last final exam of her first semester. It Confirmed that she had rare reoccurrence of endo in a large area under bladder and three other areas that were suspicious for Endo in only 7 months. She also had a D&C where three polyps and a large blood clot were removed. This week she started back to school for her 2nd semester. She began having severe pain two days ago and is now bleeding heavily with clots. We are going back to dr for another ultrasound. She is crushed and so am I. I’ve asked for sr dr to consult on her case. It’s bad. Thanks for listening. She has been in birth control patch and previously on depo. Not working. The drs specialize in fertility and endo.

  5. lianahoddinott

    Is it true that endo can only be diagnosed by undergoing surgery?

    I have been told by my Gyni that I should wait until I want to conceive before we find out whether I do in fact have endo.
    I have been suffering for 13+ years, why would it only be neccessary to check if I want to conceive? Surely the fact that I am in constant pain should be enough reason to try and find the fault?

    In any event, I am 30 years old, and should I decide to conceive and I only get diagnosed then, it would delay falling pregnant (up to a year I have heard)

    Your comments and advice would be appreciated.

    • Hi Liana,

      I would advise finding out your endometriosis status. They are probably recommending not to right now to reduce surgery risk, but I – like you – would rather know. You’re right, pain is enough of a reason, don’t stand for excuses that say otherwise.

      A laparoscopy is the gold standard for diagnosis. Endometriosis doesn’t show up on scans and if it does show up on something like an MRI you have to be extremely experienced to be able to spot it.

  6. BDeWitt

    Being diagnosed with a disease that’s incurable has to be one of the most laborious realities to cope with. My fiancée of two years was diagnosed with endometriosis in 2017. Living with this disease means you, and one in ten, make up 6% of women suffering in America.
    Yet, there is still no cure? Personally, I know this has been very hard on her mentally and physically; however, she always wakes up with a big smile on her face which lightens my mood. She has undergone multiple surgeries with doctors telling her the outcome would be positive. After months of independent research, my fiancé and mother, found a highly regarded specialist focusing on endometriosis excision.
    In 2019, my fiancé consulted with an endometriosis specialist and scheduled her surgery. I felt this was a big breakthrough because there was finally a physician that had years of experience specializing in this field and could offer some relief for my fiancé. I find it heartbreaking that there are women suffering without access to any type of relief. It certainly proves if you don’t have the monetary resources to get help, you are not going to receive the help needed to function.
    I feel this disease is very unsupported with funding, and the research is minimal. I would like to see more advocacy and additional funds allocated toward endometriosis research. There could be a possible cure if people and professionals keep advocating and more research could be conducted. We, as men, need to support our women!

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